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Dad just diagnosed. Need advice

User
Posted 15 Jul 2020 at 22:26

Hi there,

I have been following the conversations on here for some time now, whilst my dad was going through the stages of being diagnosed. We got the call today to confirm prostate cancer.

Just to give some details. My dad is a fit and active 77 year old. He has no symptoms. Went for a routine blood check. PSA was 11.2. MRI showed 2 areas of suspicion, on either side of the prostate. Biopsy results are 3+4 (7). Consultant said it is T2C N0 Mx

He is pushing for dad to start hormone therapy (tablets for 2 weeks). Then 3 monthly injections ( for about 2 years). And radiotherapy in about 3 months time.

He didn't want to give me the % of cancer found in each core. I didn't find him mega forthcoming.

From the research i have done, i thought active suvillance could be an option for dad. However, he said he wouldn't be really keen on it and wants to start dad on a curative route.

I asked about radiotherapy alone as i i thought this could be possible with an intermediate risk cancer, but again he said no. Had to be both, hormone therapy and radiotherapy.

 

Could anyone give any advice at all? I just thought with a localised intermediate risk cancer, we would have active suvillance or just radiotherapy as an option?

Thank you!

User
Posted 16 Jul 2020 at 10:04

Hi SR12,

The consultant not giving you all the information you requested is unreasonable. Your dad can request his medical records from the hospital, it is quite a simple procedure to do this, then you can see everything. 

There is a tendancy when diagnosed to opt for the most aggressive treatment such as surgery, I'm glad that you have started thinking about the least aggressive treatment first  ie. Active Surveillance.

As your dad is otherwise healthy at 77 he potentially has about a decade of good quality life ahead of him. With the diagnosis you have quoted I think the cancer would advance and become troublesome within a couple of years it would then be much harder to treat.

So on balance I think the consultant is giving good advice. RT is found to work much better with Hormone treatment. The combined treatment is not too unpleasant, though he can forget about a sex life whilst on the treatment and may take a long time to recover.

Once he has had 3 months hormone and then RT he will remain on three monthly hormone injections for about two years. I have seen some articles suggesting 18 months is just as effective.

I would not advise going against medical advice, but if your dad found the effects of hormone treatment too unpleasant he could stop it anytime he liked, it would still take him several months to recover sexual function (some never recover) and he would increase the risk that the cancer is not eliminated.

So I think if I were in your dad's position I would accept the treatment and if it is tolerable go the whole course. 

BTW was brachytherapy offered? It is more invasive, but does give the prostate a high dose of radiation. 

Dave

User
Posted 18 Jul 2020 at 09:24
I am 76. I won`t go into loads of detail. My PSA level was 8.9 when diagnosed. Earlier this month I had next PSA test after 3 months of HT & 2nd injection. My PSA level was down to 0.8. I was given choice of HT & RT or AS at diagnosis. No way was I going to go for AS. So far, I have had a few hot flushes but they only last a very short time & do not affect me. I do feel a bit tired but at my age I expect to !.

I played golf 3 times a week but my MRI scan also showed that I had partly slipped disc so not playing until that is sorted. I bought a set of exercise bands to do light workout & that is helping my muscle mass I think. Really, HT has not had any effect on me. I will be starting my RT in October, after my 3rd injection. Only thing I`m not looking forward to is all the driving.

So far, I am very happy with the decision I made as I feel something is being done.

User
Posted 26 May 2022 at 23:00

Originally Posted by: Online Community Member

Spoke to soon, dad mentioned hot flushes today! He said he gets a lot of them only at night...

In your previous post when you said he hadn't complained lately, I was thinking of asking if you'd checked if he was still alive.

Dave

User
Posted 16 Jul 2020 at 14:31

In some classifications, T2c is regarded as high risk...

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/localised-prostate-cancer 

https://prostatecanceruk.org/prostate-information/just-diagnosed/what-do-my-test-results-mean

 

I find it odd that they wouldn't tell you the %. Was it because it was you and not your dad? Was it a phone call or in person?

When I got my diagnosis (in person) I asked the nurse for a printout of the results and she did it straight away.

Despite the above, it does sound as if he has been given sensible advice as regards treatment. Since he's 77, surgery might be a bit of a big hit. HT/RT seems like a more sensible choice. Brachy will probably not be offered if the cancer is too big. I was told surgery or HT/RT with Gleason 7 (4+3) and T2a because the tumours were too large for brachy.

 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 16 Jul 2020 at 23:43

Hi all,

This is the first time i am replying so I hope i have clicked on the correct bit and it will get posted!

Thank you so so much for getting back to me. Thank your for the links. I read them all and have passed it to dad.

When the consultant called yesterday, we had the phone on loudspeaker, my dad was there too. However, the consultant was reluctant to give to much information.

Today the McMillan Nurse called, she was much more helpful. She said there are two tumours, one on each side of the prostate on the transitional zone ( we have a copy of the MRI report at home so i read this on there). No sign of lymph node or spread. They staged it at T2C because there are tumours on either side. She said something like out of 4 cores, 2 came back with cancer. Volume of 15%. This is a bit confusing for me as i was under the impression that 20 cores were taken at the time.

Apparently their NHS Trust does not advise on AS and does recommend treatment.

We have requested a copy of the pathology report and all the documents from the GP so we can seek a 2nd opinion on this. Although from the sounds of it, i think dad may need to start treatment.

He is really worried about the side effects of the HT ( i don't think he is too bothered about his sex life!) But more worried about hot flushes, weight gain, fatigue. 

Also i see the consultant has left it up to the GP to decide on what injection to give dad. He has listed the options. Any idea which injection has the least side effects? 

We really feel we need some time to research and seek another opinion before starting treatment. Does anyone know if waiting a bit ( a few weeks) is risky with regards to the cancer growing?

We are totally shocked by this diagnosis, i think it is more the word "cancer". We are trying to digest it all and find the best way forward for dad.

Really appreciate your replies and it is so wonderful to have this supportive community. We had a lovely volunteer call dad today too who spoke about his experience on AS.

Thank you so much.

 

User
Posted 17 Jul 2020 at 01:44

Hi SR12,

Good to hear from you again, and I'm glad your doing some sensible research on this disease.

The biopsy doesn't quite make sense, but it is easy to mis hear things, with so many numbers. It may have been cancer in 4 cores and 2 had a maximum of 15%, or some other combination. Anyway whatever the numbers it is clearly a moderate amount of cancer, but not a massive amount.

Waiting a few weeks will probably not make any difference, the cancer may have been there several years already and be growing very slowly, so a few weeks won't make a difference. 

Maybe gathering all the information together, not starting HT yet and having a further psa test in a few weeks, will help you decide? if the psa has gone up it would suggest treatment is required if it stayed the same maybe you postpone; effectively you would have taken on Active Surveillance almost by default and against the advice of the consultant. 

I think all HT injections do roughly the same thing so I suspect the side effects will be the same whichever he has. The side effects may not be as severe as he expects, everyone is different so until he is on HT he won't know if it is troublesome for him. If he really can't stand HT he will just have to stop, it will take a minimum of three months to get the drug out the system so he will have to endure the side effects for a while.

I've been on HT for two years, I'm  glad to be coming off it now but it wasn't too bad for me being on it. 

 

Edited by member 17 Jul 2020 at 08:29  | Reason: Not specified

Dave

User
Posted 17 Jul 2020 at 09:27

Hi Dave,

Thanks for your reply.

So happy that your treatment is coming to an end! I read your profile and the treatment plan sounds similar to my dads.

What sort of side effects did you experience?

My dads PSA levels have been on an upward trend since around 2010. However, what happened was because dad was diagnosed with an enlarged prostate, he was put on finasteride, so around 2015 his PSA droped down. We did not know at the time that this is because of finasteride, so we just assumed it was OK. The GP never picked up on it either.

His most recent reading was 5.2 hence the referral. The consultant called and explained the adjusted reading is 11.2. 

It is a shame AS is not an opinion for a few more years. Although, i i feel we were doing AS ourselves since 2010, without realising it!

Hopefully the GP will give us the records and we can seek a 2nd opinion. On the NICE website, i am sure it states intermediate risk cancers can be considered for AS. But perhaps there is more involved than just the TNM grade.

This is all so new to us, so trying to learn and do a crash course on it!

 

Lovely to be on here and have some support. 

User
Posted 17 Jul 2020 at 11:47

Hi,

You are correct you have been doing AS for ten years without realising it. The finasteride does confuse matters, but I think we will go with the generally accepted wisdom that real PSA is about double the measured PSA when on finasteride.

With AS the objective is to keep monitoring until some threshold is reached and then to move to a more aggressive treatment. I think the consultant would argue that threshold has now been reached.

The fact this cancer has been progressing slowly over the last decade suggests an extra few weeks(months, years?) to decide will not be a great risk to his survival.

I did not have many side effects from HT: no libido, and impotency (not a problem when you have no libido), dry orgasm, some hot sweats but not many (perhaps once or twice a month and they only lasted a few minutes), a more emotional personality, perhaps a little more irratable (none of these were massive changes in my personality but I think they were because of HT), not much change in weight, perhaps a little less muscle mass and a little more fat, but not much either way. I have been off HT for about 3 months now, I would not say I have made much of a recovery yet, I hope that over the next year things will improve. The statistics for RT and HT together are quite impressive, the major benefit of the HT is in the few months before and after RT the second year of HT may not be adding that much to your dad's chances of survival, so maybe he should just stop it early if he doesn't like it.

If the cancer becomes advanced then HT can become a lifelong treatment, I would not like to be in that position. 

You will find a few people on this site who have had treatments which have failed and have now decided that Quality Of Life (QOL) is more important than pursuing an extra few years of life.

The following is an interesting tool from the NHS it takes a bit of playing with, and at the bottom you will see the results can be displayed as "Curves" and you will want to tick the "Radical" box to see all information:    

https://prostate.predict.nhs.uk/tool

For your dad's details (I have had to guess a few things) it says your dad's chances of surviving 15 year (i.e. to age 92) would be about 28% if he had never been diagnosed with cancer, 21% if you did not opt for any treatment, and 24% if you opted for radical treatment (surgery, or RT outcomes are about the same).

Another way of looking at this is to look at the curves and see how many years until 50% of people currently your dad's age will die, this is what would normally be called life expectancy. If your dad had never been diagnosed with cancer his life expectancy would be another 12 years, if you do nothing his life expectancy would be about 10.5 years (the last year or two may be painful), if you go for radical treatment his life expectancy is about 11 years (and probably only painful for the last few months).

I don't know how accurate the NHS tool is and everybody is different. I think I would advice your dad to take up motorcycling and parachute jumping both will increase his chances of dying from something other than prostate cancer.

Edited by member 17 Jul 2020 at 11:56  | Reason: Not specified

Dave

User
Posted 18 Jul 2020 at 09:25
The perineural invasion rules out AS as far as the NHS guidance is concerned, I think.

My father in law was diagnosed with a T2 G7(3+4) at the age of 79 and chose AS because he was concerned about his sex life (with a wife nearly 20 years his junior). He lived for 4 years. Most of that 4 years was very settled and happy, he had no symptoms to speak of and spent the month before he died camping in France in a new tent. There was no indication that it had spread to his major organs until 24 hours before he died. We might have preferred for him to have treatment and stay around for longer but we had to respect his right to choose.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jul 2020 at 12:14

OK thank you so much. The internet is driving me mad. But I can't seem to stop googling stuff!

We haven't even met the oncologist. Is this normal? We got the cancer diagnosis on the phone, was told to start bicalutamide then contact GP for the injections. Oncologist appointment won't be until Oct/Nov time. That will be the first time of meeting her.

I hope this is normal...

User
Posted 21 Jul 2020 at 21:37

Thank you Alex.

Yes makes sense because of dads age. The op is out of the question. Just hope HT and RT  work out for him.

He took the first pill of bicalutamide this afternoon after lunch and instantly got a headache. I called the Macmillan nurse. She said to take paracetamol. This made him feel better. A few hours later he felt really unsteady and light headed. He took a nap then was ok. This was just day 1! Hope he will be OK and hoping his body will adjust.

You have done so well since your op! 3 days is just around the corner. Weather is so lovely too! Bet you can't wait.

Yes the internet has a lot of negative stuff. People do recover and survive many cancers. I have a friend who has been free of stomach cancer for 10 years now! Just wish we could hear more of the sucess stories too.

 

Hope, is all we have... and in the meantime we must try and enjoy life too!

 

User
Posted 20 Oct 2020 at 17:12

Hi. Regarding lockdowns just to say I had all 20 of my RT sessions during the big lockdown earlier this year.  The hospital would be very unwilling to interrupt your dad's treatment once it has started so I think you can rest assured it will proceed as normal even if another lockdown is imposed.

Once you get into the routine you'll be amazed how quickly they go.

best wishes

Stephen

User
Posted 20 Dec 2020 at 18:30

I find a nice long, hot bath, of Magnesium salts, Dead sea salts, (Home bargains) Aldi bath blue & some white almond milk cream bath - works wonders to help you sleep & less likelihood of frequent night time widdles.

Edited by member 20 Dec 2020 at 18:40  | Reason: Not specified

User
Posted 20 Dec 2020 at 19:47
I find not drinking three pints just before bedtime helps too.
User
Posted 20 Dec 2020 at 22:11

Originally Posted by: Online Community Member

Oh wow! I think i need this bath myself! Thank you Bob. Il pass it on to dad.

 

My lady, & I find this secret formula (no longer!) works very well 😅

User
Posted 21 Dec 2020 at 18:01

Originally Posted by: Online Community Member

Oo LOL! Yep that is true. There will be a shortage of dead sea salts soon!

 

 

 

Boris will have to get fingers out, & get Dover open again....😄

User
Posted 26 Jan 2021 at 19:32
It may start to rise gently over the next few months but the RT continues to work for about 18 months. Your dad's onco will be looking for the PSA to stay below 2.01
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jul 2021 at 11:00

Originally Posted by: Online Community Member

I refused to go through it again and asked for the CT version of the scan... sent me a bottle of liquid... The effect was worse than the original preparation drink.🥴.

"we've got an awkward customer here, let's put double the laxatives in the potion"

Glad it turned out OK in the end. 

Dave

User
Posted 20 Jul 2021 at 17:31

Originally Posted by: Online Community Member

Sorry, Bob, to hear of your cancellation as I can empathize with all the prep  (especially taking the powder that virtually forces you to sit on the toilet for 15 or so hours whilst emptying your bowels) that you had to do to be ready for the colonoscopy. That was the worse for me when I underwent a colonoscopy in 2018. My procedure was carried out at Addenbrookes and though I was not looking forward to it, the reality for me was that it was a piece of cake. I didn't even know that they had started and when I asked the consultant when they were going to start he drew my attention to the monitor,  which showed the tube about halfway up my colon. I was being "fed" pure oxygen from a device clipped under my nose which, I think, made me quite high and oblivious of what was going on.

 

The result of the colonoscopy was there was no cancer, just piles.

Thanks - I'm going to ring them this time, BEFORE I start the prep, find out if it is likely to be messed up again - especially as the "Slaves to the NHS AP" are dissapearing from duty in droves.

User
Posted 27 Jul 2021 at 11:39

Originally Posted by: Online Community Member

Good luck with the Sigmanoscopy Bob. Please keep us posted. They best not cancel this time round!


I rung them yesterday afternoon, & they said it should go ahead this time!

We will see.... I had the Covid test, yesterday morning - why do they call it the Covid swab, I wonder? 

It's a PCR test, like any other!

Point of commitment for me tonight after Dinner - first Lax tablets!, Wed very restricted diet & more Lax, Thurs morning at 9, the Camera! SMILE.......

User
Posted 29 Jul 2021 at 15:07

Originally Posted by: Online Community Member

Yes, agree. Covid really messed NHS up. Dad gets a lot of bleeding, i think its a side effect from RT. Pls do keep us posted.

 

Had the Camera today. Diagnosed Radiation Colititis, Treated with Argon beam diathermy. More in 3 months,  or Piles banding, they did not do them today. He said it often happens following RT.

Bit sore down under this afternoon....

User
Posted 03 Aug 2021 at 09:44

Originally Posted by: Online Community Member

Hope you have recovered now Bob. Hopefully less windy lol! Dad isn't looking forward to the procedure. Shall message once we know more and also with blood results.

 

Good morning.

Still a bit tender, down there - so far, no blood - which is good news, as they warned there might be for a day or so. I hope it stays that way!

He said this was quite common, following RT - which weakens the veins in that area.

User
Posted 23 Feb 2022 at 08:27

Tina,

it's not possible to answer some of your questions until there's more information from the oncologist but with a Gleason score of 7 and a psa below 7 there is every reason to anticipate a good outcome.

Urinary incontinence is unlikely to be a debilitating problem in the long term with radio therapy and hormone therapy.

A spacer like Spaceoar might be recommended but in most cases it's not needed. While they can help in some situations, they aren't without risk. Don't feel you have to spend vast amounts of money for this and only choose it if it seems to be absolutely necessary.

Fiducial markers, like gold seeds, are a help with locating the prostate accurately for each round of radiotherapy. It's probably a good sign if your oncologist recommends these.

RT is definitely tiring, though once your dad starts on his treatment the stress of not knowing what the future might bring changes into managing life as it is. More relevant will probably be the fact that he'll have to deal with hormone therapy for some time after the RT. Loss of libido, fatigue, hot sweats and mood swings are characteristic changes. They inevitably vary from person to person, though with time they can be managed ok.

For comparison, I'm 74, had a Gleason 9 with mets in nearby glands. Had RT followed by HT and am now about a year past RT and half way through HT. I'll be glad to get out the other end of this process but my ongoing psa levels have been extremely low and the future looks good.

I suggest you start your own thread, even though I didn't follow my own advice.

 

Jules

User
Posted 06 Jun 2022 at 23:03

Hi, yes last appointment was Jan 22 and next is Jan 23. The July 21 result was the first PSA after the HT had left my system it is 0.2 and the Jan 22 result was 0.1 so an even better result.

As our meetings are always brief, as I have very few problems, she (and I) don't see much point in wasting our time with meetings. However if I have any problems I can just call them and arrange an appointment.

She has told me to arrange a PSA test at six months (July) and contact them if there is a problem.

If I had a history of problems or if she were worried that I wouldn't speak up them, I guess I would have had a six month review.

I'm glad your dad is doing ok and nothing exciting is happening. I never want to be someone an oncologist is interested in.

Dave

User
Posted 17 Aug 2022 at 14:09
Brilliant
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Feb 2023 at 16:56

Very good news. Two and a half years since your first post and it looks like things are going very well.

Dave

User
Posted 14 Feb 2023 at 17:43
Great news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Feb 2023 at 11:15

Originally Posted by: Online Community Member

Just a question. Dad had PSA done on 13th Feb. Oncology appointment was for 14th March. He is away in between. We just received a letter to say Oncology appointment has been changed to 18th April. That is nearly 2 months after PSA test. Does dad need to have another PSA test done before April's appointment? I doubt a lot will change in that time but i guess you never know... Any advice?

Thank you!


I would contact Onco or secretary & ask - I usually get my blood test done a week or two before the appointment.
Now I don't actually have an appointment, just a letter to say All OK a few days later. But I have the option to contact them at any time if I have concerns.

User
Posted 28 Sep 2023 at 21:17

It does seem high in some respects. Just towards the end of my appointments I asked the CNS what threshold might be appropriate, she looked at my notes and said 'your consultant is John xxxxx, he doesn't usually start treatment again until it gets to 10'. Now that is a high threshold, but in reality I would be contacting them again at 2.1 and in truth, I would probably contact them a lot earlier than that if there was a clear pattern of exponential increase in PSA.

However, your dad is 80, so how old will he be if it does get to 4.5 and if he has no symptoms would it be worth decreasing his quality of life for a marginal increase in length of life.

With his current PSA I doubt he will ever have trouble from prostate cancer again, but whatever happens keep posting here once ever six months. The people who post on here a decade after treatment give the more accurate picture of the disease.

Dave

User
Posted 05 Dec 2023 at 08:33
a PSA of 4, following RT & HT I would think a bit high - but then, I'm no expert.

I cannot understand why men are not offered a PSA test over a certain age &/or if there is a family history of PC.

Provided the man, keeps away from being "Naughty" for 7 days before the test, I think it's pretty accurate.

For any chaps reading this, provided there is a choice between removal or HT/RT - I would go for the latter, every time - less invasive & you are still a bit more "Intact".

All the very best.

User
Posted 19 Mar 2024 at 16:33

Hello! Hope everyone is keeping well. Been a while! Dad had his 6 monthly PSA. Stayed the same as last one 0.03. 

So far all good. Next one in 6 months again. 

Hope everyone else is doing well. Nearly spring!

 

User
Posted 19 Mar 2024 at 18:08
Great result. Long may it continue
User
Posted 22 Mar 2024 at 09:09

Great to hear from you Bob and Dave! Bob, yes agreed. Early diagnosis is key. Lets hope PSA is always on the lower side, although i never take anything for granted.

Dave, how are you doing? Any more PSA since the last one?

User
Posted 22 Mar 2024 at 12:53
👏👏👏
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Apr 2024 at 07:49

I am 78 and had my prostate removed on 01/11/2024. By 31/01 2024 I was back running training for a half marathon. I am fully continent. I was told that the operation was not available to men over 75 but insisted on meeting the surgeon to discuss my overall fitness. The surgeon agreed to do the operation. The best decision I have ever made.

Show Most Thanked Posts
User
Posted 16 Jul 2020 at 07:36

SR12

I am sure some of our knowledgeable members will be along to help. Might be worth a call to one the specialist nurses, the number is at the top of the page. 

Thanks Chris

User
Posted 16 Jul 2020 at 09:00

Hi SR12, welcome to the community, sorry to read about your Dad’s diagnosis.

Although his cancer is still contained within the prostate, the T2c staging means it is at the edge of the capsule and in danger of escaping the prostate next.

Starting hormone therapy now will stop the cancer escaping by starving the cancer of testosterone which it uses as a fuel to grow. The hormone therapy will also weaken the cancer and make radiotherapy work more effectively.

I think it sounds like he is on the best treatment path for him.

This website has lots of helpful publications, here is one which might be of use

https://prostatecanceruk.org/media/2498706/prostate-cancer-a-guide-for-men-whove-just-been-diagnosed_ifm.pdf

Best wishes to you and your Dad,

 

 

 

Ido4

User
Posted 16 Jul 2020 at 10:04

Hi SR12,

The consultant not giving you all the information you requested is unreasonable. Your dad can request his medical records from the hospital, it is quite a simple procedure to do this, then you can see everything. 

There is a tendancy when diagnosed to opt for the most aggressive treatment such as surgery, I'm glad that you have started thinking about the least aggressive treatment first  ie. Active Surveillance.

As your dad is otherwise healthy at 77 he potentially has about a decade of good quality life ahead of him. With the diagnosis you have quoted I think the cancer would advance and become troublesome within a couple of years it would then be much harder to treat.

So on balance I think the consultant is giving good advice. RT is found to work much better with Hormone treatment. The combined treatment is not too unpleasant, though he can forget about a sex life whilst on the treatment and may take a long time to recover.

Once he has had 3 months hormone and then RT he will remain on three monthly hormone injections for about two years. I have seen some articles suggesting 18 months is just as effective.

I would not advise going against medical advice, but if your dad found the effects of hormone treatment too unpleasant he could stop it anytime he liked, it would still take him several months to recover sexual function (some never recover) and he would increase the risk that the cancer is not eliminated.

So I think if I were in your dad's position I would accept the treatment and if it is tolerable go the whole course. 

BTW was brachytherapy offered? It is more invasive, but does give the prostate a high dose of radiation. 

Dave

User
Posted 16 Jul 2020 at 12:38

Hi

Maybe and idea to formally request the full biopsy lab results. I didn’t get mine initially and had to request them directly from my consultants secretary.

Sounds like a reasonable treatment plan but any concerns.....it’s easier than you think to get a second opinion. 

TG

User
Posted 16 Jul 2020 at 14:31

In some classifications, T2c is regarded as high risk...

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/localised-prostate-cancer 

https://prostatecanceruk.org/prostate-information/just-diagnosed/what-do-my-test-results-mean

 

I find it odd that they wouldn't tell you the %. Was it because it was you and not your dad? Was it a phone call or in person?

When I got my diagnosis (in person) I asked the nurse for a printout of the results and she did it straight away.

Despite the above, it does sound as if he has been given sensible advice as regards treatment. Since he's 77, surgery might be a bit of a big hit. HT/RT seems like a more sensible choice. Brachy will probably not be offered if the cancer is too big. I was told surgery or HT/RT with Gleason 7 (4+3) and T2a because the tumours were too large for brachy.

 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 16 Jul 2020 at 14:50
Don't underestimate the impact of hormone therapy on his QOL. If he is happy with no sex (probably ever) then the treatment path is reasonable.

I would be inclined to get a second opinion if only for the fact you seem to have a bolshie consultant. It may even be worth waiting 3 months and getting another scan before deciding.

User
Posted 16 Jul 2020 at 20:48

Hi SR12,

Get full results then make informed decision.  My understanding T2C does NOT indicate position of lesion or lesions at all, only in both lobes.

AS as you elude to could be a perfectly viable option.

Regards Gordon

User
Posted 16 Jul 2020 at 22:16
No but a T2c is intermediate to high risk rather than low risk so not suitable for AS. It could be a T2a and still be close to the edge.

The urologist isn't obliged to give any information to a relative unless they have a written request from the patient to do so; perhaps if Dad asks, the urologist will provide the information. But does dad actually want to know about the number of positive cores, % of each core, etc?

No point waiting three months and asking for another scan if he has already started on the hormones.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2020 at 23:43

Hi all,

This is the first time i am replying so I hope i have clicked on the correct bit and it will get posted!

Thank you so so much for getting back to me. Thank your for the links. I read them all and have passed it to dad.

When the consultant called yesterday, we had the phone on loudspeaker, my dad was there too. However, the consultant was reluctant to give to much information.

Today the McMillan Nurse called, she was much more helpful. She said there are two tumours, one on each side of the prostate on the transitional zone ( we have a copy of the MRI report at home so i read this on there). No sign of lymph node or spread. They staged it at T2C because there are tumours on either side. She said something like out of 4 cores, 2 came back with cancer. Volume of 15%. This is a bit confusing for me as i was under the impression that 20 cores were taken at the time.

Apparently their NHS Trust does not advise on AS and does recommend treatment.

We have requested a copy of the pathology report and all the documents from the GP so we can seek a 2nd opinion on this. Although from the sounds of it, i think dad may need to start treatment.

He is really worried about the side effects of the HT ( i don't think he is too bothered about his sex life!) But more worried about hot flushes, weight gain, fatigue. 

Also i see the consultant has left it up to the GP to decide on what injection to give dad. He has listed the options. Any idea which injection has the least side effects? 

We really feel we need some time to research and seek another opinion before starting treatment. Does anyone know if waiting a bit ( a few weeks) is risky with regards to the cancer growing?

We are totally shocked by this diagnosis, i think it is more the word "cancer". We are trying to digest it all and find the best way forward for dad.

Really appreciate your replies and it is so wonderful to have this supportive community. We had a lovely volunteer call dad today too who spoke about his experience on AS.

Thank you so much.

 

User
Posted 17 Jul 2020 at 01:44

Hi SR12,

Good to hear from you again, and I'm glad your doing some sensible research on this disease.

The biopsy doesn't quite make sense, but it is easy to mis hear things, with so many numbers. It may have been cancer in 4 cores and 2 had a maximum of 15%, or some other combination. Anyway whatever the numbers it is clearly a moderate amount of cancer, but not a massive amount.

Waiting a few weeks will probably not make any difference, the cancer may have been there several years already and be growing very slowly, so a few weeks won't make a difference. 

Maybe gathering all the information together, not starting HT yet and having a further psa test in a few weeks, will help you decide? if the psa has gone up it would suggest treatment is required if it stayed the same maybe you postpone; effectively you would have taken on Active Surveillance almost by default and against the advice of the consultant. 

I think all HT injections do roughly the same thing so I suspect the side effects will be the same whichever he has. The side effects may not be as severe as he expects, everyone is different so until he is on HT he won't know if it is troublesome for him. If he really can't stand HT he will just have to stop, it will take a minimum of three months to get the drug out the system so he will have to endure the side effects for a while.

I've been on HT for two years, I'm  glad to be coming off it now but it wasn't too bad for me being on it. 

 

Edited by member 17 Jul 2020 at 08:29  | Reason: Not specified

Dave

User
Posted 17 Jul 2020 at 09:27

Hi Dave,

Thanks for your reply.

So happy that your treatment is coming to an end! I read your profile and the treatment plan sounds similar to my dads.

What sort of side effects did you experience?

My dads PSA levels have been on an upward trend since around 2010. However, what happened was because dad was diagnosed with an enlarged prostate, he was put on finasteride, so around 2015 his PSA droped down. We did not know at the time that this is because of finasteride, so we just assumed it was OK. The GP never picked up on it either.

His most recent reading was 5.2 hence the referral. The consultant called and explained the adjusted reading is 11.2. 

It is a shame AS is not an opinion for a few more years. Although, i i feel we were doing AS ourselves since 2010, without realising it!

Hopefully the GP will give us the records and we can seek a 2nd opinion. On the NICE website, i am sure it states intermediate risk cancers can be considered for AS. But perhaps there is more involved than just the TNM grade.

This is all so new to us, so trying to learn and do a crash course on it!

 

Lovely to be on here and have some support. 

User
Posted 17 Jul 2020 at 11:47

Hi,

You are correct you have been doing AS for ten years without realising it. The finasteride does confuse matters, but I think we will go with the generally accepted wisdom that real PSA is about double the measured PSA when on finasteride.

With AS the objective is to keep monitoring until some threshold is reached and then to move to a more aggressive treatment. I think the consultant would argue that threshold has now been reached.

The fact this cancer has been progressing slowly over the last decade suggests an extra few weeks(months, years?) to decide will not be a great risk to his survival.

I did not have many side effects from HT: no libido, and impotency (not a problem when you have no libido), dry orgasm, some hot sweats but not many (perhaps once or twice a month and they only lasted a few minutes), a more emotional personality, perhaps a little more irratable (none of these were massive changes in my personality but I think they were because of HT), not much change in weight, perhaps a little less muscle mass and a little more fat, but not much either way. I have been off HT for about 3 months now, I would not say I have made much of a recovery yet, I hope that over the next year things will improve. The statistics for RT and HT together are quite impressive, the major benefit of the HT is in the few months before and after RT the second year of HT may not be adding that much to your dad's chances of survival, so maybe he should just stop it early if he doesn't like it.

If the cancer becomes advanced then HT can become a lifelong treatment, I would not like to be in that position. 

You will find a few people on this site who have had treatments which have failed and have now decided that Quality Of Life (QOL) is more important than pursuing an extra few years of life.

The following is an interesting tool from the NHS it takes a bit of playing with, and at the bottom you will see the results can be displayed as "Curves" and you will want to tick the "Radical" box to see all information:    

https://prostate.predict.nhs.uk/tool

For your dad's details (I have had to guess a few things) it says your dad's chances of surviving 15 year (i.e. to age 92) would be about 28% if he had never been diagnosed with cancer, 21% if you did not opt for any treatment, and 24% if you opted for radical treatment (surgery, or RT outcomes are about the same).

Another way of looking at this is to look at the curves and see how many years until 50% of people currently your dad's age will die, this is what would normally be called life expectancy. If your dad had never been diagnosed with cancer his life expectancy would be another 12 years, if you do nothing his life expectancy would be about 10.5 years (the last year or two may be painful), if you go for radical treatment his life expectancy is about 11 years (and probably only painful for the last few months).

I don't know how accurate the NHS tool is and everybody is different. I think I would advice your dad to take up motorcycling and parachute jumping both will increase his chances of dying from something other than prostate cancer.

Edited by member 17 Jul 2020 at 11:56  | Reason: Not specified

Dave

User
Posted 17 Jul 2020 at 22:40

Hi Dave,

Haha! The last bit made me laugh as that is exactly what we are confused about. If we never ever knew about the cancer, then would it actually kill him before anything else does. But now we know about it, we feel we need to act on it. I think his age makes if difficult too. Clearly if he was younger than we would be up for treatment and if he was over 80 then i think we would not want to see him go through side effects of treatment and just rather he enjoys a good quality of life. But 77 is kind of in the middle, a bit like the grade of his cancer too!

Really glad to hear that you had minimal side effects and have been off HT for 3 months. Looking forward to hearing how long it can take before the side effects wear off. What side effects did you have on RT?

Thank you so much for the NHS. I played about with it and it came up with similar figures. Problem is now that we know, we will always wonder if the cancer is spreading etc, although no one really knows what would happen. 

I got the biopsy histology report today.

This is what it says. Makes no sense to me. Any help would be appreciated.

Pot A no evidence of malignancy

Pot B no evidence of malignancy

Pot C (right lobe) four prostatic core biopsies, three of which show Gleason score 3+4 =7 adenocarcinoma, grade group 2. The longest length of tumour is 4mm in a 12mm core. Total overall involvement is 15%. Focal perineural invasion is seen.

Pot D (left lobe). Four prostatic core biopsies three of which show Gleason score 3+4=7 adenocarcinoma, grade group 2. The longest length of tumour is 4mm in a 10mm core. Total overall involvement is 15%. No perineural invasion is seen.

We will be seeking a second opinion. However, from the sounds of it, perhaps because it is T2C and volume of cancer, perhaps treatment would be best. I really have no idea. It is either that he has 2 years of treatment and some side effects now, which will bring him to around 80 yrs old. Or he enjoys life now and watches to see how the cancer behaves, which could be risky... No easy answer to be honest.

Any advice on the report would be soo helpful!

 

User
Posted 18 Jul 2020 at 08:50
I wish you & your father the best of luck, caught early with a 3-4 he has a very good prognosis with HT & RT treatment. Tadalefil tablets can help with "Piddle problems" they don't always offer them.

At his age, Operations, are not a good idea.

User
Posted 18 Jul 2020 at 09:24
I am 76. I won`t go into loads of detail. My PSA level was 8.9 when diagnosed. Earlier this month I had next PSA test after 3 months of HT & 2nd injection. My PSA level was down to 0.8. I was given choice of HT & RT or AS at diagnosis. No way was I going to go for AS. So far, I have had a few hot flushes but they only last a very short time & do not affect me. I do feel a bit tired but at my age I expect to !.

I played golf 3 times a week but my MRI scan also showed that I had partly slipped disc so not playing until that is sorted. I bought a set of exercise bands to do light workout & that is helping my muscle mass I think. Really, HT has not had any effect on me. I will be starting my RT in October, after my 3rd injection. Only thing I`m not looking forward to is all the driving.

So far, I am very happy with the decision I made as I feel something is being done.

User
Posted 18 Jul 2020 at 09:25
The perineural invasion rules out AS as far as the NHS guidance is concerned, I think.

My father in law was diagnosed with a T2 G7(3+4) at the age of 79 and chose AS because he was concerned about his sex life (with a wife nearly 20 years his junior). He lived for 4 years. Most of that 4 years was very settled and happy, he had no symptoms to speak of and spent the month before he died camping in France in a new tent. There was no indication that it had spread to his major organs until 24 hours before he died. We might have preferred for him to have treatment and stay around for longer but we had to respect his right to choose.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2020 at 00:09

Thank you so much for the positive feedback. Really helps to hear how other people have got on with the treatments.

Lyn, sorry to hear about your father in law. It sounds like he defo lived life to the max and didn't suffer either, in the end.

I showed dad all the replies and he is really touched that people replied and says thank you. He has made up his mind now that he will go ahead with the treatment. 

Can anyone maybe tell us their experience with RT?

Dad will be going to Mount Vernon, which is about 20mins from the house. Will he be OK to drive there and back alone? Will he get more tired as time goes on? Just worried about concentration on the road etc..

Thank you again

User
Posted 19 Jul 2020 at 10:14

Hi, 

My side effects from RT were minimal, but I had HDR Brachy followed by 15 treatments of external beam RT (EBRT). Your dad will probably be getting 20, or more commonly 37 doses of EBRT. The main danger is that about 1/5 of that dose is hitting the bowels which doesn't really want any radiation damage. One of our members said "never trust a fart", well since RT I get a lot more skid marks in my underpants. It's not a major problem, but it's not great.

I rode the motorbike (I practice what I preach) to all my RT sessions. I had no problems with tiredness or concentration, and no sudden need for the toilet (which some people report, take a wide knecked bottle in the car and a towel to hide what your doing is advice I've heard but never needed). Remember I only needed 15 sessions, maybe if I needed 37 i would have started having problems later on. 

A long term problem with EBRT, is the possibility of bowel cancer in later life. For older people it is unlikely to become a problem but for people in their 50s it is something to be vigilant for over the coming decades.

One of our members Andy62 runs a support group at Mount Vernon, due to covid these now occur by zoom. It might be worth getting involved with them. 

Dave

User
Posted 19 Jul 2020 at 10:44
I had r/t from October 16th to Nov 12th last year, at Weston Park in Sheffield, after 7 months of hormone therapy.. Before the first session, I had a 'planning meeting', where the radiographers scan you, and 'mark you up' with 3 small tattoos, one on each hip and one on your pubis. These are so that they get the alignment of the machine right, once the treatment starts. I had 20 sessions or 'fractions' - normally you get either 20 or 37, depending on the cancer. Same amount of radiation, more or less, just delivered differently. The therapy itself is very fast and efficient - my sessions were around 10 minutes or so, but I had to be there an hour ahead of time, because you must have a full bladder and an empty bowel. The empty bowel is easy enough - some very effective suppositories!. For the full bladder, I was told to stay really hydrated during the day, drinking around 2 litres of fluids, then at the hospital I had to drink a further 500 ml of water or squash in 15 minutes, then wait around 45 minutes for it to reach the bladder. In the treatment room ('lineac', or linear accelerator - the actual machine) you just lie down on a metal table, the radiographers adjust your position, then leave the room. The machine makes noises and bits move around you. It is completely painless. Then it's off the table and (mostly!) into the toilet for a pee! The side effects build up gradually, and I started to feel tired after the first few sessions, but I was never so tired that I would not have been able to drive, though in fact my wife drove me mostly, to keep me company. But I guess it will be different for each patient. The 20 sessions (Monday - Friday for 4 weeks) were a bit onerous. Once a week, as a treat, she took me for a Wetherspoons breakfast on the way home. You have to be on time, and you can't skip a day if you don't feel like going. The fatigue definitely builds up, and there can be other bowel - bladder side effects which are treatable and pass. But it certainly works. My PSA fell from a high of 18 to less than 0.04

Hope this helps.

best wishes

Hermit

User
Posted 19 Jul 2020 at 12:06
My experience was pretty similar Hermit. at Addenbrooks.
User
Posted 19 Jul 2020 at 12:37

Where I was treated at christies hospital manchester the policy was empty bladder, which makes life much easier, but increases the chance of side effects. Mt vernon may do either. 

Dave

User
Posted 19 Jul 2020 at 23:14

Thanks so much for sharing your RT experience. I think dad will be having 20 fractions. He will have 3 months of the HT injections first then RT around Oct/Nov time. 

I have told dad about taking a bottle and towel in the car.. just incase.

Would love for dad to join a support group, however, he is a bit rubbish on smart phones. Face to face would be better. I am hoping these can resume soon, especially as lockdown seems to be easing now!

We have gained an extraordinary amount of knowledge from you all. I just hope that my dad is able to tolerate the side effects and the cancer does go away... It has been an absolute shock and knocked us sideways.

User
Posted 20 Jul 2020 at 07:26

Hi Lyn,

I looked up perineural invasion. It states this is when the cancer cells have started to invade a nerve. Which could mean the cancer could travel. The hospital has not offered a CT scan/Bone scan. Should we be asking for one?

This is worrying as they said the cancer is localised, but after reading this, i am worried that it could have already spread?

Does this make the reaccurance higher now? Does it change the prognosis?

User
Posted 20 Jul 2020 at 09:58

Originally Posted by: Online Community Member

Hi Lyn,

I looked up perineural invasion. It states this is when the cancer cells have started to invade a nerve. Which could mean the cancer could travel. The hospital has not offered a CT scan/Bone scan. Should we be asking for one?

This is worrying as they said the cancer is localised, but after reading this, i am worried that it could have already spread?

Does this make the reaccurance higher now? Does it change the prognosis?

I had the same comment on my biopsy results and asked the oncologist at my appointment if that meant it could have tracked down a nerve and spread. He said "no - this is a microscopic nerve inside the prostate", which set my mind at rest. I didn't have a bone scan either. (Biopsy was T2 as well)

 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 20 Jul 2020 at 10:07

Ah phew! That has put my mind at rest. Feels like we get our heads around one thing and something else pops up.

Good luck with your treatment.

 

Wish you well.

User
Posted 20 Jul 2020 at 10:29

Perineural invasion means the cancer can be seen tracking along nerves inside the prostate (these are nothing to do with the erection nerves, which are outside the prostate). The theory is that if this is seen in a T2 diagnosis, the cancer could have tracked back along the nerves to exit the prostate, leaving micro mets (mets too small to see on scans) behind in the case of a prostatectomy.

Studies on this don't all agree. Some show it's a significant predictor for later recurrence, or of PSA not being zero (or very close) just after prostatectomy, even when allowing for PNI being more common with higher Gleason scores (which in any case increase chance of recurrence). Other studies only show this as a minor effect. If you are weighing up prostatectomy versus external beam radiotherapy, it's a point which might slightly sway you towards the external beam radiotherapy (which would zap these micro mets), but probably not your most major consideration.

User
Posted 20 Jul 2020 at 12:17

Thank you so much! Dad is 77 so will be having HT followed by RT . HT for around 2 years. I was really worried that it could have spread and caused mets. They didn't suggest a bone scan. The whole thing is stressing me out now.

Worried about spread and the cancer returning. My mind is going into over drive

User
Posted 20 Jul 2020 at 13:15

You are confusing two different kinds of spread. The cancer doesn't grow bigger and then spread in the pelvis and then go to the bones. Bone and lymph node mets are caused by prostate cancer cells travelling through the lymphatic system or blood. So a man could have a small contained tumour in the prostate and still have mets. Having PNI increases the risk of the cancer escaping into the pelvic region, not the bones; that is probably what ruled out AS in your dad's case.

As far as the bone scan goes, it varies from one NHS trust to another. In some areas, all newly diagnosed men have a bone scan as routine while in other areas, it is only done if there are reasons to suspect bone mets exist. 

Edited by member 20 Jul 2020 at 13:19  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jul 2020 at 13:37

Thanks Lyn.

I spoke to the McMillan Nurse. She said from the MRI scan the pelvic area looked clear, so i assume this was in reference to the PNI.

She said they don't need a bone scan. 

Do you know if the oncologist will require one before RT starts?

I am someone along the line mentioned a scan before RT starts.

Dad picked up the tablets today. He start them from tomorrow.

Can anyone advise if evening primrose oil is good for hot flushes? Mum said she had no issues with the menopause while she was on evening primrose... Just wondered if dad should start as some articles say it does work..

User
Posted 20 Jul 2020 at 14:36

Originally Posted by: Online Community Member

but after reading this, i am worried that it could have already spread?

Hi SR12,

Worrying will not change the diagnosis or the prognosis. With cancer there are thousands of things to worry about. A little while back there was a thread on the matter (I've just re-read it and one of the posts has been deleted so it is a bit disjointed now)

https://community.prostatecanceruk.org/posts/t23226-It-s-not-a-big-deal---is-it

So if you can manage to take a relaxed attitude to bad news, you will find life more bearable. 

As others have said PNI is just an observation when they did the biopsy. It would be better if it were not there, but it is and that means the cancer has found a way of getting out of the prostate, but it may not have taken that escape route yet.

At my NHS trust bone scans seemed to be routine, but I guess each trust is different. Oncologist will not require any more diagnostic scans before RT (at least I wouldn't think so). Prior to RT a scan is performed but this is just to locate the prostate, so they can tattoo some targets on you, for me it took about two minutes whereas a full MRI takes about half an hour. Each RT session also involved a scan which took about two minutes, prior to the machine firing up and delivering the radiation. I must admit I don't know what these scans are, as no big magnets were involved (hopefully one of our members will get back on this?)

Tablets I presume are Bicalutamide they are taken for two weeks starting about a week before the first injection (which I assume will be Zoladex).

I did use a bit of Evening Primrose Oil, but I can't be sure if it worked. I didn't get many hot flushes, but I decided to try EP oil, I would take a swig before bed each night for a couple of days, then I would forget and maybe get a hot flush a couple of weeks later, then I would remember I had some EP oil and repeat the process. Thank god I'm not on any medication which needs careful management because I clearly would be no good at it. So I think my experimentation has fell far short of a double blind trial with placebo, read in to it what you will.

Please keep posting your questions, I know I have said try not to worry, but you're new to all this and it is frightening, but we can provide help. We've all been through exactly what you are going through now.

 

Edited by member 20 Jul 2020 at 14:39  | Reason: Not specified

Dave

User
Posted 20 Jul 2020 at 16:12

Thank you so much Dave. Really appreciate the link. I read through it and it did make me smile. I defo agree that the stories about people with T2 suddenly progessing to mets is extremely scary. 

I was extremely anxious when dad was getting tested for this as i knew deep inside that he will have cancer. Jusy with his age and his PSA, i just knew. I had so many sleepless nights.

Then when we got the staging, i calmed down a bit as i thought at least it will be dealt with. Now my stress levels are beginning to raise again. 

Yes he is starting Bicalutamide tomorrow. He has a 3 week course. The injection in 7-10 days. I think he has to have a 1 month injection in the first instance to ensure he does not have an adverse reaction. After that he wants every 3 months. He doesn't want to keep going to the GP due to COVID. Do you know if the 3 monthly one will give him more side effects, as i assume it will be a higher dose??

OK, good to know re EP oil. No harm in him having a go at it.

Thanks for explaining re scans before RT. Il let dad know.

We still feel like we are dreaming all of this. One min we were all watching some crap TV and next we got a text from the GP about an urgent cancer referral to Urology. Here we are now! 

 

Trying to stay positive. Just slaps you in the face some days!

How you getting on?

User
Posted 20 Jul 2020 at 23:10
No, the side effects aren't worse with the 3 month dose - it is a slow release capsule. Depending on the hormone, it may be a 12 week dose rather than 3 months, in which case it is essential that he does have it every 12 weeks. There is also a hormone that has 6 month capsules. Sometimes it is down to onco preference and sometimes it is down to the cost to the GP.

Sage tablets are thought to be good for hot flushes - Holland & Barrett and big supermarkets sell them.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jul 2020 at 23:25

Hi, 

I'm doing OK, thanks for asking. Having been off HT for about three months, I'm beginning to remember I used to be interested in sex. I expect it will be a few more months before I get anywhere near normal in that department. My last psa test was <0.1 more or less on the day the hormone treatment finished.

Next psa will be in November. It will rise, but I'm not planning on worrying until it goes above 2.1, having said that every one worries between the day the needle goes in and the day the results comeback. It seems a big gap between psa tests but I think with covid they are not keen on having people in, so pushing 6 month review to 7 months probably makes sense.

Starting with a 1 month zoladex is common, just in case there are problems. My gp suggested it, then he looked at my notes more carefully and said "no point in messing around with one month dose, you ain't got much choice but to stay on this for the full term, so straight on 3 month injection for you"

The drug comes as a pellet inserted under the skin it dissolves slowly releasing the drug. It's just a bigger pellet for the three month dose but it dissolves at the same rate as the smaller one so it is not actually a stronger dose per day, it just lasts longer. So I would not expect stronger side effects. I think one or two people have posted on here suggesting there was a difference in side effects between the two injections but I think it may be more to do with the fact the side effects come on gradually over a few months and people are into their second dose, which will be a three month one, by the time they notice things.

I've just noticed Lyn's post, she is correct that zoladex is actually 12 weeks, though I tend to say three months for brevity. 

Dave

User
Posted 20 Jul 2020 at 23:46

Thank you so much.

The letter from the Consultant to the GP says that they are happy for the GP to choose the injection, depending on the cost. He has provided a list of the options. With regards to the injection, does it have to be given again on the exact day the 12 weeks come to an end or will a day or 2 before be ok? Our GP isnt too great so i have a book and will be writing everything down, including dates, effects etc.

Thanks for the tip re Sage. I shall pick some up.

Glad to hear you are doing well Dave. Wow <0.1 is excellent. I still have a lot to learn about what level the PSA should get to after treatment and then what number it could get to before it starts getting scary again. i am going to be anxious about dads PSA levels. Hope for the best.

Sounds like you really did well on treatment, both HT and RT. Hopefully my dad will have a similar experience.

Wishing you a fast recovery on the sex front! 

Good tips on the injections. dad will be pleased that the dose won't be higher on the 12 week one. 

I am so glad it was pointed out that it is 12 weeks and not 3 months. Just need to know if it has to be exact or a few days before?

 

Thank you again

User
Posted 21 Jul 2020 at 01:16

There is some choice and discretion as to the exact hormone implant used. I can only speak for zoladex which is what I was on. The patient information leaflet specifies 84 days, my gp and a few nurses have said plus or minus one week. Strictly speaking they shouldn't really say anything other than what is specified in the patient information leaflet, however I can see that a weeks leeway is unlikely to do much harm.

When starting zoladex there is a surge of testosterone and that is the reason for dad taking bicalutamide, it suppresses the effect of that surge. So strictly speaking if the zoladex is a week late there may be a mini surge as the zoladex is reintroduced, but in reality I think the testicle take months to recover from zoladex so they would not be capable of making any surge of testosterone after one week of recovery time.

If the zoladex is delivered a week early dad may briefly be on a double dose, but a single dose is already suppressing all the testosterone so a double dose can't actually suppress any more testosterone than the single dose was suppressing. The zoladex drug probably has no other effect on any other systems in the body, so I don't think over dosing is a possibility. 

I suspect it would be impossible to make a capsule that dissolved precisely at 84 days. So I suspect the manufactures will expect either a few days of double dose or a few days of zero dose just at the time of the subsequent injection anyway.

So though it is not official, I would tolerate a week either side. And indeed as two of my injections were due on Bank Holidays we did move it by a week. In each case I chose to go to 11 weeks as I felt more comfortable being overdosed for a week than risking even a small possibility of a testosterone surge. 

Edited by member 21 Jul 2020 at 09:06  | Reason: Not specified

Dave

User
Posted 21 Jul 2020 at 08:24

The patient information leaflet specifies 84 days, my gp and a few nurses have said plus or minus one week. Strictly speaking they shouldn't really say anything other than what is specified in the patient information leaflet, however I can see that a weeks leeway is unlikely to do much harm.

The producer and NICE say differently; wherever possible there should be no more than 84 days between implants although it is okay sometimes to have it a day or two early. I have seen members here whose PSA bounced and their cancer was not controlled because their nurse or GP did not understand the difference between Prostap (3 monthly injection with a few days flexibility if necessary for bank holidays, etc) and Zoladex (12 weeks - not really flexible). On Prostap, there are 12 doses per year - with Zoladex there are 13 doses a year.

Prostap can be placed in any flabby muscle area like the belly, bum or thigh - Zoladex goes in the belly.

Edited by member 21 Jul 2020 at 08:25  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jul 2020 at 11:25

Oh wow. I am soo glad i i asked the question about overlapping. And the difference in 12 weeks and 3 months is a big difference. The GP is going to confirm with us today which injection they will use and i will then calculate the weeks/months and set reminders! I would rather he has them a few days earlier than later.

Dad is currently on Finasteride due to enlarged prostate. We asked the Macmillan nurses when he can stop this. One nurse said to stop it in a months time. The other nurse said to stop in 2 months time. Any idea what the protocol is on this?

I saw on the internet that Finasteride actually increases testosterone. Obviously we don't want this happening while the injections is stopping testosterone. Any advice on this?

He will be taking his first bicalutamide today.. 

User
Posted 21 Jul 2020 at 12:04
His onco may want him to continue the finasteride during treatment, it will not increase his testosterone level because the hormone therapy will be switching testosterone manufacture off. Don't over read the internet - trust the doctors and nurses to know what they are doing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jul 2020 at 12:14

OK thank you so much. The internet is driving me mad. But I can't seem to stop googling stuff!

We haven't even met the oncologist. Is this normal? We got the cancer diagnosis on the phone, was told to start bicalutamide then contact GP for the injections. Oncologist appointment won't be until Oct/Nov time. That will be the first time of meeting her.

I hope this is normal...

User
Posted 21 Jul 2020 at 13:04

Originally Posted by: Online Community Member

OK thank you so much. The internet is driving me mad. But I can't seem to stop googling stuff!

We haven't even met the oncologist. Is this normal? We got the cancer diagnosis on the phone, was told to start bicalutamide then contact GP for the injections. Oncologist appointment won't be until Oct/Nov time. That will be the first time of meeting her.

I hope this is normal...

It might be due to COVID or it might be because there are fewer choices due to your dad's age. I had meetings with oncologist and surgeon in March because I was offered a choice of treatments (I'm 50) and needed to decide which to have. But even the oncologist said to me "before I say anything else, at your age and fitness, you'd almost certainly be better off having surgery". (Due to long-term 15+ years side effects of RT).

And yes. The internet will do that to you. I didn't join this forum until after surgery, but I'd used the site extensively. Information is very much a double-edged sword. Having hung out with people in here, I feel much less at peace about my situation because I've read stories about all the things that can go wrong.

Try not to let it consume you. This is why I'm so desperate to get back on my bike. Cycling 20-50 miles per day is how I survived the COVID delays before surgery. 3 more days to go 😂

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 21 Jul 2020 at 21:37

Thank you Alex.

Yes makes sense because of dads age. The op is out of the question. Just hope HT and RT  work out for him.

He took the first pill of bicalutamide this afternoon after lunch and instantly got a headache. I called the Macmillan nurse. She said to take paracetamol. This made him feel better. A few hours later he felt really unsteady and light headed. He took a nap then was ok. This was just day 1! Hope he will be OK and hoping his body will adjust.

You have done so well since your op! 3 days is just around the corner. Weather is so lovely too! Bet you can't wait.

Yes the internet has a lot of negative stuff. People do recover and survive many cancers. I have a friend who has been free of stomach cancer for 10 years now! Just wish we could hear more of the sucess stories too.

 

Hope, is all we have... and in the meantime we must try and enjoy life too!

 

User
Posted 05 Aug 2020 at 23:08

Hi all,

I hope all of you are well and enjoying the weather!

Just wanted to give an update on dad. He is due to finish the 3 week course of bicalutamide next Monday. Apart from the headache on the first day, he has not had any other side effects. I guess 3 weeks isn't really long enough anyway..

He had his first 4 weekly Zoladex injection a week ago now and so far he has been OK. Again, i don't think it is long enough to experience side effects..

He has been taking evening primrose oil and sage tables daily. He has also started resistance exercises using bands and weights. He does a lot of walking anyway but has only increased this a bit.

His next 4 weekly Zoladex injection is due in 3 weeks time. If he is OK with that one then the GP would start to give 12 weekly ones.

We are still waiting for an appointment to see the Oncologist. We were told it would be about 3 months after the first Zoladex injection.

I still come on every day and read updates on how people are...

Il keep updating on dad too.

Keep well.

User
Posted 06 Aug 2020 at 00:11

Hi SR12,

good to hear from you. I'm glad your dad is getting on OK with the HT. I'm curious if the evening primrose and sage work. We won't be able to prove anything scientifically but after a few months we will at least be able to say anecdotally they either work or don't for at least one person and that information will help the next person who comes along. There are members on this group who seem to be able to memorise this sort of thing, and recall it many years later for the benefit of others.

I mentioned on a previous post that Andy62 runs support groups on zoom and he may be running one about HT soon, so keep an eye on his posts and see if either you or your father can join in, you may pick up useful information. 

Dave

User
Posted 06 Aug 2020 at 06:47

Sounds like good progress SR12. Hope it continues well. 😄

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 06 Aug 2020 at 07:50

Just noticed the reference to the Mount Vernon support group and the Surviving Hormone Therapy class I do.

If he wants to join the Mount Vernon support group, get his consent to PM me his name and email (or his name and your email if he doesn't do email) and I'll add him to the mailing list. The group normally meets on the 3rd Wednesday of the month at 11am at Mount Vernon with clinicians present for the first half, although COVID has stopped that of course. Being a hospital group, it is for patients only (including patients from other hospitals). The group is small, so what I've done is to merge it into The FOPS during COVID, the prostate support group at Chorleywood. The FOPS is currently meeting on Zoom monthly. The FOPS is for patients and any family/friends the patient wants to bring along.

Surviving Hormone Therapy is an open and frank discussion of the side effects of hormone therapy and what you can do to minimise them and what you should do to preserve your physical/sexual/mental health, with some humour too. Part of it is also relevant to prostatectomy patients.

I was running this as a half day group session at Mount Vernon every 2 months for new patients until COVID stopped all their patient courses. It is ideal for hormone therapy patients who are a few months into their hormone therapy treatment - some attend at the time of doing their radiotherapy at the hospital. The Mount Vernon session is also patients only, including patients from other hospitals. Earlier this week, my consultant was hinting for me to start it up again over Zoom, which I'm very happy to do, but some of the services I use to run it there are not yet open again.

In the mean time, I've been running a shorter presentation version of it at local support groups around the country in a sort of virtual Zoom tour - I've done ten so far with four bookings still to go (and still the odd new booking coming in). This is part of an initiative by PCUK to keep the local support groups as active as possible during COVID, when patients are struggling to contact their own clinicians. I can probably get your father into one of the remaining local support group sessions (I'm doing one this evening). These almost always include partners too (depends on the local support group).

If there is sufficient demand, I could run a session for this community group - it's a minimum of 10 people (and preferably more) because some of the discussion is rather intimate, and if someone is not comfortable with some topics and there are only, say, 5 of us, it's too personal.

User
Posted 06 Aug 2020 at 16:03

Thanks so much Andy. Really useful. Wow, you do so much good work that is extremely appreciated. I will discuss with dad this weekend and get back to you on how he feels about attending a Zoom session. 

Totally agree with you Dave. I got all my information from this site when dad was diagnosed, so i would really like to keep updating on how he gets on with the treatment and if evening primrose oil and sage do make a difference regarding the hot flushes. Also if resistance exercises help with bone density. I would be really happy if it makes a difference to just one person even. How are you getting on with coming off HT? 

Thanks Alex. Early days still but hope it continues this way! Hope you are well.

User
Posted 06 Aug 2020 at 23:38

Hi SR12,

Coming off HT seems to be a slow process. It's just over six months since the last zoladex injection so in theory it has been out of my system for three months. My libido is still almost zero, perhaps a tiny bit above absolute zero, but not by much. Taking this with a big pinch of salt apparently men think of sex every 7 seconds, well on zoladex that drops to about once per year, now I would say I think about sex about once every couple of weeks, so a long way to go before I'm back to normal. You would think that not thinking about sex every seven seconds would have given me time to paint the garden fence, but it only freed up enough time to buy the paint and brushes and give them to my wife, I don't know what she is thinking about every 7 seconds, but she still hasn't painted the fence either. Physically things just about work, but until the libido comes back it seems a bit irrelevant. Medics have said it can take a long time to recover so I'm just hanging on in there. Next appointment with medics is December, I'll see how things are then, and probably update my profile, if things start to change.

Dave

User
Posted 08 Aug 2020 at 10:50

Originally Posted by: Online Community Member

Hi SR12,

Coming off HT seems to be a slow process. It's just over six months since the last zoladex injection so in theory it has been out of my system for three months. My libido is still almost zero, perhaps a tiny bit above absolute zero, but not by much. Taking this with a big pinch of salt apparently men think of sex every 7 seconds, well on zoladex that drops to about once per year, now I would say I think about sex about once every couple of weeks, so a long way to go before I'm back to normal. You would think that not thinking about sex every seven seconds would have given me time to paint the garden fence, but it only freed up enough time to buy the paint and brushes and give them to my wife, I don't know what she is thinking about every 7 seconds, but she still hasn't painted the fence either. Physically things just about work, but until the libido comes back it seems a bit irrelevant. Medics have said it can take a long time to recover so I'm just hanging on in there. Next appointment with medics is December, I'll see how things are then, and probably update my profile, if things start to change.

I can agree with ALL that.......

User
Posted 08 Aug 2020 at 23:58

Haha! Dave, everytime i read your posts, it always makes me smile. You really do have a good sense of humour and it is nice to see this as i am sure it can help make the process easier.

I hope the libido comes back very soon! 

Dad had a hot flush yesterday. He said it lasted about 3 mins. But then again it was really hot and he was wearing jeans! Told him to wear lighter clothes and cut down the hot drinks in this heat. Today he has had none.. he could also up the sage to 2 a day if he has to. Shall keep you posted.

Have a good weekend..

 

 
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