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Told operation too risky :(

User
Posted 13 January 2018 11:04:27(UTC)

After being diagnosed on Tuesday T3b possibly N1 5/4  Gleason 9 after PSA 18 & 23 I have just been advised by the surgeon to go for RT/HT instead of robot assisted prostatectomy. I'm disappointed as I had hoped to have the op & be rid completely if possible. He also quoted a 50% chance of a ten year survival which was a bit of a shock. He said if the chance of success was more than 50% he would advice to have it but my chance was less than 50%. I'm back to being worried again!

User
Posted 25 March 2018 01:57:00(UTC)

Originally Posted by: Online Community Member

And there are far too many people I have come across who keep quoting "just have the operation" and "it's not the death sentence it used to be". I wish it was that simple!
Richard

 

Those of us that have been on here for a while have lost many forum friends - mostly far too soon - and understand how aggressive it can be. I think the youngest to die recently was in his mid-40s so 'it's the best one to get' is the phrase that makes me most cross. 

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


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User
Posted 29 April 2018 00:44:30(UTC)

Not many people in this world get a full remission from cancer although some are more likely than others - leukemia and some lymphomas, for example. That's not to say that no-one gets full remission from prostate cancer, they get on with their lives and put it into their past. Nor does it mean that there aren't loads of men who get a 15 or 20 year remission after successful treatment. Your onco is giving you a shot at curative treatment - if it works you get full remission or a respite of 20 years or more as a prize. He wouldn't be wasting valuable resources if he didn't believe it had a reasonable chance of being successful.

Time for bed!

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


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User
Posted 17 January 2018 22:49:24(UTC)

sorry, yes twin brother had PSA & DRE last week and is OK. The other 2 have had DRE but are going to get yearly PSA.

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User
Posted 13 January 2018 14:43:26(UTC)

The other way of looking at it is that you could have had the op, suffered all the side effects and then discovered it hadn’t worked and you need salvage RT/HT anyway. That happened to my husband (he had a 55% chance of recurrence but didn’t really understand at the time what that meant) and he has very much regretted rushing into the surgery as it is so hard to live with the long term effects.

The other thing to consider is that with the RT/HT you have a better than 50% chance of getting to full remission :-)

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


User
Posted 13 January 2018 18:10:19(UTC)

Hi Rich
Check my profile. I was similar to you in all stats. They gave me the op and then found I was G9 T4 N1 with 5 lymph’s cancerous out of 18. The post op results were tragic psa wise and I detested the 2 yrs of ED. I was only 48. I think Lyn is right ( she usually is ) and the best course is a damn good bout of RT to knock it back. Best of luck




If life gives you lemons , then make lemonade
User
Posted 13 January 2018 18:57:31(UTC)
Hi Rich,
My husband was G9 T3B N0 M0 he has HDBrachytherapy then 5 weeks of RT, he will be on Prostrap until June 2018 his PSA has been undetectable for the last year <0.1
He is happy with his decision, regaining his strength and managing the side effects of the HT reasonably well. He has no libido, gets the occasional hot flush, and the odd day of tiredness.
Our lives have changed, physically emotionally and socially. We are the same people readjusting our lives to make the best of something we did not want, this bl##dy disease is something none of us want.
What we do want is quality of life, enjoyment, health and happiness, we will not let this disease get the better of us. We hope he does not have to have further treatments, and he’s been given the old stats of a 50/50 chance of remission. I’m no medic or mathematician but even I can work that one out. A medical friend has told us that usually oncologists are a conservative bunch, so I’m hoping she is right.
He is older than you at 67, fairly fit, still running a small holding and playing as a muzo every day ( at home) so it’s not all doom and gloom, though we both fall into the emotional black hole sometimes, but make sure we drag ourselves out, cos it’s not a good place to be.

Research ask questions and use this site, it has been a place of great support for me.

Leila







User
Posted 14 January 2018 12:25:43(UTC)

You lot are are great especially the ubiquitous "LynEyre"!!!!

User
Posted 17 January 2018 09:47:54(UTC)

Hi Rich
I had a similar diagnosis to you. T3b N1 M0 Gleason 9 (5/4) two years ago. I was devastated.
I was immediately put on hormone therapy tablets. (This shrinks the tumour)
The oncologist offered HD Brachytherapy and 3 week external beam radio therapy to occur at least 3 months after the start of hormone therapy. I was not given another option.

The oncologist told me 1 in 3 cure with 2 in 3 survival in 10 years. My view was that theses statistics are for the whole age range, I was relatively young (56) and fit, which I am guessing you are, and so I my outcome is likely to be better. I think the same applied to you In addition I agree the oncologist with Leila's friend oncologists will tend to be conservative

Good luck

Bill

User
Posted 17 January 2018 18:41:52(UTC)

Hi Rich, sorry you couldn't have op. My husband had the robotic surgery last Friday and got out Sunday. He is doing remarkably well in the recovering at home but finding the catheter difficult to have. He also has to wear the stockings for 6 weeks and inject himself for a month.

He will get over the surgery but there are no guarantees that he will not also need radiotherapy, he is also still on the hormone tablets.

It was his decision to go for this simply because he felt it was being taken away and he had that option. The incontinence once the catheter is taken away is unknown as yet and he knows it could be long term.

I think you just have to go with the options offered to you and trust the doctors.

Think he still has a lot to cope with but we just live day to day and hope for a brighter future.

User
Posted 17 January 2018 21:36:33(UTC)

Just had consultation at Nuffield Newcastle with radiologist. I went mob handed with my 3 brothers. The man I saw is so knowledgable that we could not but agree with his suggestion of hormone therapy and radiotherapy. I'm starting hormones tomorrow for 3 months then starting 77 (?) sessions of radiotherapy. He said as I am 50 I have a good chance of 10 years plus...... My standards/expectations are dropping as I feel quite good!!!!

User
Posted 17 January 2018 21:45:12(UTC)

Good luck for tomorrow Rich.

Hope it goes well for you

We can't control the winds - but we can adjust our sails
User
Posted 17 January 2018 22:11:34(UTC)

Probably 37 sessions (called fractions) 7 weeks & 2 days. Normal RT process is 37 fractions at 2Gy each - a total of 74Gy although some oncologists now do 20 fractions at 3Gy or 3.2Gy which has the same cumulative effect. So I am thinking that 37 and 74 got combined in your head as 77????

You and 3 brothers - I feel almost sorry for the oncologist. Did he tell your brothers that they all need to get their PSA measured?

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


User
Posted 17 January 2018 22:18:50(UTC)

We asked if it was OK and he did not mind at all. He was extremely professional and explained each step to us all but also managed to come across as warm, caring and dedicated to helping (I do believe he is a very senior person here so I am happy I am getting the very best advice), 

User
Posted 17 January 2018 22:38:49(UTC)

And yes Lyn, I believe you are correct above the number of RT sessions thank you........

User
Posted 17 January 2018 22:49:24(UTC)

sorry, yes twin brother had PSA & DRE last week and is OK. The other 2 have had DRE but are going to get yearly PSA.

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User
Posted 18 January 2018 00:24:17(UTC)

Originally Posted by: Online Community Member

We asked if it was OK and he did not mind at all. 

 

I was joking :-/ 

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


User
Posted 18 January 2018 22:18:38(UTC)

No problem Lyn! The oncologist said that because of my age they would do everything they could to give 10 years plus life expectancy. That only takes me to 60+ (better than a lot of people, I know!) but I then asked if there was any chance of cure and he said yes. Is this a realistic outcome for me to consider?

User
Posted 19 January 2018 00:13:37(UTC)

NHS resources are stretched and they would not be offering you a curative treatment if they didn't believe it had a reasonable chance of working. If they thought your cancer was incurable, they would have been offering you long term HT possibly with early chemo and / or with one of the new generation hormones.

Believe :-)

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


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User
Posted 19 January 2018 00:21:51(UTC)

Just as a point of note, oncologists rarely talk about being 'cured' of cancer - the correct terminology is 'remission'. So while you asked about being cured and he said it was possible (and you are now questioning the reliability of that reply in your mind) he had already told you that he believed RT would give you more than a 50% chance of success .... which is the same as saying 50% chance of remission. Despite your worst fears, that starts to make RT look like pretty good odds.

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


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User
Posted 15 February 2018 20:59:26(UTC)

Previous reply from a member:
You said in a previous post that the urologist thought it was in your seminal vesicles and pelvic lymph nodes? If that is the case, I would be a bit worried that they might be being a bit over-confident with the promise of cure.

Post on this thread:
The other thing to consider is that with the RT/HT you have a better than 50% chance of getting to full remission :-)

Confusing?

My main point to this is that I was probably "fishing" for some indication of likelihood of cure but having not had specialist nurse then I have "speculated"!

Anyway, I finish 4 weeks of Cyproterone Acetate tomorrow. Second Prostap injection next Friday and consultation with onco 28th Feb with view to start RT around 19th March. I don't think I have had any side effects of HT so that is quite good. Some weight gain but training hard and diet change will hopefully balance that.

At work they have just asked me if I can go to Japan for 2 months then come back for a month for the next year or so?

I suppose this is assuming I am really healthy and having 3 monthly PSA checks! Impossible to know now I guess?

I said it would be lovely but I need to see treatment outcome........

Richard

User
Posted 16 February 2018 21:36:19(UTC)

One other thing. Cycling cuts off the blood supply to my nether regions....... Felt like cystitus yesterday after session. Then today it was twice as bad. Is it bad for me to train and have these issues? I can get a saddle with the crotch region cut away. This is a well known cyclist affliction but maybe my PCa adds the cystitus effects too? I also understand I shouldn't 24/48 hours before a PSA test?

Richard

User
Posted 23 February 2018 21:22:49(UTC)

Hello again,

I haven't posted any stupid questions for a few days so I'll try and get myself ahead now!

Background: I have just had second 12 week Prostap injection today. I have had minimal side effects from HT bar weight gain around the waist. Some pain weeing maybe connected to cycling which I've already posted. Is there any higher risk of side effects with a higher dose 12 week injection?

1. How is it there appear to be people with similar diagnosis to me who have been offered and given brachytherapy? They declare T3b N? M0 Glleason 9 (4/5).

2. What criteria determines whether RT is done over 20 or 37 sessions?

I have a meeting with private oncologist on Wednesday to discuss RT planning. Sorry for flogging a dead horse but I want to ask about going NHS. I asked last time but feel he avoided the issue. I get so little information from being private.

On a different note a gentleman who I know through a friend approached me in the pub tonight. He said he knew my condition and that he had a brain tumour that required 25 RT sessions at the Freeman Newcastle (where I will be going for 37 sessions soon). He made me aware of a charity called "Daft as a brush" (Bobby Robson-Paul Gascoigne?) who took him to every RT session, waited and then took him home. I want to work as much as I can whilst feeling competent at doing so. How good is that as a charitable aid to people in our position? Is this a north east only facility?

Another weird issue is that my department at work (knowing my exact condition) declared I will be working on a major new project with one other engineer. This involves long business trips to Japan. I said i don't know how I'll be but if all goes well the minimum requirement would be 3 monthly PSA tests.

I'm a bit nervous about having locally advanced prostate cancer on the other side of the world? I've plenty of experience working in Japan but non with PCa!!!!!

Any comments/opinions?

Richard

User
Posted 25 February 2018 08:49:01(UTC)
Hi Richard
I am afraid that I don't have the necessary knowledge to offer any answers to points 1 and 2 above.
With regard to the charity offering hospital transport that is something that goes on in different parts of the country. In our area it is The Link and I volunteered as one of the drivers when I retired. Patients simply made a donation of what they could afford. Without this service there would be many people unable to get their treatment.
Regarding your work in Japan I would have thought that your HR department should be fully briefed about your medical status so that should you go there are plans in place should there be a problem. I don't see why there should be any problem but if there is a plan already agreed then job done.
All the best

Kevan
User
Posted 25 February 2018 09:21:51(UTC)

Thank you Lyn, Chris, Debbie and Kevan. I will use this as my thread as it has the most pertinent info on. I want to make one point regarding my state of mind which doesn't quite make sense. I feel great and have done for weeks! What's all that about? I'm not complaining but it is quite astonishing. I'm not on anti-depressant medication so is it from Prostap? That is now the only medication I am taking apart from the odd heart burn tablet! For the last 3 weeks I have been getting to my desk for 6am as I am very busy but enjoying it. Maybe I've had a harsh reminder about life and how precious it is. Long may it continue!!!! ;)

User
Posted 25 February 2018 10:25:16(UTC)
Again I can only share my own experience here, but ever since diagnosis I have accepted that how I feel today is how I feel. I have never felt that I have had to battle anything as to me my cancer is just an illness and to be honest, I find my psoriasis more of a pain.

Looking around I dwell on what I have and what I can do rather than the negatives and having realised how lucky I am my situation is not really a problem. I'm not saying that there haven't been dark days as there have but I am lucky in that I find I can shut the door on them and enjoy life as it is now.
I emphasise that this is just my take on things which doesn't make it right for anyone else.
My advise ? If you feel good just enjoy it the same as you would with any other medical condition.

All the best

Kevan
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User
Posted 25 February 2018 15:09:47(UTC)

Hi Richard

Re your last post on your state of mind, there is no reason why you shouldn’t feel anything but well.
I’m T3b I have had RP & RT plus various types of HT almost everything other than Chemo. It’s now 12 years since I was first diagnosed. I’m a tad older than you, but I can honestly say that I have never felt anything but well the whole 12 years. Just stay positive, don’t let the b***ger get you down.

I’m also an engineer and a Geordie. I have traveled all over the World regardless of my Pca. But I’ve never been to Japan, but aways wanted to, still do.

Stu

User
Posted 25 February 2018 16:53:11(UTC)
Thanks Stu, exactly want I want & need to hear! You superstar!!!
Richard
User
Posted 27 February 2018 11:20:53(UTC)

Urinary infection confirmed today after giving sample and assessment by GP Friday. I'm on a short course of MacroBID (Nitrofurantoin). Nothing to do with bike seat after all. I think it may have cleared anyway as I don't have the symptoms anymore.
Richard

User
Posted 02 March 2018 21:03:22(UTC)

People are strange. A person I know fairly well came up to me tonight and said "i have been told you are on deaths door? I know his dad has had an RP. Does my Gleason 9 (4/5) grade 5 mean I am dying "from" not "with". Yes I've had a few......
Richard

User
Posted 02 March 2018 21:13:30(UTC)

Don't worry about replying, it's just an update.......
Richard

User
Posted 02 March 2018 21:15:15(UTC)

Was it a failed attempt at humour or just crass?

When John was diagnosed, one of his staff would not enter his office - he would hover at the door if he needed to ask or discuss something. J eventually said "it's okay - you can't catch it" to which the response was "well you can't know that for sure"

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


User
Posted 02 March 2018 21:31:01(UTC)

He was a bit drunk Lyn and definitely not an attempt at humour, Key point from me:
Gleason 9 (4/5) T3b N? M0

I've been fairly down this week so that is good after my "I feel great posts. There is no reason why I should feel good........
I've got cancer........

User
Posted 02 March 2018 21:49:58(UTC)

.....then I had a bit of a contre temps with twin brother regarding what he said was a 10 years plus attempt for life expectancy.I heard it right but bros dont get it. Son fully understands (that breaks my heart.........:()

User
Posted 07 March 2018 21:19:53(UTC)

Hello everyone,
I've just had latest review with Oncologist relating to upcoming RT treatment. He basically said it's fine to go NHS and it wouldn't make any (negative) difference whatsoever except maybe losing the ability to choose preferred treatment times. I will be and have been working loads of hours lately so I would like this to continue.
The plan is 37 fractions targeting prostate, seminal vesicles and lymph nodes. He said I had a 65-70% chance of not requiring advanced treatment after this. He implied full remission is unlikely (not possible?).
He also recommended possibly asking GP for a prescription of Flomax (400 micrograms) to possibly address multiple nightly toilet visits.
He also said my Japan travel would be ok based on 2 months away, 1 month back for PSA test & Prostap injection.
I will have testosterone & PSA check a few weeks before RT start.
It is what it is! Feeling quite upbeat!

Richard

User
Posted 07 March 2018 21:36:34(UTC)

The known is usually better than the imagined unknown. Glad you have a plan in place

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


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User
Posted 07 March 2018 21:44:49(UTC)

and I only took 2 brothers this time Lyn!!! He noticed immediately. Fantastic man!

User
Posted 07 March 2018 22:23:30(UTC)

😂

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


User
Posted 07 March 2018 22:45:18(UTC)

A question I forgot to ask onco tonight (and last visits with onco & urologist):

I often feel a dull ache around upper RH/LH groin area. Is this my Lymph nodes? I often/normally get abnormal feelings of prostate but this must be the actual PCa cell distortion/mutation of the prostate?
Richard

User
Posted 08 March 2018 00:17:34(UTC)

Your imagination is running wild Rich - no-one can feel their cells mutating!

If you have started the hormone treatment, it is more likely to be your pelvic muscles and tendons - your pelvis may loosen a little on the HT in similar way to a girl reaching puberty starts to get hips or a pregnant woman's pelvis spreads in preparation for childbirth.

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


User
Posted 08 March 2018 16:24:56(UTC)

I have been wanting to add this post for a while but didn't want to be considered flippant!

Since starting my HT (Prostap) therapy I have noticed a strange phenomenon. With the demanding social activities associated with being just over half way through the six nations I have noticed that I never get a hangover or any ill feelings?

Is this possible? Has anyone else noticed this?

User
Posted 08 March 2018 17:34:28(UTC)

Perhaps you are drinking at a sensible level and getting nowhere near hangover territory. I hope so for your sake. Not too much to celebrate in the Six Nations for me yet!

AC

User
Posted 10 March 2018 07:57:31(UTC)
Hi Richard, In answer to your question about hormone therapy and the 1 monthly and 3 monthly injections. In my husbands experience he sailed through the one monthly injections before his gp talked him into the three monthly ones. He only had that one once and reverted back to the monthly ones as side effects came in thick and fast. Flushes, feeling lousy in himself, emotionional. When back on the one monthly injections he was much better. I imagine it depends on the individual.
Wishing you well Richard for your RT. Hubby was young too when he had it. He worked in the morning and had RT in the afternoon. It wasn’t until towards the end of the treatment that he became extremely tired. At that time he had his last treatment on the Tuesday and we went on a cruise on the Friday.
Stay positive every step of the way
Denise x
User
Posted 10 March 2018 21:06:06(UTC)

Thanks Denise,
12 week injections are the norm. The first 4 week one is to ensure three are no adverse reactions. I have had no reactions that I did not have before any medication. This is strange........

User
Posted 10 March 2018 21:22:24(UTC)

1) one of the lucky guys
2) not on HT long enough for side effects to kick in yet
3) HT is not dropping T to circa castrate level - might be worth a check

Ray

User
Posted 10 March 2018 21:29:56(UTC)

Denise,
Maybe I'm being stupid. My plan is to go to work and have the RT stuff as well. It's just difficult to pick a time.

Richard

User
Posted 10 March 2018 21:45:06(UTC)

Ray/Denise,
I honestly don't fit in any "lucky" category. I have no side effects to HT so when I declare that I have none I just have none?
Would someone please explain the concept of "castration"? My dad had orchidectomy and it gave him 3 months - this is unbelievable to me, what determines this procedure????? I have realised how bad my condition is...........

User
Posted 10 March 2018 22:00:36(UTC)

3 months / 12 weeks is not the norm for everyone in every circumstance. Some men will prefer to stay with monthly / 28 day injections so that if the side effects are bad, it takes less time to get out of the system. Some oncos prefer to use the monthly or 4 weekly dose rather than the 3 monthly / 12 weekly one - but the 3 month / 12 weeks is cheaper for the NHS.

Castration - the type of HT you are on is designed to stop all production of testosterone, which put another way is to castrate you. Before we had HT, men had their testicles removed to effect the same result. This option is still used in some circumstances - for example if the man does not want or cannot tolerate the hormones. We have a couple of members who have had surgical castration rather than chemical - and it is still quite common in some overseas nations. Your dad may have chosen to have orchiectomy because he didn't want to take hormones or perhaps because he reacted badly to them. I don't think men grow breasts after surgical castration. Your dad's cancer must have been a particularly aggressive kind or the cancer had already learned how to survive without testosterone (perhaps because he had been on HT previously?) - this is called being castrate resistant. It is also possible that he had a rare type that doesn't depend on testosterone anyway.

Ray is right though - if you don't start to get some side effects in the next month or so it might be a good idea to ask for a testosterone check with your next blood test, just to be sure that you are below castrate level. Who gives you the injection?

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


User
Posted 10 March 2018 22:19:57(UTC)

Dad died 3 months after the horribledectomy. This was mentally horrific for him (and obviously for us). I am due to have PSA and testerone check before RT. Basic question - Lyn would you please explain what "castration" is?

User
Posted 10 March 2018 22:21:04(UTC)

Hi Rich, This may not be fully accurate but someone may add more on it.  From my understanding there are 2 types of orchidectomy one is complete removal with fitment of false ones and the other is removal of the testosterone producing parts.  Something I needed clarifying is that when you're on hormones they can stop the treatment and re-start it and it can extend the treatment.  If you have an orchidectomy presumably there is no stopping it unless they can inject you with testosterone.  Regards Peter

User
Posted 10 March 2018 22:26:46(UTC)

Richard
HT is chemical castration.

Some guys who can't get T to castrate level (0.69) also report none or little HT side effects. Is there a connection or are they able to tolerate (lucky was a bad choice of word) HT well?

Did your dad have orchidectomy by choice or because his HT wasn't working as effectively as hoped.

Most likely HT is working fine it but worth a check due to your dad?

Ray

User
Posted 10 March 2018 22:28:04(UTC)

and I have no scenario at present which has suggested cutting my balls off,,,,,,,,,

User
Posted 10 March 2018 22:38:29(UTC)

he had orch... because he was dying. It only gave him 3 months. Actually there is no evidence that this extended his life....

 
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