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Told operation too risky :(

User
Posted 10 March 2018 22:45:10(UTC)

It would be interesting and useful to know the details of your dad’s diagnosis, the type he had, his treatment and how long that worked for, as well as how long ago it was. Orchiectomy is rare and never without informed consent. How much do you know?

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


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User
Posted 10 March 2018 23:36:01(UTC)

I appreciate why. In my time at diagnosis thus possibly in your dad's time once HT stopped working there wasn't, other than adding Casodex for a short time, any more drugs of note in the box. Thus Orchiectomy was seen as an option to try to extend life. Sounds harsh but that's all there was.

HT then had an effective working guide time of 3 years (although many guys sailed past that).

For some guys HT didn't work anywhere near that time, if at all.

Knowing which group your dad fitted into could give a guide to your type of PCa.

Ray

User
Posted 11 March 2018 15:29:40(UTC)
Hi Richard, i think I mentioned in my last post that my hubby worked all the way through his RT for the full 7 weeks. He always went late afternoons and worked in the morning. The hospital was flexible and tried to book him in st the same time every day. The tiredness caught up towards the end it was a good thing we went on holiday. It did him the world of good. He was lucky with HT too. He did go on anti depressants for a while and those helped with the emotional side that he found difficult to deal with. Specially the loss of libido which to him seemed like the end of the world. It’s a horrible journey but you just try to carry on as normal. This forum has helped me. Even being away for 5 years I’m still seeing the same people.
Denise xx
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User
Posted 11 March 2018 20:26:58(UTC)

It was horrific. I had been sitting with my twin brother on dads death bed. We had an instruction from the macmillan ladies to press the button if he looked like he was in pain.Bro kept pressing the button and I was going mad saying youre taking away his last consciousness and he died a week later.

After my diagnosis my twin brother just dropped everything since I was diagnosed and attended every appointment. I hope we don'tend up with 4 brothers with PCa. Ma Hails will be furious!!!!!! I have the best family ever!!

User
Posted 14 March 2018 21:22:39(UTC)

So one week after onco says get prescription of Flomax I still haven't got it!!! I told him I was going to toilet 4,5,6 times a night and really affecting sleep. Local health centre say its down to oncologist (despite the fact they have already sent letter to onco requesting me to move to NHS for RT????). Surely ANY GP could prescribe this???? Sorry, need to go to the loo........
This nearly up to the disgraceful management of my sons epilepsy medication!!! Pathetic.

User
Posted 15 March 2018 12:45:30(UTC)

The GP needs a letter from your specialist - or the specialist needs to write the prescription. Perhaps phone your oncoglist's secretary and ask him/her if they can sort it out for you. Frustrating but that is how our NHS works now - if someone wants you to have meds, it needs to come out of their budget rather than the GP's budget.

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


User
Posted 15 March 2018 14:41:17(UTC)

That's fair enough Lyn (but not ideal) but I did that on the 9th! I rang again yesterday (NHS practice) they said they would ring onco secretary and arrange letter. It's frustrating because assistance with urinary flow would be a BIG help! Flomax has a good reputation too apparently according to site nurse.

User
Posted 15 March 2018 14:45:29(UTC)

Going back to an earlier question, my elder brother knew father's staging which was T4 N4 (distant node involved) M1b so no good!

User
Posted 15 March 2018 14:55:45(UTC)

Originally Posted by: Online Community Member

That's fair enough Lyn (but not ideal) but I did that on the 9th! I rang again yesterday (NHS practice) they said they would ring onco secretary and arrange letter. It's frustrating because assistance with urinary flow would be a BIG help! Flomax has a good reputation too apparently according to site nurse.

 

That wouldn't work where we live - we would have to phone the consultant's secretary to get the letter sent to the GP - the GP practice wouldn't chase it up for us. 

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


User
Posted 15 March 2018 17:58:11(UTC)

If you are really desperate to get your hands on some Flomax until your problems with the prescription are resolved it is available OTC from chemists or online at at cost of about £8 for a two week supply.

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User
Posted 18 March 2018 00:08:46(UTC)

Help required again please. My staging of Gleason 9 is now grade 5 the maximum possible. The cancer research website only has 4 "stages" so what stage am I on that scale? T3b?

User
Posted 18 March 2018 00:39:07(UTC)

Cancer only has 4 stages. What do you mean by 'it's now grade 5'? Where is it written or in what context were you told this? Could it have been said in the context of your mpMRI result, which comes in 5 grades? Or was it referring to the fact that you have some 5s in your gleason score?

Your results in terms of T3b or whatever are determined by all your results, not just your Gleason.

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


User
Posted 18 March 2018 08:32:59(UTC)

Lyn - it is on the table on page 8 of the Toolkit's "How prostate cancer is diagnosed" booklet. The right hand column is titles "Grade". Gleason 8, 9 & 10 are grade 5. I have seen references indicating that the grading will replace the Gleason score? I believe now that I am stage 3 based on cancer research uk 1 to 4 scale you refer to. In summary, T3b, Grade 5 and stage 3!!!! Gleason and staging I use all of the time but the 1-4 stage I have only seen on the cancer research uk site. It is confusing that the word "Staging" seems to apply both to the TNM system and the 1 to 4 cancer research uk scale?

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User
Posted 18 March 2018 11:47:58(UTC)

No, that is referred to as a grade group and is a new measurement not yet used at all hospitals. Your staging is T3b and your Gleason grade is 4+5 and your Gleason score is G9. Your Gleason score puts you into grade group 5 if you happen to be talking to an oncologist that uses the grade group rather than the Gleason.

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


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User
Posted 18 March 2018 17:56:14(UTC)

Thanks Lyn. I know why I am confused! So does that make me stage 3 according to cancer research uk scale? Please don’t say stage 4:(

User
Posted 18 March 2018 19:10:57(UTC)

Your grade and stage is whatever your onco says it is, depending on which scale s/he uses 😂 If you over complicate things, you will end up confused or anxious when your nurse specialist says something different or a GP letter says 3 with no context.

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


User
Posted 18 March 2018 19:34:50(UTC)

I am totally confident that the medical professionals involved completely understand my situation. It's just that I don't understand and I have a severe diagnosis. It's when I go off piste I discover these other metrics. I'm sorry for being a continual pain in the backside!!!

User
Posted 18 March 2018 19:47:15(UTC)

Actually it is not off piste. Cancer research and PCUK are mainstream sites but they are confusing me!

User
Posted 18 March 2018 20:19:26(UTC)

Why is the clock wrong?

User
Posted 18 March 2018 20:59:33(UTC)

It is just a quirk of the site - it moves to British Summer Time about 10 days early every year - all will be well again after next Sunday.

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


User
Posted 20 March 2018 08:25:21(UTC)

I have gone back to the original reason I put this post on and I would like anyone's opinion on the content of what the surgeon told me. I will put the full detail in. My worry is that the situation is a lot more grave than I thought.

I saw you at the Nuffield Hospital today. You are a 50 year old gentleman who was under investigation with a PSA of 18mg/ml and were found to have bilateral Gleason 9 (4 + 5) cancer. MR scan suggested you most likely have bilateral extension into seminal vesicles T3b disease. There is also suspicion of lymph node involvement on the left side.
I have told you that in view of the fact that all of these problems they will put you at a very high risk of the possibility of extracapsular spread going into your lymph node.Potentially you could consider surgery or radiotherapy however, I have told you that surgery in all probability would not be able to remove all of the cancer and you would end up having hormones and radiotherapy after the operation.
I have also told you that the other option you could consider would be to go straight to having hormones and radiotherapy and that would be equally effective in terms of short to medium outcome.

I have MRI & CT scans next Tuesday and start RT 9th April at Freeman Hospital Newcastle. Is it worth the grief of treatment bearing in mind my diagnosis?
Richard

User
Posted 20 March 2018 11:30:05(UTC)

I don't see the problem. You have been offered curative treatment because they believe it has a chance of working. Why would you reject that and opt instead for a holding treatment that will eventually stop working and lead to early death? It seems like a no brainer to me.

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


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User
Posted 20 March 2018 12:33:48(UTC)

I consider myself told off and will try to be more positive thanks Lyn! I get the odd low due to the uncertainty of the whole situation but I suppose everyone does!

User
Posted 20 March 2018 16:36:02(UTC)

Hi, Rich
I had T3b and Gleason 9 and PSA=19 and was told that it was not a good idea to have an operation in the sense of cutting. But I did have Brachytherapy and now I seem to be clear, although still on check ups. So that's an initial big zap of radiation and then regular radiation for about 5 weeks, followed by the dreaded Zoladex for two years. Its a good treatment: about 80-90 % survival after 5 years (read the papers, being an inquisitive old f).
"Castration" is only temporary: once Zoladex is stopped, so does its depressive effect, and testosterone and sex drive comes back, with sort of not bad dry orgasms. Still waiting for the erectile disfunction to stop (double negative). But, can't have everything.

I think all us heroes have copying strategies. I have my own internal fear/anger/sadness chart. My trick is simple to acknowledge which I am are feeling. I got sad mostly, a bit less recently.

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User
Posted 20 March 2018 19:13:39(UTC)

Thanks Otto. I wasn’t offered Brachytherapy and I’m not sure why. Maybe it was the suspected left hand node involvement?

User
Posted 21 March 2018 22:45:10(UTC)

I was told BrachyT not an option due to spread so my realistic option is where I'm going.
I STILL haven't received Flomax prescription!!!!!!!! I rang again on Friday but pathetic response!! 2 weeks since onco recommended using it?

User
Posted 22 March 2018 15:45:21(UTC)

Originally Posted by: Online Community Member

I saw you at the Nuffield Hospital today. You are a 50 year old gentleman who was under investigation with a PSA of 18mg/ml and were found to have bilateral Gleason 9 (4 + 5) cancer. MR scan suggested you most likely have bilateral extension into seminal vesicles T3b disease. There is also suspicion of lymph node involvement on the left side. 

I have told you that in view of the fact that all of these problems they will put you at a very high risk of the possibility of extracapsular spread going into your lymph node. Potentially you could consider surgery or radiotherapy however, I have told you that surgery in all probability would not be able to remove all of the cancer and you would end up having hormones and radiotherapy after the operation.
I have also told you that the other option you could consider would be to go straight to having hormones and radiotherapy and that would be equally effective in terms of short to medium outcome.

 

Hi Rich, 

From your previous posts I thought surgery was ruled out.  Yet reading the above it says you could potentially consider the possibility of surgery.   The impression I have is that many surgeons refuse to operate on high risk patients, yet this note seems to be offering it. I'm not sure if the person writing the above is the surgeon as you could be going on a wild goose chase and get a refusal to operate if he's not.  However if it was me I'd jump at the chance of surgery and if possible follow it up with RT and hormones to be as aggressive as I could.  During the op he could remove the suspect lymph nodes.

I'd also be asking if the RT is going to go to the nodes if that's the way you go.

I haven't been following all your notes so hope this isn't too off beam.

Regards
Peter

 

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User
Posted 22 March 2018 16:10:49(UTC)

Hello Peter,

I've mentioned this before but during the consultation he said if there was more than a 50% chance of success he would do the op. He very specifically said "but in your case the chance of removing everything is less than 50% so not recommended" (or words to that effect). He said due to the proximity to the bladder wall there would be risk of damage to it. He added that ED and incontinence would be guaranteed and permanent. Other people including onco also added that the surgeon makes good money out of operating so if he was advising against it then his reasoning should be trusted. Onco also said HT/RT was much better option.....
Regards,
Richard

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

One more question to the masses. Is there any logic to have restricted surgery to remove the major cancerous cells, sparing nerves, removing lymph nodes then mopping up with SRT?

User
Posted 22 March 2018 19:45:26(UTC)

It is an actual treatment choice - RP with RT or RP with RT/HT - and we have members for whom that has been the recommendation. But in those cases it would be referred to as ART (adjuvant) not SRT.

It wasn't offered to you - I suspect this is due to the proximity to the bladder rather than anything else but you could ask about it. Not a popular choice due to the double side effects.

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


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User
Posted 22 March 2018 21:47:15(UTC)

Easily said but much more difficult to do. It would be difficult to know where to stop. The Prostate is a complex organ to remove in it's entirety and this would be tantamount to a full prostatectomy. Certainly nerve bundles can be left if not invaded by cancer but where they are if left where there is cancer, the operation would seem to lose it's advantage and it is doubtful the surgeon would agree to do the op with such limiting restrictions.

Your thread is titled "Told operation is too risky"!?

Barry
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User
Posted 22 March 2018 22:09:00(UTC)

Ah sorry - I misunderstood the question. I thought Rich was asking whether there was any benefit in having RP knowing that RT will still be needed.

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


User
Posted 22 March 2018 22:14:17(UTC)

Thanks Lyn & Barry. I only get one shot at this stage and I'm not too knowledgeable as you are probably well aware! Big bro seems to keep referring back to RP. I am confident that this was not the recommendation. 9th of April it is then..
Thank you

User
Posted 22 March 2018 22:16:35(UTC)

Lyn - you did understand as I was asking that.

User
Posted 23 March 2018 00:22:29(UTC)

Ah okay - big brother wants it to go away and perhaps is stuck in 'if I was you I would just get rid of it' mode. Fortunately, your specialists know a bit more than your brother does but you can't blame him - especially if he knows of people who have supposedly had the op and ''been fine'. We had this problem with a brother-in-law when John was diagnosed - his 90 year old dad had PCa years ago and 'was fine' so he couldn't really see why we were upset. The trouble is that men don't often talk about the detail to others and they look fine so living with incontinence, permanent bladder damage, potential lifelong self-catheterisation etc (which your surgeon seems to think you would be at increased risk of) may not be fully understood by your brother.

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


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User
Posted 23 March 2018 11:22:11(UTC)

So is salvage RT less effective than going straight for HT/RT treatment?

User
Posted 23 March 2018 16:39:58(UTC)

It's ok, PCUK nurses explained everything.........

User
Posted 24 March 2018 20:45:36(UTC)

Spoke too soon about being side effect free. Started Tamsulosin yesterday eventually. Woke up for one of night time wees which I do sitting down. I then went light headed then got very hot and was sweating profusely (it was like a spray from my forehead?). The sweat was pooling on the bathroom floor. sat down for 5 mins on bathroom floor then went back to bed. Is this normal hot flush side effect?
Regards,
Richard

User
Posted 24 March 2018 21:24:59(UTC)

Yep

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


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User
Posted 24 March 2018 22:05:41(UTC)

My condition is too advanced to have got away without side effects so I'm not surprised ...... I'm only 3/4 months into this and I know there are many people a lot worse off. I apologise if I come across as being insensitive, selfish and nowhere near as bad as a lot of the people on this site. I do love this site and intend to use it as much as I possibly can. I am open to advice (orders!) about how to be a better member. Night everyone.
Richard

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User
Posted 24 March 2018 22:32:18(UTC)

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

User
Posted 25 March 2018 01:05:31(UTC)

Many, probably most men do not understand the complexity of PCa and the subtleties that may make a treatment more suitable for a particular individual from a clinical aspect. (Even doctors can differ in their assessments which of course makes it even more difficult for the patient). Perhaps a general view may be offered, particularly on the basis of various tables based on averages but a patient may at the extreme rather than in the middle of results. Thus comments by others that imply X is a good treatment for you or Y is not a good treatment for you because those offering such comment had respectively a good or bad experience, should not be taken as necessarily applicable to an individual.

It is true that treatments are improving and taken overall affected men are living longer but sadly not all of them and treatment can cause life changing side effects. So for those who proffer comments such as those you mention and additionally such words as 'if you have to have a cancer PCa is the one to have' trivialize the impact on men that the disease and it's treatment can have.

Barry
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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 25 March 2018 09:30:51(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



I know what you mean. Even my dentist whilst telling her about my husband said there is no need to worry as it's a disease you die with not of. Just goes to show what the public perception is although maybe with all the recent media attention that will change hopefully.

Regards
Ann
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User
Posted 25 March 2018 09:57:10(UTC)

It's weird but I almost get the feeling that I'm too young! It doesn't seem to offer any advantage? Loads of time for negative effects of RT and poor prospects for remission. Even my brothers don't seem to get the severity of it even after what happened to Dad. I should I suppose, assume they do and they are doing what they think is best for me. Another common saying I hear, "you'll be alright man" (geordies!). There are good sides, just bought my son and I a new pair of Loakes each! ;)

User
Posted 26 March 2018 03:05:44(UTC)

There is something of which I am certain and that is that although even timely treatment does not always provide a 'cure' PCa but it often slows down it's advance, the price you pay in terms of time, undergoing the treatment which may be ongoing and the side side effects. Some will think at some point that the price is too high, a decision many of us will have to make but others may decide a longer if less active extended life is worthwhile. Death due to PCa is often a rotten way to go and I for one would rather another was the reason, more likely to be the case as we grow old.

Barry
User
Posted 26 March 2018 21:24:14(UTC)

I'm back to Freeman Newcastle tomorrow for a good few hours. 10am for session with onco to go through consent. 11am MRI (hate these!) then 1:30 for CT contrast. I start RT 9th April - is there any restriction about driving to/from RT sessions? I've booked "Daft as a brush" who will take me but I feel a bit embarrassed as I'll be going to work every day and not sure I need them? I could drive straight from work a lot quicker than going home and getting pick up and drop off from this superb charity.
Regards,
Richard

User
Posted 26 March 2018 21:51:19(UTC)
Hope all goes well with the treatment. I was driving a round trip of 94 miles a day for my RT with no problem but it depends on how you feel. If fatigue starts to kick in then you could be unfit to drive which would be an offence and so you need to monitor that. The treatment itself didn't cause any driving related problems but you need to just be sensible.

Kevan
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User
Posted 27 March 2018 08:26:40(UTC)

Urgency can be an issue as the weeks go by. Hence some guys carry a bottle in car to pee in. Not sure how "Daft as a brush" would feel about peeing in their car -:) I went though RT no prob, no bottle needed just a had pee before I came out. Should be less of an issue now targeting has improved.

Ray

User
Posted 27 March 2018 09:20:52(UTC)

I have a German Shepherd Dog who is a “cryptorchid”, i.e. has an undescended testicle. This and his other one will have to be removed shortly as the hidden one may well become cancerous.

I was intrigued to see in America some vets offer their castrated patients silicone “Neuticles” - cosmetic testicle implants, in five sizes from Chihuahua to Great Dane, purely for the vanity of their owners!

I have never heard of it for humans until I read this thread.

Something new every day.

 
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