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Me as well

User
Posted 14 Jun 2021 at 19:22

Well, we will have to beg to differ.

 

Europe is fine it is the EU, to my mind, that is the problem

User
Posted 14 Jun 2021 at 20:36

Originally Posted by: Online Community Member

Now I am not sure that all of my prostate can have cancer cells and would have expected at least a little part of it to be normal i.e. 3 plus 3 = 6 or less.

Well mine was >90% cancer in all cores, so yes they could all have cancer.

 

Dave

User
Posted 14 Jun 2021 at 20:55

Thanks, I think, for that!

 

Will report back tomorrow once I have spoken to the surgeon

User
Posted 14 Jun 2021 at 21:12
Ah yes, I forgot that some departments report grade groups rather than Gleason scores. You could be right.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jun 2021 at 12:38

Well, I have just had my telephone call from the Surgeon/consultant and thought I ought to post what was said before I forget what was said.

First of all, Lyn was correct in that the letter I got detailing the numbers against various parts of my prostate that were sampled were indeed the core samples taken. When I asked why underneath those numbers was the statement " The study was performed and the findings are summarised above"  no comment was made. I pushed the point and suggested it would have been better if the statement had said and the core samples taken in each are as above, but, again, elicited no response.

All of the samples taken were graded 1 & 2 (see my earlier message re what that actually means) and it appears that Addenbrookes no longer use the Gleason score ( 3 plus 3 = 6 etc). So, based on the core samples, my prostate cancer is likely not to grow or only grow very slowly. The surgeon advised that  based on my cancer grading only 5% of men with my grading would over 15 years gain a survival benefit by taking action at this time i.e. 95 % of men would still be alive, and possibly have died of something else, if no action was taken. So, for me, a good result.

Whilst typing out this message, I was contacted by the specialist nurse assigned to my case, who introduced herself and discussed what the results meant for me. She will send me some paperwork today and then phone me again on Friday to discuss the matter further. The view of the surgeon and the specialist nurse is that active surveillance in the short term might be best.

 

Edited by member 16 Jun 2021 at 10:39  | Reason: Not specified

User
Posted 15 Jun 2021 at 12:51

Yes, right chuffed as one always thinks the worse.

 

My fingers are crossed for you and even if the results are not as good as mine there are many treatments available that can make a big difference. My hope is that immunotherapy will provide, in the years ahead, a breakthrough in treating all cancers  and eventually stop it dead in its tracks. If as much money was poured into cancer treatments as was invested in  dealing with Covid I am sure that the breakthrough would not be that far away.

 

Let us know how you get on

 

Ivan

User
Posted 15 Jun 2021 at 17:37

That is really good news. 

Ido4

User
Posted 17 Jun 2021 at 14:42

Just in case somebody will find this information useful, I detail below the information contained in a letter I have received from the consultant following his telephone call to me on 15/06/21. I have also been sent a weighty envelope with loads of information to enable me to decide on how to proceed. The specialist nurse assigned to me will phone me Friday (tomorrow) to garner my views etc.

 

Prostate cancer diagnosed June 21

Diagnostic PSA 5.76 April 2021

Prostate biopsies showing left all cores benign, right grade group 1 (Gleason 3 +3 =6) and grade group 2 (Gleason 3 +4 = 7) total core involvement 3/11 (target counted as 1)

Prostate MRI T2 M4 55 cc gland

70 out of 100 men are alive at 15 years with initial conservative treatment

75 out of 100 men treated (an extra 5) are alive because of radical treatment

Of the men who would not survive, 21 would die due to causes not related to prostate cancer

 

My initial thoughts are to go with active surveillance , but it would be useful to know whether anybody in a similar position to me has taken a different approach

 

Ivan

User
Posted 17 Jun 2021 at 15:29

Prof Z. That will be a Chateau Musar from Lebanon probably. There is a Lesson in Hope against Adversity. They have continued making wines in that area throughout all the ghastly conflicts.

User
Posted 17 Jun 2021 at 18:36

I think the figures he has quoted come from this website, put in your details, and choose radical or conservative treatment.

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

I think it is a really nice tool to use. I agree radical treatment is not increasing your chances much, but it is a little bit extra. 

 

Dave

User
Posted 17 Jun 2021 at 18:44

Hi,  I notice you wrote the lesion is 15mm and prostate 55ml in a post on another thread.  Quite a large prostate and 15mm lesion isn’t small, though not particularly big.  Mine was 13mm.

I think the number of cores found in the biopsy can sometimes be misleading as mine found only one sample and was judged as 4+3 which after the operation was 4+4.  The size of the lesion, psa, gleason, and psa rate of change are the most significant.  Although some people never get high psa and some never know their psa trend.

Sorry my head isn’t adjusted to grades for Gleason although I’ll practice it.

The consultant appears to want you to wait and implies you may never need treatment, those figures are re-assuring.    It must surely be very tempting.   Although 15mm and a 4 in the Gleason are amber lights.

If you have a history of steady psa readings holding on at least for now could be a good plan.   

I’m not sure what your Active Surveillance plan involves.   I’d want 3 monthly psa tests at least to look for a good trend.  Perhaps they move to 6 monthly.  Although if that was going on forever it wouldn’t be too good.  At some point you may then decide not to put off the inevitable.

I’m reluctant to tell people to have treatment if there is a chance they don’t need it.  There is no doubt it changes your life, although once you’re diagnosed you’re on the treadmill anyway and have to go with it.  Although there are some who won’t go with it and want their quality of life, I could name someone who often writes on here.

All the best,
Peter

User
Posted 17 Jun 2021 at 19:44

Thank you, Peter, for your considered and informative response.

The decision as to whether to not do anything at this stage would be a lot easier if the lesion was only 5 mm instead of 15 mm and if I was totally a 3 + 3 =6 (Category 1) rather than a mix of category 1 & category 2 ( 3 + 4 =7). I mentioned the size of my lesion to the specialist nurse that phoned me after the consultant, but she did not seem to think that the size of my lesion was of particular concern.

 

Yes, it tempting to do nothing at the moment, to wait and see, partly because one is always hopeful that a cancer breakthrough could just be around the corner. But, I need to take account of the present  and need to base my decision on what is available now rather than what could be available in the future.  A neighbour of mine regretted his decision to do nothing and eventually, with a PSA reading of 28 and at age 68, had his prostate removed. He is just about to celebrate his 80th birthday and for him the decision to remove his prostate was the correct one. I will have a chat with him to ascertain what his initial readings were to see if that will help me make a final decision.

But, 3 monthly PSA testing regieme sounds like a good plan coupled with, perhaps, a 6 monthly MRI scan to see if the lesion is getting bigger.

I will read the folder of paperwork just sent to me this evening so I am ready when the specialist nurse phones me tomorrow.

 

Ivan

User
Posted 17 Jun 2021 at 19:53

Thanks, Dave ,for your response.

 

You are correct the consultant's figures were lifted from the website you mentioned and I used it myself just to clarify the various scenarios. In my case it suggested I could, potentially, gain another 3 years of life by having surgery. But, with medical science advancing at the rate it is, the outcome could, in the near future, be even better by doing nothing.  To misquote from Dirty Harry, " Do you feel lucky, Punk? Well, do you?  

User
Posted 17 Jun 2021 at 23:11
A 15mm lesion doesn't mean that you have a tumour in your prostate that measures 1.5cm - it just means that the MRI picked up an area of concern from which samples needed to be taken - the 3 positive cores from 11 will presumably have been from the 5mm area.

People sometimes imagine that prostate cancer grows as a distinct tumour, like you would imagine a ganglion getting bigger and bigger, but it isn't like that.

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

User
Posted 18 Jun 2021 at 00:47

Oh dear.

To pick up on medical breakthroughs, I was diagnosed seven and a half years ago. At the time the big news from our university hospital was that a vaccine for prostate cancer would be available in five years, It didn't work and we are still waiting. 

All the best with your decision process not an easy choice.

Thanks Chris

User
Posted 18 Jun 2021 at 09:57

Thanks, Chris, for your comments.

Reading your profile suggests that you have been on a roller coaster and though your initial results were not quite as "good" as mine, I wonder whether with hindsight you might have done things differently?

User
Posted 18 Jun 2021 at 10:09

Thanks, Lyn, for your comments

 

Yes, I did think that my lesion was a cancerous lump measuring 15 mm x 8 mm so good to know that is not the case

User
Posted 18 Jun 2021 at 16:07
OhDear, if I have understood the above correctly it sounds like really excellent news. I sincerely hope the active surveillance goes on for many, many years to come!

I am currently waiting to hear from Lister Hospital what course of treatment the MDT meeting will recommend for me, but having just read through your thread from start to finish, at least I now know not to accept their prognosis quite so unquestioningly.

So thank you, I have found your thread very helpful.

User
Posted 18 Jun 2021 at 17:12

Afternoon Life.......

 

Yes, you have understood correctly & the news is pretty good. Not as good as not having cancer but not too bad all said & done. Thanks by the way for your hope that my active surveillance is a long term "thing" I have to put up with. As I mentioned in an earlier message, my hope is that in a few years there may be a treatment that stops the cancer from growing and involves no more than taking a daily pill or a yearly injection.

I note that you had treatment back in 2009, so a lesson to us all that prostate cancer for some- perhaps most- of us is not an immediate death sentence. I assume the Lister Hospital you mention is in Stevenage? My relatives have had treatment there and have found it to be very good.

The comments by others on this message thread have been very useful/helpful and I agree that undertaking your own research and then taking account of what the experts say is a very good way forward.

All the best for your report back by the consultant

User
Posted 18 Jun 2021 at 17:42

For the sake of completeness , the specialist nurse assigned to my case (she has a caseload of over 300 prostate cancer patients)  has just phoned me to talk things through and, as we did, I took the opportunity to further question her about my condition.

As advised by Lyn in an earlier message, although my lesion is 15 mm x 8 mm that is not the actual size of the cancer and in reality it is probably a lot smaller. She confirmed that the cancer is all on the right side of my prostate and that the samples taken from it show that less than 5% of it are category 2 ( Gleason 3 + 4 = 7). Virtually all of the samples  taken from the right side are category 1 (Gleason 3 + 3 = 6), so  useful information when deciding how to proceed. The specialist nurse advised that there are trails taking place at Addenbrookes involving HT, with a view to determining whether this is a suitable treatment for Active Surveillance patients. Some of her patients are involved in the trail and she is fully aware that for some this treatment is not popular due to the side effects (which vary from patient to patient).

Because of my biopsy findings, I decided to opt for Active Surveillance and the next stage for this will be a PSA test 2 weeks before my next telephone call (3 months time) with the consultant.

 
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