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Me as well

User
Posted 15 Jun 2021 at 16:37

That is really good news. 

Ido4

User
Posted 17 Jun 2021 at 13:42

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 14:29

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 17:36

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 17:44

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 18:44

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 18:53

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 22:11
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 17 Jun 2021 at 23:47

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 08:57

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 09:09

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 15:07
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 16:12

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 16:42

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.

User
Posted 18 Jun 2021 at 17:12

Oh Dear. On diagnosis I said I didn't want treatment but had surgery, on recurrence I said I wasn't having salvage RT but did, so I am consistent. 

On diagnosis my consultant said without treatment I would still be around in 10-15 years, but would I have coped with knowing the cancer was spreading through my body, probably not and there would have always been "what ifs"in the back of my mind.

It is often said that outcomes of treatments are similar. That means about 30 percent of primary treatments will not eradicate the cancer or put another way 70 percent of men will have a successful primary treatment. I know guys who had surgery over 15 years ago and are still here. Not all side effects are guaranteed.

I have replied in the past that I would 100 percent follow the same route. We have an amazing ability to adapt to our "new normal". My surgery side effects were all manageable or fixable. My side effects of Salvage RT are not common. My SRT side effects are manageable but not fixable, but I don't think it is fair to compare RT with SRT.

Good luck with whichever choice you make.

Thanks Chris

User
Posted 08 Sep 2021 at 12:17

An Update

 

I have just received the results of  the PSA test I had on 06/09/21 and was told by the consultant who phoned me today that my PSA has slightly increased to 6.01 (It was 5.76 in April). He advised that because of the increase and because I am on Active Surveillance, he would book me in for a general anaesthetic transperineal prostate biopsy so that more (30) core samples could be taken. I had a local anaesthetic TP Biopsy in June,  when 13 core samples were taken (details are on my profile), and the surgeon now wants to make sure that nothing was missed.

 

No need to comment, unless you want to, the update is for information only

User
Posted 09 Sep 2021 at 10:15

Further Update

I  have just been advised by Addenbrookes that my biopsy (earlier message refers) has been booked in for next Thursday (16/09). They don't hang about at Addenbrookes, I am pleased to say.

User
Posted 09 Sep 2021 at 15:52

Wishing you the best of luck with the biopsy.

User
Posted 17 Sep 2021 at 15:12

Further Update

I had my general anaesthetic  biopsy yesterday and, though I have not yet received the results, thought it would be useful to comment so that those concerned about about undergoing such a procedure can get a feel for what happens. I had a local anaesthetic  biopsy on 04/06 and although that was fine, no real pain etc, I found that the one I have just had was the best by far (no pain whatsoever, hardly any bleeding and no discomfort the next day)

Turning up at Addenbrookes at 11 am I was, after checking in, put in a cubicle, which was furnished with a bed, a chair and a table. My surgery was scheduled for 14.35 ( I was number 5 on the list) and  while I was waiting for my surgery I was regularly visited by a couple of on-duty nurses; by the surgeon and by the anaesthetist. I was fully appraised of what would take place and was finally collected for the surgery at 15.05. Taken into the operating theatre, I was surprised to find around 8 people hovering around (there were only 3 present when I had my local biopsy back in June) and confirmed that they would all be involved in one way or another in my surgery. After laying down on the operating room table, the anaesthetist and her assistant came over, introduced themselves and told me again what they were going to do. After putting the cannula in a vein in my left hand and  attaching the tubing to it,  I was told that I would first be given a dose of a powerful pain relief drug, followed by the general anaesthetic drug. I knew that the pain relief drug had been administered because the back of my neck went cold, but was not aware of anything else happening.

When I came too about 1 hour 15 mins after being wheeled in for the biopsy procedure, I found myself in a pre-recovery ward with a nurse by the side of my bed. She was monitoring a screen showing my vital signals ( Blood pressure, pulse rate, body temperature etc) and after about 15 minutes of me waking up, I was then wheeled into a small ward containing room for 4 beds. I was given  a sandwich, water and cups of tea and was told that I could not leave until, firstly, I had had at least 2 pees  and ,secondly, until my bladder had less than 150 ml of  liquid in it. It was difficult to pee at first, but I eventually managed to do so, but it was not until a number of pees & a number of hours later that the bladder scan showed my bladder content had reduced to 97 ml of liquid. So, it was not until 21.50, nearly 11 hours after turning up , that I was allowed to go home. 

User
Posted 17 Sep 2021 at 15:18

Great to know you came thru ok and had a reasonable experience.

You can see why in the last year they were only doing TRUS biopsies, as the theatre time, no of staff, procedures etc are much smaller! Hopefully the TP one will be the norm....less risky (apart from the GA) and probably easier to get their targets with the patient being comatose!

Best wishes for the results.

I'm on week 3 of HT....known as the Village Eunuch!

 

User
Posted 17 Sep 2021 at 15:44

Thanks Prof for your comments and, yes, hopefully now things are getting back to near-normal TP biopsies are the ones everybody will be having. I am never keen being "knocked out" (last time was in 2001 when I had a repair job done on a finger that had a double spiral fracture), so was a little apprehensive as the time for my surgery  drew ever closer.

 

Re your Eunuch comment, what about stuffing a football or rugby ball (or both) down the front of your trousers to allay any comments that may arise from you speaking in a high pitched voice?

User
Posted 17 Sep 2021 at 17:41
Yet another example of the next-to-useless TRUS biopsy!

There have been guys here who have had FIVE TRUS procedures before a definitive diagnosis via a transperineal biopsy! I know three guys personally, who had an inconclusive TRUS and had to have a proper one later.

I don’t suppose your test will give you the ‘all clear’, but I hope your results will give you some low figures.

Cheers, John.

User
Posted 17 Sep 2021 at 17:52

Actually, John, my first biopsy back in June was a guided transperineal  one but because it  was under a local anaesthetic  only 13 core samples were taken. 

 

I fully agree, though, with your vent about  TRUS biopsies.

 

Ivan

 
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