Me as well

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

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

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

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

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. 

Further update

Following my second biopsy on 16/09, I had a phone call yesterday from the hospital asking whether I could pop in and speak to the consultant at 9.20 am today. I duly attended the meeting and was told the following:

My second biopsy, which was a TP under general anaesthetic (the first one on 04/06 was also a TP, but under local anaesthetic) extracted 19 cores, of which 16 were found to be cancerous (the previous biopsy extracted 13 cores and found only 3 to be cancerous). The grading is still 2 ( 3+4 in old money) and, as before, only 5% of the extracted core samples were deemed to be category 2. The rest were category 1 (3+3). What this latest biopsy has found, however, is that the cancer is spread throughout the prostate, whereas the earlier biopsy suggested it was confined to just a small area on the right side. The consultant doesn't think there has been any change since the first biopsy, advising that the second biopsy has just unearthed more. The bottom line is that the consultant now recommends that affirmative action is now taken and, as part of the process, a CT scan (to confirm that there is no spread) has been arranged for 04/10. Per the consultant, the evidence, based on previous scans and biopsies, suggest that the cancer is well contained within the prostate itself and that there is no spread.

I have been given a period of time to consider what treatment (Surgery, Chemo, Radiation etc) I think is best for me and have been given the option to speak to the various consultants about each.  The nurse assigned to my case will phone me in a few days or so to ask me for my decision.

Now, I know this is a personal choice and that there have been many comments made on this forum detailing what people think is best, but  if anybody does want to chip in please feel free to do so.

Ivan

Edited by member 28 Sep 2021 at 13:39  | Reason: Not specified

Thanks John for your response

I have just checked my account with Addenbrookes, where the letter I will be sent has been electronically stored,and  it does say a "CT abdomen pelvis w contrast" will be undertaken on 04/10. I will check with the consultant later today to ensure that is what he meant (obviously being careful not to doubt his magnificence). I wonder whether a bone scan is not deemed necessary because, although there is more cancer than first thought, it is still relatively low grade?

42 samples eh? Now that was a biopsy and a half. Well, almost 3 actually!

My latest biopsy was discussed by Addenbrookes MD team and that is why I was called into the hospital earlier today. The surgeon would not commit himself as to what what he thought would be best in my case, instead just highlighting that either surgery or radiation would be best.He  went onto say that because of my circumstances  he was prepared to use the "cure" word for either treatment. He pointed out taking no action at this time would probably result in me dying of prostate cancer at some stage in the future, but that by taking action now would probably result in me dying of something else (Hopefully, old age at 102!)

I do intend to undertake a deal of further research before making my mind up and am fortunate in that respect as I do have time to do so. Many of the surgeons at Addenbrookes work in the private sector too and have very impressive CV's, so it is very likely that they are good at what they do.

As previously mentioned, thanks for your comment

Ivan

Edited by member 28 Sep 2021 at 17:36  | Reason: Not specified

Surgery or HT/RT are the usual choices. I went down the HT/RT route (strongly recommended in my case) and found it all very tolerable. Two and a half years after RT and (touch wood) life is good.

Best wishes,

Chris

Thanks, Peter, for your detailed comment

Yes, the couple of surgeons who have undertaken robot assisted nerve sparing radical prostatectomy  at Addenbrookes have good write-ups on the NHS and private clinic webpages and have undertaken around 300 operations each. Not as many, perhaps, as the surgeon Bollinge used for his surgery, but at least they are not wearing L-plates. I am, fortunately, rich enough to pay the £20K it would cost to go private if I felt that was best for me , so that is still an option. Addenbrookes also seem to have consultants with a deal of expertise in HT/RT, so I am really spoilt for choice.

 I think I am in your camp and though I opted for AS because that seemed the right thing to do at the time, the fact that I now have to make a decision re treatment is probably all for the best. It does mean that something positive is being done.

My understanding is that Addenbrookes, well it was the case back in June,  would be able to schedule me for treatment within a month. So, not too bad at all.

Ivan

Thanks, Chris, for your response and explanation; most useful

The test readings which started my alarm bells ringing was PSA readings of 5.32 in March and 5.76 in April. The subsequent MRI scan then revealed a lesion measuring 15 mm X 8 mm and the biopsy that cancer was present. The first biopsy readings were 3+4, T2, the same as the second biopsy that I have just had. So, different enough from your readings for me to have a wider choice of treatment options.

Yes, good results from your treatment.Long may it continue.

Ivan

Thanks, Elaine for your comment

The men I personally know that have had prostate cancer have all opted for surgery, primarily because they want to "get it out" but also because, by having surgery, you can still, if the need arises, undergo a course of RT. One of the 3 men in my small village of 300 people, had, in the end, to have radiotherapy after surgery, but that was, much to his annoyance, because his consultant kept telling him to wait before having any treatment. In the end he waited over 2 years before undergoing any treatment and he now wishes (though he is still alive 13 years after his final bout of treatment) that he had insisted on having surgery as soon as the cancer had been detected.

Ivan

An update to advise that I underwent RALP surgery on 21/12/21.

To assist others who may be contemplating surgery for their prostate cancer I have outlined below what occurred.

My surgery was at Addenbrookes and I had to get to the hospital by 7 am. I was instructed to take 15 mg of Lansoprazole ( For acid reflux) and  a suppository (to clear the bowels) by 6 pm the night before and the same tablets by 5 am the day of the surgery. I got up at 4 am, had a shower, took the tablets and at 6.15 am my son drove me the  to the hospital (6 miles away). I got to the hospital at 6.40 am and was surprised to find that there were already around 20 people waiting to be admitted to the surgery units. They were not, though, all undergoing surgery for prostate cancer.

I was admitted to a ward, assigned my own bed, and was told that my surgery would take place in the afternoon, around 1.30 pm. The morning surgery for prostate removal took place at around 8.15 am. Aware that the wait for my surgery could be a number of hours, I had taken a book with me and underwent several blood pressure and other tests during the period up to my surgery. I was called into surgery at 1.50 pm and after being given  painkillers and an anaesthetic via a vein in my hand, I woke up at around 5.30 pm, minus my prostate, in a recovery ward.Fifteen or so minutes later I was taken back to the ward and the bed I had been assigned to in the morning.  I was immediately approached and asked whether I wanted a drink (I was instructed not to drink anything after 5 am the day of the surgery, though was allowed to drink water up to 10 am at the hospital because my surgery was scheduled for the afternoon) and food ( I was instructed not to eat after 10 pm the night before, but had actually not actually eaten after 6 pm). Because I was ravenous and thirsty,  I asked for and was given 2 cups of tea, a constantly filled up jug of water and a meal of roast chicken.

The catheter had already been inserted during surgery and it was interesting seeing the night bag filling up as I drunk copious amounts of liquid. It was regularly emptied and measured and at least one of the bags of urine was dipstick tested. The bag was checked and where necessary regularly emptied throughout the night and up to the point I was discharged from the hospital. The first couple of bags had a pinkish hue to them but after that the contents became much clearer. The catheter down the penis is obviously an inconvenience, but it was childishly amusing to note that while I could lay in bed and pee the other 5 patients in my room of the hospital were constantly getting up throughout the night to go to the toilet.

All 6 of us in that room who had had surgery and been anaesthetised  found that we could only get to sleep for an hour or so and would then wake up for a while before again going back to sleep. The night nurse said that was usual for patients that are given a general anaesthetic. One of the other side effects is that it reduces blood pressure and that is the reason you are told not to take blood pressure pills on the day of your surgery.

I was visited by the surgeon who had performed the operation at around 7.50 am today ( 22/12) and because I had already  walked the outside of the wards corridor 20 times ( I wanted to get it done before the days new surgery arrivals arrived by 7 am) and was readily passing urine, I was told that I could go home later today. After further blood pressure tests, having some food and drink, and being given  5 different types of medicine to take now and after my catheter was removed I was allowed to leave the hospital at just before 2 pm.

The surgeon was very pleased with the operation and said that not only had he been able to spare the nerves on the left side of my prostate but that he had also been able to spare most on the right side too (which initially he did not think he would be able to do). Another nice touch was that one of the nurses with me during surgery phoned my son at 5.45 pm on the day of the surgery to let him know that everything had gone well. I eventually phoned him at 7.30 pm after I had had some food and drink and felt less groggy.

I meant to mention that all of us that had had general anaesthetic surgery had sore throats and for a number of hours found it hard to eat and swallow. We were warned about this prior to surgery and was told that this would be because a breathing tube would be inserted down our throats after we were unconscious.

Though it is very early days (hours in fact), I am in no pain, the catheter is an inconvenience and not an issue, though, that said, I have already used some Instillagel on the top of my penis to alleviate some pain.There is a slight leakage from the top of the penis but this is being absorbed by the Tena incontinence pads that I bought in readiness  for the period after my operation. Similarly, I have bought a soft cotton incontinence waterproof sheet from Dunelm which I have put on one of my spare beds where I will be sleeping until my catheter is removed.

Apart from the 7 wounds around my stomach area and the catheter you would not know that I had had an operation and I actually feel quite good. The catheter will be removed next Friday (31/12) and a follow up chat will take place with the surgeon in 6 weeks time. He will then have the results of the histology of my removed prostate which, hopefully, will show that a) it has negative margins and b) it is the same grading as the original biopsies.

Finally, I would like to thank all of you that post on this forum as it has greatly assisted my prostate cancer journey and ensured that I not only had the right information but that I had the right equipment for my post-surgery recovery.

Edited by member 23 Dec 2021 at 16:03  | Reason: Not specified

Hello Barry

Further to my earlier response, I messaged Addenbrookes for clarification and have received the following response:

"Hope you are recovering well.You are not a nuisance,it seems the information little confusing,
You only need antibiotics on the day of catheter removal in the morning as a single dose. I think there may have some supply issues with one tablet on its own hence given a full pack.
I apologise for the confusion caused"

So,  it has been confirmed that I just take a single dose of the tablet. Thanks for highlighting what could have been a potential issue.

Ivan

Good to read your detailed run through of the operation Ivan. Very similar for Rob although he wasn’t given anything to clear his bowels and was allowed a light breakfast before 7am. He was booked in for 11am and surgery took place around 2:30pm.

Rob also wasn’t prescribed any of the antibiotic tablets 🤷🏻‍♀️ he just came back with his injections, paracetamol, ibuprofen and codeine (he hasn’t needed the codeine though). If I read that correctly is the tablet for before you get catheter removed? I wonder if rob will be given that when he had his clips removed and he will have an extra week with the catheter?

Hope you’re feeling well enough to enjoy a bit of Christmas. Hope your recovery continues to be good. Take care and all the best x

Thanks Ivan.

We should be in next week to have his clips removed so will ask them then. Robs catheter is in for 2 weeks just because of the bladder neck reconstruction so not booked in for that until the 4th Jan.

Yes he’s feeling pretty good, mainly resting so snoozing quite a bit….he’s still got prostap in his system though aswell so possibly some tiredness from that. I’m going to attempt a Christmas lunch for the two of us tomorrow and just see how he goes with it….got soup on hand if needed x