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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 15:44

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

User
Posted 28 Sep 2021 at 13:38

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

User
Posted 28 Sep 2021 at 15:21
As Steve above said, I’m surprised you have been offered a CT scan, as in your situation a bone scan would be more appropriate. Are you sure you are not booked in for that?

Belt and braces would be a Gallium-68 PET-PSMA scan to determine the full extent of the cancer, but that may be very difficult to obtain.

I had 42 samples taken during my one and only biopsy under G.A.

Don’t feel pressured to do anything in a hurry. Find a highly-rated surgeon and discuss it with him, and ask for a second opinion from another oncologist. I presume you have had a treatment plan recommended by your Multi-Disciplinary Team?

I was diagnosed in November, and only had surgery the following June, when I had found a ‘top’ surgeon.

Best of luck.

Cheers, John.

User
Posted 28 Sep 2021 at 15:51

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

User
Posted 28 Sep 2021 at 15:53

Thanks Prof for your message

 

All good comments and I will definitely check out your blog

 

Ivan

User
Posted 28 Sep 2021 at 19:25
Not all hospitals automatically offer a bone scan, particularly where a high % of positive cells are G3. PSMA scans are certainly not offered routinely as part of a diagnostic pathway. Assume the CT scan is starting point because with a prostate full of positive but low grade cells, local progression is more likely than mets.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Sep 2021 at 23:08

Hi Ivan,

We're all different and our cases are different.

If you look up the surgeon's name on the BAUS website you will find his declared record.  Also if he treats privately the hospitals usually give a write up that gives a better insight.   From what you write you seem to have confidence in him and that check should be good enough.

Alternatively Radiotherapy is a decent choice and better in some cases.   If you think your growth is near a boundary with another organ it makes radiotherapy more interesting.

It's a case of probability.  I have a rather unsophisticated attitude.   Basically if it's cut out it's better than leaving it in longer and/or not actually removing it or its remains.  Granted it might not all be removed in either case.

There are so many things that could happen I prefer to go with the flow and use what is there, if you think it good enough.

When I was being diagnosed every scan was an obstacle, possibly a red light, to getting it removed.  It's good the surgeon used the term 'cured' but they don't usually offer such treatment if it isn't going to be a cure.  Although using the word cured might be he thinks it better than many.

Basically if you're happy take the time to look around, but from my simple perspective every day has the chance of being a day to regret.

If he doesn't mind me saying I did think Bollinge brave with his choice of taking several months extra.  My imagination is rampant especially at 3 in the morning.   I needed it right away, it was said to be near the edge of the prostate.  I also haven't seen my pathology report which I was torn about and told wasn't wise, but decided to base hope on what I was told as there seemed little I could do about it until my psa rose and a 3 monthly psa test seemed all I could expect in the early days. 

For me, RT had too long a timescale and uncertainty, not having a pathologist look at your prostate or stable psa for over a year.  I also didn't want hormones if I could help it.  The op sends you to sleep and it's done, except the healing and physical side effects, I can live with that.

In these post pandemic times it might be good to check out at clinics what times people are waiting for what.

All the best
Peter

User
Posted 29 Sep 2021 at 13:06
Are you sure that you've been offered chemotherapy as a treatment option? That would be highly unusual for a primary (and presumably curative) treatment! It's generally used as a palliative treatment for advanced prostate cancer, which you (almost) certainly don't have.

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

User
Posted 29 Sep 2021 at 13:54

Thanks, Chris, for your response.

 

You are correct, I was not offered Chemo; I must have got carried away typing out the various treatments available.

 

I must admit, I am leaning towards having surgery but, since your initial diagnosis was very similar to mine, I wonder what made you choose HT/RT over surgery? I realize that some of the side effects with surgery can be worse than those for HT/RT and that because you have cut it out doesn't mean that some cancer cells will not remain, but, to me, it just seems better. I have never liked the idea (even before I was diagnosed) of being treated with radiation  and am of the opinion that, if at some stage the cancer returned, I could still be "radiated".

 

Ivan

 

Ivan 

 

 

 

 

 

User
Posted 29 Sep 2021 at 14:12

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

 

User
Posted 29 Sep 2021 at 16:56

Originally Posted by: Online Community Member

I must admit, I am leaning towards having surgery but, since your initial diagnosis was very similar to mine, I wonder what made you choose HT/RT over surgery?

Hi Ivan,

Yes, my diagnosis was T2C, G3+4, but the difference between our cases is that my PSA was 31 at diagnosis. This was considered to be anomalously high for the cancer cells that the biopsy found, and it was felt that there was a strong likelihood of undetectable spread ("micro mets") into the lymph nodes surrounding the prostate. It was therefore strongly recommended that I had "wide beam" RT, with the whole of my pelvis being irradiated to zap these postulated external cancer cells.

Two and a half years after treatment and my last PSA reading was 1.2, which is brilliant considering that I still have a prostate, so things are looking good 🙂.

Best wishes,

Chris

 

Edited by member 29 Sep 2021 at 16:58  | Reason: Not specified

User
Posted 29 Sep 2021 at 17:15

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

User
Posted 29 Sep 2021 at 18:02

Just read your Blog, Prof and have left a comment

Ivan

User
Posted 29 Sep 2021 at 19:42

Hi Ivan,

My O/H was originally diagnosed with advanced PCa T3a N1 M1b. We got a 2nd opinion and then had a PSMA pet scan which confirmed no bone mets, so changed things a lot for us. For T3a N1….RT and HT would be mainly recommended but we have decided to opt for RARP and they will take the affected nodes too. He did start HT and he is likely to need ART but he really feels like he wants to get it out and then we’ll deal with whatever comes next.

It’s such a difficult decision and you never really know if you’re making the right one, but there isn’t right or wrong (which many have said on this forum too) we just went with our gut and have felt much better after the decision was made.

We’re now just waiting for an NHS referral out of our area….which is proving difficult! So may just have to pay private in the end. 

Wishing you the best of luck with your decision and future treatment.

User
Posted 29 Sep 2021 at 19:59

Hi OhDear

I wish you the very best with your decision. My case was similar to yours T2b with Gleason 3+4 and contained within the prostate. For me the decision was also between HT or Surgery but because of my age 57 I was strongly advised by both surgeon and onco to go for surgery. I dont regret my decision as post op histology confirmed 30% of the gland was cancerous- much more than was expected. If you check out my thread you will see my journey and I hope it will be helpful. I also found TechGuy and several other threads very helpful in making my decision. Good luck and Im sure once youve decided it will be a big relief. Trust your gut whatever it tells you 

User
Posted 30 Sep 2021 at 10:24

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

User
Posted 30 Sep 2021 at 10:33

Thanks, Jeremys, for your comment

 

I have indeed read both your thread and that of TechGuy's and have found both useful.

 

I am a little older than you at 63, but am still young enough, I think, to put up with the downside/inconvenience of having surgery. It will be a right pain (hopefully, metaphorically speaking), but, needs must and all that and I will approach the whole thing with a stiff upper lip (probably the only thing that will be after the surgery!).

 

Ivan

 

Ivan

 

 

User
Posted 02 Oct 2021 at 08:32

Dear OhDear

 

It is very daunting but with an experienced very high volume surgeon (or Ninja surgeon as TechGuy calls them) its very manageable and all over pretty quickly. Good luck with whatever you decide. 

User
Posted 04 Nov 2021 at 12:12

Further update

 

I have today had a face-to-face meeting  with one of the "robotic" surgeons at Addenbrookes to discuss the implications of undergoing surgery rather than RT. The surgeon again confirmed that my last biopsy (September 2021) showed that the cancer was throughout my prostate (16/19 cores were positive), but that only 5% was graded Gleason 4 (Category 2). The rest was Gleason 3 (Category 1). Overall Gleason score is 3+4. He suggested that based on my relatively low PSA (6.01) and Gleason grading  I could continue with Active Surveillance for a while longer, but that at some stage action would have to be taken.

After further discussion, I opted for treatment and decided on surgery. The date for surgery was arranged and this is scheduled to take place on 21st December. My bmi is presently around 28.6 and ideally should be lower, so the 6 weeks period I have before my surgery gives me ample time to loose the required couple of kg to be "fit" ready.

My CT scan in September revealed some cysts (non-cancerous ones) on my kidneys and I took the opportunity to discuss this with the surgeon. He confirmed  that they were present when I had a CT scan in 2018 but because they were nothing particularly unusual and were not affecting me ( Apparently 1 in 5 men (they are more common in men) over 50 have cysts on their kidneys/liver), I was not informed about them at that time.

 

My thanks to all on this board that have commented on my thread, with particular thanks to Jeremys who sent me a private message when he read a month or so ago that I was considering undergoing surgery. The 2 surgeons at Addenbrookes come out very well in the numbers game (each performing around 300 operations a year) and the fact that the hospital is only 8 miles from me made the decision to use the NHS rather than go private relatively straight forward. The fact that 2 people I know used the 2 surgeons for their prostate removal back in 2010 helped, as did the fact that I would save £22K by not going private (but that was not really a consideration as ones health must always come first). 

User
Posted 15 Nov 2021 at 10:05

Update

For the sake of completeness (and so I have an easily accessible record), I have posted below part of the latest letter I have received from my surgeon:

Prostate cancer diagnosed March 2021

Diagnostic PSA level: 5.9

51 cc prostate

MRI scan: T2 N0 Mx

Biopsies: 6/13 cores Grade Group 2

Commenced active surveillance

TP biopsies (16th September 2021): right side 9/9 cores Gleason 3+4=7 maximum tumour length 15mm, left side 3+4=7 in 5/9 cores maximum tumour length 12mm, target right anterior 3+4=7 in 3/4 cores maximum tumour length 8mm Gleason pattern 4 less than 5% overall

CT scan (abdomen pelvis): no metastasis, hence overall staging T2 N0 M0

Comorbidities: gastro-oesophageal reflux disease on Lansoprazole and blood pressure managed with Lisinopril

BMI 29.16 (target weight 90 kilos)

 

 

 

 

 Surgery to remove my prostate will take place on 21/12/21

 

 

 

 

 

 

 

 

User
Posted 15 Nov 2021 at 13:00

All the best for the surgery 21/12.

 

Ido4

User
Posted 22 Dec 2021 at 18:36

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

User
Posted 22 Dec 2021 at 22:27
Delighted your operation went smoothly. Congrats !! Wishing you a speedy recovery and a Merry Christmas with lots of rest !!! Fingers crossed for the TWOC on 31/12. Sounds like you will be fine and your full report will be reassuring for others about to undergo the same procedure.
User
Posted 23 Dec 2021 at 11:17

Sounds like everything went very well. Hoping your recovery is smooth. 
Enjoy Christmas now.

 

Ido4

User
Posted 23 Dec 2021 at 13:10

Post- surgery update

I meant to mention in my last posting the medicines that I have been given to take. These are:

Fragmin 0.2 ml injected daily into the stomach area for 28 days ( To prevent blood clots). I must admit I thought I would have a problem injecting myself but the needles are very thin and quite short and by injecting into a "fat" area and pinching the skin where you are going to inject  has proved not to be a problem at all.

Senna 2 X 7.5 mg tablets each night for 14 days (To prevent constipation)

Lactulose 40 ml a day for 28 days (To prevent constipation)

Ciprofloxacin one 500 mg tablet on 29/12 ( A strong antibiotic)

Tadalafil one 5 mg tablet a day from 01/01 (after catheter has been removed) to assist in the repair of nerve damage and for erectile dysfunction. These are to be taken as and when needed.

Post surgery observations:

Fitting my night urine bag to my day bag is easy and using a large bucket to put the night bag in works fine. At the moment the night bag is around half full after 5 hours and when I notice it is, and if I am awake, I empty it. Quite straightforward and, as yet, no accidents. There is some leakage from the tip of the penis but this is easily soaked up by the Tena pad that I have secured to the area where the tube comes out of the penis.

I find it more comfortable and easier to not wear underwear with the catheter in and  let my member just dangle down. I have a long dressing gown and wear that to save any embarrassment if a neighbour or delivery driver should knock on my door.

Though I am not suffering any real pain the area where my 7 puncture wounds are does feel tight and uncomfortable and I am now taking paracetamols to help with this. I assume that the heavy pain killers that were injected into me prior to surgery are now out of my system.

I have not  done a No. 2 for at least 4 days, but am passing loads of wind. Hopefully, the laxatives I am taking will shortly enable me to discharge a load.

 

Edited by member 23 Dec 2021 at 13:18  | Reason: Not specified

User
Posted 23 Dec 2021 at 19:16
Were you definitely only prescribed One Ciprofloxacin 500mg tablet a day, as I was prescribed Two each day for 5 days but perhaps this varies with perceived risk?
Barry
User
Posted 23 Dec 2021 at 19:37

Hello Barry

Yes, the paperwork says to only take one 500 mg Ciprofloxacin on 29/12, although the box I have been given with them in has 10 in and there is a label attached to it which says "Take one tablet twice a day for (blank) days". The paperwork says "500 mg tablet, start taking on 29/12, Take one tablet as a single dose for 1 dose". Now that to me reads just take one tablet on 29/12 and no more. But, perhaps, it means take one 500 mg tablet each day until used up

Based on what you have said, I think I will clarify with Addenbrookes exactly what the state of play is.

 

Thanks

User
Posted 23 Dec 2021 at 20:53

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

User
Posted 23 Dec 2021 at 21:47
OK, as well to have checked. I also had the pack of 10, 500mg and was told twice daily starting immediately for the 5 day course. As the catheter recommendation in my case of 7-10 days for catheter removal (done on the 8th day), my antibiotic course ended before it was removed. So different thinking.

Hope things progress well for you.

Barry
User
Posted 24 Dec 2021 at 19:55

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

User
Posted 24 Dec 2021 at 20:30

Evening Elaine

My understanding is that you take the Ciprofloxacin prior to having your catheter removed to prevent a urinary tract infection. Taking it prior to removal of the catheter makes sense as  some of the urine that has bypassed the tube and just dribbled out over the last 8 or so days could be left in the shaft and pressed up against the tube. I guess that after a number of days the urine is not as "pure" as it once was and could cause an infection. I would certainly ask your hospital whether they intend to give Rob antibiotics to take prior to removal of the catheter. You don't want a perfect operation ruined by a urinary tract infection.

I have now had my catheter removal day bought forward one day ( to 30/12- Yipee!)  and was told by the specialist nurse assigned to me that, ideally, they like to remove the catheter 8 days after it has been inserted. So, strictly speaking my catheter should have been scheduled for removal on Wednesday (29/12), but it was delayed by 2 days (now one day) because of staff shortages. I have also now been told to take two 500 mg Ciprofloxacin tablets on 29/12 (one in the morning and one in the afternoon) and one 500 mg tablet after the catheter has been removed.

 

Yes, I am feeling a little better as each day passes and have now got my appetite back. Christmas lunch is now back on! Hopefully, Rob is also feeling better as each day passes and you are both able to enjoy good Christmas day and Boxing day lunches.

 

Ivan

User
Posted 24 Dec 2021 at 20:59

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

User
Posted 24 Dec 2021 at 22:15
Not all hospitals give antibiotics post-op or for catheter removal. Self-injecting isn't always required either.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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