Outwardly healthy, Inwardly deeply concerned

User

Posted 13 Mar 2023 at 15:25

I am aged 70 years but on the face of it, not in bad nick for an old fella! For some years I have had some urinary reluctance - usually starts ok but I have to 'squeeze' the last bit out. I told the doctor and, after a rectal exam, managed to get a PSA test in 2019 which showed a figure of 5. (Should be less than 3). In November 2022 I asked for a PSA test during a routine blood check and the result came back as 10 which got me concerned to say the least! Since then I have had 2 more tests yielding 12 and 10.6. In January I was referred to the local hospital for an MRI scan which was quickly followed up with a prostate biopsy appointment on 21st Feb, where I was told the MRI showed a level 5 certainty that I have prostate cancer. Three weeks later I still do not have the results but I have had a phone call today to arrange a bone scan which I've since learned is to investigate metastatic cancer. This will likely be the first week in April, after which there will be a likely wait for more results. It may be the end of April before even a discussion about treatment takes place and I understand there's a long NHS wait for radiotherapy. My worry is that time is passing by. It's 9.1/2 weeks since my referral, but over 3 years since I first noticed symptoms followed by my reading of 5 for a PSA test. My worries are amplified by the well publicised NHS backlogs. I have private health insurance and have made enquiries but to go private I need the biopsy results, which have not yet been made available to me. In view of the time taken to get this far, should I be adopting a much more urgent approach ?

User

Posted 13 Mar 2023 at 17:45

The disease will not be progressing very fast (we are probably talking a decade before this would be serious), and if you have radiotherapy it will almost certainly be preceded by 6 months of hormone therapy.

Having a bone scan is a completely standard test, once you are on the diagnosis path. I think I was booked in for the biopsy, the bone scan and a meeting to discuss the results all at the beginning of the process, and told that if the biopsy was clear they would just cancel the unneeded tests.

The fact you are 70 means you have a high chance of having prostate cancer, but it probably isn't serious. Phoning the consultant just enough to be a bit of a nuisance might get him to arrange an appointment to discuss the results.

Dave

User

Posted 13 Mar 2023 at 17:52

Hi, A psa of 12 isn't that high and might not be cancerous.

Your biopsy was 3 weeks ago and results can take longer. You might be able to ask when it's expected. Your bone scan will also be of interest although there's a good chance it's alright.

I would have thought the private hospital would pursue your biopsy if they're looking for the work.

Your biopsy will say what the Gleason score is, for example 3+4. The Gleason will be a guide, along with the bone scan, as to what treatment will be best. A higher Gleason is likely to need stronger treatment.

Radiotherapy is more expensive than an operation, they're both a lot. If it was me I'd be trying to make the best of both systems until one of them becomes an obvious route. I think the private route should be primed and investigated as things aren't looking good with the strikes and things in the NHS.

Edited by member 13 Mar 2023 at 17:53 | Reason: Not specified

User

Posted 27 Apr 2023 at 15:49

OK so time is moving on and it's been some time now since my initial post on 13th March (coincidentally my deceased mother's birthday). I finally received the results of the biopsy. Out of 15, 2 were found to be cancerous, giving me a Gleason of 4+3 along with a radiological staging of T3a. I have since had my bone scan, which revealed nothing untoward, cancer wise, although I now have a follow up MRI to check out my right shoulder. In view of the passing of time I paid for a private consultation, before I got the bone scan results, where I learned that the bone scan rarely reveals anything serious and, as such, discussed possible ways forward, of which it seems there are many. In my case a prostatectomy was recommended, primarily because that would completely remove the cancer and everything else with it. My concerns are considerable - not just having a body part removed but more the 'everything else with it'. It seems I have a 1 in 30 chance of permanent incontinence, although I will be doing more pelvic floor exercises - I'm already swimming for 30 minutes a day - and erectile dysfunction if nerves are removed. If the nerves go, is that it ? No more erections or will viagra or something similar help ? It seems I have to make a decision to go ahead fairly rapidly in view of the Gleason and staging

User

Posted 27 Apr 2023 at 18:39

Hi TCHB,

Sorry to hear your news.

I was initially diagnosed with T2, but this was upgraded to T3a after the Histology Report. The surgeon reported that he had still managed to save "most" of my nerves on both sides of the prostate gland. So, all is not lost for you in terms of possible nerve-sparing surgery, even with T3a. It is also the case that, even if the surgeon only manages to spare the nerves on one side of the gland, there is apparently still a chance of achieving erections, albeit usually after some time. In my case, I had my surgery in June 2022 and am still waiting for a natural erection. However, I have been prescribed Cialis (Tadalafil) tablets and a vacuum pump to preserve blood flow to the penis and penile length. If you should be unlucky enough not to have any nerves spared, then my understanding is that you would not be able to use tablets such as Viagra (Sildenafil) or Tadalafil. However, even then you could still use a vacuum pump and injections. I hope this helps.

Best wishes,

JedSee.

User

Posted 27 Apr 2023 at 18:50

If you are concerned about the side effects of RP, I think radiotherapy, possibly brachytherapy is a better choice for you.

Your consultant may well be a surgeon and keen to get his hands on you, as your cancer is pretty low grade and very curable, it will look good for his statistics. An oncologist will probably be equally keen to do RT on you, as you will boost his statistics instead.

The success rate of both treatments is comparable, so pick the one with the better side effects.

Dave

User

Posted 27 Apr 2023 at 20:06

Originally Posted by: Online Community Member

My concerns are considerable - not just having a body part removed but more the 'everything else with it'. It seems I have a 1 in 30 chance of permanent incontinence, although I will be doing more pelvic floor exercises - I'm already swimming for 30 minutes a day - and erectile dysfunction if nerves are removed. If the nerves go, is that it ?

Some men have full nerve-sparing and never have a natural erection again - others have partial nerve-sparing and regain erections quite quickly. At 12 months post-op, NHS data says that about 90% of men can get an erection either naturally or with chemical / mechanical assistance.

It seems to me that the most important question for you to ask the surgeon is whether s/he believes that nerve-sparing is possible / desirable in your case and, if so, whether that is hoped to be full nerve-sparing or whether the nerve bundles close to your T3 areas need to go too?

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

User

Posted 28 Apr 2023 at 09:03

Thank you for responding to my posts.

I have learned that this is a slow growing cancer. That said, in 2019, I had a PSA reading of 5 after a DRE. There was to be a follow up a few months later. It did not happen and I was not made aware either of the PSA or the follow up until I requested a (I thought) routine PSA for my 70th birthday in November 2022 which yielded a result of 10. Even so it still took me until January 12th this year to get the doc to refer me. Since then I have had MRI, biopsies, bone scan and now a further MRI on my shoulder to check for metastasis. In each case the follow up test was delayed whilst waiting for results.

I only mention this to give some idea of the timeline. Of course I'm not happy with the service I've had so far, but that's by the by. The point is that whilst it's slow growing, it has been doing so for at least 4 years. Now it is a Gleason of 4+3 and T3a which means it's broken the surface of the prostate but does not extend more than 1mm. According to the surgeon with whom I had a private consultation yesterday, if the MRI shows metastasis, then prostate surgery is no longer an option in any case, although my consultant, when pressed, did say that a decision on treatment needs to be made in 2-3 weeks. Yet for half of that time I'll be waiting for MRI results.

Until I learned about the nerve sparing issue and consequent erection problems, I was ready to go down the surgery route, which could take place in June. Now I'm not so sure, and it may not now be an option in any case.

It seems that the only 'tried and tested' treatments are RT and RP. The consultant did say that there are no realistic statistics for newer ones such as HIFU, but that based on the number of post HIFU referrals he was getting, it was not that successful.

So after having this thing growing inside me for longer than 4 years, without knowing how long it was there before the PSA of 5 appeared in 2019, it seems I have a very short time to choose my treatment, and I can't even do that until the MRI results are known.

RT seems a long and drawn out process, with probably some very unpleasant side effects. Does anyone out there have any good experience or comments even, regarding RT ?

User

Posted 28 Apr 2023 at 10:14

Hi TCHB

Do not worry about RT! After a long slow increase in PSA over 10 years or so of annual tests it suddenly jumped to 28 in Nov 21. Referral to Urology pdq and MRI, CT, biopsy, bone scan and cystoscpy completed in 5 weeks with a result of T3b n0m0 gleason 9. Asked onco if RP was an option but no, at my age (78) a d staging not a good idea!

Started HT early Jan 22. Preparations for RT straightforward (gold seed markers insertion to prostate, uncomfortable but OK, planning CT scan ) chat with urology specialist nurse was reassuring and started RT May 22 at Royal Surrey. 60 gray in 20 fractions over 4 weeks. Quite painless and attended to by pretty radiographers. Good chat in the waiting room with fellow patients. After your final session there is a bell to ring on your way out and everyone claps and cheers! HT continues until onco says to stop with PSA tests every 3 or 6 mo to see how things are going.

Reading people's posts on here, RT was the way to go for me even with the smal (I hope) risk of recurrence. Side effects have been OK ish but long lasting from the HT.

Good luck to us all whatever you decide.

Peternigel

User

Posted 22 May 2023 at 10:46

Hi Peternigel.

Thank you so much for your reassuring message. My MRI showed a lesion in my arm which wasn't cancerous so it seems I can choose - RP or RT.

The first consultant I saw pushed me in the direction of RP. Oncology nurses and many people I have spoken to since, have made similar recommendations. That way the organ and the cancer are taken away in one go. But the concept of a catheter, and particularly trying to sleep at night, followed by likely incontinence to follow and having to wear a pad, not to mention erection problems and having to use a vacuum pump - it's all too much for me.

I've spoken to a couple of similar sufferers who both had RT and brachytherapy. One is now 80 and 10 years post op with almost undetectable PSA and not bad for an 80 year old, although his comment was that you can forget your sex life when you get prostate cancer. The other is 74 and he's just 6 months post op. He said the treatment wasn't painful although he is now suffering with the most awful tiredness. I don't relish the HT, RT nor brachy and the risk of consequent fatigue but right now, I feel it's preferable, less intrusive in my otherwise active life and, most important of all, less damaging psychologically.

That said I would welcome any thoughts, comments and experiences, for either treatment. I know a decision is coming soon and it's one I have to make, the consequences of which will affect me and those close to me, for the rest of my life.

I have a phone consultation with a surgeon on Friday 26th May and with an oncology professor on 3rd June. I have surgery tentatively booked for June 12th

User

Posted 22 May 2023 at 11:55

Let me set your mind at rest as far as sex after cancer is concerned. I had prostatectomy at the age of 71 and now at 84 we are still enjoying sex, in many ways better than it might have been had I not had PC. If you survive which is almost guaranteed these days (depending on your diagnosis)there are many ways to regain you sex life. We did - have a look at this link:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 22 May 2023 at 12:16

Originally Posted by: Online Community Member

we are still enjoying sex, in many ways better than it might have been had I not had PC.

Well, I guess it's a lot less messy :)

Prior to my RP (12 days ago) I was prescribed Silodosin which results in dry orgasms and I really didn't feel any difference from normal - still enjoyable.

User

Posted 22 May 2023 at 13:25

I had RT (recommended in my case) and didn't find it too bad at all. Drawn-out, yes, but no worse than mildly unpleasant. Even had it not been recommended for me, it would have been my treatment of choice. If you opt for surgery, it's worth considering that with a T3 diagnosis you have a significant probability (perhaps around 50%) of subsequently requiring salvage RT, so you'd end up with both sets of side-effects.

Best wishes,

Chris

Edited by member 22 May 2023 at 13:29 | Reason: Not specified

User

Posted 24 May 2023 at 10:11

I won't detail my history as it is all on my profile but will add to the discussion by saying that after a deal of research and soul-searching I opted for surgery. Now, we are all different and outcomes can be different even with the same cancer "scores", but choosing surgery rather than one of the other options was for me a no-brainer. It is a quick rather than a long-winded process, means that you have other options available should it fail and are not radiating your insides- which could cause further cancer issues further down the line. Furthermore, research in the US suggests that removing the mother ship (The prostate) even if the cancer has migrated away from it shows better 10 year outcomes than if the prostate remains.

You do need to bear in mind that surgery is a major operation and although there may only be 7 or so small holes on the outside of the body where the robots arms have been inserted the inside is quite a mess. Most people understandably feel tired and lethargic for weeks/months after the operation and to my mind this is the only downside to opting for surgery. In my case I was back to normal 6 months after surgery: no incontinence and 70% plus "hardness".

Ivan

User

Posted 09 Jun 2023 at 11:37

Ok, so I've reached the point where a decision has to be made. Initially I opted for RALP as I was of the understanding that if it (the prostate) was taken away the cancer would go with it, never to return. However, my last consultation revealed that the likelihood of it returning (although where to was not clear) within 5 years is about 30%. On the other hand the likelihood of a 5 year return with RT and hormone treatment is about 10%. I am now leaning towards the RT without HT, as offered by my consultant, to minimise side effects now and (I'm reliably told) that there is little increased risk over 5 years. My consultant will also be applying a rectal spacer, which shields the bowel from any harmful radiation. This is the hardest decision I have ever had to make, and I have gone from quite strong preference for a RALP to HT now. On the face of it, this is my best option. All comments are welcome. I have an upcoming MRI to check that nothing has changed since my diagnosis at the beginning of February and then I hope to begin treatment soon after.

User

Posted 09 Jun 2023 at 12:12

There is no right or wrong decision here- the most important thing is just to make one, based on the best information you can get about your diagnosis ,and a proper understanding of your own feelings and preferences. You have done your research, and as you have found, the answer is about probabilities and a balance of advantage, not about certainties.

I am your age, and opted for RT , although I did need HT to go with it. The RT itself was a breeze.

You are not making a poor choice. Be at peace with your judgement.

Best of luck

User

Posted 09 Jun 2023 at 14:37

I find the posts really reassuring. Was diagnosed on 24 May with Gleason 4+4. Following a PET-CT scan earlier this week and meeting with Urologist and Oncologist, it has not spread. My decision (communicated to the oncologist this morning) is to go with HT and RT. To be honest, I am a bit baffled as I have been on active surveillance for four years and exactly a year ago I was offered HoLAP for low risk prostate cancer and was placed on a waiting list. This offer was subsequently withdrawn in July 2022, with no real explanation. My diagnosis was a big shock as I think my health seeking behaviours have been good and have repeatedly been assured that it was low risk. Anyhow, am now determined to take more control - although might be too little too late.

User

Posted 09 Jun 2023 at 16:37

I was kind of in the same situation - Gleason 3+4 with clear bone scan and offered brachytherapy or RARP after the biopsy.

I chose RARP for the peace of mind it would give me and the procedure was way better than I ever anticipated - you know the way the mind works LOL

4 weeks later I have very slight incontinence. Incontinence doesn't mean that you release the entire badder contents into your underwear - it's just an occasional dribble if you sneeze or don't contract the muscles when you stand up. Occasionally, if I drop my trousers standing at the toilet then it will release just before I am ready but concentration is key!

As for erections and sex - nothing yet but I am getting the twitch back and orgasms are readily achieved without an erection. You just need to be inventive in the bedroom LOL

I am 100% sure I made the right decision for me and if there was a way to put others minds to rest on how straightforward the procedure is then I would do it. I suggest that others make the decision based on the future potential outcomes not on the fear of the procedures.

Good luck with whatever you decide is best for you.

User

Posted 09 Jun 2023 at 19:17

Steve, it is great that you are making such a speedy recovery but important to acknowledge that:

- for some men, incontinence means constant leakage rather than just an occasional dribble

- for some men, RP leads to a permanent catheter

- for some men, incontinence leads to having an artificial sling fitted

- some men never have an erection again

- some men can get some swelling but not enough for penetrative sex

- some men can live with the side effects if the RP is successful but are devastated when the cancer is not fully eradicated - all those side effects for nothing

My husband regrets having the op.

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

User

Posted 09 Jun 2023 at 21:56

Thanks for that information LynEyre

Are these effects more prevalent in conventional RP rather that RARP?

I wonder if age is also a factor? I am 62 and not very overweight.

Not sure of whether an erection will return for me but our sex life is interesting in so many ways that penetration sex isn't a necessary part - I guess that is down to the individuals.

But yes, having an alternative view is certainly something that is needed to balance the discussion.

Thanks and good luck to you and your husband. xx

User

Posted 09 Jun 2023 at 22:29

Age doesn't seem to be a factor - it really seems to be the luck of the draw. John was 50 when he had RP and 52 when he had the salvage RT. He had one of the best surgeons in the country. He doesn't have any incontinence and his impotence is psychological rather than mechanical - he is perfectly capable of getting an erection but getting prostate cancer and then having ED for a couple of years afterwards has messed with his head.

Statistically, ED and incontinence are slightly less likely with open RP than with RARP. Hernia is more likely with RARP as is having a positive margin. The main advantage of RARP over open RP is less time in hospital, less risk of significant blood loss and a shorter time off work.

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

User

Posted 10 Jun 2023 at 02:42

Each of us hopes that the radical treatment we plump for will completely eradicate our PCa and hopefully with minimal side effects. Some are fortunate in that this proves to be the case. However, even after our radical treatment, many of us cannot be certain we made the best choice, regardless of outcome, all things considered. Lyn said previously that her husband John later questioned whether he had made the best choice for him as he subsequently needed RT salvage treatment, although this seems to have worked well thankfully. albeit with side effects from the two forms of radical treatment. However, had he opted for RT initially, it may or may not have eradicated his cancer but some of his cancer cells may have been radio resistant or a tumour started again in the Prostate in due course. Should this have happened, a salvage Prostatectomy would have risked a much higher chance of incontinence and other problems, so he could have been in much worse situation than he is now.

The surgeon who gave me my diagnosis and the view of the MDT said he would remove my Prostate if I wanted it done, however, he recommended RT as he was doubtful he could remove all my T3A cancer. So I went with RT and all looked good for 2+ years but then a tumour gradually developed within my Prostate, so Prostatectomy was a possibility and I was told that this was almost certainly mean that I would be permanently incontinent, according to a consultant from the hospital that claims to do the most Prostatectomies in the UK. I did wonder at this point whether I should have gone with a Prostatectomy first and then that way I could have had salvage RT in need.

I was lucky to be a suitable candidate for HIFU, although it took two applications to get to where I am with stable low PSA and clear MRI now. So I managed to avoid HT which would have been the alternative, to a salvage Prostatectomy. You will never know how an alternative treatment would have worked out so not worth spending much time on post treatment speculation. What is important is to consider all the pros and cons of various treatments offered along with likely outcomes which includes side effects, but also with a thought about salvage treatment should primary treatment not be successful.

Edited by member 25 Apr 2024 at 01:01 | Reason: Not specified

Barry

User

Posted 24 Apr 2024 at 09:56

So, many months have passed since my last post. It's not that I forgot (how could I?) but I wanted to wait for a while to see how things worked out. My treatment, RRT, began on Monday 17th July. I had 20 daily sessions of radiotherapy without any hormone treatment whatsoever ending on Friday 11th August. The procedure was totally painless, save having to have a full bladder and empty bowel (no gas!) which I found difficult during the first week but mastered the technique quite quickly. My main concerns prior to treatment were the possibilities of bladder and bowel incontinence, and erectile dysfunction (ED). As it turned out incontinence was not an issue. At first I needed (and really needed!) to wee very often, but over time that has diminished and today, 8 months later, I would say it's back to normal. My oncologist reminded me, however, that there is no cure for cancer and it can always come back. My PSA prior to treatment was 10. After 3 months it had dropped to 3.6, then 1.9 and most recently 1.34. I have been told that it will never be near zero, as it would have been, for a while at least with hormone treatment, because my body is naturally producing testosterone and this is reflected in the PSA reading. So all good so far - except for erectile problems. I have been prescribed 50mg sildenafil (viagra) which doesn't really help. I tried a double dose which worked a couple of times. I have tried 10mg cialis which made no difference at all. Whilst this is all very frustrating I simply cannot face the prospect of a pump or injections But on top of all that I have found that the colour of my semen has changed from a white or creamy sort of colour to a horrible browny yellow. It puts me off and I find the concept of ejaculation inside my partner absolutely awful and feel this is contributing towards my ED.

So, as well as updating my story, which I hope will be of some benefit to others following behind me on their journey, I'm hoping someone will be able to throw some light on my sperm issue, because it really is a problem to me. Thanking you in advance for any contributions you may wish to make

User

Posted 24 Apr 2024 at 13:41

I am aware that following RT the whiteness of the semen can become less, so that it becomes more transparent and can decrease to the point where orgasms feel much the same but are dry. I can't recall anybody previously saying their semen was brown although for a few weeks after RT it is quite usual for the semen to show evidence of blood or some clots. But this should not be the case many months on. It may just be your perception but if it is truly brown at this stage, I suggest you discuss it with your GP or better still with your oncologist.

Barry

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