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PSA surprisingly high at 1.89 post radical prostatectomy

User
Posted 13 Jul 2019 at 12:32

Hello peeps, first posting on the community for me.

Here’s my situation.

Radical prostatectomy May 2019. Preoperative PSA 4.3ng/mL

Gleason 3+4 confirmed in post operative pathology. Lots of disease found in prostate.

Extraprostatic extension apically, and additional biopsies on the urethra taken during surgery are positive for prostate cancer. These additional biopsies were taken during surgery because of concerns of positive margins at the apex.  Continence and erectile function post surgery are good.

PSA at two months is extraordinary at 1.89ng/mL, repeated at 1.90 ng/mL. 

PET CT PSMA scan completed to look for metastasis - no metastasis seen in the results.

Surgeon and oncologist talking of radiotherapy and hormone treatment – bicalutramide. Side effects of these not very enticing, especially when it’s difficult to explain what’s going on, with such high PSA, no prostate and a clear PSMA scan.

Interested in any community thoughts, reactions, advice on this.

User
Posted 13 Jul 2019 at 19:54

Guy, as your psa was only 4.3 before the op for it to be 1.9 after means there was only 2.4 removed by the op. Although it might have increased between measurements.   2.4 seems a low level of psa, most people would think it fairly normal at 2.4 yet you say it was extensively diseased.  Some cases do generate less psa and this disease seems to bring surprises.

Trends of psa measurement are significant but if I was you I wouldn't want to wait too long.  Granted I'm a super cautious patient.  I liked what Lyn said about Chemo and Andy suggesting better scans.  I'd be wanting detailed scans, chemo, HT and RT.  Once you start the HT your psa trend will no longer be significant as an indicator unless by some freak it still goes up.

It might seem a bit detailed but using exact dates can make a difference when you're talking about tight timescales - May to July may only be just over 4 weeks.  It's useful filling out your profile.  

All the best, Peter

p.s.

This is an interesting thread with 3 things I'd not read before:

1. That it can spread to the urethra.  I asked the surgeon if it could spread to the sphincter as that seemed more likely than the urethra for a tumour in the apex and he said not usually which I guess means it could.

2. That during the op the surgeon can spot a tumour that has spread to the bladder.

3. That you might fatally weaken early spread by early chemo.

 

User
Posted 13 Jul 2019 at 14:04

Sorry to read your PSA is still raised. Hormone therapy and radiotherapy will give you a second chance to rid yourself of the cancer if there are no micromets.

Side effects will be magnified unfortunately but it’s a choice you need to make fairly soon.

Have the doctors offered early chemotherapy?

 

Ido4

User
Posted 13 Jul 2019 at 14:06

Guy,

Sorry you find yourself here, but this forum is a fountain of support and knowledge.

It's unfortunate the PSMA scan didn't show anything. The reliability of both Choline and PSMA PET scans to find PCa drops off as PSA falls below 2, although PSMA is better than Choline in this range. Neither of them are good at finding PCa very near the bladder, because the bladder tends to light up bright in the scans as the kidneys excrete the tracer into the bladder anyway and it 'whites out' the area immediately around. Guessing here, but this might suggest urethra at the the prostate apex is a likely candidate, as that will now be joined on the bladder.

It would be interesting to have a carbon acetate PET scan, because it works better than PSMA (or choline) at PSA < 2, and it's not excreted by the kidneys so it doesn't light up the kidneys and bladder and 'white out' the surrounding area. Unfortunately, I don't know of one in the UK (even privately). Even if it found PCa where the ureathra joins the bladder, I'm not sure the treatment would be any different than if the precise location isn't known, so although interesting to know, probably not useful for steering treatment direction.

I suspect you will have to have HT and RT to the prostate bed including the urethra. This is always a possibility following a RP if the margins are not good. Did you know it was T3a before the RP, as RP is not usually offered for T3a staging.

User
Posted 13 Jul 2019 at 15:22
Biochemical recurrence is classed as a post-operative PSA reading of greater than 0.2, so you are not quite there yet. My PSA is undetectable.

I think you will have to wait for the results of a couple more PSA tests, but if it is any comfort to you, my mate was on Bicalutamide for two years (it usually only works for 12-18 months), without any side-effects whatsoever.

Best of luck.

Cheers, John.

User
Posted 13 Jul 2019 at 15:45

Definitely continue cycling during HT. I think it may suppress some of the HT side effects. I've had no fatigue, or hot flushes as yet, maintained muscle and only had very small fat gain, and I've been on it over 10 months, but also watching carefully what I eat. My consultant is also very in favour of exercise and says it's better than many of the drug treatments available. He's associated with a charity group (Prostate Peddlers) to get patients who aren't exercising cycling, and asked me along to their open day earlier this year, although as a regular cyclist, there's no point me attending their regular training for new cyclists.

I was intending to continue cycling during the RT too, but Mount Vernon RT have said not to cycle because of inflammation to the prostate cause by RT and cycling making side effects worse, which came as a surprise to me. Other exercise is OK, except anything working very hard on muscles around the pelvis as they will be getting inflamed from RT. (Also advised against swimming, as both excessive soaking and the chlorine can make the RT skin burn worse.) I'm only 1 week into 5 weeks treatment (4.5 weeks RT followed by HDR brachytherapy). I've been to the gym a couple of times this week, but that only adds up to 1000kCals, verses my cycling which is typically 4000kCals/week. I tried a stint on my exercise bike this morning after turning the saddle around backwards so nothing against perineum), but I was bored after 2 mins and gave up. I might look for a suitable no-perineum pressure saddle, put it on my mountain bike, and use that just on the road, for minimum possible prostate pressure/vibration.

I've heard cycling too soon after RP with nerve sparing can wreck the nerve sparing, so yes, be careful before you start again.

I've not found the side effects of 10 months HT too bad. I did a post on it:
https://community.prostatecanceruk.org/posts/t21321-Hormone-treatment-lack-of-support-from-NHS#post216465

User
Posted 13 Jul 2019 at 16:37
Adjuvant RT seems a bit pointless with such a high post-op reading - if you were my brother or mate I would want a heart to heart with the oncologist (and a second opinion from another onco) so that s/he could explain what benefit they think it might have.

Bollinge, I think you have misread the numbers?

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

User
Posted 13 Jul 2019 at 17:17
Generally speaking, a low PSA post OP which then climbs slowly over the next 2 or 3 years is classic behaviour for cells left behind in the pelvic region. A PSA that starts high straight after the op is more than likely to be distant mets or micromets, neither of which will be touched by adjuvant RT.

As it happens, my OH had spread to the bladder; fortunately this was spotted during the op, the cancer was removed and the bottom of the bladder was remodelled. When he had a recurrence 2 years later we agreed to salvage RT which included the bottom of the bladder and so far (7 years on) it seems to have been successful. However, we had the benefit of a target based on pathological data and it seemed worth the risk. Probably unlikely to get full remission as the PSA still hovers around detectable but he is happy not to engage with that thought until he has to :-/

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

User
Posted 13 Jul 2019 at 17:22
An afterthought or two:

1 no harm in asking about early chemo - whatever is lurking may be fatally wounded before it gets going

2 if you are anywhere near Leeds you could ask for a second opinion / discussion about the FACBC tracer that is being piloted there. You may not be eligible until your PSA rises above 2.0 ... or the trial might be finished now, I am not sure.

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

User
Posted 13 Jul 2019 at 20:03
Very worth reading my story. Click my picture and read my profile. Exact same situ as you but four years post op. Totally rejected RT now five times as been told it wouldn’t cure !! Scans galore can’t find anything, including 2 PETS. My last psa was 83 over 6 months ago. Been enjoying amazing QOL over last 2 years and they aren’t even testing it any more. I’ve made it quite clear I’m not not doing anything until they see something. Who knows I may not have needed surgery in the first place. Just a huge psa for a young guy. I remember my surgeon saying he couldn’t see anything wrong with my prostate post surgery and I was so angry. The only side effects I’ve ever suffered are from surgery itself and it’s taken me 4 yrs to recover. I’m incurable for sure , but spending time enjoying life rather than hospital! Good luck

If life gives you lemons , then make lemonade

User
Posted 13 Jul 2019 at 20:13

Peter, the apex is at the bottom of the prostate, furthest away from the bladder, and there are two sphincters - one is usually removed during RP but in most men, the second sphincter is retained. In John's case, the second sphincter was repositioned as part of the remodelling.

 

Also worth noting that John's PSA was only 3.1 at dx and the scan was clear so it was assumed to be a very small T1. In the event, it turned out to be throughout every section of the prostate and in the bladder. There has never been an explanation for either the low PSA or clear scan, but his dad died with a PSA of 1.2 and extensive mets to organs so one of the rarer types was suspected. 

Edited by member 13 Jul 2019 at 20:18  | Reason: Not specified

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

User
Posted 13 Jul 2019 at 22:49

Peter, thanks for the nudge to fill out my profile with more details.  I’ve just done that to give the full story.

User
Posted 13 Jul 2019 at 23:46

hi Guy

I've been following this post and actually thinking a lot today. thanks for updating your profile.

 

Need to define exactly what is going on ? Second opinion ? Start asking for more professional input?

firstly did surgeon perform  lymphadenectomy ? 

do you know exactly what he/she did ?

lost for words ?  has he/she never seen this before ?

the urethral biopsies ? where exactly taken ?   from area still left after op ?

Is this PCa or are there rarer cell types in samples ?  Have the biopsies been revisited ? Are they going to be ?

I know nothing about whether this would make any difference in treatments options.

Reading your symptoms and only knowing basic details of anatomy then logically this points to cells along the urethra left within penis, not at 'base' adjoining bladder , agree ?  You need to pose more questions ?

I follow Chris posts for some  time. .. agree..  RT focussed where and why ?

What is being proposed and why ?...

Incidentally, may I ask, how has bladder control been since op ?

Fully dry ?

All the very best. Please keep updating/posting. 

 

Gordon 

User
Posted 14 Jul 2019 at 09:29
Have you had a bone scan? Is it worth considering? Some PCA doesn't express PSMA but a bone scan detects the repair activity associated with metastasis.

If that is clear and given you had positive margins I can see some logic in Salvage RT.

User
Posted 14 Jul 2019 at 13:06

hi Guy

and Chris.  I was spending a few minutes relaxing in the garden.

maybe you've seen this .

https://ascopubs.org/doi/full/10.1200/EDBK_159241

Nothing is predictable and keep challenging/ questioning  which I truly admire 're. Chris.  

2016 article. USA  I found it enlightening.   You have both presented at a young age. 

Nothing Guy to suggest yours has spread at all.   

I'll pose a question. Guy?  What if your PSA  actually remains at or very near 2.00  or goes down ?

Are you willing to wait 2 or 3 months?   

I agree re. flow although I was asymptomatic, yours was obviously becoming extremely slow.  

I actually still have 3 monthly PSA test, I think they should be Annual now, however I'm fine with quarterly.   Letter arrived yesterday.  0.02  . It has been  0.01 and up to 0.02 and down.

My view and wife, quite relaxed and pragmatic after +3yrs   . If it's going to move to 0.04 or higher , we might weĺl know sooner than later.   I realise these are super sensitive.   

Gordon  

User
Posted 14 Jul 2019 at 16:39

Thanks Gordon, interesting post and article. I would like to understand the trajectory of the PSA and asked the oncologist what we should do if it was stable at current levels. He said he thought he’d  be anxious to leave it more than 3 months. So maybe that’s the answer. Another PSA or 2 to establish trajectory as another input to the decision. 

Appreciate your post and the article, which I need to spend more time reading carefully. 

Edited by member 14 Jul 2019 at 16:41  | Reason: Not specified

User
Posted 25 Jul 2019 at 05:09

I had my PSMA scan at the London Clinic and I’ve recently been to the Marsden where I am taking part in a research study.  London Clinic almost felt like a hotel.  The Marsden is a typical, sprawling nhs facility.  I don’t necessarily think either one would be better than the other treatment wise.

Which area of the prostate bed are they treating.  Unlike you, my PSA was low post-prostatectomy.  It rose from 0.014 to 0.023.  Three rises in a year and so my oncologist recommended prostate bed radiotherapy.  She told me she would only treat the prostate bed itself, but sometimes would include lymph nodes further up the bed but only if there was evidence to do so.  My PSMA scan, which was a gamble at such low PSA levels, showed no cancer in the prostate bed but some in two lymph nodes.  The moral of the story is that without the evidence of the PSMA scan, the wrong area would have been treated.

are they advising a PSMA scan - if you can get that done privately, I’d recommend the London Clinic.  Also, are you staying on bicalutimide during and after treatment?  I’ve been on bicalutimide for 17 months now, one more to go until I’ve finished.

ulsterman

Edited by member 25 Jul 2019 at 05:12  | Reason: Not specified

User
Posted 27 Jul 2019 at 07:55

GuyM,

I would ask onco if it makes sense to try to get your PSA down to 0.1 with hormone therapy before starting the RT. Some research has shown a low pre-RT nadir significantly improves outcomes, and that's what I just did as a result of reading those papers, which meant delaying my RT by an extra 8 weeks. Only delay RT whilst PSA is reducing at a significant rate though. Admittedly, this was for people with a prostate, but with your PSA level, you clearly have significant prostate cells somewhere.

User
Posted 27 Jul 2019 at 10:37

My husband ( T3a 3/4 ) had his surgery at the London clinic last year and his experience from the psa test to his annual check up yesterday has been absolutely super. We are hoping that he will not need any further treatment as psa test remain “undetectable” though we have had some stress between ultra super sensitive ( 3 monthly test in Jeddah where we work) which has gone from .002 to.01 . The London clinic test to 1 decimal point and so he is less that 0.0 there . However surgeon not a great fan of ultra super sensitive. However was happy to order an MRI to reassure us ( mainly me ). I hope you have a positive experience at The London Clinic and best of luck with the RT/HT 

I hope you have a really positive experience at the London clinic . 

 

User
Posted 27 Jul 2019 at 10:44
Did they offer you either tamoxifen or RT to the breast buds before you start the bicalutimide? RT only works before or in the first week or so ... tamoxifen works best if you take it before you have any problems. Many men have problems accessing either treatment on the NHS but if you are going private it should be easier. Having said that, J’s onco refused point blank on the basis that bicalutimide doesn’t cause breast growth. It does.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2019 at 10:59

It took me 3 months to start developing breast buds on bicalutamide.

I did some dosing calculations for tamoxifen, and I recon it takes 2 months to build up a working level of tamoxifen in your blood to stop/reverse breast growth (tamoxifen has a very slow build up and decay in your body), so ideally you want to start taking it with the bicalutamide.

When you've been on tamoxifen for 3 months, get blood tests done (FBC, LFT, GGT) to check your liver is coping with it. You might as well add PSA in there too!

User
Posted 27 Jul 2019 at 13:03

I'm prescribed 20mg/day (the max allowed), but suggested initial dose was 20mg twice a week (which is the NICE recommendation), and adjust dose to symptoms.

My liver didn't like tamoxifen very much, and it would eventually have given me non-alcoholic fatty liver disease (about half the women on tamoxifen for 5 years get NAFLD). So I set about minimising my dose. Breasts grow in bursts, so I only took it during a growth bust.

Tamoxifen has a long build-up, about 2 months to get to working level, and 3 months to get to final level. So if you are taking it only when needed, it's going to take a long time to start working, and to counteract breast growth, you don't want that because it works best as soon as possible, and slower the longer the breast growth has been there. I built a mathematical model of the blood concentration based on dosing and data from the manufacturer's tests, and worked out best dosing for me was to take 20mg/day for 8 days to get to final level within 8 days rather than 3 months, and then switch to 2 x 20mg/week, until growth was reversed, and then stop taking it. When I stop, it decays away in 3 months. If I need to start it again before 3 months, I can calculate a reduction in the initial 8 days due to the residual I still have present. This worked well, and my liver enzymes probably only went abnormal for short periods (I only have two liver function samples whilst on tamoxifen, but they fit what I'd expect).

My consultant and GP were happy for me to do this, and it got my liver enzymes back where they should be which pleased my GP, and prevented the moobs which pleased me.

I also talked with a researcher an Mount Vernon hospital who knew about using tamoxifen in men, and she didn't think anyone had tried doing what I was doing before, and jokingly offered me a job!

Since switching from bicalutamide to Zoladex, I haven't needed any tamoxifen. Bicalutamide is the worse HT drug for breast growth, but it can happen with any of them, so I might still need it occasionally on Zoladex.

Some people seem to start on 1 x 20mg/week, and get dose escalated to 2 x 20mg/week or higher if that doesn't work. However, no one seems to think of doing an initial dose escalation when it's given in response to symptoms to get it working faster than in 2 months.

It's reported to work in 70% of men with HT-induced breast growth. I suspect some of the failures are probably down to widespread lack of understanding of the way dosing works and the long rise and decay in blood levels.

User
Posted 06 Aug 2019 at 16:18
Hello, my husband has been on bicalutamide for nearly 4 weeks. He was recently diagnosed and this is his first treatment. The urologist told him not to drink alcohol whilst on the tablets. He has had no issues to date apart from feeling a bit tired but, of course this may not be drug related.

Ally

User
Posted 06 Aug 2019 at 17:03

Originally Posted by: Online Community Member

Andy, your tamoxifen data is interesting. I am starting on 1 x10mg/week from the start - starting as soon as I started the bicalutamide.  The surgeon wondered if that was enough but the oncologist determined that as a start point.

That sounds very low. NICE recommends 2x20mg/week. Some people start on 1 x 20mg/week.

It's rare to find anyone being prescribed anything other than the 20mg tablets, because the other sizes are about 40 times the price.

As I said, it takes about 3 months to build up to the steady level in your body, but that doesn't matter if you start taking it with the bicalutamide, because it takes around the same time for gynecomastia to start on bicalutamide. The initial dose escalation is relevant when you start taking it in response to gynecomastia having already started.

Originally Posted by: Online Community Member
I started on 150mg/day bicalutamide yesterday and have felt crap all day. Very windy, watery bowls, headache and slight nausea. But on reflection I’m not surprised as yesterday I took bicalutamide, tamoxifen and also a Cialis pill and also enjoyed some beer and wine!  Oops!

interesting to see what tomorrow feels like with just the bicalutamide and no alcohol!

Interested in any experience of alcohol with bicalutamide that’s out there...

I wasn't told not to drink, but as it happens, I don't drink anyway. I suspect the headache and nausea are most likely down to the cialis (tadalafil). I have taken all 3 of those together (albeit low dose bicalutamide and low dose tadalafil) without any side effects other than the expected hormone therapy side effects.

Edited by member 06 Aug 2019 at 17:04  | Reason: Not specified

User
Posted 12 Oct 2019 at 13:18
My psa was 1.5 post op. I’m now 4 1/2 yrs on. I was on Bical for 11 months and psa dropped to 0.33

If life gives you lemons , then make lemonade

User
Posted 03 Nov 2019 at 08:19
Best of luck with your RT, Guy. I had RT in Feb/Mar this year and got through it with relatively few side effects. The worst was the need to pee every 45m all through the night for the last few weeks of treatment, due to bladder irritation by the radiation. If this happens to you, buy a plastic urine bottle (I bought one from Amazon). Not having to get out of bed repeatedly dramatically reduces the tiredness. Side-effects generally peak about 10-14 days after RT finishes and in my case had almost entirely disappeared a month after RT.

I've been on 150mg/day bicalutimide since August 2018 and experienced significant breast growth in the last few months. My tamoxifen dose has been increased to 10mg/day to try to stop it, but not much impact so far.

Best of luck with the treatment,

Chris

User
Posted 22 Dec 2019 at 08:14

Originally Posted by: Online Community Member
Hello all, time for an update.

last Weds, 18th December marked my 33rd and final RT session. I’ve coped quite well, only taken off the bed on 2 occasions - both for bowel condition, meaning gas that needed to be moved on, so to speak. I’ve learned that my bladder is a champion bladder - turning up every day in a well hydrated condition with the only question being how much I should release before RT. I would sometimes have more than 800ml in my bladder on turning up with the target size for RT for me being 325ml +\- 25%, which was a comfortable volume to hold. So, no bladder trouble, no wetting the RT bed, and no apparent irritation from RT either. All good for the bladder.

Congratulations Guy.
By the way, 800ml is a large bladder.

Originally Posted by: Online Community Member
 Wednesday 18th also marked me stopping the bicalutamide and I’m now waiting for my testosterone to return after 4 1/2 months on it. Any shared experiences on the forum would be great to hear. How long does it rake for it to return following stopping taking it? Is it a gradual process or could there be some kind of testosterone rush? My breasts are sore and I’m looking forward to this pain going away.

Bicalutamide takes about a month to leave your system. I don't know if there's any additional time required for the androgen receptors to become unblocked after that, and able to respond to testosterone again. Bicalutamide doesn't make you lose your testosterone, just stops the body being able to use it, so I doubt there's any kind of rush. If you have any breast bud growth you can feel, you might want to ask for Tamoxifen for a few months as it can reverse it providing it's used very soon after it happened. Not suitable for people with cardio issues or any raised risk of DVT though.

Originally Posted by: Online Community Member
I can almost feel the tiredness leaving my body as I exercise and end up noticeably less tired as the exercise progresses.

I've had some intermittent hip pain before any of this started, and this has returned in the last week or so together with a bit of lower back ache. MRI of hip and lumbar spine organised by Oncologist checking for any cancer related cause hadn’t shown any cancer related worry, and I’m now looking to be referred onto a orthopaedic specialist to look at that. Too young for a new hip it feels to ok me.

I hammer on about this when counseling men, but I love your phraseology, which I might steal...

However, you will probably be a bit low on hemoglobin as your pelvis (where much hemoglobin is made) gets irradiated too, so take it easy with extreme exercise for a month.

Hormone therapy loosens ligaments in the hips and other joints, and can cause pain. Some of it is likely to be this.

The end of therapy can feel like a big anti-climax after you've had people treating and fussing over you every day for weeks. Christmas may help alleviate that in your case, but with treatment complete, get on with the rest of your life, and may it be long and healthy. You will probably have bowel issues to remind you for some few months though.

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User
Posted 13 Jul 2019 at 14:04

Sorry to read your PSA is still raised. Hormone therapy and radiotherapy will give you a second chance to rid yourself of the cancer if there are no micromets.

Side effects will be magnified unfortunately but it’s a choice you need to make fairly soon.

Have the doctors offered early chemotherapy?

 

Ido4

User
Posted 13 Jul 2019 at 14:06

Guy,

Sorry you find yourself here, but this forum is a fountain of support and knowledge.

It's unfortunate the PSMA scan didn't show anything. The reliability of both Choline and PSMA PET scans to find PCa drops off as PSA falls below 2, although PSMA is better than Choline in this range. Neither of them are good at finding PCa very near the bladder, because the bladder tends to light up bright in the scans as the kidneys excrete the tracer into the bladder anyway and it 'whites out' the area immediately around. Guessing here, but this might suggest urethra at the the prostate apex is a likely candidate, as that will now be joined on the bladder.

It would be interesting to have a carbon acetate PET scan, because it works better than PSMA (or choline) at PSA < 2, and it's not excreted by the kidneys so it doesn't light up the kidneys and bladder and 'white out' the surrounding area. Unfortunately, I don't know of one in the UK (even privately). Even if it found PCa where the ureathra joins the bladder, I'm not sure the treatment would be any different than if the precise location isn't known, so although interesting to know, probably not useful for steering treatment direction.

I suspect you will have to have HT and RT to the prostate bed including the urethra. This is always a possibility following a RP if the margins are not good. Did you know it was T3a before the RP, as RP is not usually offered for T3a staging.

User
Posted 13 Jul 2019 at 14:46

Thanks Andy, very interesting - thanks for your input.  Agree that the Likely culprit is apical/urethral - just hard to believe it’s producing so much PSA just from that area.

T3a only declared post surgery on the basis of finding cancer in the urethra - although the staging definitions don’t include urethral excursion, I’m told. So there’s some debate if it is a ‘proper’ T3 or not. It’s certainly an unusual, unconventional T3.

Sounds like I’ve just got to get on with it, and soon.

 

User
Posted 13 Jul 2019 at 14:49

Thanks Ido4, no mention of chemo at any stage so far. Not normally suggested if it’s localised - or don’t I have that right?

thanks for replying. 

User
Posted 13 Jul 2019 at 14:56

Andy, also see you’re a cyclist. I am too, but off the bike post RP surgery whilst healing completes. 

Whats your experience of cycling during HT and RT?  I’ve read differing views so would welcome your experience. 

I’m also a keen swimmer. 

User
Posted 13 Jul 2019 at 15:22
Biochemical recurrence is classed as a post-operative PSA reading of greater than 0.2, so you are not quite there yet. My PSA is undetectable.

I think you will have to wait for the results of a couple more PSA tests, but if it is any comfort to you, my mate was on Bicalutamide for two years (it usually only works for 12-18 months), without any side-effects whatsoever.

Best of luck.

Cheers, John.

User
Posted 13 Jul 2019 at 15:45

Definitely continue cycling during HT. I think it may suppress some of the HT side effects. I've had no fatigue, or hot flushes as yet, maintained muscle and only had very small fat gain, and I've been on it over 10 months, but also watching carefully what I eat. My consultant is also very in favour of exercise and says it's better than many of the drug treatments available. He's associated with a charity group (Prostate Peddlers) to get patients who aren't exercising cycling, and asked me along to their open day earlier this year, although as a regular cyclist, there's no point me attending their regular training for new cyclists.

I was intending to continue cycling during the RT too, but Mount Vernon RT have said not to cycle because of inflammation to the prostate cause by RT and cycling making side effects worse, which came as a surprise to me. Other exercise is OK, except anything working very hard on muscles around the pelvis as they will be getting inflamed from RT. (Also advised against swimming, as both excessive soaking and the chlorine can make the RT skin burn worse.) I'm only 1 week into 5 weeks treatment (4.5 weeks RT followed by HDR brachytherapy). I've been to the gym a couple of times this week, but that only adds up to 1000kCals, verses my cycling which is typically 4000kCals/week. I tried a stint on my exercise bike this morning after turning the saddle around backwards so nothing against perineum), but I was bored after 2 mins and gave up. I might look for a suitable no-perineum pressure saddle, put it on my mountain bike, and use that just on the road, for minimum possible prostate pressure/vibration.

I've heard cycling too soon after RP with nerve sparing can wreck the nerve sparing, so yes, be careful before you start again.

I've not found the side effects of 10 months HT too bad. I did a post on it:
https://community.prostatecanceruk.org/posts/t21321-Hormone-treatment-lack-of-support-from-NHS#post216465

User
Posted 13 Jul 2019 at 16:37
Adjuvant RT seems a bit pointless with such a high post-op reading - if you were my brother or mate I would want a heart to heart with the oncologist (and a second opinion from another onco) so that s/he could explain what benefit they think it might have.

Bollinge, I think you have misread the numbers?

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

User
Posted 13 Jul 2019 at 16:59
Thanks LynEyre, I’ve been feeling that too about the RT.

Key question I want to pose is “just exactly where you intend to point the radiation given that nothing is showing on the scan” - although Andy does nicely describe why this might be so. Seems like a generic approach without being able to know where the source of the PSA is...

I can kind of get HT as it’s a generic thing that should get to whatever is going on wherever it is.

Thanks for the encouragement to press for answers before having to experience all these side effects.

User
Posted 13 Jul 2019 at 17:17
Generally speaking, a low PSA post OP which then climbs slowly over the next 2 or 3 years is classic behaviour for cells left behind in the pelvic region. A PSA that starts high straight after the op is more than likely to be distant mets or micromets, neither of which will be touched by adjuvant RT.

As it happens, my OH had spread to the bladder; fortunately this was spotted during the op, the cancer was removed and the bottom of the bladder was remodelled. When he had a recurrence 2 years later we agreed to salvage RT which included the bottom of the bladder and so far (7 years on) it seems to have been successful. However, we had the benefit of a target based on pathological data and it seemed worth the risk. Probably unlikely to get full remission as the PSA still hovers around detectable but he is happy not to engage with that thought until he has to :-/

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

User
Posted 13 Jul 2019 at 17:22
An afterthought or two:

1 no harm in asking about early chemo - whatever is lurking may be fatally wounded before it gets going

2 if you are anywhere near Leeds you could ask for a second opinion / discussion about the FACBC tracer that is being piloted there. You may not be eligible until your PSA rises above 2.0 ... or the trial might be finished now, I am not sure.

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

User
Posted 13 Jul 2019 at 18:40
Thanks LynEyre - I’m not near Leeds. I’m near London, but think that’ll be a key question “what other scans can be done that will not be impacted by being ‘whited out’ by the bladder and are good at spotting remote distant micro (?) mets”. We need a clinical explanation for the high PSA.
User
Posted 13 Jul 2019 at 19:54

Guy, as your psa was only 4.3 before the op for it to be 1.9 after means there was only 2.4 removed by the op. Although it might have increased between measurements.   2.4 seems a low level of psa, most people would think it fairly normal at 2.4 yet you say it was extensively diseased.  Some cases do generate less psa and this disease seems to bring surprises.

Trends of psa measurement are significant but if I was you I wouldn't want to wait too long.  Granted I'm a super cautious patient.  I liked what Lyn said about Chemo and Andy suggesting better scans.  I'd be wanting detailed scans, chemo, HT and RT.  Once you start the HT your psa trend will no longer be significant as an indicator unless by some freak it still goes up.

It might seem a bit detailed but using exact dates can make a difference when you're talking about tight timescales - May to July may only be just over 4 weeks.  It's useful filling out your profile.  

All the best, Peter

p.s.

This is an interesting thread with 3 things I'd not read before:

1. That it can spread to the urethra.  I asked the surgeon if it could spread to the sphincter as that seemed more likely than the urethra for a tumour in the apex and he said not usually which I guess means it could.

2. That during the op the surgeon can spot a tumour that has spread to the bladder.

3. That you might fatally weaken early spread by early chemo.

 

User
Posted 13 Jul 2019 at 20:03
Very worth reading my story. Click my picture and read my profile. Exact same situ as you but four years post op. Totally rejected RT now five times as been told it wouldn’t cure !! Scans galore can’t find anything, including 2 PETS. My last psa was 83 over 6 months ago. Been enjoying amazing QOL over last 2 years and they aren’t even testing it any more. I’ve made it quite clear I’m not not doing anything until they see something. Who knows I may not have needed surgery in the first place. Just a huge psa for a young guy. I remember my surgeon saying he couldn’t see anything wrong with my prostate post surgery and I was so angry. The only side effects I’ve ever suffered are from surgery itself and it’s taken me 4 yrs to recover. I’m incurable for sure , but spending time enjoying life rather than hospital! Good luck

If life gives you lemons , then make lemonade

User
Posted 13 Jul 2019 at 20:13

Peter, the apex is at the bottom of the prostate, furthest away from the bladder, and there are two sphincters - one is usually removed during RP but in most men, the second sphincter is retained. In John's case, the second sphincter was repositioned as part of the remodelling.

 

Also worth noting that John's PSA was only 3.1 at dx and the scan was clear so it was assumed to be a very small T1. In the event, it turned out to be throughout every section of the prostate and in the bladder. There has never been an explanation for either the low PSA or clear scan, but his dad died with a PSA of 1.2 and extensive mets to organs so one of the rarer types was suspected. 

Edited by member 13 Jul 2019 at 20:18  | Reason: Not specified

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

User
Posted 13 Jul 2019 at 22:49

Peter, thanks for the nudge to fill out my profile with more details.  I’ve just done that to give the full story.

User
Posted 13 Jul 2019 at 23:00

Thanks Chris, very interesting parallels to my case although I have much less history than you to date. 

User
Posted 13 Jul 2019 at 23:46

hi Guy

I've been following this post and actually thinking a lot today. thanks for updating your profile.

 

Need to define exactly what is going on ? Second opinion ? Start asking for more professional input?

firstly did surgeon perform  lymphadenectomy ? 

do you know exactly what he/she did ?

lost for words ?  has he/she never seen this before ?

the urethral biopsies ? where exactly taken ?   from area still left after op ?

Is this PCa or are there rarer cell types in samples ?  Have the biopsies been revisited ? Are they going to be ?

I know nothing about whether this would make any difference in treatments options.

Reading your symptoms and only knowing basic details of anatomy then logically this points to cells along the urethra left within penis, not at 'base' adjoining bladder , agree ?  You need to pose more questions ?

I follow Chris posts for some  time. .. agree..  RT focussed where and why ?

What is being proposed and why ?...

Incidentally, may I ask, how has bladder control been since op ?

Fully dry ?

All the very best. Please keep updating/posting. 

 

Gordon 

User
Posted 14 Jul 2019 at 08:28
Thanks Gordon,

No surgery on lymph nodes, biopsies taken from urethra that was left behind, histopathology not revisited yet but was reviewed by a MDT, carcinoma was confirmed as prostate cancer in the histology, continence post surgery has been really good, fully dry and flow has also been excellent. The best it’s ever been. Feel like I’m peeing from a fire hose fir the first time :).

So all is good!

One other symptom I haven’t mentioned before and don’t think it’s connected - some difficulty with my left hip. Can get very sore when walking. Wondered if that was metastasis before the PSMA scan - but it’s been MRId 18months ago or so and didn’t show on the PSMA so don’t think it’s connected in any way.

User
Posted 14 Jul 2019 at 09:29
Have you had a bone scan? Is it worth considering? Some PCA doesn't express PSMA but a bone scan detects the repair activity associated with metastasis.

If that is clear and given you had positive margins I can see some logic in Salvage RT.

User
Posted 14 Jul 2019 at 09:53
Thanks Jonathan, no bone scan so far. Agree that there are some positive margins just hard to believe these generate 1.9 PSA alone. But in the search of the source, a bone scan could be helpful.
User
Posted 14 Jul 2019 at 11:53
My post op psa was 1.5 and 2.4 three months later. However I had 18 lymph nodes removed and 5 were cancerous. I also had a small positive margin near my bladder. Oncos exact words each time “ The RT is not expected to be curative but will prevent a recurrence in that area which can be very very nasty “.

I’m not a scaredy cat. I just didn’t want anymore aggro and the possibility of loads more side-effects. Four years from surgery and still zero signs of proper spread. I know it will come and it affects my state of mind a lot , but I’m so busy with a nice job , and getting my dream car , and holidays galore for us all. Such a shame really as I look 100% fit , have full continence and EF. I’d be in such a good place if they got it all :-((

If life gives you lemons , then make lemonade

User
Posted 14 Jul 2019 at 13:06

hi Guy

and Chris.  I was spending a few minutes relaxing in the garden.

maybe you've seen this .

https://ascopubs.org/doi/full/10.1200/EDBK_159241

Nothing is predictable and keep challenging/ questioning  which I truly admire 're. Chris.  

2016 article. USA  I found it enlightening.   You have both presented at a young age. 

Nothing Guy to suggest yours has spread at all.   

I'll pose a question. Guy?  What if your PSA  actually remains at or very near 2.00  or goes down ?

Are you willing to wait 2 or 3 months?   

I agree re. flow although I was asymptomatic, yours was obviously becoming extremely slow.  

I actually still have 3 monthly PSA test, I think they should be Annual now, however I'm fine with quarterly.   Letter arrived yesterday.  0.02  . It has been  0.01 and up to 0.02 and down.

My view and wife, quite relaxed and pragmatic after +3yrs   . If it's going to move to 0.04 or higher , we might weĺl know sooner than later.   I realise these are super sensitive.   

Gordon  

User
Posted 14 Jul 2019 at 13:59
Thanks Gordon for the info. Very interesting. My GP has become more helpful than my Onco and suggesting we treat each symptom as it comes. He is not condemning me to purely systemic treatment which I suspect I will find intolerable given my QOL outlook. Even though my psa has risen from 1.5 to over 83 nine months ago , I’m now glad we are no longer testing it. There is literally no point at all is there ? It’s only going up. My biggest fear is that scans can only be 6 monthly due to kidney damage from PET tracers and CT contrasts etc. I’m in a pretty good place though tbh. In a far better place than some men who are essentially cured actually. You just have to get in with it and distract yourself.....

If life gives you lemons , then make lemonade

User
Posted 14 Jul 2019 at 16:39

Thanks Gordon, interesting post and article. I would like to understand the trajectory of the PSA and asked the oncologist what we should do if it was stable at current levels. He said he thought he’d  be anxious to leave it more than 3 months. So maybe that’s the answer. Another PSA or 2 to establish trajectory as another input to the decision. 

Appreciate your post and the article, which I need to spend more time reading carefully. 

Edited by member 14 Jul 2019 at 16:41  | Reason: Not specified

User
Posted 24 Jul 2019 at 22:38
Hello all, well a joint consultation with surgeon and oncologist and a forward path has been determined. I'm going to take bicalutamide for 12 weeks till early November when I'll start 6 1/2 weeks of daily radiation on the prostate bed, All to be done just in time before Christmas. Yay!

I've had another PSA today and that's come back at 1.82 ng/mL - so seems like it's been stable (but inexplicably high) since prostatectomy. Maybe what's left is just a "juicy PSA producer" - I think that's to proposition we will test.

Surgeon and Onco have persuaded me that we need to attack what we know to be a problem - namely residual cancer in the prostate bed. Let's deal with that first via radiation, and adding hormone treatment increases the chance of a cure by 10%, and as I'm looking for a 30 year solution, I'm prepared to contemplate the possible side effects of hormone treatment to secure that incremental 10% chance.

Now, my question to you all. Where is the best radiation centre in/around London. I'm considering The London Clinic (near Harley Street - am lucky to be covered by BUPA) or the Marsden at Sutton. I'm attracted by the flexibility that private care will offer for appointments etc, and understand that the clinical outcome at either place is likely to be similar.

Interested in the community input to the choice of radiation treatment centres in central or south London.

User
Posted 25 Jul 2019 at 00:12
Can you have it privately at the Marsden?

We paid for RT at our NHS hospital because it is a centre of excellence; the income generated is ploughed back into oncological research at the hospital and university.

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

User
Posted 25 Jul 2019 at 05:09

I had my PSMA scan at the London Clinic and I’ve recently been to the Marsden where I am taking part in a research study.  London Clinic almost felt like a hotel.  The Marsden is a typical, sprawling nhs facility.  I don’t necessarily think either one would be better than the other treatment wise.

Which area of the prostate bed are they treating.  Unlike you, my PSA was low post-prostatectomy.  It rose from 0.014 to 0.023.  Three rises in a year and so my oncologist recommended prostate bed radiotherapy.  She told me she would only treat the prostate bed itself, but sometimes would include lymph nodes further up the bed but only if there was evidence to do so.  My PSMA scan, which was a gamble at such low PSA levels, showed no cancer in the prostate bed but some in two lymph nodes.  The moral of the story is that without the evidence of the PSMA scan, the wrong area would have been treated.

are they advising a PSMA scan - if you can get that done privately, I’d recommend the London Clinic.  Also, are you staying on bicalutimide during and after treatment?  I’ve been on bicalutimide for 17 months now, one more to go until I’ve finished.

ulsterman

Edited by member 25 Jul 2019 at 05:12  | Reason: Not specified

User
Posted 27 Jul 2019 at 07:34

Thanks ulsterman, I’ve had a PSMA scan which was clear.  Not sure what the plan is for bicalutamide when I start radiotherapy. 

Thanks for commenting. 

User
Posted 27 Jul 2019 at 07:55

GuyM,

I would ask onco if it makes sense to try to get your PSA down to 0.1 with hormone therapy before starting the RT. Some research has shown a low pre-RT nadir significantly improves outcomes, and that's what I just did as a result of reading those papers, which meant delaying my RT by an extra 8 weeks. Only delay RT whilst PSA is reducing at a significant rate though. Admittedly, this was for people with a prostate, but with your PSA level, you clearly have significant prostate cells somewhere.

User
Posted 27 Jul 2019 at 10:19

Andy, thank you. 

I had had a joint surgeon/oncologist meeting earlier this week and we developed a treatment plan. We’re on the path you suggest. 

I’ve got my 150mg bicalutamide and am about to start taking them - today/tomorrow. I’ll do HT in an effort to get the PSA down between now and the first week of November, when I’ll start the RT, which will take me perfectly (?) up to Christmas. Delaying RT whilst HT progresses also has the important benefit of delaying the RT till almost 6 months after surgery to allow healing to progress. RT on relatively new wounds is not a good idea.

Surgeon and oncologist feel that the source of PSA will be the prostate bed and urethra, and that I’m a ‘juicy PSA producer’. The HT will hopefully reduce PSA which will then be followed by RT. 

I’ve decided to take the RT at The London Clinic. 

Edited by member 27 Jul 2019 at 10:26  | Reason: Not specified

User
Posted 27 Jul 2019 at 10:37

My husband ( T3a 3/4 ) had his surgery at the London clinic last year and his experience from the psa test to his annual check up yesterday has been absolutely super. We are hoping that he will not need any further treatment as psa test remain “undetectable” though we have had some stress between ultra super sensitive ( 3 monthly test in Jeddah where we work) which has gone from .002 to.01 . The London clinic test to 1 decimal point and so he is less that 0.0 there . However surgeon not a great fan of ultra super sensitive. However was happy to order an MRI to reassure us ( mainly me ). I hope you have a positive experience at The London Clinic and best of luck with the RT/HT 

I hope you have a really positive experience at the London clinic . 

 

User
Posted 27 Jul 2019 at 10:44
Did they offer you either tamoxifen or RT to the breast buds before you start the bicalutimide? RT only works before or in the first week or so ... tamoxifen works best if you take it before you have any problems. Many men have problems accessing either treatment on the NHS but if you are going private it should be easier. Having said that, J’s onco refused point blank on the basis that bicalutimide doesn’t cause breast growth. It does.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2019 at 10:55

Thanks LynEyre, yes I should also have also said I have been prescribed Tamoxifen - a once a week dose to start with from the get-go, starting today/tomorrow too. 

Edited by member 27 Jul 2019 at 10:55  | Reason: Not specified

User
Posted 27 Jul 2019 at 10:59

It took me 3 months to start developing breast buds on bicalutamide.

I did some dosing calculations for tamoxifen, and I recon it takes 2 months to build up a working level of tamoxifen in your blood to stop/reverse breast growth (tamoxifen has a very slow build up and decay in your body), so ideally you want to start taking it with the bicalutamide.

When you've been on tamoxifen for 3 months, get blood tests done (FBC, LFT, GGT) to check your liver is coping with it. You might as well add PSA in there too!

User
Posted 27 Jul 2019 at 12:09
Thanks Andy, that’s the plan. 3 months bicalutamide and tamoxifen with PSA test before the RT starts. I’ll suggest we add liver function tests too at that point. How much tamoxifen did you have, out of interest?
User
Posted 27 Jul 2019 at 13:03

I'm prescribed 20mg/day (the max allowed), but suggested initial dose was 20mg twice a week (which is the NICE recommendation), and adjust dose to symptoms.

My liver didn't like tamoxifen very much, and it would eventually have given me non-alcoholic fatty liver disease (about half the women on tamoxifen for 5 years get NAFLD). So I set about minimising my dose. Breasts grow in bursts, so I only took it during a growth bust.

Tamoxifen has a long build-up, about 2 months to get to working level, and 3 months to get to final level. So if you are taking it only when needed, it's going to take a long time to start working, and to counteract breast growth, you don't want that because it works best as soon as possible, and slower the longer the breast growth has been there. I built a mathematical model of the blood concentration based on dosing and data from the manufacturer's tests, and worked out best dosing for me was to take 20mg/day for 8 days to get to final level within 8 days rather than 3 months, and then switch to 2 x 20mg/week, until growth was reversed, and then stop taking it. When I stop, it decays away in 3 months. If I need to start it again before 3 months, I can calculate a reduction in the initial 8 days due to the residual I still have present. This worked well, and my liver enzymes probably only went abnormal for short periods (I only have two liver function samples whilst on tamoxifen, but they fit what I'd expect).

My consultant and GP were happy for me to do this, and it got my liver enzymes back where they should be which pleased my GP, and prevented the moobs which pleased me.

I also talked with a researcher an Mount Vernon hospital who knew about using tamoxifen in men, and she didn't think anyone had tried doing what I was doing before, and jokingly offered me a job!

Since switching from bicalutamide to Zoladex, I haven't needed any tamoxifen. Bicalutamide is the worse HT drug for breast growth, but it can happen with any of them, so I might still need it occasionally on Zoladex.

Some people seem to start on 1 x 20mg/week, and get dose escalated to 2 x 20mg/week or higher if that doesn't work. However, no one seems to think of doing an initial dose escalation when it's given in response to symptoms to get it working faster than in 2 months.

It's reported to work in 70% of men with HT-induced breast growth. I suspect some of the failures are probably down to widespread lack of understanding of the way dosing works and the long rise and decay in blood levels.

User
Posted 27 Jul 2019 at 13:42
Plus you are quite unusual in having seen breast reduction - for most men, it is an irreversible side effect which is why some men are entitled to have breast reduction surgery on the NHS.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2019 at 14:04

Lyn,

The research papers I read on its use for gynecomastia suggested it reverses breast bud/gland growth, but only growth within the last year, not any older growth. Also, new growth reverses fastest, which is why you want to hit it quickly if you start taking tamoxifen in response to symptoms rather than prophylactically. As you say, it certainly worked for me. It can't reverse the fibrous tissue growth which forms to support the glands as they get larger. I doubt it can reverse breast fat growth either, but I never found anything saying that one way or the other.

User
Posted 27 Jul 2019 at 15:56

In all the years I have been on here, I have never known another member whose moobs disappeared after HT finished, regardless of whether they had tamoxifen. We have had a number of members who needed counselling, antidepressants, binding and/or surgery.

I think a lot of doctors minimise the problem or underestimate the impact it can have. 

Edited by member 27 Jul 2019 at 15:57  | Reason: Not specified

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

User
Posted 27 Jul 2019 at 16:37

I hit mine with tamoxifen as soon as I detected them. I didn't wait until end of HT - they would be too old by then for tamoxifen to work. I'm still on HT for some time yet.

"I think a lot of doctors minimise the problem or underestimate the impact it can have."

Oh sure, for just about every HT side effect.

When I was put on HT, I asked what the side effects were.
"Your penis will shrink" was the response I got. That was it. And nothing even about that being avoidable.

This was why I leapt at the opportunity to run a session on HT side effects at a local support group when I was asked, so others are better informed.

User
Posted 27 Jul 2019 at 16:50
You missed my point. Many doctors say it doesn’t happen and if it does, it is reversible. You were lucky to get the treatment, most are refused so my comment was nothing to do with people waiting until the end of HT before they do anything.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2019 at 17:06

Ah, sorry Lyn.

I think that situation may have got somewhat better over time - many men do seem to get tamixifen now, and fortunately it's a dirt cheap drug, but I do still come across a lot in local support groups (nowhere near as informed as on here) who are unaware there's any way to avoid the moobs. I would be surprised if any doctors denied it happens now, although one consultant I only ever saw once expressed surprise it could happen in as little as 13 weeks. I was refused it at the outset, but not when symptoms actually appeared.

Yes, I'm very lucky with my onco and my GP. They've both done things I've asked for which are not on the approved path, but then I've only asked them for things which I thought were reasonable and I  could back up with research papers.

User
Posted 29 Jul 2019 at 20:14

Andy, your tamoxifen data is interesting. I am starting on 1 x10mg/week from the start - starting as soon as I started the bicalutamide.  The surgeon wondered if that was enough but the oncologist determined that as a start point. 

I started on 150mg/day bicalutamide yesterday and have felt crap all day. Very windy, watery bowls, headache and slight nausea. But on reflection I’m not surprised as yesterday I took bicalutamide, tamoxifen and also a Cialis pill and also enjoyed some beer and wine!  Oops!

interesting to see what tomorrow feels like with just the bicalutamide and no alcohol!

Interested in any experience of alcohol with bicalutamide that’s out there....

Edited by member 29 Jul 2019 at 20:43  | Reason: Not specified

User
Posted 06 Aug 2019 at 16:18
Hello, my husband has been on bicalutamide for nearly 4 weeks. He was recently diagnosed and this is his first treatment. The urologist told him not to drink alcohol whilst on the tablets. He has had no issues to date apart from feeling a bit tired but, of course this may not be drug related.

Ally

User
Posted 06 Aug 2019 at 17:03

Originally Posted by: Online Community Member

Andy, your tamoxifen data is interesting. I am starting on 1 x10mg/week from the start - starting as soon as I started the bicalutamide.  The surgeon wondered if that was enough but the oncologist determined that as a start point.

That sounds very low. NICE recommends 2x20mg/week. Some people start on 1 x 20mg/week.

It's rare to find anyone being prescribed anything other than the 20mg tablets, because the other sizes are about 40 times the price.

As I said, it takes about 3 months to build up to the steady level in your body, but that doesn't matter if you start taking it with the bicalutamide, because it takes around the same time for gynecomastia to start on bicalutamide. The initial dose escalation is relevant when you start taking it in response to gynecomastia having already started.

Originally Posted by: Online Community Member
I started on 150mg/day bicalutamide yesterday and have felt crap all day. Very windy, watery bowls, headache and slight nausea. But on reflection I’m not surprised as yesterday I took bicalutamide, tamoxifen and also a Cialis pill and also enjoyed some beer and wine!  Oops!

interesting to see what tomorrow feels like with just the bicalutamide and no alcohol!

Interested in any experience of alcohol with bicalutamide that’s out there...

I wasn't told not to drink, but as it happens, I don't drink anyway. I suspect the headache and nausea are most likely down to the cialis (tadalafil). I have taken all 3 of those together (albeit low dose bicalutamide and low dose tadalafil) without any side effects other than the expected hormone therapy side effects.

Edited by member 06 Aug 2019 at 17:04  | Reason: Not specified

User
Posted 12 Oct 2019 at 09:41

Hello all, well it’s been a while since I posted.

I’m 11 weeks into 150mg/day of bicalutamide, and have been doing well on it. I’ve been working very hard to be active, trying to swim (2km), run (5km) or weights in gym (45-60mins) maybe 6 times a week. Feeling like the strongest medicine maybe good and vigorous exercise!

Side effects - some tiredness (maybe the exercise), libido disappeared completely (no embers even burning...!), changed bowel movements (perhaps more frequent, and always a messy affair these days, mostly requiring bog-brushing after flushing to clean the bowl), reduced mental resilience (lower capacity to deal with nonsense at work), I’m wondering about slightly reduced flow but not 100% sure about that yet and changed smell of nose mucus (is that what you call ‘bogeys’?)

All of this has been very manageable and certainly much better than I had feared. With these side effects, I would have absolutely no hesitation in doing HT.

And then just as I say that, starting yesterday, sore breasts/nipples for the first time I guess signalling the start of breast growth. So I guess that means I should up my dose from the current low 10mg/week of tamoxifen? Does tenderness definitely signal breast growth, and is it fully avoidable via tamoxifen? Or is it inevitable that there will be some soreness? I’ll be testing with onco, but interested in views from the community.

I have my PSA, liver function test, consenting meeting with onco, and planning scan all next week - so a big week. I’ll be really interested to see how my PSA has responded to bicalutamide after being ridiculously high at 1.89 post prostatectomy..... will of course report in due course.

Edited by member 12 Oct 2019 at 18:00  | Reason: Not specified

User
Posted 12 Oct 2019 at 13:18
My psa was 1.5 post op. I’m now 4 1/2 yrs on. I was on Bical for 11 months and psa dropped to 0.33

If life gives you lemons , then make lemonade

User
Posted 03 Nov 2019 at 07:36

PSA and liver function tests showed no problem with liver and a greatly reduced PSA down to 0.12 from 1.89 immediately after prostatectomy- so I was very pleased to see the bicalutamide working.

Planning scan done, 3 “tattoos” around the pelvis completed and I’m ready to start the 33 sessions of radiotherapy - first one tomorrow. Strong direction from oncologist not to swim during RT which is disappointing (infection risk from the pool once skin gets to suffer from the sunburn stage side effects of RT). So looks like I’m left with jogging and the gym - my 2 least preferred means of exercise.

Increased tamoxifen to 20mg/week as breasts were and still are sore and also growing I think - so will ask oncologist whether I should increase again to 2x20mg/week.

Only other notable thing has been a 2 week period of very sore left hip after walking more than 10mins. Unsure if related in any way, but MRIs of hip and lumbar spine completed this week to have a look at. Results awaited. In the meantime, the pain has eased significantly which is great as I need to be mobile to get up to London every day fir the 33 RT sessions.

Edited by member 03 Nov 2019 at 09:00  | Reason: Not specified

 
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