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PSA surprisingly high at 1.89 post radical prostatectomy

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 03 Nov 2019 at 08:39

Thanks Chris, I’ve got the plastic pee bottle on standby as we enjoy campervaning and have one for that purpose. Thanks for the suggestion and good to know you coped well with the RT. 

User
Posted 22 Dec 2019 at 07:38

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. 

The bowel was a different story and I ended up (still have...) with radiation induced proctitis which has been unpleasant and sore. I have also produced increasingly large quantities of gas. Proctitis feels like a sunburnt bowel internally, painful to pass a stool, and never quite sure if I’m constipated or with diahorrea or whether I want to pass a stool or some gas. Hydrocortisone suppositories at night with paracetamol (which I learned also has anti-inflammatory effects), dulcoease stool softener after porridge in the morning (porridge great for a gas-free experience but risk of constipation at least for me - so stool softener reduces pain of passing a stool), and Movicol (anti constipation) before bed with the tip of washing it down with warm drink - I used peppermint tea - to improve its effectiveness. This seems to be the formula that makes it manageable for me. 

Not at all surprising to see the bowel impact as you’ll remember I’m a T3 cause the PC had left the prostate before removal and was seen in a biopsy on the urethra - very unusually. So the RT is targeted on an area that includes as low as possible so that it sweeps up the urethra. In so doing, bowel impact is inevitable.  So far, no evidence of structures from RT on/in the urethra.

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.

I’ve been a bit tired towards the end but have managed some exercise most days, perhaps dropping to 4 or 5 times a week in the last couple of weeks. The exercise has proved difficult to get out and do but made a huge difference. 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. 

Next steps check up with oncologist at end Jan 2020 but main event mid March 2020 with a sensitive PSA test included to see what the RT and HT combo has achieved. That’ll be a big day, but need to put it to one side and get on with living life now!

In the meantime, time to enjoy Christmas with the family!

Happy Christmas to you all - here’s hoping 2020 brings you all much health and positive progress. 

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.

User
Posted 22 Dec 2019 at 08:26

Thanks Andy, still taking the Tamoxifen 20mg once per week. Oncologist quite clear that he didn’t want to increase it above that level even when breasts were sore. Will keep that going for about ) weeks, certainly until I see him again at end Jan 2020. 

User
Posted 30 Jun 2020 at 12:46

Feel like I owe an update, all of which is good. As a reminder, my story is wonderfully captured in a concise way by the Onco as follows:


Diagnosis: Adenocarcinoma of the prostate: Feb 2019
- Presenting PSA 4.3. MRI: T2 N0
- TP Biopsy: Gleason 3+3-3+4 (15% Gl 4); 14/22 cores (max length 4mm); PNI
- May 2019: RARP: Gleason 3+4; +ve margins (apex: Gleason 3+3 L / 3+4 R).  pT3a Nx (+ve urethral biopsies)
- July 2019: Post-op PSA 1.89 / 1.90.  PSMA-PET-CT: No obvious PSMA avid disease but uptake in bed.
   Commenced Bicalutamide (with tamoxifen cover)
- Oct 2019: PSA 0.12
- Dec 2019: Completed salvage radiotherapy: Prostate Bed.  IG-IMRT: 66Gy in 33 fractions; stopped Bicalutamide
- March 2020: PSA < 0.03
- Jun 2020: PSA <0.03

So undetectable PSA 6 months out is a great result after having a PSA of 1.90 post RARP.

Thanks for all the support from this community over the last about 18 months.

Edited by member 30 Jun 2020 at 12:51  | Reason: Not specified

User
Posted 30 Jun 2020 at 13:24
Excellent results Guy, delighted for you👍
User
Posted 30 Jun 2020 at 13:35
RT seems to have done a good job - excellent
Barry
User
Posted 30 Jun 2020 at 14:29

Result!!!

Flexi

User
Posted 30 Jun 2020 at 15:57

Escellent result. Thanks for update.

Ido4

User
Posted 30 Jun 2020 at 17:09
👍

Hope it continues

Good luck

Cheers

Bill

User
Posted 30 Jun 2020 at 17:50
That's a great response Guy!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Sep 2020 at 21:22
I wondered about starting a new thread for this, but decided not to cause it is interesting to link to my history.

My Dad (88 next week) has just been diagnosed with advanced PC this week, with a PSA of 1500 and spreads into at least liver and bones. I saw him 7 weeks ago, he had lost weight (which he needed to) but wasn't complaining of any pain. My sister saw him 2 weeks ago and similarly, he wasn't complaining of pain then either. But as of today, his pain is a problem, and from tomorrow will be on morphine.

He has dementia which has been gradually deteriorating for the last about 10 years, and maybe this has contributed to his tolerance of symptoms or perhaps inability to express what's going on with him.

But I guess PSA of 1500, with it in at least liver and bones - probably elsewhere too, with him not eating much and being on morphine means we're in a very short last lap - a few weeks at best?

Interesting perspective for me to experience this with my Dad, with my 3rd 3-monthly PSA test post treatment due next week, after the first 2 'undetectables'. Brings a new perspective to have got this nasty disease removed from me at an early age!

User
Posted 03 Sep 2020 at 00:35
I do hope that you are wrong and have more than a few weeks - I assume they are going to start him on HT? As he is hormone-naive, the response may be very good and a) reduce his pain and b) keep him around until something else gets him.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Sep 2020 at 09:14
Thanks LynEyre as ever for your suggestions and support. No sign that they'll do any form of treatment - but it is quite new info, so they might just be working through what to do. I hadn't thought that HT might help with the pain - thanks for that suggestion - I'll push it into the system of care now looking after him.

As an aside, we've been amazed about the difference in care between dementia (nothing available, no one seemingly interested) and cancer (lots of resources, interest and care). Doesn't seem just to me. Without his dementia, we might well have picked this up earlier.

 
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