I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
<123

Help With Decision

User
Posted 20 Nov 2020 at 09:41

Hi Jim.

Good to hear from you. Glad your surgical recovery has gone well and that the plumbing is working. Sorry to hear about your PSA rise, but once those little bastards get starved of testosterone and zapped it should go very low. 😀

User
Posted 20 Nov 2020 at 10:59

Jim

If you use this site's search and search "NHS prescription pump" There is a list of threads worth checking out. I pasted a link to one below

https://community.prostatecanceruk.org/posts/t25660-Should-i-buy-a-pump

 

Glad your recovery seems good but shame you need more treatment, good luck with it

Cheers
Bill

User
Posted 20 Nov 2020 at 15:18

Thanks Bill. Helpful information.

Jim

User
Posted 13 Dec 2020 at 11:27

Update for Dec 13, 2020.

Heading for RT planning session tomorrow. RT treatment starting Dec 28th

First Prostap injection Monday Dec 7th. So far, no side affects to note. Early days. Maybe weight going up?

Also wanted to let you know that the NHS genetics team have advised that I have an altered BRCA2 gene. At least some sense on why I have this disease.

Jim

User
Posted 13 Dec 2020 at 15:18
Is gene testing part of what they do, or did they have a specific reason for testing you?
User
Posted 13 Dec 2020 at 16:16

No, it's not normal. Family history prompted investigation.

Jim

User
Posted 13 Dec 2020 at 19:13

Hi Jim

Good luck with your RT and treatment.

My husband had RARP at the end of July and his post op PSA was 0.2. His histology was worse than the pre op diagnostics. He started 33 fractions of adjuvant RT at the start of November and will finish this week coming. His oncologist decided that HT would have no added benefit for him.

Best wishes. 

User
Posted 13 Dec 2020 at 19:23

I am also waiting for the NHS Genetic Team results. I was told 3 months for my results. I am being tested for BRCA1 and BRCA2 and one other that I forgot to note down before I returned the form.

Maybe I will feel better knowing that there is reason why I got PCa. It will also be important for my son.

Good luck with the RT Jim.

User
Posted 13 Dec 2020 at 19:40

Thanks Lexi26.

Interesting that he is not having HT? I do wonder what benefit it will have for me but going with the flow.

Good luck and best wishes to you and your husband.

Jim

User
Posted 13 Dec 2020 at 19:44

Thanks.

Got to say it made me feel a bit better. Big implications for the family, both your son and maybe extended family as well.

Jim

User
Posted 13 Dec 2020 at 22:11

Originally Posted by: Online Community Member

Thanks.

Got to say it made me feel a bit better. Big implications for the family, both your son and maybe extended family as well.

Jim

In ovarian cancer treatment, if you have a BRCA mutation it opens up possibilities for targeted therapies after surgery and chemo.

I don't know whether this is the case for prostate cancer or not?
(Looks like it might be a fairly new thing in the EU, which no longer affects us, according to this article AstraZeneca and MSD’s Lynparza (olaparib) has been approved in the European Union (EU) for patients with metastatic castration-resistant prostate cancer (mCRPC) with breast cancer susceptibility gene 1/2 (BRCA1/2) mutations, a subpopulation of homologous recombination repair (HRR) gene mutations.)

 

User
Posted 13 Dec 2020 at 23:13

Thanks Alex. I had read about the therapies you mention for ovarian cancer. I didn't know about Prostate Cancer. Really interesting.

Hope I never get to that point, but good to know. Also, reminded me that I need to make sure my Onco is aware of my BRCA2 situation.

Jim

 

User
Posted 14 Dec 2020 at 00:22

Yes. Definitely hope you never get anywhere near needing it.

User
Posted 14 Dec 2020 at 20:08

From why I read BRCA is prevalent in around ~5% prostate cancers. If memory serves me right is a genetic error which stops cell apoptosis (pre programmed cell death) when a genetic mutation makes it potentially cancerous.

hope the results come back favourably but like you in a big fan of visibility and awareness rather than flying blind. Roll on immunotherapy...it’s coming and lots of work being done in the US on next gen CAR-T with negating a tumours immunosuppressive properties in hiding from the immune system. 

Edited by member 15 Dec 2020 at 01:22  | Reason: Added keyword ‘prostate’. Thanks Lyn!

User
Posted 15 Dec 2020 at 00:03
I think the data suggests that a genetic fault is present in around 5% of prostate cancers - these include BRCA1, BRCA 2 (white men and particularly Ashkenazi Jewish men) but also others such as HOXB and some that seem specific to African Caribbean men but are not yet proven. The last time I was at the GP surgery with Dad, I noticed they had a big poster encouraging Jewish patients to book a PSA test, especially if they were of Ashkenazi heritage, because of the increased risk of carrying BRCA1/2.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Dec 2020 at 01:21

Edited as missed the key word ‘prostate’ 🤷🏼‍♂️

thanks Lyn!

User
Posted 07 Jan 2021 at 17:23

Just a wee note to say Happy New year, and a big thanks to everyone on this site.

Your information and support in 2020 was so helpful to me in going through surgery and now salvage radio therapy. It has been enormously valuable to take this path with my eyes open because of the information provided here.

Had my 8th RT session today. So far, so good. 

Jim

User
Posted 13 Jan 2021 at 18:27

Jim,   Awkward question if i may (apologies) . With the benefit of hindsight would you have been better going down the RT route first , instead of opting for surgery. My numbers are very similar to yours and there is a risk that it is near or on the surface (T3 ?) What I'm trying to establish is that if there is a risk you might need RT after surgery why bother going through the operation and recovery in the first place if you are only going to end up on RT anyway?  You possibly might only need the brachytherapy as i assume being able to target it accurately in the first place has a better outcome than the treating "an area" after the prostrate has been removed?

Thanks and hope the rest of the treatment goes well
x

User
Posted 13 Jan 2021 at 19:16

Thanks for your question. Not a problem to ask anything.

It's really difficult to answer. In some ways, I would say yes. The RT has so far been very easy. If it was guaranteed to cure me then I might have chosen this route. I was going to be on HT for 3 years and didn't fancy this. Also, you don't know if you cured (or in remission) until you are done with HT as well. So you have to wait.

On the other hand. There is no doubt that my cancer was far more extensive than first thought. This has only come to light following the surgery histology. Hence would my RT plan have done the job? Brachytherapy was never an option for me but I don't think would have worked.

It seems to me to be more difficult to deal with an outcome of failed RT. The main option here is even more difficult surgery.

My prostate has gone. Hence I know for a fact that no further cancer can grow from it.

As I say difficult to answer your question. There is uncertainty in which ever route is chosen.

Jim

User
Posted 13 Jan 2021 at 19:31

Thanks :-)

Do you know why you weren't offered brachytherapy ? I have incorrectly assumed it was the "gold standard" RT and available to all as its very targeted and has fewer side effects ??

I have been offered either the robot surgery or brachytherapy with a Gleesan 7 (3-4) and T3a ? 

No mention of any HT

With failed RT is more & stronger RT an option ?

 

Phil

User
Posted 13 Jan 2021 at 20:05

Just my experience..when diagnosed I was 52 and final histology showed localised T2c (3+4) all negative margins. I was advised against brachytherapy by my urologist on the basis of perceived increased risk further down the line in terms of secondary primaries with patients <60yrs.

User
Posted 13 Jan 2021 at 20:34

Hi Philip, 

I had brachy and am pleased with it. I think one of your questions is "can you have stronger RT if the first treatment fails?" I'm not 100% sure of the answer, but apparently there is a life time limit to how much radiation certain bits of your body are ever supposed to get, so as a general rule once you have RT to your prostate your up to that limit, and you shouldn't have any more to that area of the body. I have never found any reference to what the limit is in greys, nor can I see the logic in leaving someone with a cancer that will kill them, rather than zapping them with even more x-rays and taking them above the lifetime limit, which might also kill them, but might not.

BTW you might want to start your own thread on here, introduce yourself with your diagnosis, that way your questions and "story" all ends up in one place and you can refer back to it, a bit like a diary. 

Dave

User
Posted 13 Jan 2021 at 20:47

I'm no expert but Brachytherapy not the gold standard for all cases. 

I expect my cancer was too extensive. My initial diagnosis from MRI and then targeted biopsy was cancer on left side apex. As it turns out I had positive margins at the bladder base, and I think prostate bead.

As has been mentioned in other answers. There is a life time limit on RT. So can't have repeats on same area.

There are focal therapies that I don't know anything about. I have read these been repeated on different areas.

Jim

 
Forum Jump  
<123
©2021 Prostate Cancer UK