Help With Decision

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

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

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

Jim

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.

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

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

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

thanks Lyn!

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

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

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. 

Hi apologies first time post.

My details. Age 75, Gleason 3+3, cancer on left side only. Biopsy taken 5 each side. Right side clear, left side 3 of 5 showed cancer. It was Put at Gp1. But urologist felt on digital examination so though would be Stage 2. Bone scan just come back clear. Complication is I am stuck in Spain, combination of COVID and Brexit issues. I am hoping to get back to UK in early April.

Been very impressed with the quality of information, and supportive nature of that support. Been impressed particularly with Burghboy posts, and all your advice/ support.

My urologist a German, splits practice between Bavaria and here. Saw him last week and he gave me the 4 basic options available. I am now thinking these through for further discussion in 10 days time. Am meeting with an fried who had complete removal of prostate 6 years ago when he was 63 years of age.

Excuse my nervous waffle, but thought background important. The more I read from you guys the more I believe that UK is place to be with this Cancer. So I will continue to read the excellent information posted in this Community and hope it helps me make the right decision.

Thanks your patience,

Langer ( David Langridge)

Hi David. 

Firstly thanks for your comments. 👍

I think you should probably start your own thread to get a fuller viewing, and to ask for specific advice.

From my point of view, your Gleason is low at 6, and your PSA is also relatively low 6.7. Your disease seems slow growing at this stage.

I think in your situation I would take my time on deciding what treatment to take or indeed if to delay. 

As you know, I have had surgery and subsequent RT with HT. 

The surgery was dramatic but recovered quickly. No urinary issues. ED has not recovered yet. Also the loss of length is disconcerting.

I have to say the RT has been very easy. On the other hand I don't like the HT. It is really making recovery from ED impossible. Also, lots of hot flushes.

Hope others will give you their thoughts. Probably best to start your own thread.

Best wishes,

Jim

Hi David. Haven't seen your new post?Have noticed myself that sometimes I needed to hit post twice.

J

A wee update from me.

Got my first post RT PSA result this morning. < 0.1. I guess that's as low as they go so taking as undetectable.

I'm on HT as well so a couple years before seeing the overall impact. None the less, very happy this morning and a glass of wine tonight is planned.

I have phone call with the Oncologist on Wed 31st March. Will find out next steps then. 

Jim

Thanks for taking the time AntonyB. 👍

Jim

Good luck with it. I have had salvage RT and HT for two years. No real I'll effects. Hate the HT. Losing strength and stamina. Too many hot flushes.

Nothing I can't deal with.

Very best wishes.

Jim

Edited by member 22 Apr 2021 at 21:58  | Reason: Missed word out.

Hi all. Hope you are all well.

I am 5 months into my Prostap HT following salvage RT. Getting me down to be honest. I have some questions that I know have been asked before. Can't find what I need from searching here.

I am getting up to 20 hot flushes every day. Full blown sweats. Only 5 mins or so, but each one wakes me up through the night. Is this normal and ways to manage? 

I have absolutely no libido. I am using pump nearly every day to keep healthy, but no natural erections or stirrings. It is such a shame for my wife, and I am really letting her down. I am so anxious that I don't want to start any intimacy. Any advice would be appreciated.

Finally a much less important issue. Although important to me. I play golf and seem to have lost at least 20 yards off of all my shots. Is this normal? Has my swing got really bad during my lack of play over the last year of treatment. Or is possible that I have just lost my strength?

Thanks again for your support.

Kind regards,

Jim

Thanks Chris for getting back with such a detailed note.

I will investigate Decapeptyl. I previously asked Onco nurse about alternatives due to flushes, and was basically told "they are all the same". 😡

I think I need to get to the gym. Belly and chest getting bigger but no weight gain. Most likely I am losing muscle mass. 

I think I'm fighting a losing battle on the libido front. Taking daily tadalafil and using pump but that is not really the issue. Need to waken the libido somehow. 

Thanks again,

Jim

I hope it works for you. I think with surgery, there is a greater urine incontinence risk, less so with HT & RT, but it takes a lot longer - in my case about 2 years. Yes, you get the Hot flushes, loss of strength & more. 

 But I'm coming out of that now, flushes - gone, strength back, Sex is almost back to normal, at 72, that is a bonus! 

I'm a year after the end of the HT, & that is how long it took for me to get back to "Normality" - I think. Testosterone is back to normal, I hope that does not upset the PSA test I have this Friday!

Good luck with your course, RT is only over a month, do observe the Diet restrictions to keep the gas down. Holding the pee, was a daily endurance test 😁, but they were great at Addenbrooks in Cambridge. I was just relieved most of this was done & dusted for me, before Covid hit us all.

Edited by member 25 May 2021 at 08:08  | Reason: Not specified

Peter

A wee update. Got my second PSA yesterday. 6 months after salvage RT and on HT. <0.1 again.

So all good other than: ED, no labido, loss of muscle strength and stamina, and many hot flushes each. Really struggling with these HT side affects (ED due to all my treatments).

I am on HT for two years. I think I will struggle with another 18 months. I was wondering if there is any updated studies out there relating to HT duration after salvage RT.

As always, thanks for the support on this group.