Dad just diagnosed. Need advice

Hi SR12,

good to hear from you. I'm glad your dad is getting on OK with the HT. I'm curious if the evening primrose and sage work. We won't be able to prove anything scientifically but after a few months we will at least be able to say anecdotally they either work or don't for at least one person and that information will help the next person who comes along. There are members on this group who seem to be able to memorise this sort of thing, and recall it many years later for the benefit of others.

I mentioned on a previous post that Andy62 runs support groups on zoom and he may be running one about HT soon, so keep an eye on his posts and see if either you or your father can join in, you may pick up useful information. 

Just noticed the reference to the Mount Vernon support group and the Surviving Hormone Therapy class I do.

If he wants to join the Mount Vernon support group, get his consent to PM me his name and email (or his name and your email if he doesn't do email) and I'll add him to the mailing list. The group normally meets on the 3rd Wednesday of the month at 11am at Mount Vernon with clinicians present for the first half, although COVID has stopped that of course. Being a hospital group, it is for patients only (including patients from other hospitals). The group is small, so what I've done is to merge it into The FOPS during COVID, the prostate support group at Chorleywood. The FOPS is currently meeting on Zoom monthly. The FOPS is for patients and any family/friends the patient wants to bring along.

Surviving Hormone Therapy is an open and frank discussion of the side effects of hormone therapy and what you can do to minimise them and what you should do to preserve your physical/sexual/mental health, with some humour too. Part of it is also relevant to prostatectomy patients.

I was running this as a half day group session at Mount Vernon every 2 months for new patients until COVID stopped all their patient courses. It is ideal for hormone therapy patients who are a few months into their hormone therapy treatment - some attend at the time of doing their radiotherapy at the hospital. The Mount Vernon session is also patients only, including patients from other hospitals. Earlier this week, my consultant was hinting for me to start it up again over Zoom, which I'm very happy to do, but some of the services I use to run it there are not yet open again.

In the mean time, I've been running a shorter presentation version of it at local support groups around the country in a sort of virtual Zoom tour - I've done ten so far with four bookings still to go (and still the odd new booking coming in). This is part of an initiative by PCUK to keep the local support groups as active as possible during COVID, when patients are struggling to contact their own clinicians. I can probably get your father into one of the remaining local support group sessions (I'm doing one this evening). These almost always include partners too (depends on the local support group).

If there is sufficient demand, I could run a session for this community group - it's a minimum of 10 people (and preferably more) because some of the discussion is rather intimate, and if someone is not comfortable with some topics and there are only, say, 5 of us, it's too personal.

Hi SR12,

Coming off HT seems to be a slow process. It's just over six months since the last zoladex injection so in theory it has been out of my system for three months. My libido is still almost zero, perhaps a tiny bit above absolute zero, but not by much. Taking this with a big pinch of salt apparently men think of sex every 7 seconds, well on zoladex that drops to about once per year, now I would say I think about sex about once every couple of weeks, so a long way to go before I'm back to normal. You would think that not thinking about sex every seven seconds would have given me time to paint the garden fence, but it only freed up enough time to buy the paint and brushes and give them to my wife, I don't know what she is thinking about every 7 seconds, but she still hasn't painted the fence either. Physically things just about work, but until the libido comes back it seems a bit irrelevant. Medics have said it can take a long time to recover so I'm just hanging on in there. Next appointment with medics is December, I'll see how things are then, and probably update my profile, if things start to change.

Haha! Dave, everytime i read your posts, it always makes me smile. You really do have a good sense of humour and it is nice to see this as i am sure it can help make the process easier.

I hope the libido comes back very soon! 

Dad had a hot flush yesterday. He said it lasted about 3 mins. But then again it was really hot and he was wearing jeans! Told him to wear lighter clothes and cut down the hot drinks in this heat. Today he has had none.. he could also up the sage to 2 a day if he has to. Shall keep you posted.

Have a good weekend..

So pleased to hear from both of you! Thank you so much for putting my mind at ease. We were just so surprised. Didn't know if we should be happy or worried.

I didn't know that some men didn't even have HT before RT. I honestly just thought 18-24 months was the done thing.

Totally get the age thing too. Obviously we would like to have dad around until about 100! But we also don't want him to lose quality of life. Important to enjoy the life we have.

I hope dad's radiotherapy sessions are non eventful. He has a very high fibre diet at the moment, which we aware needs to change to low fibre. Hopefully we will get more info at the planning session. The phone consultation was really unhelpful. Literally like she was reading off a script.  I was expecting more from an Oncologist.

Evening primrose and sage defo helps my dad with hot flushes. I hope this helps anyone who reads this in the future. He gets about 1 hot flush daily around 8am, which lasts about 1min. Previous to evening primrose and sage, he was getting about 4/5 through out the day, lasting about 4min each time.

Dave, how is the libido now? How u getting on with coming off treatment ??

Hi SR12, not much libido. I've just updated my "hooray off zoladex thread" so people can refer to it if they are interested in tracking my recovery.

Has dad had a psa since being on ADT? I had one after 3 months and it was quite reassuring. If he has had one and it showed the psa was less than 1.0 (even better if less than 0.1) then I wouldn't expect anymore psa tests until post RT. If he hasn't had any since being on ADT I wouldn't be happy, I would want to know that ADT had either worked or failed independant of the RT. 

Yes Lyn, this is his 6th week of HT. The Onco said the same as you, that there was no point in doing it now but will be done a few months after RT. 

As Dave said, i think it would just be reassuring to get it checked to ensure the PSA was on a downward trend.. but i totally hear why there wouldn't be much point.

The only PSA dad had was the one that triggered the urgent referral to urology. He hasn't had one since.

Thanks for the tip re diet. Il let dad know and if it becomes an issue then we can ask to speak to a dietitian.

Also my dads PSA was around the 5 mark (corrected to 11.2) as he is on Finasteride. The Onco yesterday said his PSA was 5, when i said it was corrected to 11.2 as he is on Finasteride, she just seemed to brush this under the carpet and said it didn't matter? And then repeated again that his PSA was 5. 

I am just a bit worried about all of this as I have had experiences of medical staff getting stuff wrong. Maybe i am over thinking this but i think not being able to ask questions as really annoyed me!

Ah really. I am having a hard time getting my head around this Lyn. So dads PSA ay the time of the blood test, which triggered the referral was 5.2. The urologist said it was actually around 11 because they will double it due to him being on Finasteride. The nurses and most of the medical staff have said 11 when mentioning dads PSA.

On the MRI scan and biopsy results. It states 5 then in brackets it states corrected to 11. 

Therefore when the Oncologist said it was 5 that threw me. I didn't know that the fact it could actually be doubled if he wasn't on Finasteride wasn't relevant. Didn't the Finasteride make it go down to 5? Without it it would be 11?