Dad - hormone treatment, PSA down from 25 to 0.9

lells · New User Joined: 02 Jun 2008 Posts: 3 Location: UK

Hi,
I’m in the UK so would especially appreciate input about what treatment is available here for a 79 year old man. Otherwise all thoughts on my dad’s situation would be most appreciated.
Dad was diagnosed (after much dithering from the specialist) with prostate cancer on Christmas Eve 2007. At that time his Gleason score was 8 (that’s all we got, nothing more specific) and his PSA was 25. It’s been a steep learning curve but it seemed that dad’s options were limited to hormone treatment because of his age.
He’s been on the treatment now for 5 months and is suffering quite severely from side effects. Yesterday, accompanied by mum, he saw the consultant and they asked if two of the more distressing side effects were common. He told them that memory loss/confusion and severe joint pain were not side effects of the treatment. I’m not convinced?

We are so very thankful that dad’s PSA score has reduced dramatically and is now at 0.9. I see here that this isn't a really low figure though and wonder if that indicates that dad needs to look at other options. The consultant was not keen to tell dad this but mum was persistent. To me, that sounds like a good result but I’d be grateful for opinions on that.

The question I want to ask is this, I realise that dad is old and that NHS resources are limited but he is another battler who is bewildered by the awful side effects of the hormone treatments. His arthritis is so badly affected by the monthly injections and the exhaustion is making him practically lose two of the four weeks between injections. Does he have any other options, for example radiation treatment or must he simply accept this as the best and only treatment available to him?
He is also the only thing that affords my partially sighted mother some independence. Without him she is housebound so for two weeks out of four they are really struggling. Please understand that the whole family is rallying around but we can’t be with them 24/7 and they wouldn’t want that anyway.
Thankyou, Lells

Replicant · Moderator Joined: 01 Nov 2006 Posts: 271

Sorry to hear about your dad. I don't have much info in advanced prostate cancer. I do know that there can be long term side effects from androgen deprivation, and those side effects can include MILD cognitive impairment.

As far as I know, radiation would only be effective to target bone mets directly--in a spot fashion. That's done to reduce the tumors in the target area and relieve pain. It would probably not help your dad's overall cancer picture much (in other words, it would not replace a systemic therapy like he's on now).

As far as other options, your dad is probably limited but I suppose he could look into chemo, including whatever clinical trials he might qualify for.

There is a Usenet group called alt.support.cancer.prostate that you can access via Google at: http://groups.google.com/group/alt.support.cancer.prostate/topics . There are quite a few guys in that group with advanced prostate cancer, who have first hand knowledge of androgen deprivation treatment, its side effects, and what options might be available.

Hopefully your dad is seeing a top notch medical oncologist. I don't know how things work with the NHS and choice of doctors, but I believe there are some guys in the group I mentioned above from the UK, and they might have some ideas.

I wish you and your father the very best.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T3a, N0M0, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 <0.1, 12/07 <0.1, 4/08 <0.1, 11/08 <0.1
http://pcabefore50.blogspot.com

johnw100

Dear Lells,

Two friends currently on hormone treatment have been doing well for some time.

One is 90 and is still active. When diagnosed in 2006 his PSA was 50 and gleason score 9. In february 2007, his PSA reduced to .2 after a few months then down further to .04. He had leg pains which turned out to be not related to the treatment, and also has cold shivers. If his shivers become severe I suggested we discuss "intermettent" treatment so he can have a break for a time. The usual approach is to monitor the PSA and if it rises above a predetermined number treatment can be resumed.

My other friend was 61 when diagnosed a few years ago with bone involvement and leg pains. His PSA fell to under 1 and has remained at that level since. He also remained very active, plays a lot of golf and travels extensively. He has said that he feels that he's not as sharp as he was, but that could be due to his sudden change of lifestyle and events.

Unfortunately everyone is different, and there are a lot of grey areas with hormone treatment, so it's often difficult to know if the symptoms are directly related to that or something else.

Regarding side effects, time usually works in your favor as acute symptoms can gradually reduce as time passes. Other things that can help are diet, nutrition, exercise, and supplements like soy and red clover. These are alo important in the long term, especially in relation to bone health.
I know it's easier said than done, but it is important to exercise and remain active.

The .9 PSA is good in this context: hopefully it will remain at a low level over time.

As suggested earlier, radiation is a local treatment. Depending on a full diagnosis, it could have limited value, and is not always easily tolerated.

If severe side issues continue, change in medication or "intermettent" approach could be considered.

The yananow website has stories from lots of men in the mentors experiences section who have used various treatments including hormones.

The book by Dr Charles Myers, "Beating Prostate Cancer: Hormonal Therapy & Diet" is worth reading. It has a wealth of information on treatments, diet, supplements etc. Dr Myers has successfully used hormone treatment for many of his patients.

Best Wishes,

John

johnw100

Lells,

I meant to add that most treatments come as a 3 month option, which should be available to you, especially considering your situation.

lells · New User Joined: 02 Jun 2008 Posts: 3 Location: UK

Hi and thank you to both Replicant and Johnw.
I have taken a peek at the recommended forum but need time to find my way around it. I feel very reassured by the story of your two friends John - thank you for that.
Your good wishes are much appreciated and I'd like to say how supportive this forum is.
I will keep you posted on how dad gets on. I have no knowledge of how good or otherwise the oncologist is but it's something I should look in to I guess.
I am struggling over whether to give dad the information I have about how advanced his cancer is. I gather that given both the gleason score and the original PSA it's fair to assume that the cancer has spread but is under control for the moment. My gut instinct tells me that whilst he believes that it's only affecting his prostate he will cope but if he knows it's advanced it may be detrimental to him. Is it a case of ignorance is bliss?
Many thanks Lells

johnw100

Lells,

We can have gut feelings, buth there seems no point going into details with him about aspects which are speculation.

When PSA is under 20, over 99% of bone scans are normal: although his PSA is 25 if he had a bone scan it's far from certain that anything would necessarily show up.
My 90 year old friend who had leg pains discovered that it was due to arterial disease, not his PC.

lells · New User Joined: 02 Jun 2008 Posts: 3 Location: UK

[quote]When PSA is under 20, over 99% of bone scans are normal: although his PSA is 25 if he had a bone scan it's far from certain that anything would necessarily show up.
My 90 year old friend who had leg pains discovered that it was due to arterial disease, not his PC.[/quote]

Thank you Johnw, that's really reassuring and makes me sure that dad doesn't need to hear any 'speculation' from me.
Lells

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