Father Newly Diagnosed With Prostate Cancer

Good evening all,

My dear father (70 years old) has recently been diagnosed with prostate cancer. We're obviously very worried and would love to hear from others about their experiences with this terrible disease.

What we know so far:

Prostate Cancer T2a N0 M1. Bone mets to pelvis and some spots in thigh bone, spine and ribs. PSA at Diagnoses 552. Casodex started and first hormone therapy injection given on 05/05/17. Biopsy to be done on 12/05/17.

Blood test 1 week after Casodex shows PSA has dropped by 150.

We have been told today that they would like to start chemo along with his hormone therapy as studies have shown this could give him a longer survival rate. Assuming this is from the Stampede trial?!

Myself and my sister are absolutely devastated by the news but remain hopeful and are keeping positive. He has been our sole parent for many years now and we would be lost without him. We've changed his diet and he is feeling better than ever. He has no pain and is taking it all in his stride.

I just wanted to hear some of your stories and welcome any advice that we could be given. Especially with using chemo alongside hormone therapy early on.

Hope to hear from you soon!

All the best,

Kat 😊

Kat,

I'm sorry to hear his advanced PC diagnosis.

One question - why are they bothering with a biopsy? They know it's metastasized, so what could they possibly learn from a biopsy that would be of any use? Why put him through an unnecessary diagnostic procedure?

You are right that the STAMPEDE (UK) study as well as the CHAARTED (US) study confirmed that early chemo extends life significantly when there are multiple metastases. Are you in the UK?

When you meet with his oncologist, I hope you bring up the topic of debulking the prostate. Some studies suggest that that can extend life in some cases. This is very much experimental, but if you are in the UK, "Arm H" of the STAMPEDE trial includes prostate radiotherapy + hormone therapy for newly diagnosed men with metastases.

Kat,
So glad that you found this forum, and are searching for answers. You are a very caring daughter. Sorry to hear about the advance PC DX.Many others will post very soon to you.

There is so much to learn about this disease. Even the most knowledgeable are still learning, (and at times disagree) which might make your and your Dad's job a bit harder. But don't dismay, just endeavor to become the best advocate for your Dad that you can be. Also tell him he needs to be his own best health choice advocate also. I would advise that you both find the very best Oncology team of Doctors that you can, ones that you feel totally confident in, but yet never be opposed to second opinions.

I too have PCa, but you know what? I am in remission, there is hope out there that we will still have many, many years left. I would suggest this: Go to the Google Custom Search area at the top of the Forum page, right under Forum and Chat. Enter "Letters to the newly Diagnosed" in the search box. You will find some very good advice and even comfort there.

I would also go to places like "Todd1963 "posts, and his very well written blog,(there is a link a the end of his posts) I log into Healing Well almost every day, looking for information, and just as important for inspiration to keep my battle going strong, and my journey meaningful.

Like Nikki says, with hope, and like I and others like to say "keep the faith"

Wings aka Dan in So Cal

I just bought the book off Amazon Prime. Will be delivered this evening 👍🏻

Hi Kat! When I read your post I thought of a few responses and then I read everything I was thinking from the replies the others had posted. So what can I say, except welcome, and boy is your Dad a lucky guy to have you and your sis watching out for him. I was impressed that you knew about the STAMPEDE trial. If it were me, I'd cancel the biopsy. In retrospect, I am pretty unhappy that my DH had been ordered one, especially since they began treating him for mets prior to the procedure. No reason to risk infection since your dad just got past the UTI ,which can be stubborn to clear up. Maybe your MO has a reason and thinks that the bx could change his treatment protocol, but if not, it's just a painful and unnecessary experience. It sure wouldn't hurt to ask.
Best wishes for continued drop in psa for a very long time.
Beth (for my DH Gary)

A biopsy will give them a Gleason score or maybe it's just one of the rules they must follow before they can prescribe further treatment..I would not put myself through that unless it's deemed absolutely necessary....

Kat for what it is worth my dad was diagnosed with metastatic prostate cancer in 1984 and he lived 30 years on ADT. Finally died at 90 from heart failure and arteriosclerosis.

I am curious how men end up with PSA's in triple digits. My urologist insisted on biopsy when mine reached 4. Was it not tested before or did it take a big jump?

Kat - That is a controversial question these days. In the face of over treatment and based on some government recommendations, routine PSA checks are not standard and many, many men never get them.

Andrew