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Overwhelmed and feeling like I am missing something

Maureen59
Posts: 4
Joined: May 2019

My husband is 63 and was diagnosed with PC in March with a PSA of 408.3 and Gleason 9. It has metastasized to lymph nodes & bones. A colonoscopy is needed because a mass was found during the prostate exam & is scheduled later this month and an appointment with MD Anderson for a second opinion will be after that appointment. His 3rd injection of Firmagon is also this month. After a whirlwind of dr. appointments, I feel like I am missing something, so I am turning to all of you experts for help.  Radiation isn't recommended at this time. Surgery hasn't been discussed, presumably not in the equation. Now what?? 

Georges Calvez
Posts: 171
Joined: Sep 2018

Hi Maureen,

In a case like your husband's radiation and surgery are unlikely to be helpful so the treatment tends to focus on the use of androgen blocking drugs. The first choice is Firmagon or Lupron but there are plenty of others as well.
Each case is different and although the cancer is incurable often it can be controlled for years. One of the things about prostate cancer is that it is a very variable illness with some cases proving a lot more serious than others.

Best wishes,

Georges

Maureen59
Posts: 4
Joined: May 2019

Thanks, Georges!  This diagnosis has rocked our world, that's for sure. It seems hormone therapy is the only option available to him, I just wanted to be sure I am not missing something in all the chaos. 

kidclutch
Posts: 39
Joined: Oct 2017

You are doing the right thing getting a second opinion. Radiation is a possibility in metastatic cases and a good cancer center can discuss that with you— it’s a newer development in metastatic treatment to treat the primary tumor. Best of luck. 

Maureen59
Posts: 4
Joined: May 2019

Thanks, Kidclutch!  I feel a little better hearing we are heading in the right direction!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3181
Joined: May 2012

While your husband's specifics indicate aggressive, advanced disease, know that hormonal therapy (HT) routinely lets many men live many years today. We have some here who have lived with metastatic disease 20 years.

You do not yet know the prognosis, or how the HT will effect him.  There is still reason to hope for years of relatively good quality of life for him and you both.

max

Sidtippy2
Posts: 23
Joined: Aug 2018

So sorry you and your husband are going through this.  His case sounds much like my husbands.  My husband's PSA was 1600 when diagnosed, with Gleason of 9, mets to bones, lymph nodes and lungs.  That was 18 months ago and he's going strong.  He has been on Lupron since diagnosed and a couple different hormone therapies.  Is now on a study and is getting Zytiga (hormone) and either Olaparib or placebo.  He feels much better than he did when diagnosed.  PSA has come down dramatically, got as low as 22 last summer, then started goibng up so changed meds.  It's a roller coaster of emotions, that's for sure, but it does get a little easier as you all adjust to the diagnosis.  Best of luck to you.

Maureen59
Posts: 4
Joined: May 2019

Thank you all for yourkind words and suggestions, they are much appreciated and bring a measure of hope for us.

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