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Brother newly diagnosed - aggressive

JML51
Posts: 4
Joined: Dec 2018

Hi everyone,

I'm helping my brother do a little research as everything's a bit overwhelming right now.  He received his biopsy results yesteday & the results were pretty discouraging.  His Gleason score is 9, PSA 19, the cancer is the aggressive kind, & it was found in every sample they took.  He's scheduled for a bone scan next week, & another test/scan, (I don't know what that one is). He lives in rural MN where they don't have all the options available for treatment, so he's trying to get an appointment at Mayo Clinic in Rochester, MN for a second opinion & to learn what forms of treatment he would be a candidate for.  I've shared this site with him, & I'm sure he'll eventually get on here himself, but for now any thoughts, recommendations, or encouragement would be greatly appreciated!

Thank you so much!

Judy

At this point it doesn't seem to make much difference, but he is Vietnam Vet. & was exposed to Agent Orange

 

Georges Calvez
Posts: 172
Joined: Sep 2018

Hi there,

The first thing to remember is don't panic.
It may look bad but men have walked away from worse or the disease has been controlled for a long time.
Prostate cancer is rarely lethal in the short term like some cancers, it is possible to live with some forms of it for decades before eventually expiring of something else.
You really do have to wait and see what the results of the bone scan and I suspect the MRI will be.
Hopefully it will be contained inside the prostate or only locally invasive.
The good news for you is that they are moving quickly and hopefully you will have a good picture of the situation and the choices in front of you soon.

Best wishes,

Georges

JML51
Posts: 4
Joined: Dec 2018

I appreciate the encouragement!!  Other than trying to make sense of the information, arrange appointments & get things figured out, my brother seems to be optimistic & handling this quite well.  He's also very healthy & in very good physical shape.  I (or he) will post the results of his scans once he has them.  

Thanks again for your reply & well wishes!

Judy

 

Old Salt
Posts: 752
Joined: Aug 2014

There's special help from the VA for Vietnam veterans that were exposed to Agent Orange. I hope that your brother will look into that, if he hasn't already. 

BTW, getting the Mayo Clinic involved in his care is excellent. 

Hoping the scans will not show metastasis.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3116
Joined: May 2012

Judy,

I must second both of Old Salt's points.  I was a vendor for the VA for about a year (but NEVER an employee or spokesman of the VA).  I do know for certain that any Vietnam Vet who can document exposure to Agent Orange qualifies for VA care of prostate cancer; no "proof" of cause is necessary.

And, the Mayo clinic is far and away the best cancer care in the state.  IF you had to choose between the Mayo or VA, definitely go Mayo.  BUT, the VA outsources most of its oncology care, so it is possible that the VA will send him to Mayo anyway.

We have a lot of guys here who have had metastatic prostate cancer for years, and are doing well; some for nearly 20 years now.

max

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Judy,

You are wonderful for caring about your brother. I hope he decides to join us here in the forum.

I am sorry for the diagnosis which seem to be voluminous and aggressive (Gleason rate 5). I wonder if he has any symptoms. The positive DRE described by you on your other post, is also not a good prognosis as it may indicate extraprostatic extensions. In any case, the scans may reveal the extent of the disease from where you will then be given a clinical stage and advice on options. Get copies of all relevant data (biopsy samples, reports and tests) and pass them to Mayo for a second opinion. (Your story starts here: https://csn.cancer.org/comment/1648529#comment-1648529)

There have been many Vietnam Vets reporting their cases and how they managed to get the VA to pay/assist in treatments at other clinics. You can read on such in below links and try contacting the posters using the CSN mail, if any:

https://csn.cancer.org/node/140142

https://csn.cancer.org/node/310964

https://csn.cancer.org/node/224046

https://csn.cancer.org/search/node/Vietnam%20Vet%20VA?page=1

Best wishes and luck in his journey.

VG

JML51
Posts: 4
Joined: Dec 2018

Gosh, you fellows are great - puts a lump in my throat actually.  I can't wait for my brother to get on here & receive your awesome support & advice!  Thank you VG for taking the time to send those links; I was doing searches, but didn't find all of this info.  It's nice, to know there are success stories!  I feel very blessed that he's in MN & has access to Mayo they accept his insurance!  I know it's going to be a roller coaster ride that's probably going to be pretty rough for him sometimes, but today feels like a good day!

Thank you again,

Judy 

Rich1958
Posts: 1
Joined: Nov 2018

... to ask your physicians a million questions.  make sure your concerns are addressed promptly.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3116
Joined: May 2012

Judy,

MOST PCa (prostate cancer) treatment stories are success stories.  Even the most aggressive and advanced cases commonly give men many additional years of quality life, but most new cases of moderate disease result in cure.

Ask for PAPER COPIES of his biopsy results and all other diagnostic information when you meet the doctor with him.

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