Newly diagnosed and BRCA2 mutation - Advanced Prostate...

Advanced Prostate Cancer

21,238 members26,506 posts

Newly diagnosed and BRCA2 mutation

Juliane314 profile image
14 Replies

Hi all,

My father (71) experienced frequent urination at night starting end of March this year. He had some blood test and had a PSA 13.6 at the end of April. His doctor wanted him to do a biopsy (they didn't do a digital exam though) At that time, my parents were preparing their trip from China to Canada to visit me and my family. His doctor in China asked him to repeat the PSA test in Canada in a month and if it remains high, he should go back to China for the biopsy. At the end of May, we repeated the PSA test, it was 14.7. My father returned to China at the end of July and within a week of time he completed an MRI, bone scan and a biopsy. The dx was prostate cancer with metastases to 3 spots in the pelvic area and nearby lymph nodes, Gleason score 5+5, at that time his PSA jumped to 39 (almost tripled within 2 months of time)

We were all in huge shock. My father has always been in excellent shape. He doesn't have any chronicle disease. He has an extremely healthy life style and diet. In 2013 when he retired, he went to get a whole body PET scan to verify if he had any signs of cancer, yes in China, if you pay out of your pocket, you could get this type of tests done. He didn't have anything. I didn't understand why only 6 years has past, he could have this so called lazy cancer spread to his bones? The first few weeks were very hard for me. I was angry, depressed, desperate and at the same time extremely sad. After doing some extensive readings and joining a few online support groups, I started to feel a bit better. I learned that prostate cancer is relatively mild. The research of the recent years made very promising progress on the treatments and is able to prolonged patients OS significantly while maintaining a satisfactory qualify of life. I also learned that dad's current status is called oligometastatic. In China, it is very common to perform RP on these patients after a few months of ADT, and they are talking about "cure" and I started to let myself to dream a bit on having many more years to spend with him.

My father started ADT+Zytiga +prednisone + Zometa on Aug 2nd. We just got his first month's blood work. PSA is down to 0.71, T is 0.07 ALP remains at 156. This all looked very encouraging… until this morning when I received his genetic report which showed that he has somatic BRCA2 mutation… I feel that I was hit so hard that I was put back to the same status of a month ago.

I looked a bit online about this mutation, it looks very depressing. It's an independent for poor prognosis. I guess this mutation explains why he is a G10? It also explains why within 6 years he could progress from cancer free to metastatic ? I've learned so much from this forum. I'd appreciate any comments and feedback on my father's situation. Thanks!

Written by
Juliane314 profile image
Juliane314
To view profiles and participate in discussions please or .
Read more about...
14 Replies
Tall_Allen profile image
Tall_Allen

Prostate cancer is only slow progressing in early stages. Once there are multiple metastases, it may spread much more rapidly.As far as we currently know, metastatic cancers cannot be cured, but they can be maintained.

If he has a somatic BRCA 2 mutation only, his high-grade cancer accounts for the mutation. There are experimental PARP inhibitors that may be effective against tumors with that mutation. Carboplatin may be effective too.

I'm glad Zytiga is working so well for him.

Juliane314 profile image
Juliane314 in reply to Tall_Allen

Thanks Allen. Do you know if BRCA2 would shorten the castration sensitive stage?

Tall_Allen profile image
Tall_Allen in reply to Juliane314

I don't know that it has anything to do with that.

snoraste profile image
snoraste

There are some studies (non-randomized) that show BRCA2 patients respond better to Abi+Prednisone (and other treatments such as Ra223, BAT), although the cancer itself is more aggressive (an example below):

practiceupdate.com/C/71129/...

They also benefit from cross-research in other cancer types (breast cancer being the first one that comes to mind) which makes additional lines of therapy available to them. I'm glad the medication is working.

Juliane314 profile image
Juliane314 in reply to snoraste

Thanks for the link snoraste. Although the size of the group is small, the result is encouraging!

2dee profile image
2dee

I'm BRCA2 mutation positive. Mother died at 53 from metastasized breast cancer. Grandfather died prostate cancer at 81. Thanks Gramps.

I'm 77yr old, PSA started 1300+ and rising a point a day. AP over 400. Metastatic throughout skeleton and lymph nodes. Too many mets to count. Given 6mos. Lost 55lbs in 3 mos.

On ADT (Lupron) and alkaline therapy for about 14mos. Diet and lifestyle changes. PSA now less than 2 for about year, AP and other labs now normal. Pain now tolerable. Weight back up 30lbs and holding. Working at regaining strength and stamina from near zero.

Will likely start PARP inhibitors AFTER Lupron starts to fail. More research being done on genetic mutations and cross platform treatments is exciting.

Your dad may have a reasonably long time to go if ADT, PARP, Radiation, and some alternative treatments started now. Some side effects to endure maybe but should get the PCa slowed down at least and you guys should have some quality time together.

2Dee

Juliane314 profile image
Juliane314 in reply to 2dee

Glad that the treatments are working so well for you! May I ask what is alkaline therapy?

2dee profile image
2dee in reply to Juliane314

You have seen my PERSONAL experience with Alkaline Therapy touted in many posts on our site. Yes I did some "research" (WEB and books), before including the treatment in my daily regimen. When I was being Dx in early 2018 I wanted some treatment to get started fighting my 1303 PSA before the SOC kicked in. Seemed to me that the medical system wasn't as concerned about getting MY treatment started.

MY Alkaline Theray(AT) that I have evolved down to 10 days a month will continue for me. Docs say no harm, not really interested in personal success if not through their Standard Of Care (SOC).

I started the first 12 days with what I though were meaningful results since I hadn't done anything else first. Did PSA test before and after showed a drop from 1303 (and climbing a point a day) down to 362 in 12 days. While 362 is by no means low MINE dropped by over 70% in just 12 days!! While not scientific that was VERY meaningful for me. Your mileage may vary if you consider such an alternative therapy course. I also changed diet but a few days of eating rabbit food won't kill my PCa.

AT consists of 1tsp Arm Hammer baking soda, 1tsp pure maple syrup in a cup of water. One cup 1hr before first food and another 1hr after last food at night. Timing is very important.

No more than 14 days straight before a break of about 10 days is one cycle.

2Dee

2dee profile image
2dee

BTW it is imperative that your father's bloodline be genetically tested so results can guide each individuals diagnosis and treatment plans.

2Dee

Juliane314 profile image
Juliane314 in reply to 2dee

Even if his BRCA2 mutation is somatic, his bloodline still should get genetically tested?

2dee profile image
2dee in reply to Juliane314

Genetic or Genomic may be the question.

I believe that Genetic means inherited. IF and only IF his bloodline relatives, parents, grandparents, etc., or siblings then I strongly suggest that he seek genetic counseling. They will recommend and approve testing and most insurance will THEN cover the test itself. (Simple blood draw in my case).

I believe that BRCA1 or BRCA2 mutation increases chance of PCa by 70%. My case I think. Discovering mutation also means that other therapies are now available such as PARP inhibitors for me when Lupron fails.

Informing family members and giving them a copy of his test allows their insurance to cover their testing. He could save some other lives and improve their diagnosis and treatment decisions.

2Dee

Hirsch profile image
Hirsch

RP would probably not be a consideration

Juliane314 profile image
Juliane314 in reply to Hirsch

it is because of his metastatic status or BRCA2 mutation?

Hirsch profile image
Hirsch in reply to Juliane314

Metastatic status and quality of life issues at this time

You may also like...

Husband has the BRCA2 mutation, does this change treatments?

2014, RT with 6 months of ADT 13 months later when PSA went up. Then 13 months later PSA started to...

Reversion mutation - BRCA2

had a Guardant360 CDx liquid biopsy that showed my BRCA2 inherited mutation, previously treated...

Newly diagnosed researching lifestyle changes

family history of prostate cancer that I know of. Now 7 years later age 64, PSA 18, Free PSA 11%...

Newly Diagnosed Prostate Cancer

locally advanced prostate cancer. Because of ECE, we are told surgery will not be his best option...

Advanced prostate cancer (stage IV) newly diagnosed

Hi! My father is 81 year old and has been diagnosed with advanced prostate cancer in october 2017....