BRCA1 BRCA2 mutations decision

Morkies

Hi everyone.  I've been reading the posts and have decided to join for some advice from fellow travelers.  At 41, (17 years ago) I was diagnosed with triple negative, Her2neu negative, stage 2 invasive breast cancer.  I had a lumpectomy followed by 6 rounds of CMF and 35 radiation treatments.  I went straight into menopause after first chemo so I erroneously thought I never had to worry about the ovaries causing a problem.  I was wrong because on May 31 this year I was diagnosed with stage 3c ovarian cancer.  A total hysterectomy was performed, plus appendix, plus cervix, plus a section of small intestines was removed.  CA125 was 2680 but dropped to 13.8 after surgery.  I decided on the dose dense chemo- half way through with nine left.

 

Due to age at breast cancer diagnosis and triple neg status, oncologists suggested BRCA test.  He said that I would have automatically been tested if I had that diagnosis today.  Well, my results show a "deleterious mutation" on both BRCA1 and BRCA2.  He recommends a bilateral prophylactic mastectomy.  I asked him if he were going to cure the ovarian cancer because it would be a wasted effort otherwise and he said yes.  I have made an appointment with my breast cancer surgeon to discuss this.

 

I don't know what to think except I'm tired of not feeling well - surgery to chem to surgery sounds daunting to say the least.  My husband thinks I should take some months off after chemo (ends two days before Thanksgiving), feel well for a while and then have surgery.  I'm not sure I could emotionally cope with beginning to feel well again all the while knowing the surgery was looming over me. 

I would appreciate any insight that you would be willing to share.

 

Scotti233

I am so sorry about your health issues.  I have brca2 and have had both bilateral mastectomy and ovaries removed preventively, so I have not suffered the way you have.  But as the daughter of a cancer researcher (he was on he board of the NIH when my mom was diagnosed with pancreatic cancer) I can tell you the most important thing you can do is get a second opinion!  I have never heard that taking off your breast can cure ovarian cancer.  It can reduce your risk of getting breast cancer significantly, but I have never heard a hysterectomy or mastectomy can cure an already present cancer.  For instance, although I no longer have ovaries/Fallopian tubes or breasts, I still get checked for pancreatic and cervical cancer yearly.  I don't know where you live, but if you are near major teaching hospital, that is where you should go for an opinion.  The best are Anderson in Texas, Slone Kettering New York, university of Chicago or Northwestern in Chicago, Cedars Sinai in Los Angeles.  Often you can send your records and consult without having to go these facilities to get a second opinion.  But with all you have gone through, you may want to consider treatment at one of these if its feasible.

I wish you all the best for a speedy recovery.  I cannot stress how important it is to get a second opinion any time you are diagnosed with a serious illness.  Even the best physicians can be wrong, after all they are human.  And it sounds to me as though your current doctor either did not explain things well or does not have a clear understanding of the brca mutations.

Morkies

Misspoke?

Maybe I misspoke because the bilateral prophylactic mastectomy would hopefully prevent any future breast cancers (increased risk due to the mutations on both genes), not cure me of ovarian cancer.  My asking the oncologists if he were going to cure me of ovarian cancer (9 chemos left) and his yes answer meant that I would consider the mastectomies because I would be alive.  Sorry for the confusion.

Scotti233

Morkies said:

Misspoke?

Maybe I misspoke because the bilateral prophylactic mastectomy would hopefully prevent any future breast cancers (increased risk due to the mutations on both genes), not cure me of ovarian cancer.  My asking the oncologists if he were going to cure me of ovarian cancer (9 chemos left) and his yes answer meant that I would consider the mastectomies because I would be alive.  Sorry for the confusion.

Confusion on comment

Thank you for clarifying!  I was was deeply concerned about your care:). In answer to your question about being worn down from chemo then having surgery.  I had a mastectomy and reconstruction at one time.  As I had a tram flap (take stomach fat to make boobs), I was sore in two places.  It does take a lot out of you, but it was not as painful as I anticipated.  I actually got off the prescription pain meds as soon as I got home (5 days in hospital) and just took Tylenol.  However, I was healthy and well rested.  I think if there is no evidence of breast cancer, and you are vigilant about MRI checks etc., I would give yourself sometime to recover from chemo.  If you scheduled surgery for January you would be ready to enjoy the summer.  I went back to work (on my feet) full time 12 weeks after surgery.  A year later my tram flap is still a little sore and my underarm area still feels a bit weird, but I am back to my usual activiities and feel happy not to worry about breast cancer again.

everyone is different.  You have to do what is right for you!  Do find the best plastic surgeon, one who specializes in breast reconstruction.  And the surgeon who removes your breasts should also be a Breast oncology surgeon.  You don't want someone who is a generalist for this type of surgery.

all the best for a healthy future,

scotti (a very cute cocker spaniel by the way) 

New Flower

I agree with your husband

Your husband has a good point. Mastectomy is a major surgery, you need to recover from Chemo, your doctors need to makes sure your labs are normal, including RBC and WBC , hemoglobin. You will better outcome and faster recovery if you give yourself a little break good luck and let us know

hward2007

Been there did that...

I was dx in 2008 with BRCA1, triple negative, stage 3/grade 3 Breast Cancer, within one year I had 4 kinds & 18 rounds of chemotherap, after the first 4 rounds of chem, I had my bilateral mysectomy and started reconstruction. Next I had 12 rounds of chemotherapy while having my expanders, expanded. Then I had my expanders taking out & implants put in, I went to my ob-gyn because my Ca125 was high & had my complete hysterectomy.

I Wish I would have taking more time off to rest from chemo and surgery. The Next few years were full of surgery and pain Drs, I have complete neuropathy of my bladder and CIPN that has never gotten better. All that to say take the time you need to heal and don't feel rushed by your drs, it never hurge to do extra research.

if your Cancer is out you have some time so take it, oncons, will try and rush you, don't let them.

 

May God bless you alway!