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.

Alexandra

Dear Morkies.

I am very sorry about your OvCa diagnosis and BRCA1/2+ adding insult to injury. Once you finish chemo you basically have 3 options: preventative mastectomy with or without reconstruction OR active high-risk surveillance (bi-annual breast exams, mammo, ultrasound, breast MRI) OR doing nothing. It is your decision and you have to do what's right for you. However if you decide on BMX, I would recommend waiting for at least a few months after finishing chemo to let your body heal and to minimize surgical complications, but not long enough to run into the potential OvCa recurrence. May-June 2014 would be a good compromise.

There are at least 3 women on this board who in this situation chose mastectomy. I didn't. Diagnosed with OvCa 3C in May 2012, tested BRCA1+ a month later, had hysterectomy and 7 rounds of chemo. My oncologist advised against mastectomy and even against surveillance. Her position was: women with ovarian cancer don't die of breast cancer, so why get additional stress. I figured that at my age (45) without ovaries I have about 45% breast cancer risk and decided on active breast surveillance. For a year my breast MRI were clear until 1 month ago. I had bilateral breast biopsy on Monday and am now waiting for results. My money is on 3neg ductal carcinoma, but I will know for sure next week. In the meantime after 10 months' remission OvCa recurred. "Curing" advanced stage ovarian cancer is a pretty miraculous undertaking, I would like to meet your doctor. 

Good luck finishing your chemo. Stay well! Love your puppies!

Alexandra

azgrandma

Alexandra said:

Dear Morkies.

I am very sorry about your OvCa diagnosis and BRCA1/2+ adding insult to injury. Once you finish chemo you basically have 3 options: preventative mastectomy with or without reconstruction OR active high-risk surveillance (bi-annual breast exams, mammo, ultrasound, breast MRI) OR doing nothing. It is your decision and you have to do what's right for you. However if you decide on BMX, I would recommend waiting for at least a few months after finishing chemo to let your body heal and to minimize surgical complications, but not long enough to run into the potential OvCa recurrence. May-June 2014 would be a good compromise.

There are at least 3 women on this board who in this situation chose mastectomy. I didn't. Diagnosed with OvCa 3C in May 2012, tested BRCA1+ a month later, had hysterectomy and 7 rounds of chemo. My oncologist advised against mastectomy and even against surveillance. Her position was: women with ovarian cancer don't die of breast cancer, so why get additional stress. I figured that at my age (45) without ovaries I have about 45% breast cancer risk and decided on active breast surveillance. For a year my breast MRI were clear until 1 month ago. I had bilateral breast biopsy on Monday and am now waiting for results. My money is on 3neg ductal carcinoma, but I will know for sure next week. In the meantime after 10 months' remission OvCa recurred. "Curing" advanced stage ovarian cancer is a pretty miraculous undertaking, I would like to meet your doctor. 

Good luck finishing your chemo. Stay well! Love your puppies!

Alexandra

Hello

I definately would not put off any chemo, it gives the beast a chance to come back, please finish yoru chemo and the best of luck to you hon

scatsm

Welcome Morkies

Sorry you have to be here, but glad you've posted...this a wonderful group of women who have experienced it all. That said, everyone has to do what is right for herself.

I was diagnosed with 3C ovarian in August 2011, had 4 rounds of taxol/carbo, then a total abdominal hysterectomy followed by 4 more rounds of chemo. Declared NED in March 2012, I was already aware of my BRCA2 status and started a close surveillance breast program. In September of 2012, at my first breast MRI,  they found triple positive IDC. Because my chemo was so recent I didn't need additional chemo but had this been diagnosed either earlier or later, I would have had to because of the Her2neu status. So, in my case, I was lucky (if getting both cancers can be considered lucky!) to be able to avoid a second course of chemo.

I can tell you that the breast surgery was a cakewalk compared to the abdominal surgery.  In my case I already had the breast cancer so the decision to have bilateral mastectomies was easy. My sister, also BRCA2, chose to do both surgeries prophylactically and hasn't looked back. She had reconstruction which made everything a bit harder, but she is comfortable with her new boobs. I didn't have reconstruction and haven't looked back either. I'm 62, divorced and felt that with the 3C ovarian cancer, I wanted to enjoy every moment of my remission. Reconstruction involves multiple surgeries and I didn't know prior to the BMX exactly what I would have to do treatment-wise.

 

I wish you all the best. Know that there is no one right answer.  Come back often to let us know how you are doing!

Susan

.

Morkies

Alexandra said:

Dear Morkies.

I am very sorry about your OvCa diagnosis and BRCA1/2+ adding insult to injury. Once you finish chemo you basically have 3 options: preventative mastectomy with or without reconstruction OR active high-risk surveillance (bi-annual breast exams, mammo, ultrasound, breast MRI) OR doing nothing. It is your decision and you have to do what's right for you. However if you decide on BMX, I would recommend waiting for at least a few months after finishing chemo to let your body heal and to minimize surgical complications, but not long enough to run into the potential OvCa recurrence. May-June 2014 would be a good compromise.

There are at least 3 women on this board who in this situation chose mastectomy. I didn't. Diagnosed with OvCa 3C in May 2012, tested BRCA1+ a month later, had hysterectomy and 7 rounds of chemo. My oncologist advised against mastectomy and even against surveillance. Her position was: women with ovarian cancer don't die of breast cancer, so why get additional stress. I figured that at my age (45) without ovaries I have about 45% breast cancer risk and decided on active breast surveillance. For a year my breast MRI were clear until 1 month ago. I had bilateral breast biopsy on Monday and am now waiting for results. My money is on 3neg ductal carcinoma, but I will know for sure next week. In the meantime after 10 months' remission OvCa recurred. "Curing" advanced stage ovarian cancer is a pretty miraculous undertaking, I would like to meet your doctor. 

Good luck finishing your chemo. Stay well! Love your puppies!

Alexandra

Thank you

Alexandra

I appreciate your response and sage advice; I now plan on having my breast surgeon list the pros and cons of the three options you outlined.  If I choose surgery, and I do understand the rationale you cited of waiting several months, I'm not sure that I could emotionally deal with everyday life while knowing what awaited me.     

I am truly sorry that the ovarian cancer has recurred.  Were you taking the parp inhibitor after chemo?  Are carbo/taxol recommended for recurrence?  I know what mental torture it is to wait for breast biopsy results, but hopefully you will lose your bet. 

My oncologist is young, idealistic, and knowledgeable.  It was my choice to have dose dense chemo, but he researched it and consulted other doctors before agreeing.  He also wants me to take the parp inhibitor after chemo - it’s supposed to be a maintenance drug like tamoxifen is for breast cancer.  His opinion is that I should have the surgery and that's when I asked if he were going to cure me because if he didn't, the surgery would be moot. 

My thoughts and wishes will be with you,

Linda

 

Morkies

scatsm said:

Welcome Morkies

Sorry you have to be here, but glad you've posted...this a wonderful group of women who have experienced it all. That said, everyone has to do what is right for herself.

I was diagnosed with 3C ovarian in August 2011, had 4 rounds of taxol/carbo, then a total abdominal hysterectomy followed by 4 more rounds of chemo. Declared NED in March 2012, I was already aware of my BRCA2 status and started a close surveillance breast program. In September of 2012, at my first breast MRI,  they found triple positive IDC. Because my chemo was so recent I didn't need additional chemo but had this been diagnosed either earlier or later, I would have had to because of the Her2neu status. So, in my case, I was lucky (if getting both cancers can be considered lucky!) to be able to avoid a second course of chemo.

I can tell you that the breast surgery was a cakewalk compared to the abdominal surgery.  In my case I already had the breast cancer so the decision to have bilateral mastectomies was easy. My sister, also BRCA2, chose to do both surgeries prophylactically and hasn't looked back. She had reconstruction which made everything a bit harder, but she is comfortable with her new boobs. I didn't have reconstruction and haven't looked back either. I'm 62, divorced and felt that with the 3C ovarian cancer, I wanted to enjoy every moment of my remission. Reconstruction involves multiple surgeries and I didn't know prior to the BMX exactly what I would have to do treatment-wise.

 

I wish you all the best. Know that there is no one right answer.  Come back often to let us know how you are doing!

Susan

.

Thank you

Susan,

I really appreciate your opinion on hysterectomy versus mastectomy; I have to admit that after a nine-day hospital stay for the hysterectomy, it's one of my fears.  I meet with my breast cancer surgeon (been with him since 1999 so I trust him) at the end of October and will have many questions.  One reason that I'm leaning towards surgery is that I'm afraid if I choose surveillance, cancer would be discovered (BRCA1 & 2) and I'd have to undergo surgery and then chemo again.  Understanding your point about wanting to enjoy remission makes my decision more difficult though.  I just want to feel well for awhile and enjoy life, but I don't think I could enjoy anything or emotionally cope if I knew surgery was just a couple of months away.  

Thanks for the encouragement and making me feel welcome,

Linda

Alexandra

Morkies said:

Thank you

Alexandra

I appreciate your response and sage advice; I now plan on having my breast surgeon list the pros and cons of the three options you outlined.  If I choose surgery, and I do understand the rationale you cited of waiting several months, I'm not sure that I could emotionally deal with everyday life while knowing what awaited me.     

I am truly sorry that the ovarian cancer has recurred.  Were you taking the parp inhibitor after chemo?  Are carbo/taxol recommended for recurrence?  I know what mental torture it is to wait for breast biopsy results, but hopefully you will lose your bet. 

My oncologist is young, idealistic, and knowledgeable.  It was my choice to have dose dense chemo, but he researched it and consulted other doctors before agreeing.  He also wants me to take the parp inhibitor after chemo - it’s supposed to be a maintenance drug like tamoxifen is for breast cancer.  His opinion is that I should have the surgery and that's when I asked if he were going to cure me because if he didn't, the surgery would be moot. 

My thoughts and wishes will be with you,

Linda

 

Hello again Linda and thank you for your kind wishes

I get what you're saying about the emotional toll of waiting for surgery. However after mastectomy and especially if you choose reconstruction, your incisions will heal better if you wait a few months after chemo. Having said that I didn't feel like waiting either and had elective plastic surgery (tummy tuck) 6 weeks after finishing chemo. Just because I wanted it done.

You could consult 20 different doctors and forums, and everyone will have an opinion; but ultimately the decision it yours. Can you mentally take the uncertainty of breast cancer coming back in the future and not drive yourself crazy before every MRI and blame yourself if it comes back (choose surveillance) or do you want it dealt with now even if it means another surgery and recovery (choose BMX)? Answer this question and don't look back.

BMX is not moot even if your OvCa is not "cured", but simply in remission. Remissions could last for years; there are many women on this board who prove that. Statistics are only helpful when looking at the whole population of patients. They are meaningless for an individual. There is really no way of knowing, for you or for your oncologist. He sounds nice in trying to keep your spirits up. If you're an optimist by nature, think positive, hope for the best, try not to dwell on it and move on with your life.

I was not taking PARP inhibitor for maintenance after chemo. The drug is not yet available outside of trials. The window to enter the trial is up to 6-8 weeks after finishing chemo. I did not know about the trial until it was too late. If you have an opportunity to enroll in Olaparib or Niraparib maintenance trial - take it. It's shown to prolong PFS (progression-free survival) and OS (overall survival), especially for BRCA1/2+ patients, and it has minimal side effects. I was taking Metformin, but apparently that didn't work.

Chemo used for recurrence depends on if you're platinum-sensitive or -resistant, physician's choice, availability and patient's requests. In my case I'm platinum-sensitive and I don't want to repeat Taxol and dread Doxil. I'm in Canada and my access to trials is not as broad as in US. Avastin is not yet available in Canada. I can't enter cancer vaccine trial, because my tumor tissue was not preserved. I asked for 4 rounds of Carboplatin (4 is the minimum required to enter Olaparib trial). That has not yet been confirmed pending the results of breast biopsy. If breast cancer turns out invasive, it will screw up my options of getting into any trials. Sucks to be me...

scatsm

I was in the hospital for only 1 night for the BMX

Compared to a week for the hysterectomy. I could shower, move around and even take walks by the second day. We teal sisters are tough, so the breast surgery really is easier....the drains are uncomfortable after a while, I will say, but that was nothing compared to getting up out of a chair after TAH! I went back to work part time after 10 days. It took me 6 weeks after the TAH.

I understand your dilemma, though...I waited 3 months to have the breast surgery to go on a planned family vacation with no regrets. I was somehow able to go into denial mode and not think about it til just before the surgery.  When I said I wanted to enjoy my remission, I was referring to the decision whether or not to have reconstruction which involves multiple surgeries. 

I think you will be ok no matter which path you follow!!

Susan