BRCA +.....now what?

minnowline · August 2009

Hi all, I'm new here. Just found the site while searching for some info. I received the results of my genetic testing yesterday....I'm BRCA 2 +, just like my birth mother, and apparently her mother too. My grandmother died before she was 40....my birth mom had her first bout of breast cancer before 40, and a second bout in her late 50's. Now me. Still cancer-free, but I'm 43. I feel like a ticking time bomb has been strapped to me. Quite frankly, the ovarian cancer scares me more than breast cancer. After a appt. with a genetics DR yesterday, I'm thinking of having my ovaries removed.....I'm done with them. ( no kids, just horses & cats). I I'll get my breast screened more often also. I'm not sick now, and I don't want to be if I can help it!!

How many of you out there like me had the ovaries removed....did you get a complete hystorectomy?.....or just the ooph?.... what about breasts? ......do people usually get better screening then have the complete mx if a problem shows up?

At first the DR suggested complete hystorectomy, but I'm not so sure about 6 weeks of off work, down time.....I'd loose my mind!! I work in an idustrial setting...I'm a women doing a man's job, and sometimes its hard work, shift work, turning valves and dragging other assorted equipment around, so I worry about even after healing.....will I be the same? I have to be able to do my job....I am the major bread earner in the family so I must be able to do my job.

...sorry for all the questions....I new at this and was excited to find this forum.....

Thanks for all help that comes my way.

smirks44 · August 2009

Hiya!

I am BRCA2+ as well, and have not had cancer.

I had ooph instead of hysterectomy. There are lots of varying opinions out there about which is best....I decided that my uterus was not causing me any trouble, so I would just leave it there and have the easier surgery. The ooph was a quick surgery (day surgery) and a fairly easy recovery (a week or so). I am taking HRT.....one reason some women choose to have the full hysterectomy is that if you are taking hormones and you still have your uterus you need to take both estrogen and progesterone. If you remove the uterus you can take estrogen only, without needing the progesterone. I have not had any major side effects from the ooph....a few hot flashes, but nothing unbearable or life altering!

The mastectomy question is a very personal one, and only you will know what is right for you. When I first learned that I was BRCA2+ I was sure that I would not consider a prophylactic mastectomy, and would only have that surgery if cancer was discovered. After living with high surveillance for a very short period of time, I decided that the stress of "waiting for cancer" was too high for me, and I proceeded with mastectomy and reconstruction last fall.

If you have not already checked it out, you should visit www.facingourrisk.org

This site is full of great information about hereditary cancer, and the message boards there are full of women who are BRCA+.....on the main forum you will find lots of discussions on a variety of related issues, and many women there have had prophylactic surgeries. There is also a surveillance forum specifically geared to women who are choosing not to have surgery at this time.

Hope that helps a bit!

ElaineD · August 2009

I'm also BRCA2-had a full hysterectomy, and the second breast removed (I had had primary b.c. at age 40). Sadly this was not enough to stop a recurrence, and I now have mets to the pleura, liver and bones (even preventitive surgery cannot remove the risk completely).

As your gran and Mum were both diagnosed in their 40s, and you are now 43, it could be that you won't go on to develop the disease (not all carriers do). The onset tends to be up to 10 years before the age of your Mum-and you are well past that.For example, I was 40, my Mum was first diagnosed aged 48. I know that neither of these points may make your decisions any easier, but they're both worth keeping in mind.

smithlme · August 2009

Minnowline,

Please see the web site www.facingourrisk.org. It is a web site dedicated to BRCA 1 & 2, breast and ovarian genetic cancers. My oldest sister and I are both BRCA 2+. My sister had breast cancer at 36 and will be a 20 year survivor in September. She had a uni-lateral mastectomy, followed by 30 weeks of chemo. A year later she had double TRAM reconstruction with a prophylactic mastectomy on the other side. After finding out that she is BRCA 2+, she had a hysterectomy w/BSO this past December.

I have had breast cancer, twice, within 369 days of each other. I had a uni-lateral mastectomy followed by DD AC & Taxol. After a failed TRAM, I was diagnosed the second time. I chose to have another mastectomy and genetic testing. After finding out that I am BRCA 2+ I had a hysterectomy w/BSO, everything removed. I feel that I can't trust my body and I am trying to stay one step ahead of this beast.

After dealing with two mastectomies and a failed TRAM, the hysterectomy was the easy part! I was on my treadmill after 4 weeks and back to my active, hectic life and work.

Linda

minnowline · August 2009

Thanks everyone! The suggestions for the links to other sites helps. This info is all still so fresh for me, I didn't quite know what to do. I see my local Dr on Aug 31....and I will be telling him I want to schedule an ooph for this winter. My birth mom had one as soon as she got her genetic results earlier this spring. I see from reading that that seems to be the first step a lot of women in my position take. I do want to stay pro-active on this....I feel as if I've been given at least a chance by finding out I'm BRCA2+ before I have any problems.....

Its comforting to be able to ask these questions from ladies who have been there , done that....I live in the middle of nowhere Ontario, and have to travel to see my Dr and have any procedures or my checkups.....nice to have a place like this I can ask questions as they pop into my head instead of stressing out and waiting to ask the Dr.

Thank you, Thank you , Thank you.....

Cathy

smirks44 · August 2009

I am in Ontario as well......I live near Toronto. Do you happen to live within travelling distance of Toronto? If so, you may be interested in a support group for BRCA+ women that is held at Willow.........

minnowline · August 2009

Thanks for the offer, but I live a looonnnggg way from Toronto. I'm in NWOnt, near Thunder Bay, but I will look up to see if there are any support groups in TBay....thanks!

Anonymous · August 2009

Hi minnowline

Welcome to these boards. You will find a wealth of information and support here. I am also from NW Ontario, specifically Thunder Bay.

Did you have your genetic testing done here in Thunder Bay, if so I am curious how long it took for you to get the results of the genetics testing? Although I don't have any immdiate family history of breast cancer I have recently been diagnosed with LCIS and the oncologist has referred me for the genetics testing. I have heard it can take a long time to get the results. I am also waiting for an appointment to see a surgeon in Toronto for a 2nd opinion on LCIS and a latest finding on a MRI.

Take Care

Cathy

minnowline · August 2009

Hi there in TBay! Yes I had my genetic testing done through TBay. I actually live in Atikokan, so two ladies that do genetic counselling came right to Atikokan to see me. They left me with the whole package I needed to have the blood work done. I just went to the blood lab at the hospital right here in town and had my blood drawn. It maybe took 6 weeks for results. I was then set up with a tele-health video conferance with a genetics Dr. from Toronto.

There is history in my family. My birth mother was diagnosed with the BRCA 2 mutation, so I was told when there's history, it doesn't take as long for the test results as they know what there looking for......that's what I was told, not sure if that's why it didn't take long for my results. My 2 uncles were also tested and there results didn't take long either.

I see a Dr in TBay on Mon, so I guess I'm just waiting till then to see what the next step I should take. The genetics Dr said I might get sent for a baseline MRI as I'm healthy at the moment. Is there any type of support groups in TBay? Thanks for letting me know I'm not alone up here in the North.

Cathy

kt57 · September 2009

Cathy; I am on the couch recovering from having my ovaries removed yesterday. Outpatient - in at 6 AM home by noon... soreness and tired from anesthesia. No big deal - have had menstrual cramps worse than this. As i understand having the ovaries out decreases bc risk by 50%...esp in pre-menopausal women. So it is a wise choice for us BRCA2 positive ladies. It also decreases ovarian cancer risk by 90-95% -- esp good, as surveillance for oc is more difficult.

You can see from my signature line I had early bc - did chemo/rads and am on hormone blockers too. My med onc believes I am safe for now with the treatment I have had. I am comfortable with breast surveillance for now. My risk is about 50%.. ao I am doing everything I can to be in the 50% that doesn;t get bc again...eating well, getting back to exercise and decreasing as much stress as I can.

Hugs to you as you make your choices..

Lemur · September 2009

Hi all,

I'm 43 and just found out I'm BRCA2+ a month ago. BTW smirks44 I'm in Toronto too and probably going to the Willow thing on th 23rd. I'm planning on having just a mastectomy (I figure I'd rather just lose some superficial tissue and hope to buy some time while my ovaries still have a job to do hormonally) but trying to decide on the reconstruction technique that would least impact my longtrm physical ability. I'm a dancer and do some acrobatics as well and a complete return to full physical activity without strength loss is really important to me. Its more important than the cosmetic result so, if none of the reconstruction techniques are acceptable I may end up opting not to do it , getting reacquainted with my ribcage, and wearing a padded bra.

Since that would bring my breast cancer risk down to below that of the general population I'd be hoping I can gamble on waiting anothr ten years to have the reproductive equipment out so I can go through menopause naturally. The impact of surgical menopause on what might be the best ten dancing years I have left is something I'm worried about.

If anyone here can tell me about how mastectomy and reconstuction impacted their physical ability , what the rehab was like , whether they regained full strength in any affected muscle etc. I'd be grateful for more info.

Also, if anyone has xperience of surgically induced menopause, I'm curious aboout that too.

Best Wishes ,

Katja

smirks44 · September 2009

Hiya Lemur! I'll see you on the 23rd!!! I have an implant on one side and a TUG flap on the other. The implant is under the pec muscle....it feels a bit weird at times, but has not affected muscle strength in any way. The TUG flap uses the gracilis muscle, but I was reassured that this was not a muscle I would miss.....and I haven't!! DIEP flaps also use no muscle. Going flat is also a valid option, and you may meet a couple of women at Willow who have made that choice as well!!! Looking forward to meeting you.....

Daudine · September 2009

I am like you. BRCA1 positive and no cancer. I had my ovaries and breasts removed last year at 37. Go and do it!

HeatherLL · September 2009

I'm BRCA!+ also. A previvor, I am 34yrs old now. I had my ooph at age 19 and just had my bilateral nipple sparing/skin sparing mastectomy with reconstruction last month (Aug 10th). GO FOR IT! It is hard, very hard, gut-wrenching hard at times, but my life is worth it and so is yours! I'm a mother of two, almost three now. Both our children are adopted from S. Korea and we are in the process of adopting baby #3 right now.

I just had the bilateral mastectomy last month as I said so I'm still in the middle of healing. I have not regained full strength of my chest muscles and I think it will still be some time before I do, although I really don't know how long it will take. The nipple sparing mast. did not work for me. Both of my nipples were burned, blistered over and the skin died. YUCK is all I have to say! I've got big huge ugly black-as-night scabs. So I have to have nipple recon. in Dec + to finish the rest of my breast reconstruction as well. I do triathlons in the summer months and had to cancel my events this year. So bummed! I know it is going to take a while to get back to how things were before. My muscles just don't work how they did before, implants under of course. They are still sore to the touch, bruised feeling. Though not as deeply bruised as a couple weeks ago.

If anyone has any Q's, please feel free to msg me directly.

Shappy · September 2009

I'm reading a very good book on the topic called "Blood Matters." author Masha Gessen. I picked it up at my public library, it's new non-fiction.

Very thoughtful and insightful on what to do with BRCA+. Think this might help you.

minnowline · September 2009

So much to think about.....I finally have an appt. with a Dr at the Cancer Centre in TBay. I'm hoping this Dr. will be able to answer all my questions. I have decided I'm going to tell her I want my ovaries out. I think that is the best thing for me at this time. I healing time is easy and it does reduce a lot of risk. Yes, I'm worried that the surgical menapause will make me feel old-before-my -time.....but I think it will be easier for me to manage than to choose a mastectomy right now. My job requires a lot of strengh and I'm not ready to be off work healing for months and months. If I HAD too....yeah, but to choose.....I think an ooph is better for me now.

Reading Heather say her chest muscles didn't work like they used to kinda scared me....I have horses to take care of, and I'm the main wage earner so I don't feel like I can afford to take off 6 months to heal. Who would take care of my horses? They live here at home with me in the middle of nowhere.....hubby already looks after them when I'm at work 12 hrs....16 with the commute.

I worry that I won't be the same....that somehow all this will change or age me overnight. I do realize that is probably irrational thinking, but I can't help it. I spent a couple years battle a bad thyroid problem.....that's been under control now for almost 10 yrs....and I said I never wanted to feel that sick or helpless again.....yet here I am.....I feel better at 43 than I've felt in years. How can I decide to do something that is going to bring on all the helpless feelings again....the tiredness and depression are something I battled long and hard with during my undiagnosed throid problems....I'm having a hard time deciding to go there again.

I really appreicate everyones comments....its nice to know I'm not alone!! Thanks!

Cathy

Daudine · September 2009

For my part, the menopause is harder then the mastectmy.......

HeatherLL · September 2009

In response to Daudine's post, I'm thinking she's right on the mark with that comment. I don't have much hindsight with the aftermath of the bilateral mastectomies. But I had my ooph in 1995 when I was 19. Being post-menopausal 15yrs now. . . .whew. . . it's a hard one. Menopause symptoms just keep on coming, keep on changing as you get older. At first it's just dealing with different levels of HRT and finding what works for you. Then you deal with ALL the other menopause symptoms. Then it changes your body, slower metabolism.... sexual issues due to dryness etc. etc. etc. It's been 7 wks since my mastect & I'm back to running & lifting & leading my good old life again. I'm not saying everything is all normal and like it was before, but. . . . . ..

mrs_noriega · September 2009

Hi Ladies. I am 35 and BRCA2+. My sister was diagnosed stage 2 in Dec '08 and did genetic testing as our Mom died at 37. We are both carriers. Her ordeal put the idea of double mastectomy in my mind months before my test, so when my results came back, we were prepared to make the decision. Because of my age, I was very worried about removing my ovaries. I don't want more children, but I don't want to go through menopause this early. Thankfully, our surgeon was very understanding with this and we told him that while we aren't taking the ooph off the table, we aren't "there" yet. I have a lot more research to do to prepare myself for that ordeal. I did my double mastectomy 11 days ago. I'm just glad that we are doing this on our terms and not because of a diagnosis. It gives us a sense of power. Good luck with your decision!!

minnowline · September 2009

Thanks to all for ypur thoughts and for sharing your experience. It gives me more things to ask the Dr. at the cancer centre I've been refered too. My birth Mom was dx first time with bc in her late 30's and went through meno due to the chemo. When I questioned her about it, she said the meno symptoms she experienced where mild.....not a big deal at all for her she said. She had a lumpectomy back then. It wasn't until in her late 50's she had a re-occruance. This time, they removed the breast....then she got the results of the genetic testing.....and had a ooph immediately. Had she known, she would have had both breast removed too, but didn't get the BRCA 2+ results until after rebuild.

....so, I'm thinking that somehow for me that the early meno might not be so bad for me. I'm 43 now, and I think I'm peri-meno anyway.....the sweats, the sleep issues, and other assorted symptoms. I just went for my usual ultrasounds I've been getting for a couple years now, but my ususal Dr there was MIA.....I think I'll be needing a referall to a new obgyn.....I'm hoping the Dr at the Cancer Centre will refer me to somone better with the knowledge I now have. So, needless to say, I didn't get my Ultra sound results the same day like I used to. I wanted to ask for a test of my estrogen levels....just to see whats going on.

....I can't imagine being down for 7-8 weeks right now!!! After 20 yrs of turning valves at my job, my upper body is solid muscle....I don't fill out a 36 A bra.....I'd be concave!!! YIKES!! My life depends on my upper body strength.....I lift 40-50lb bales of hay and my saddles weigh 35lbs and I lift wheelbarrow's full of poop on a daily basis. I'm on an emerg response team at work, I sling fire hose and air packs around somtimes. I'd be useless at work and get stuck behind a desk with a bunch of paper/computer work....somehow, memopause looks better all the time......I realize that with a bc dx this will all come anyway, but for now......I just don't know if I'm ready for all that.

I really appreciate reading everyones experience at this.....it helps knowing I'm not alone.

Cathy

BRCA +.....now what?

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