Need to ask.... Kind of long

Alikat123

Has there been anyone out there who dicovered post BC that they were BRCA+ more specifically BRCA2 and did not change their course of treatment for their first ( and so far only) BC?

My head is spinning because I keep thinking about my (quality of life) =QOL, and yes while most drs. want a "successful" outcome with (no evidence of disease)=NED  and adding years to lives  I don't think that they think about the QOL for most women especially those on the youngerish end of the spectum- I am 44-- that are premenopausal and what these preventive treatments then do to their lives, or give husbands a complete understanding of what that means... and yes I am writing about intimacy.  So for instance, if with this BRCA2 status that I have found to be after BC diagnosis. I am told to reduce my futher risk I need to do a PM, and/ or a oopharectomy or ovaian suppression through meds and using an AI or Tamox, What kind of "life" is that? You become like a neutered animal no desire no release and are in pain from SE from the meds.  And yes from what I can tell they ALL have SE of a sexual nature. How could they not? you are basically taking away a natural human function abruptly.  So instead of having say, 5-10 years of NED with no prevention other than surgery and rads and then it returning and  it being fatal, You then might have the chance of living into your 70's or 80's with NO LIFE at all but you're still "alive" but have not lived for 30 or 40 years... That's what the drs base the succcess on? I am really thinking about taking my chances.  Other people's expierences are welcome, maybe I am seeing this wrong but  from where I sit right now I really don't think so.  Thanks so much

MelissaDallas

I understand your concern, but I also find it kind of insulting your implication is that if we are 50 or so (just six years older than you are) and naturally menopausal that we have no sex life or any reason to live. At 44 most women are already in the beginnings of perimenopause already, whether they realize it or not

BayouBabe

Alikat123 - I totally understand your frustration and anger right now. Being BRCA+ sucks, but so does dying from cancer if you don't take preventative measures.



I was 44 at time of diagnosis. No premenopausal symptoms. I did not like being thrown into instant menopause from surgery (oopherectomy) and femara. But it is DOABLE! At the start my libido was very low. I realize now this was probably more from the stress of cancer and all it's gifts than anything else. Scream Cream is wonderful - do a search if you have not heard of it. Needed it a lot a first, now my body works much better on its own.



It looks from your signature that you were able to keep both of your nipples. This is a huge plus! I lost one, had nipple sparing on other (but no feeling). This has been the hardest part for me - hubby and I are working on finding more "turn on buttons".



Will your sex life be the same? Probably not. Could it be better? Absolutely! Patience and exploration can bring you closer together.



Let yourself be angry. I definitely had more than my share of those moments (and still do). But be reasonable and proactive. You CAN do this!

Alikat123

Melissadallas,

I am sorry I did not mean to imply that women over 50 are  washed-up dried up and no desire.... My frustration comes from dealing with drs. who seem so matter of fact, about treatment that they do not take the time to consider what it means long term as life AFTER cancer....

Alikat123

Bayoubabe,

Thank you for your advice, I know we have connected a few times on this board, and you know part of my story comes from dealing with a less than ideal MO. I am changing drs.  I have so many questions like is now a BMX absolutely ncessary with BRCA2?  I had testing done AFTER surgery, onco was NOT expecting a positive result... So as far as surgery, we treated this as a lumpectomy, I am strongly ER/PR+ and was going with Lupron/femara combo as Tamox was contraindicated in my case so I was already trying to come to grips with being put into chemical meno than BRCA reared it's ugly head. So doing a salpingo-ooph may help alot?  My MO nurse- was like - the report says you are at high risk for BC, Well DUH I already have it, so does that mean with the BRCA status it means it will keep coming back as new primaries if I don't take my breast off or does it mean If can get even MORE close screenings, and be fine? The problem is, there are differences between BRCA 1 and 2 and they kind of lump them together.

And my MO did use the word deliterious and abnormal  (he never said postitive) but I think that means that is the worst kind to have??

Thanks,

Alicia

BayouBabe

Alicia - did you see a genetic counselor? I found they did a much better job of explaining BRCA information than my MO. Also, the report you received should list in the fine print on the bottom what your percentages/ risks are.



The way I understand it, deleterious and abnormal does not mean it is the worst kind, just still not good. My counselor described it like this. Think of your genes as a book. The first part of the test searches for "rearranged chapters". The second part searches for chapters that are "deleterious", or missing. My mutation is of this type as well.



I'll admit, I don't know much about BRCA2. I have been learning all I can about BRCA 1, as I am scared to death of having passed it on to my two preteens. I believe, however, that for BRCA2, your risk for breast cancer is lower than mine. Thus, maybe extra surveillance would be good, except for the fact that you already know your body likes to make cancer.



As far as the oopherectomy, you are strongly er/pr+, as am I. For me it just made sense to take away the "food source" as thoroughly as I could. No estrogen from ovaries, plus an AI, greatly increases my odds of seeing my children grow up. None of these decisions are easy. I am so sorry you are having to deal with this as well.



Let me know if you want to discuss any other part of this. I have been open and honest with anyone who asks about any part of my journey. Hope in some small way it can help others. One day it could be my kids on these boards. But, I am so hoping in ten years that the "cancer world" will be totally different, and their path will be so much easier. That is my wish and dream.

slickchickie17

Alicia, I believe the word deleterious just signifies that a mutation is present. I agree with BayouBabe, speaking to a genetic counselor would be helpful for you. I know you want to do the least invasive options, but as far as longevity is concerned, that is not ideal for BRCA+ chickies like us. The ovaries have to go-- they don't call ovarian cancer the silent killer for nothing! What you should consider regarding your breasts is this-- if you choose screening instead of bilateral mastectomy, you are leaving yourself at high risk. Even with screening, if you don't find it extremely early you risk lymph node involvement & even mets. Which means chemo, rads & a poorer prognosis. I had neoadjuvant chemo, am awaiting my first surgery, then rads. That's just the beginning of a long, long road of surgeries & treatments. Do whatever you can to make your journey shorter, your road smoother, your life longer!

slickchickie17

Alicia, I forgot to mention that I am 33 yrs old & single, no kids. I was, until my dx, actively dating & was a known man-eater;) I didn't want you to think that I can't relate to your concerns. I can totally relate.

Alikat123

BayouBabe,

Yes I am seeing a genetics counselor in a week or so.  Thank you for your support on this I really appreciate it! I too want to be open and honest about my journey, if it can help someone else.  I have not seen my report yet.

I will keep you updated.

Alicia

Alikat123

Slickchickie17,

Thanks for you input, and I am so sorry your jouney, seems like a longer road than mine.  And at 33 I am sure you were even more shocked, than I was at 44.   And yes I am sure you understand if you were actively dating. I am speaking with a genetics counselor next week.

Alicia