Newly diagnosed LCIS and lookin' for love (wait, wrong forum...)

614

Dear Boobymcferrin:

Good luck with the angst while waiting.  That is almost the worst part.  I wish you the best.

614

Dear MrsGreenJeans:

I hope that you get your path report/results 1st thing tomorrow morning.  The waiting is the hardest part as your post states.  You made me laugh.  Thanks.  Good luck.

614

All of the posts on this thread have been informative and helpful.  Sorry though, that everyone has had to deal with bc.  Thanks to everyone here for the posts.

leaf

My breast MRI was totally normal, and I'd much rather have a million breast MRIs than bracketing for microcalcifications before my surgical excision in 2006. My gyn took blood (and gave me a full 2 minutes to remember my full family history complete with ages, so it surely wasn't very accurate!) and sent it to one gene company. Previous to this, I got a letter from my insurance company saying I was OKed to see a genetics counselor. The genetics counselor had me fill out a complete family history several days beforehand (so I had time to find out the birth dates, etc of many of my relatives).

Interestingly, my genetics counselor said that even if you might have Ashkenazi Jewish heritage way, way, way back (i.e. my great- great- (I don't know how many great-) grandmother) they still want to find out BRCA if you have any breast/ovarian cancer in your family. My genetics counselor said even the breast breast cancer of my cousins counted (one was pre-menopausal; she looked up the guidelines.) The genetics counselor sent my blood to a different gene company, so when I saw my gyn, she had to cancel the submission for my first blood draw. So, if this happens to you, don't get confused.

I'd sure recommend going to a genetics counselor. (Mine was at my local hospital affiliate, not at the nearby major cancer center. And she is both licensed and certified. And is skilled at counseling!)

I think its pretty unlikely that I have a BRCA mutation:

Q.How common are BRCA mutations in the general population

Experts estimate that 1 out of every 300 - 500 people carries a BRCA mutation. BRCA mutations are more common in people of certain ethnic backgrounds, however, mutations have been found in people of every ethnicity. Experts believe that among people of Ashkenazi (Eastern European) Jewish descent, that 1 out of every 40 people carries a BRCA mutation. http://www.facingourrisk.org/understanding-brca-an...

In the unlikely event I am BRCA positive, my genetics counselor said I could go to a different breast surgeon! (Woo-hoo!) (While my breast surgeon in 2006 was technically excellent, her first words to me when she walked in the door was 'If you want bilateral mastectomies, I'm going to fall down in my chair.' Now, in my opinion, if she is of the professional opinion that plain vanilla classic LCIS women should not get bilateral mastectomies (whether or not you may agree), in my opinion this is NOT an OK statement to make under the circumstances: she had not yet asked me about my family history. So I'm glad that if I want to explore other surgical options, I can, at least if I'm BRCA positive. )

boobymcferrin

Hi guys,

Thanks for all the advice/input/info. Such a helpful bunch!

The reason I would consider bilateral mastectomy is more because the waiting IS the hardest part...and picturing waiting like this AT LEAST twice a year (and that's only if no biopsies), every year, for the next fifty years....yikes. Maybe I'll eventually get better at tuning it out and not worrying so much while waiting for results, but right now that sounds really grim to me.

Anonymous

Leaf----congrats on the normal MRI !!! I see you are going for genetic testing as well (I go in mid-Sept). My old oncologist always felt I was probably BRCA negative (and I think he's probably right), but my 2nd oncologist and now my present one keep recommending it, and insurance has approved it, so I'm going to have it done The way I look at it, if it is negative, nothing drastic really changes for me, my risk doesn't increase, but still remains high, and I will continue with my meds and high risk surveillance. But if it is positive, then it is a real game changer. Then I would be looking at having the PBM surgery and reconstruction, and then it would directly affect my family members (daughter, 2 sisters, mom); both scenarios which I dread. Keep in touch, praying we both get good negative results!

Anne

MrsGreenJeans

Hey all, hope everyone is hanging in there. I finally got my MRI results, although they came in the mail from the MRI facility a day before the doctor's office got back to me. They should have gotten my results on Monday, and after two calls from me did not give them to me until Friday. There are several things about the doctor's office that I am unhappy with, so I will probably look for another oncologist. Very frustrating.

The MRI results showed nothing that appeared malignant. However, there were three non-mass enhancements that could not be identified. Recommendation was for a follow up MRI in six months.

I still plan on having PBMX, so have scheduled appointments with a BS and a PS. I am also considering genetic counseling/testing. I tested for BRCA 5 years ago when my sister was diagnosed with BC, and it was negative. Oncologist did suggest additional testing as there is a lot of cancer in my family history. BS can't see me until 10/6, so back in waiting mode. At least there is no apparent need for immediate attention.

Just hoping to get as much done as possible before year's end since I have met my deductible.

Keeping positive thoughts for everyone!!!

Laleesa

your story is my story! I had a fibroadenoma for over five years I had four needle biopsies all benign. My vanity is what prompted me to get the lumpectomy. My breasts became two different sizes! Mine was 3.0x2.0x1.8. There was an area of LCIS that was exclusively within the fibroadenoma. I had my lumpectomy 2/9 my mri will be 4/2. It’s cutting it close but I want the pbmx with implants. I will be 43 in May I ha have four children I no longer need my breasts as my breast feeding days are over. Even without pbmx there still may be cancer so may need tomoxifin anyway if that’s the case. I too want to avoid it because I get migraines and have very poor circulation strokes and dvt are big risks but if I have no choice after surgery I will