I'd appreciate your input on bilat mast

I was not diagnosed with a new primary but I wanted to say that when I was diagnosed in the right breast and they found calcifications in the left, that they weren't worried about right now, I didn't want to do the watchful waiting and opted for the bilateral. I also would have had to have a reduction on the left side and there was only so much surgery I could handle. You have to do what you feel comfortable with but I wanted to put this behind me as quickly as possible and didn't want to have to wait for the other shoe to drop.

Good luck with your decision.

Margaret

Hi I had Lumpectomy 1st time 10 yrs ago and a last yr when dx on other side went for lumpectomy again, however had to go back for a mastectomy as they couldn't get clear margins and there was DCIS as well as IDC. 1 year on am now paranoid about the original side and am going to talk to surgeon when I see him tomorrow about having it removed and then having a bilateral reconstruction.

Good luck with your decision making. What ever you choose be true to yourself.

My concern about the "watchful waiting" approach would be the fact that Lobular cancer is so darn difficult to detect. You are fortunate that yours was found at an early stage with no nodal involvement. There is no guarantee you would be just as lucky the next time around however, and given your family history and pathology of this tumor that would personally make me think seriously about bilateral mastectomy.

My own history no doubt biases my opinion but my case is an example of how Lobular can sneak up on you even with the best of care and monitoring. My first cancer in 2000 was IDC stage 2A in the right breast. There were no indicators of any problems in my left breast at all. After my lumpectomy on the right they did find LCIS but I had chemo/rads/tamoxifen and 3 month checkups with 6 month mammograms. I followed up religiously with all my appts for 5 years. Celebrated my 5 year anniversary from diagnosis in July 2005.

In October 2005 at my 6 month checkup and mammogram they said the mamms looked great! But on physical exam an area of "thickening" was found on my LEFT breast. Long story short, the "thickening" turned out to be a 5.1cm ILC which was totally undetected by mamms or ultrasound. I had bilateral mastectomy and total axillary disection with removal of 23 nodes all positive along with rupture in the axilla. My onc has since told me that the lobular cancer was no doubt already in my left breast when I was treated in 2000 for the IDC, it just went totally undetected.

At least if I were going to "watch and wait" I would insist on regular breast MRIs to give yourself the best chance of detecting anything new while it is still small. In 2000 breast MRI was not being done routinely. Standard mammograms can miss up to 50% of Lobular cancers and ultrasounds also have a similar track record.

I know its a tough decision. I would put heavy weight on the clinical aspects of your young age, family history and tumor pathology however, as all put you at a higher risk of recurrence or new primary. Wish we all had a crystal ball to help make the right choices, but we just do the best we can.

Best wishes for you,
LindaLou

I had 2 lumpectomies 13 yrs ago with a very aggressice CA...12/28 positive nodes. Chemo and radiation followed. Now I'm 6 weeks out from bi-lateral mastectomy after discovering a tiny "deep" tumor. I'm so sad over losing my breasts and particularly nipples, that right now, if I had it to do over again, I'd choose to keep my nipples and die sooner, rather than lose them and live forever. I'm sure (and by that I mean "I hope") this feeling will lesson as time goes by, but just be aware that you may feel this way, especially if your nipples are your sexual sweet spot like mine were.

Nash--from someone else who is doing the "watchful waiting" routine, I can understand your anguish about the decisions you're facing. I don't have ILC, but I was diagnosed with LCIS 4 years ago, had lumpectomy, take tamoxifen, and am very closely monitored by mammos alternating every 6 months with MRIs.  The good news is my mom had ILC--not sure if it was stage 1 or 2, but negative nodes--is now coming up on 21 years of survival without a recurrence (had lumpectomy, radiation, and tamox) and doing well at 78 years old.  I went to a seminar on cancer and genetics last year where the counselor said they were now recommending that anyone that tests negative be retested in 6 months, as sometimes the results are not definitive the first time.  She said they have so many new enhancements, the tests are being updated every 6 to 12 months now. With your family history, heritage, and young age, you might want to consider retesting or at least talking to a genetic counselor again.
 Recently my MRI showed 3 "spots" that docs (rad, onc, gyn) all feel are false findings, since nothing showed on f/u US and previous 2 mammos.  I'm trying hard to trust in their knowledge and expertise, but I still worry.  I go for another MRI and mammo in March.  I've been thru the ovarian cancer scare--I had a large ovarian mass that turned out to be multiple cysts which ruptured--ended up with a total abdominal hysterectomy, but fortunately everything was benign.  Feel free to PM me if you'd like.

Diagnosed August 2006, lumpectomy September 2006. Did the chemo, rad thing October - April 2007.  After follow up MRI; Mammo found 7mm, and follow up, follow up tests recommended more follow up, I opted for a bi-lat. mastectomy.  It is a very personal decision but I do not regret it for a second.  The worry before each test and waiting for the results and the idea of having to live like this for the next ten years was what tipped the scales in making my final decision.

As others have already indicated, you have to do what is right for you.

R

I would like to comment on the saving nipples issue.  My surgeon told me they used to transfer them to another part of the body, and after reconstruction transfer them back again.  However, he said they did not realize it then, but they were often transferring cancer cells back to the breast.

In the realm of life, nipples are not that important.  Forget them.