New here, just looking for some advice..

Katmando9

Hi, I was just diagnosed in February with ALH and LCIS. A little bit about my background, I just turned 50, my mom passed away at the age of 40 from breast cancer. I have extremely dense breast 75-100% dense. I have so many cysts in both breast (simple and complex) and my breast are always painful. To date I have had 7 different biopsies and just feel like it's never ending. I went for the BRCA testing last week and I am expecting my results at the end of March. After doing research on ALH and LCIS my gut tells me to go for the PBMX. Do you think I am over reacting? I have yet to discuss this with my breast surgeon as we are waiting on the results of the BRAC test. I feel like I would be a good candidate for that option and was just wondering if others agree with me. Thanks up front for your thoughts.Kat

carol57

Katmando9, what a hard question! I was in a similar spot and opted for the pbmx. My BRCA results were negative, but of my mother, aunts, and grandmother, only my mother survived BC (still going strong at age 85!). Mom for whatever reason refused to have genetic testing, so I cannot know if there's a genetic root to the family BC incidence, and I happened to get the gene from my father, or if there's some other unknown familial trait at play. Each one had been diagnosed quite young -- mom only 38-- so as I entered my 50's, I thought perhaps the family disease had skipped me. But after some nipple bleeding that led to lots of imaging and 3 biopsies, ultimately finding 'only' LCIS, I had second thoughts--maybe it wasn't skipping me, but I was the only one who got an early warning signal. So I leaped at the chance for pbmx. I have zero regrets; I was 56 at the time and I'm 60 now. But I do know that my decision was founded almost entirely on the emotional foundation of waiting a lifetime for 'my turn.'

Many women have demonstrated in this forum that surveillance, sometimes with anti-hormonal treatment, can be an effective strategy with LCIS. I have been in awe of the knowledge that some of our forum members have, their willingness to share their expertise, and their determination to ensure that what's passed along is evidence based. Had I received this education before my surgery, I wonder if I might have at least taken longer to make my decision, or perhaps gone for the surveillance approach as an interim strategy. Still no regrets, but my suggestion for you is to take time, in small snippets if you sense you're getting overwhelmed, to read through lots of the threads in this forum. You have time to read and think, as LCIS gives you time to contemplate and plan.

You'll find a wealth of solid information here, infused always with care and concern for others and respectful of everyone's need to make an individual decision.

Even after the fact of my pbmx, I'm so glad I found this forum. I'm grateful to the women here who have helped me understand, even in retrospect, the implications of my diagnosis and my response to it. It's a great advantage to you that you've found this wonderful resource before making your decision.

Best wishes...

Carol

Anonymous

Kat---I also have LCIS and my mom had bc (ILC), so I understand your worries and concerns. I was diagnosed over 11 years ago, had lumpectomy, took tamoxifen for 5 years, and now have been taking evista for over 5 years, and I continue with high risk surveillance of alternating mammos and MRIs every 6 months, with breast exams on the opposite 6 months. While this is the route I chose, many others may choose PBMs. It's such a difficult and personal decision, especially with LCIS (as we are in the "grey area"'; abnormal cancerous cells, yet non-invasive, and may never turn invasive, but no guarantee of that.); the good thing is that there is no rush with LCIS, you can take your time making decisions. don't let anyone rush you! Do I think you are over reacting? No. Your risk sounds even higher than mine (I don't have dense breasts, and my mom was n't young at diagnosis like yours was (she was nearly 58) and I considered PBMs initially too. Whatever you decide, has to be right for your own individual situation. so again, don't rush, take your time to research, ask questions, and let it be a decision out of knowledge, not fear.

Anne

Moderators

Hi Katmando9. and welcome to Breastcancer.org. We're sorry for the worry that brings you here, but we're glad you've found us!

In our main site you'll find an interesting article about Prophylactic Mastectomy that may help you in the decision-making process.

Best,

The Mods

Katmando9

Thanks Carol and Anne, appreciate your reply. I have read just about every thread on this forum about LCIS so I know what my options are and I fully understand that whatever course of action one decides is a very personal choice. I don't feel like I am struggling with what I want to do because from the moment I found out about my options I knew I wanted to have the PBMX. I'm not attached to my breast and if I can do this to lower my risk to 1-2% of ever getting breast cancer then why not? To me it's a no brainer. I know losing my mom at such a young age plays a big part in that decision. My father has also had cancer. He suffered from stomach, colon and prostrate cancer. He is still alive but suffered going thru chemo and radiation and that is something I never want to deal with personally if I don't have to.

My fear stems from not really knowing what I will look like after the surgery. Sure I can google before/after images but that doesn't show me what I will look like afterwards. I would like the reconstruction.

I know with LCIS I have time. I'm just not sure what I could learn that would make me change my mind given all myfacts. My son is getting married in Oct and I would love to have this all behind me by then if possible.

As I mentioned earlier I have not discussed this yet with my breast surgeon as I am currently waiting on the results of the BRCA test but I am wondering if she might try to talk me out of going for the PBMX route? Will she think it's to drastic? Are surgeons open to doing what the patients really want them to?

Thanks again for taking the time to read through the thoughts going thru my mind. Kat

carol57

Kat, my surgeon said she thought my decision was overkill, but she respected my reasons for wanting the pbmx and supported my choice.

As for the 'after,' you have choices there, too, and I'm pretty sure you've been on the recon forum to read and learn. I had immediate diep reconstruction. It was rugged for about a week after, but then each day I felt better and stronger and recovery was not bad at all. I have scars, particularly in an area where the BS scraped the skin so aggressively that it did not survive and scar tissue replaced it. But even that bothers me not a whit. I feel like my natural self and only my husband and I would ever know that I had bmx, even when I'm in a bathing suit.

I did develop lymphedema, but that's because I had a sentinel node biopsy (surgery breast center disagreed with interpretation of one portion of the imaging performed at my diagnostic breast center). You're probably not slated for SNB, so no worries there. But if anyone does suggest it, then be sure to bring lymphedema info into your reading list.

I think that the thoughts going through your mind are very smart thoughts!

Carol

leaf

As I mentioned earlier I have not discussed this yet with my breast surgeon as I am currently waiting on the results of the BRCA test but I am wondering if she might try to talk me out of going for the PBMX route? Will she think it's to drastic? Are surgeons open to doing what the patients really want them to?

I do NOT have your family history of bc: all of the bc in my family was over the age of 50 (except 1 cousin), and all of my family's bc cases were second degree or further. I did NOT have genetics testing, but did have 1 session of genetic counseling. The counselor said I had a risk for BRCA that was about equal to an _average_ Ashkenazi woman.

I did not like my breast surgeon for several reasons, including the fact that her first words to me were "If you want PBMs, I will fall down in a chair." Its fair that she have this opinion, but she hadn't asked me about my family history yet. She refused to do any breast surgery on me (besides the LCIS excision).

When I went to an NCI-certified center for a 2nd opinion, they did not recommend PBMs for me, but said they would not 'bar the way to the surgery doors'. However, they were out of network, and I'd have to pay a substantial amount of money out of pocket.

Many LCIS women here with a weaker family history than you do have had PBMs. Obviously, I don't know what your breast surgeon will say, but if you say you want PBMs, with your family history, I think you have a much better case for PBMs than I did.

Katmando9

Thank you all for your thoughts. Appreciate it. Enjoy the week ahead. Kat

dmarie71

I was diagnosed with ALH and LCIS 3 years ago and tried tamoxifen but had wicked side effects. After 6 biopsies and my latest mammogram showing suspicious new calcifications in the "good" breast, I finally said enough is enough. I had a PBMX 8 weeks ago. I had direct implants and fat grafting the day of surgery. My breasts look really good. I have a bit of rippling but I will be finishing my reconstruction in May with BRAVA and additional fat grafting. I was thrilled to not have to wear the TEs. I barely notice my implants since 5 weeks post-op. I was able to keep my nipples and I had my incisions under my breasts. Till this is all finished I was told that I should look like an augmentation patient. I no longer have sensation on most of my breasts, but I was willing to trade that for peace of mind. By the way....I have no family history and did not qualify for BRCA testing.

MelissaDallas

I'm just doing closer monitoring