LCIS (with 1mm ILC) - Is double mastectomy the right choice?

You are asking all the right questions. Only you can reach the right decision for you.

seven yrs ago I had the lumpectomy(5mm IDC) chem/radiation.  I was triple negative so there was no med for me to prevent a recurrence. And my  bc was not picked up on mammo. There was no way to know it was there (dense breasts) b/f it was invasive.  Waiting for a possibly invasive tumor (with chemo and risk of mets) was not an option I could live with forever. 

    My irradiated breast was painful all that time.    when I started to look at PBM an oncologist pointed out that I had lobular atypical cells on my 2003 biopsy.  so that put me at risk of a contralateral breast cancer.

After all the close monitoring I decided to have the PBM just last week.   Just had drains pulled out today. all I feel is relief. this was the right decision for me.        No more breath-holding when something looked "suspicious" and had to be biopsied.   And, deep down, I knew I would never forgive myself if there was a new cancer when I knew I was high risk.    

Tootie,

I am so sorry that you're going through this. Very stressful stuff.  I wish that I could offer some sound advice but my situation is not really the same.  I'm sure that others in the know will be along soon to give some input.  Just wanted you to know that I'll be thinking of you and sending you positive, healing vibes.

Take care,

Kelly

First posting to this site, even though I've been reading it since my LCIS diagnosis in September.   Background:  Strong family history - mother, cousins (in their 50's), aunt, niece (31 at diagnosis).    Had first lumpectomy at 20 - benign, 2 more biopsies (both breasts) in my early 30's which diagnosed microcalcifications diffused throughout both breasts.   Now at 56, the LCIS diagnosis, after another biopsy of a thickened area in right breast.    I've been losing sleep and stressing out over what to do - prophylactic bilateral mastectomy, or Evista, MRI's, Mammo's every 6 months.    Playing the waiting game just seems way too stressful for me, since I've long felt that I am a ticking time bomb for breast cancer diagnosis.   I am very active and play tennis 3-4 times a week.   It is very important to me that I am able to resume playing after the prophy BM.   Does anyone have any info on how long they took to recover after the surgery?   I really think that it is the best decision for me.   I have an appointment next week with my BC surgeon to discuss all that it entails, which I know is the first step.   Will have to see the reconstruction surgeon also.    Any info or advice would be appreciated.    I can definitely identify with the others making this difficult decision and sympathize.

Betty,

Done that - been there.  Many of us are in your shoes.  I was diagnosed with ALH / LCIS back in April after biopsy.  Again six months later more LCIS.  After many hours of research and reviewing the forums on this web site I have decided on Prophylatic Mastectomy.  When I met with the surgeon and plastic surgeon they really didn't tell me anything I didn't already know from my 3 months of research.  Personally, I believe we need to be proactive and make the decisions that are right for us as individuals. When you read the stories from other women it will help you greatly.  Just knowing other women are going through the same thing you are will put you at ease.  We are all working together to combat this disease and  support one another.

I also have an active lifestyle- have been running and doing triathlons / biathlons for past 30 years.

This diagnosis took me for a loop and I was rather distressed for a while.  However, now that I have all my facts straight and have a plan, I feel empowered.  Also, there are so many wonderful people here helping me get through this.  I no longer feel alone.

Sincerely,

Laurie

Always here for you,

Laurie 

Betty----length of recovery would depend on whether or not you are also doing reconstruction. I was diagnosed with LCIS 7 years ago and also have family history of bc (mom had ILC);  I do high risk surviellance and take preventative meds (took tamoxifen for 5 years, now take evista for further prevention). I do alternating mammos and MRIs every 6 months and breast exams on the opposite 6 months. Not a choice for everyone, but it works for me. Feel free to PM me if you'd like.

Anne

Thanks to everyone who responded to my post.   The support and encouragement on this site is wonderful.    I'm doing alot of research and the info provided and the links to check out have been very helpful.   I've written down lots of questions for my BC surgeon appointment tomorrow.   (note to Kelly - I'm originally from MD!)

G'day Jen:  I know your feeling, was diagnosed in April with LCIS.  Had core needle biospy done, was told that all was benign.  Insisted that lump be removed.  Then sent to onocology, put on Tamoxifen.  Have been considering double mastectomy.  Having gyn problems, will be having a D&C done this month to rule out hyperplasia of the uterus, since the endormetrial biospy done last month was inconclusive.  My mum had uterine cancer, and other family members different types of cancer.  I'm 56 years old, my husband had stroke 3 years ago, have one daughter who is a god send, and I ask the same question each day to myself, do I go and have the double done.  Will be waiting for results to see if my gyn wants to do hysterectomy, and then I will make a decision.  I'm Aussie living in US..ok if you want to send Prv.Msg.  Hope all goes well for all of us....Suzanne

Thanks very much for the list of questions.  I have decided that no reconstruction will be done when I have the PBM.  Bless all of you ladies

Suzanne

After 20 years of HRT I should consider myself lucky that " all I have" is LCIS.I urge everyone on this site to join the Army  of Women.I've been a member for a few years and so far have only qualified for 1 survey.Whenever the criteria for a study requires one to have breast cancer I always decline as I don't think that LCIS fits that description but there are other studies that may apply.

The issue for me, about a single or double mastectomy is if I have no pain or can't see the cells that are causing me to have this surgery. I know this sounds ignorant. But I usually go to the doctor when there is pain or something does not seem right. None of this happens with DCIS or LCIS. Some one else tells you something could be potentially wrong and might cause grave consequences if you don't "do" something about it. Where is the study, where 300 women are diagnosed and watched over time? Closely watched. Why aren't there trials going on? Isn't that how science figures out all the confusion. I would join a trial or study. I don't have children, I could take the risk. I have a 20% chance of dying of heart disease. Risk is all over the place in life. I simply want more answers before I go through what beesie described above.

Rianne, From all that I've read , and it really isn't a whole lot by me. LCIS used to be treated almost automatically with a mastectomy but only on the affected side. Not sure how they came to the conclusion that this wasn't necessary but they did.Somewhere along the line they had to have followed some women to see if they went on to develope BC and my only conclusion is that there was not a great percentage of them that did.Very close monitoring seems to be a very reasonable plan to me.IF anything were to progress to an actual BC the amount of time that it would have been undetected by my doctors would be 6 months as that's how often some form of radiographic exam is done on me.For me,that's a good deal.Heck if i really wanted to be proactive I'd take out my uterus and ovaries too.At some point you have to believe the studies.

Thanks Misty.  I loved your reply as I tend to think the same way which is why I chose preventative mastectomy.  I am scheduled on Dec 13 but I feel confident it is the right decision for me.  I am too aggressive in my nature to take a watch and see attitude no matter what the outcome may entail.

BettyJ

soooo glad you went with your gut!!! wow, I had a similar situation, having been diagnosed LCIS/ADH (strong family hx) and went BMX, My path came back with multiple areas of DCIS - undetected as well...

The relief at having made my choice and sticking with it was even more than I could explain, (kind of euphoric, I guess?!?) at having changed my fate.  You caught your cancer and I am so glad for you, in a wierd way - I am certainly not happy about your path report...but I am glad that it was caught and you can begin the road that might have been different if you had gone lumpectomy.  

Lumpectomy is a great choice for certain situations, I truly believe that, but it seems that in your case, as well as mine, that BMX was the way to go.

I wish you all the best as you navigate this next phase, sending peaceful thoughts to you...

~megan

Thanks for the supportive posts, Megan and Msippiqueen!    Wanted to update you on my path.   After the BPM, (LCIS diagnosis and strong fam. history), and the discovery of infiltrating ductal carcinoma, I needed to have ancillary lymph node dissection to determine involvement (if any) and treatment plan from there.    Thank God I had negative nodes (9 extracted).   I am healing from that surgery (a little rough) and just had the last 2 drains removed from the mastectomy yesterday (they were in for 6 weeks!)   I had my second fill in TE's yesterday and that has made me sore and achy today, but Tylenol is helping.  I'm thinking one more fill, and then the permanent implant surgery.   I need to see oncologist (app.t next week) for treatment plan (thinking probably hormone therapy?!) but will hear options then.    I can't wait to get this behind me and get back on the tennis court - hopefully by summer!)   

BettyJ,



Wishing the very best for you as you continue on toward the tennis court!



What I especially love about bco is there is a forum or thread for just about anything you may wish to explore as your plan develops. Please keep us posted and God bless you.