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

Yogamom,

I'm considering PBM.  I also practice yoga regularly and am concerned about being limited (forever??) after surgery. Would you kindly share with me (here or PM) what you learn?  I'll do the same.

 Kelly

Yogamom,

I, too am on another drug (Copaxone for MS) that makes tamox. a bad chemical for me.  I'd almost for sure be dealing with uterine cancer as Copaxone is an immune systerm modifier.  I've got a wonderful onc. who agrees that it's a game of odds, and it's my choice.

Also for Jen and Kelly...I am stronger and more fit than ever and have absolutely no restrictions in movement.  The only caveat is that, since the implant is under the chest muscle, every time I flex my upper shoulder/bicepts, my boobs tighten up noticeably.  It can make a real show in a tight shirt!  It's similar to a guy flexing his pecs.  They feel completely, wonderfully normal.  I miss the nipples, but then the alternative is not an option.

I'd advise visiting a few PS, to get a feeling for their work...talk to some of their reconst. patients. I took my teenage daughters with me to visit and they had great insights.   They're my harshest critics and also love the reconst.!!   

JP2010:

I'm SO sorry for your diagnosis.  Life felt so much more stable before we entered into these 'results' and 'percentages' world..

What do YOU feel??

I can tell you I didn't sleep for 3 days after diagnosis of LCIS and ILC. 

 My  Oncological Breast Surgeons protocal and my Radiologists recommendation, as well as my Preventative Oncologists ONLY recommendation with ILC (after core needle breast biopsy) was MX.  

I chose B/L Mx becuz of DCIS noted in the OTHER breast(with core biopsy results), and a strong family history. 

It turned out (in MY opinion) to be the right choice for me.  My full pathology AFTER Mx showed a span of 5 cm of LCIS, 2 mm ILC, and DCIS and LCIS in both breasts! ??!!  I then tested positive for BRAC2.  

I considered the fortunate few that truly were diagnosed early (enuf).  As a result of my clear margins (Lobular cancers are VERY different in growth pattern than Ductal and chain out in straight lines rather than tumours), I did NOT have chemo, radiation, or hormone therapy.

I did however, have reconstruction, and have spent 18 months working through that process.

I am VERY pleased with my results, and at peace about my agressive SURGICAL treatment.  

 Whatever YOU decide...xo.... you will know its right for YOU.... but, honestly, neither are an easy choice.  You will find the most understanding, compassion, information and even love-right here at BC.org.

We are with you whatever you choose, darlin!

xo

I was diagnosed 2-1/2 years ago with LCIS.  My mother is a breast cancer survivor and I had other relatives who had breast cancer.  My insurance company denied genetic testing because only my mother had breast cancer, and not my grandmother.  I couldn't afford the testing on my own so I opted for double mastectomy with immediate tramflap reconstruction. This seemed to be the best choice for me because of 20+ years of cancer scares/biopsies/surgeries to remove recancer growths, etc.  I had my surgery two years ago. The surgery was 9-1/2 hours and the recovery time depends on the person.  As it turns out, tranflap was not a good choice for me.

Not being able to use my stomach muscles has affected my core being much more than I expected.  My back muscles do not support my back as well without the stomach muscles.

I have gained 30 pounds which forces the mesh that holds the muscles in the 'tunnel' to buldge outward.  I asked my surgeon today if he could just remove the mesh and he can't.  I am miserable all waking hours.  When you gain weight it affects the mesh and I wasn't aware fo that or the effect it would have on me.  If you decide to do this surgery, be sure to get on a healthy fat free diet and an adequate excersize program and stick to it.

I have Fibromyalsia.  I have been able to manage it easily for many years, until I had this surgery.  It seems to trigger episodes that I can't manage which causes me to become more inactive in my daily life.  It is a domino affect.  I have no choice but to lose the weight I've gained in the middle of my body and I have no idea how. 

I wish I had gone with expanders.  Even with that you lose feeling, but at least you can feel hugs.  With tramflap surgery, I have to stand sideways to be able to feel a hug.

There is no way to know in advance what is best for you.  I may have had problems with anyother type of surgery and wish I had gone with tramflap. 

I don't know if this helps, but you need to get as much information as you can in order to make an informed decision.  This is an important decision, not just for cancer, but for the health of your whole being after surgery. 

I had a double masectomy in July 2010 with no drains and no tissue expanders and immediate reconstruction using silicone implants.  The recuperation went quite well -- I was in the hospital for 1 night and used prescription pain medicine for a few days but it bothered my stomach so I just used extra strength Tylenol for pain.  I just had a checkup w/my surgeon and things look good but I do need to be checked by the plastic surgeon just to be sure I'm recuperating okay because one side is slightly harder to touch -- hopefully it's nothing.  Pyschologically it's been more difficult than physically because at first both breasts were bruised and there's a big scar across the middle of each breast -- I've been using Mederma cream to reduce the scars and the nurse said it takes 3-6 months to see results but I think it's already made a difference -- if the scars are reduced then I can deal w/no longer having nipples.  I feel good about the decision I made because I've reduced my chances significantly of getting breast cancer again and didn't have to go through any chemo or radiation (luckily) my cancer was not spread and very very small in size so I needed no further treatment.  I'm just praying that my body is healing the right way and accepting the implants and that they won't cause a lot of problems in the future.  I never told people beyond immediate family and nobody even knew I had the procedure done since I had immediate reconstruction.  The first week I had bandages on but nobody saw them.  I just told some people I was going into the hospital for a procedure and would be home the next day and have been happy with my decision to not have people looking at me with pity and knowing my personal health details.  I hope this helps you.

Recently, I have received a diagnosis of LCIS.  The surgeon that did my surgical biopsy went over all the options of preventing breast cancer- Tamox and some other drug, studies for the prevention of BC, repeat mammograms, close monitoring and self exams, bilateral mastectomy. 

Twenty years ago my dear friend passed away from BC, it has left me scared of this disease ever since.  I told myself then, if I was ever confronted with a threat I would take the most aggressive approach.  Taking care of my autistic child has also made me look at it from another point of view- I need to be around to take care of him.  I am not a gambler.  Any time in my life there was a problem, I would take action and take care of it. 

So, the first thing that comes to mind is that I should have both breasts removed with immediate reconstruction so that I can get on with my life.  Living from mammogram, waiting for results, going to visit the surgeon, surgical biopsy in the hospital, waiting for the results and then doing it all over again 6 months again- IS DRIVING ME CRAZY.  Can't eat, sleep, function normally.

I am a runner, that defines me in many ways.  I have done numerous marathons, etc. for the past 30 years.  Running  helps me mentally and helps with my depression tremendously.  Now I wonder, will I ever be able to run again after bilateral mastectomy with DIEP flap for example?

Have not seen the oncologist yet- that appointment is tomorrow.  I have made an appointment with surgical oncologist and plastic surgeon later this month.  I just want to get this over with and behind me.  

My breasts are "extremely dense" and small.  My breasts always hurt or ache for some reason.  Sometimes I get mad and I think- I don't want these breasts anymore, they are causing me so much grief.  Then I read about how some patients really miss them after surgery.

After spending numerous hours and hours on the internet researching this disease, I am not sure I can learn that much more from the doctors. 

Sure feel like a glass of wine right now, but I was told even one glass of wine could increase the chance of breast cancer.  Don't drink it very often but I could sure use a glass now.

Thanks for listening,

Laurie

Jen,

I almost cried when I received your response.  Thank you, thank you for reaching out.  This whole situation has left me feeling isolated from even those I love.  Nobody could possibly understand what we are going through, except us.  

September 16, is not so long ago... how are you doing?  I wish I could make a pot of my homemade chicken noodle soup and bring it over to you.  I wish I were in your shoes right now.... you have the surgery out of the way and you are on your way to recovery... YEAH!

I like your statement- "the decision was a no brainer for me"-  something I have said as well. 

Thank you again for your help.  Also, thank you for the information about the support groups.

From My Heart,

Laurie

Hi Laurie,

You can read my history from my previous posts on this topic, but wanted to chime in again with how empowered I feel after having the BMX (with recon).  It was a very easy process for me, maybe because, like you, I wanted to put this thing way behind me.  My husband often pisses me off by minimalizing my surgery/recon. and saying  it was a piece of cake, but it was a very manageable thing for me.  I absolutely  know that I couldn't live with the knowledge that ILC occurs more often in the other/same breast again.  I would be NUTS!!!! with the waiting and checking.  I did not have to do chemo or rads with an Oncotype of 5, but I chose the surgery way before I knew this.  

I, too lost a good friend to BC, but actually she died of uterine cancer that had met. to her spine after 5 years on Tamox.  I'm scared shitless of Tamox. and so I don't take it.  We all have our demons and that's mine.

If you are a powerful person ( who is mad at your small, useless breasts, like me!), maybe the BMX is right for you.  As far as the running and physical stuff, I am stronger and more flexible that I've ever been.  The recon. has been perfect.  I love the way they look and feel, and having them reminds me daily of the conviction I have for living a fabulous life...and when I run, they stay nicely in place with a tiny jiggle.

I have teenage daughters (who also love the foobs!) and they were a huge reason for my decision as well.  I am proud of how normal our family has remained through this whole thing.  I would advise talking and seeing the recon. of some of your PS patients.  These are my heros; the women who lifted their shirts for me so I could know where I was going.  We run into each other in our small town and no one even knows why we laugh and compliment each other on the boobage!  Gotta say, I do miss my nipples, though!!!!  LOL

This can be fine...it's just a process.

Beth 

lciscarrol: i'm sending you a PM right now.

-Kelly

Firedancer,

You have no idea how good it was to hear your story.  Sounds like you and I think along the same lines.  I have a tendency to be proactive in just about all aspects of my life.  My surgeon said I have plenty of time to figure this out. Only thing is- this thing is making my life miserable and I want to take care of it now.  Still 4 weeks before I can even see the surgery oncologist and plastic surgeon to evaluate DIEP flap procedure or something similiar.  I am concerned I might not have enough abdominal fat for this procedure.  I look like a marathoner- no fat to speak of.  This one time in my life I wish I weighed more.  The main thing is I do not want them touching my muscles- I really need them because I am planning to get back into running after this is all done- I don't care how long it takes. 

Hey all-

I have been reading the boards for several weeks now trying to process all the info and navigate this whole experience. I was diagnosed with LCIS 3 years ago via surgical biopsy after calcifications found on Mammo/ core biopsy. 18 mos later, more calcifications on mammo, same area-straight to surgical biopsy this time (the whole human vodoo doll core biopsy gig---not for me)...again more LCIS found. Next year Mammo fine, Radiologists suggests MRI in which I light up like a Christmas tree on both sides (Note ladies--I was 12 days late for my period and was never told this was the very worse time to do an MRI---hormonal surges matter!). Anyway back for another surgical biopsy (if I had a frequent flyer biopsy card I am sure the next one would be free!).  So in just under 4 years I have had 3 surg biopsies on my right side. I am a very small A cup/dense breasts. After much discussion with my significant other, I have opted for a prophylactic nipple and skin sparing Mastectomy this December. I realize to most (including my PS and BS initial response), this is  aggressive/extreme. I do not have BRACA gene and no real family history to speak of. HOWEVER...it is really a quality of life decision for me. As articulated by some of you, the stress of waiting and the 6 month interval screening  is truly debilitating (plus they seem to always see something that requires surgical biopsy --I won't do core biopsies as I know once they find any LCIS it requires wider incision so I just cut to the chase now). I live in NYC, have a very high stress job, a son in his freshman year at college and one who just entered HS. I literally feel my blood run cold when I get called back for "more pictures" and have to sit in the paper gown in the radiologists office in a holding area they have designated for women who need additional imaging. My BS, who is known to be one of the best in the country has told me..."look, there is only a 20% chance you will get cancer. Unless of course you are in that 20...then its 100%" (I seriously love this guy). He also said "honestly, something does seem to be brewing in there" . My breasts are so not on my radar in terms of how I define myself--however I think about them obsessively as I wait for the proverbial other shoe to drop.My BS suggested NSM- I met with the PS who said  I am a great candidate for the procedure and since I am so small busted (and apparently already lopsided---I really didn't even notice until he pointed it out)...the final results could  be cosmetically be better than what I have now. I am well aware you lose all sensation, but again....my breasts just aren't a star player in my sex life. I read the NSM board (all 48 pages top to bottom over a week period at work), so I am not naiive in terms of being prepared for a very, very challenging year. My BS said the one thing he wanted to know was "if I was prepared to come out of surgery to find out there was really nothing there at all". My response was that I would be devasted if there WAS something there; that after all the biopsies and tests that something had been lurking. I want him to find nothing. Most people just say "wait and see" or "you are being monitored so closely, if something comes up it will be caught so early" Here's the deal...I don't want it caught early. I don't want it caught at all...I don't want  chemo or radiation or even tamoxifen. I don't want breast cancer if I can avoid it. My Drs say this operation will cut my chances by 95%. I like that number a whole lot better than the "80/20 or 100 % if you are the 20%". I feel like after reading all these boards I am definitely at the far end of the prophylactic continuum in terms of a preventative measure but I have to be around for those boys of mine for a very long time. I literally lose days of my life every 6 mos filled with anxiety from the time of mammo to final results, I do not think straight for weeks.Last time I was waiting for the surgeon's call during my son's HS graduation, on the edge of my seat obsessing with worry... I literally had to keep reminding myself to stay in the moment that my son had worked so hard for--that I will never have that day back again. It was sobering and sad as to how this seeps into your life in such a toxic way.  If in 3-5-7 years from now they do find something,  I would only be filled with regret I did not take action to prevent it in 2010. Anyway...that's my (long) story. But for those on the board who are considering prophylactic mastectomy for LCIS,  it is worth exploring the Nipple Sparing procedure as an option--the thread on this board is very informative and the women seem truly wonderful and supportive of each other.

Takeadeepbreath, thank you for you post. Well said. Many of us are in similar positions and feel the same way you do. Others will feel differently (and may be happy to share their views) but ultimately it is only your opinion that matters.  Here to support you along the way, Kelly

Thank you for taking the time to write, I greatly appreciate it.  What type of reconstruction did you receive?  Did you have it immediately after BM?  How long did you take to recover?

Sorry, I just have so many questions.

Thank you, thank you

Laurie

It is nice to know other people have been through similar experiences and react in a similar way!

My husband's family doesn't know anything and I'm also glad about that.  It does seem to make my recovery easier without a lot of people knowing and asking questions or making comments, as you say.  I don't remember if I mentioned that I have been using the cream Mederma to try to get rid of the scars and I think it's working -- it's been 3 months now and one nurse said it could take 6 months or more to see results -- I use it twice/day -- my plastic surgeon says the body will heal naturally but if using the cream makes me feel better psychologically then go ahead and use it -- it cost about $15/tube and I probably use one tube/month.  I feel like if the scars weren't so obvious I can deal with not having nipples anymore -- but the scars have bothered me a lot.  Also, I was worried about getting cancer back but my surgeon said I went from having an almost 80% chance of getting cancer to having a 95% chance of not getting cancer again.  He told me to try to enjoy life everyday and try not to let worrying interfere -- that's pretty good advice, and I'm trying to do that -- it's difficult though when I've always had a family history and then found out I had the gene -- then found out I had cancer -- it's hard to just stop the worrying.  Anyway, I like the advice to try to enjoy life and not let the cancer "win" or get in the way!

• I hope things are going well for you as you make the choices.  I had LCIS, pleomorphic, and a strong family history of BC. 

In general the docs did not encourage the surgery, and that includes the breast surgeon.  The oncologists said take tamoxifen, the surgeon said it was my choice.  This is the "by the book" answer.  However, I went with my instinct.  I felt like God had given me a big red flag warning that if I chose to ignore would be at my peril.  I really hated the MRIs as the gadolenium produced some allergic reactions for me.  I already had so many biopsies and I was so sick of it.

This was interesting:  I was treated at Stanford and had such great care.  After on of my millions of mammos, one of the senior attending radiologists asked to me to come into a room with her.  There she said to me: "I understand your treatment plan is bilateral MX, is that right?" I told her it was.  She told me, "good, that is just what I would do if I were you.  Your breasts are so complicated and your risk is very high."  She told me this one to one, took a risk to say so.  I told her I appreciated this from her as not every one agreed with my choice.  I still hear her words today in my head.  It helped.

 I saw it that the oncologists are going from data sets, the surgeons are worried about their legal liability, but this doctor was hands on my breasts, did a couple biopsies for me, wrote my MRI findings.  She knew the score.  So did I.  I knew what I wanted right away.

 I did the surgery, I love it, and just kept right on with my life.  I might be unusual but it did not hurt even one little bit.  I got the drains out and that was that.  Good luck to you!!!