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

Hi Jen. Not in the same boat exactly but wanted to respond. I have a pleomorphic variant of LCIS and some other funky but benign stuff and I am seeking a prophylactic bilateral mastectomy. I just feel that it's the right thing for me. I know someone will come along soon with a more similar situation to yours who can better answer your questions. In the meantime, I'm thinking about you and you can PM (private message) me if you need to vent, etc. Take care, Kelly

Jen,

I have a very similar diagnosis, except mine is 6mm ILC and 1mm LCIS. I alos had to make a decision about what to do.  Beesie's list is what helped me decide to have the lumpectomy. Have I made the right choice for me with what I know at this time.

By the way, Beesie thanks for having this list to help us make a very hard decision. I for one never wanted to need to make such a decision, but your list did make me think.

Karen

Beesie has some very very good things here for you to consider. Her list pretty much covers everything that you should be considering. I went through a single mastectomy 18 months ago, with immediate reconstruction using tissue expander and implant. My surgeon told me that I should think long and hard about removing both breasts and that women often underestimate the loss of their breasts and that I could always change my mind months or years later if I decided I didn't want to live with my healthy breast. "Once it is gone, it is gone forever". He then said, "I'll do whatever you want, though".  That was probably the best advice I ever got. Maybe it is because I now have a healthy breast and women who have gone through a double have  had no choice but to come to grips with their decision, and don't have a healthy breast there every day like me to remind them of what they have lost, but for me it is a huge part of sex and it is gone. I thank my lucky stars every day that I still have the other. I don't know for how long, and I don't know if it will ever get bc on that side, but if it does it will hopefully be caught very early as I have mammos and breast mri's every 6 months.  Reconstruction does carry with it its own set of problems and issues. I have back numbness and tightness that can only be described like my chest being in a vice 24/7. I have been through PT and nothing seems to help.  I am learning to live with it.  It certainly looks nothing like a breast if you ask me. It is a shape. It is smooth. It sits in the right place (sort of) . But it is completely umb as if it's gone to the dentist. No feeling. No nipple. I have seen women who have had both breasts done and nipple reconstruction as well and they look very very real, but remember, they cannot feel them. They do not respond to being touched. Mine will and never could look exactly like the opposite one anyways, so I have chosen to not undergo nipple con. My natural breast droops, but the reconstructed one sits under the chest muscle and so it looks sort of trapped behind there. It doesnt droop or move.In a bra, however, nobody would ever know.

I believe the "C" in LCIS stands for carcinoma which in both Latin and Greek means cancer. It's not invasive (yet) cancer. The I and S stand for in situ which means in place, in other words, hasn't moved....or "invaded the lubular wall." Hope this helps.

Suepen, 

I respect your decisions in regard to your own body. I also respect your opinion that Bilateral Mastectomy is a very serious and major surgery that you found to be not right for you.  I also respect your feeling passionate about your decision.  Most of us do.

 I do find your post to be very disrespectful to those of us who have made, or are making, or are considering a "radical" decision to "chop both our boobs off".  Lobular Carcinoma in situ is just that, Cancerous type changes in the cells of the lobules.  You can call it neoplasia, but it remains the same thing.....abnormal cell growth....which is what cancer is.  Yes it is non-invasive, thank goodness for us.  BUT the elevated risk is real.  What is also real is that the evidence shows that what is truly known about LCIS is substantially small, 2 opinions about treatment are just that...OPINIONS.  I am seen in a Nationally recognized Cancer Center and was NOT given an opinion.  I was given the facts, given the options and was able to make the BEST DECISION FOR ME.  I had a PROPHYLACTIC Bilateral Mastectomy, thereby taking my risk from abnormally high to lower than an average woman.  I feel no sense of loss, no sense of "radical" judgement, and no remorse.  I watched my sister die from BC at a young age. I know that I might never have gotten BC, but I also know that FOR ME the decision to do EVERYTHING in my power to prevent having to deal with a BC diagnosis was better than waiting to see if I did develop it and hope that it was caught early.  I screened high risk for 6 years and that is no cake walk either, constant worry and stress.  Please respect that.

Beesie-great job on the list.  Those are all very important things to consider. 

Jen-you may run into differing opinions and differing treatment options. The invasive component changes things.  I am sorry you are faced with these decisions.  This forum is a good place to chat with people who are in similar and different situations.  It gives you tons of insight into things you will need to consider, but at the end of the day if the decision to have or not to have a BMX lies with you, then it has to be right or wrong in your own gut.  And as this thread proves, you will need to feel okay enough with your decision to defend it against people who disagree because you will run into that.

I personally know that I may never have gotten cancer.  I also know that it does not matter to me.  The mere fact that my risk was higher (no matter what the number), and that by having a prophy BMX I was able to reduce it to the smallest number possible was enough for me.  I know in my heart and gut that I have done everything possible to prevent BC.  Yes, the decision was hard.  And yes, the process is long and has not been a walk on the beach, and the result is a mostly numb replica of a breast....but FOR ME...those things were less important than the higher end of the gamble for a cancer free ticket, for me it was the best decision.  I wish you peace in your decision.

Just my opinion, but as I read it, I didn't think that Sue meant to be disrespectful. She was simply expressing how she viewed her surgical choices. She wasn't talking about anyone but herself. The words she used to describe a bilateral mastectomy were harsher than the words we usually use on this board and I can appreciate that her choice of words might offend some women.  But if that's how Sue sees it, then she was just being honest.  If this was a forum specifically for women who've had mastectomies - the reconstruction forum, for example  - then I would agree that Sue's choice of words could be seen as being insensitive and maybe disrespectful.  But this is the LCIS forum and Sue's post was in response to someone asking whether a bilateral would be the right decision.  Most of us are offering up how we made our surgical decisions by explaining what went through our minds.  To me, that's what Sue did too - she was expressing how she viewed things; it was not a judgement of others. 

As an aside, I find on this board that too often we sugar coat mastectomies and bilateral mastectomies and I wonder if we are being fair to the women who face these decisions.  I had a single mastectomy and implant reconstruction.  While I didn't think of a mastectomy as being an amputation (another harsh word) back when I was going through the process, now, 4 years later, I realize that this is exactly what it is.  The real and phantom sensations, pains and itches that I still get today, all these years later, are exactly the same as what other amputees experience.  I purposely don't use the word "amputation" when I post because I worry that it might scare some women or offend others.  But maybe I shouldn't be so careful. Perhaps instead of always using the term "bilateral mastectomy", I should sometimes say "amputation".  It might help give women a more realistic idea of what to expect. 

All of this isn't to say that for many women, a bilateral mastectomy (or should I say, a decision to amputate both breasts) isn't the right and best decision. For many women, it is. The problem however is that I see too many women making this decision without fully appreciating the long-term implications and possible problems. There seems to be a good understanding of the implications and risks in keeping one's breasts but there is little discussion about the implications of a mastectomy or bilateral.  A bit more honesty and bluntness from the women on this board might actually be helpful in this regard.  This isn't to discourage anyone from making this choice but is simply is help ensure that it's an educated decision.

As always, thank you Beesie for your reasoned thoughtfulness. 

I don't know for sure, but it seems to me that the majority of BC women that I meet in real life chose lumpectomies and unilateral mastectomies, and that the majority that I meet on the boards chose bilateral mastectomies. All I hope is that the decisions are as well informed as possible.

Jen, how are you doing? 

I agree with Beesie in that no matter what type of surgery you shoose, a mastectomy IS an amputation, even if you have reconstruction. I am treated at the largest Army medical facility in the country where all of the wounded soldiers come after being injured in the war. I see amputees each and every time I enter the hospital. They are in the hallways, the elevators, the dining hall, the pharmacy, the bathroom (yes, even women lose their arms and legs in war, ladies), and I am amazed each and every time at how very young they are. They might get a prosthesis just like a reconstructed breast is, but believe me they can't feel it and it can't perform like a real arm or leg, and if they get a prosthesis, it is for our comfort to a great degree, so that they "look" normal, but reaching out to shake their hand would be very very awkward and to shake a prosthetic arm or hand does nothing for the amputee. It is just plain weird to even imagine. That is how sex with a reconstructed breast feels to me - only my opinion about my own expereience. Just sayin'. It's certainly not a win/win in my book. My husband may find it pleasurable but to me that would be insulting, so it's "off limits", shall we say. Maybe one day I will change my mind. Many on these forums have expressed different feelings about theirs so I do respect it. I just wish somebody would have warned me beforehand just how devesting this would be. I had no choice of a lumpectomy...two tumors too far apart, so it's not like I had a decision to make about keeping it. I would have kept it if I could have. That is why I am honest and blunt talking about it with women facing a decision. It is only fair they know what they may be getting themselves into.

Misty - if you don't want to hear opinions differing from yours - don't ask in the first place. There is growing concern of the over treatment of LCIS. I am very well informed and still believe a mastectomy should only be done if absolutely necessary. Even this Breast Cancer website recommends close watching over surgery. This is your most prominent BC website for the US!!!!

For me, I found that when I was getting more biopsies, that I was VERY sensitive to posts here.

We are all in different situations and have different needs and feelings.  For some of us, the diagnosis of 'LCIS' does not give the full medical picture. There are many unknowns in LCIS. We may have an unusual form of LCIS.  We may have other breast conditions.  We may have a strong or weak family history of different conditions, or have other medical history or conditions that influence our treatment choices.  We all have different anxiety tolerances.  We all have different feelings about our breasts.

No one can tell you how you feel about your situation.  We all have options- people can choose to not treat any medical condition they have, whatever the condition or consequences. It may not be the choice that you or I make, but it is an option.

I strive to respect everyone's decision.  I just hope everyone makes an informed decision, no matter what it is.

Jen,

I'm not suggesting that my path (as in route, not pathology...which is also different) is yours, just wanted to say that I share your concerns. I'm 42 and have four kids (7,5,3 and 1 1/2) and the cycle of mammo/mri/possible biopsy/stress/clinical exams for many years to come is what is driving me. Anyway, I'm really sorry you're in this position but I'm glad you've felt supported here and hopefully your decision will bring you some peace. Now if we could just get a thread going about how to handle 3 year old boys!!

Kelly

Interesting discussion as usual. Unfortunately there is no definitive course of treatment for LCIS but with an invasive component there is no doubt that further treatment is required. Each person has to evaluate their options and consider their risks and make their own difficult decision.

Australia I take it that the invasive component was detected only when they performed the lumpectomy and was not detected through any screening such as mamo or MRI. That should also be a consideration for you.

I found it interesting that some of you feel that mastectomy is too radical a form of treatment yet lumpectomy with radiation and hormone therapy has many additional risks attached to it. The side effects from these treatments can be very harmful and should be considered as well in your decision.

Further there are other options available for reconstruction rather than implants. Diep/sgap flap surgery is a wonderful option for reconstruction that gives a women a very natural and pleasing result with or without clothes.

This is a very difficult decision that many of us have had to make. Do your research and be at peace with your decision and please do not be critical of others for their decisions.

JP2010-Good for you girl going with your list of questions!    I always took a written list to make sure I did not forget anything.I think my surgeon actually appreciated that.  My LCIS was just under 1 cm.  The way my surgeon explained it to me was that the clean margins kind of did not mean anything with standard LCIS because the excisional biopsy  (following the needle loc. that diagnosed LCIS) was actually to make sure there was no invasive hiding in there that had not been found by MRI, as in your case.  I say kind of, because LCIS is usually multifocal and bilateral and they really can't guarantee they got all the LCIS out of the breasts anyway so the margin was not the most important thing.  Don't know if I made that clear or not???  It seems clear in my head   Anyway.....I am not sure I have seen anyone else yet that has had that much LCIS.  That is alot.  My final path showed no more LCIS only ALH throughout.  You are right that the radiation should stop anything else in the breast.  With LCIS though it is not the actual LCIS that becomes cancer, so would that still lower the risk for the future that the LCIS brought???  And you would be radiating just the breast with the Invasive, so the other breast still has the higher risk from the LCIS.    Hmmmmm, I am curious to know what they tell you.

macksix6-thanks for your thoughts.  I am past the decision point obviously, and had forgotten that I most certainly did consider the side effects of the alternative options.   They were actually scarier to me. Reaffirms that my choice was right for me.  Thank you for that.

Thinking of you JP2010 and sending you strength vibes

Hi Jen --  My situation is similar to yours - a very small bit of ILC that was removed, plus LCIS on both sides, the extent of which can't really be known.  Radiation was not recommended.  I'm on Zoladex to stop my ovaries from producing estrogen, and Arimidex. 

I am thinking I will have a bilateral mastectomy late next year -- my Onc says there is no urgency and it is my choice -- because I think it is the most health-protective approach in the long term.  I'm using the time to understand the issues with reconstruction so that I can make an informed choice - and BCO is very helpful!

My story has elements of several posts here.  I am having a prophylactic double mastectomy this FAll.  My cancer diagnosis was almost 7 yrs ago and I have gone thru all the bi-annual testing.  After the initial 5 yrs I realized that I had most likely made it thru the yrs when mets or local recurrence would most likely have shown up.

My cancer, tho small, was TN, grade 3 and "quite extensive in the lobular area".   In 2003 my docs were mostly relying on the diagnostic system based on size of tumor and # of positive nodes.  My path report was not red-flagged as it would be today. 

 So at this point in my "journey" my biggest challenge today is detecting any new breast cancer in its earliest stages. It could show up in either breast; and 8yrs seems to be the "average" time when a new cancer would show up.           The big "five yr survival" date really doesn't have that much of an impact on my overall prognosis.     

I know my 55 yr old self enough to opt for BPM at this point.     I wish I had gone that route 7 yrs ago rather than lumpectomy and radiation.   It is what it is.    In 10 yrs I will be 65 and too old for the galladium dye used in the IV during MRI.  So I would be losing the exquisite sensitivity of that test.               I just CANNOT take the chance of finding another invasive bc.  I would be kicking myself like a donkey. 

Part of my general decision-making process is to envision worst-case scenario (wcs) and plan to avoid that.  WCS would be that a bc is discovered and I need chemo again; absolute wcs would be that I had any positive nodes.  Loss of both breasts, while incredibly devastating for sure, is not MY wcs.           This is the formula that works for me.  FWIW.          eileen

Ditto Misty!  "Overreacting" is being judgemental not helpful.  Each situation is different and taking the risk isn't for everyone.  I choose BMX for microcalcifications in left breast and LCIS in right and a big family HX. I was being proactive in April of this year (I am also a critical care RN)so that I can grow old and see my sons mature.