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

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Jul 22, 2010 07:25AM

JP2010 wrote:

Hi All - thank God I found you all. This journey is NO fun on your own.

My recent history is a bit long and involved, but for now I'd like to know if anyone has had a core biopsy diagnosis of LCIS only to find (fortuitously indeed) on surgical excision there is a tiny (mine was 1mm) ILC in the tissue too?

I have read about those with diagnoses of LCIS having the double mastectomy, and I can fully understand that decision. But do you think it's even more appropriate given my diagnosis? (I would definitely have the reconstruction... but I'm sure that's a new "kettle of fish")

I am under pressure to make a decision about 'Radiation' on the area where the 1mm carcinoma was found, but I understand the results of reconstruction are not as good after radiation - does anyone have experience with that fact either?

I've got a lot of questions, and am feeling very alone despite all the love and support I have around me. It's never the same unless you find people to talk to who KNOW how you are feeling.

Jen :-) UU (I think those are boobs! Happy boobs!)

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Jul 22, 2010 01:12PM KellyMaryland wrote:

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

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Jul 22, 2010 03:28PM Beesie wrote:

"Is double mastectomy the right choice?" 

No one can tell you that.  Only you can know what is right for you.  Someone else might be in an almost identical situation to you and they might be happy to go with a lumpectomy + radiation.  But you might decide that a bilateral mastectomy is the best decision for you.  What's most important is that you consider the pros and cons of both alternatives and then decide which approach is best for you, both in the short term and over the long term. 

Here's a starter list of some things to consider:

  • Do you want to avoid radiation? For those who have a small amount of cancer that isn't near the chest wall, usually that's possible with a mastectomy, although you should be aware that there is no guarantee, if some cancer cells do happen to be found near the chest wall. It sounds as though that would be unlikely in your case so the odds are high that you would be able to avoid radiation by having a mastectomy.
  • Do you want to avoid hormone therapy? If you are ER/PR+ then in all likelihood you will be prescribed Tamoxifen if you have a lumpectomy or a single mastectomy.  Tamoxifen will be less necessary after a bilateral mastectomy (assuming that no more invasive cancer is found than what you know about now).
  • How do you feel about going through a longer surgery and recovery period? Reconstruction, even "immediate" reconstruction, is a very long process - many months.  Some women have little discomfort but other women find the process to be very difficult - there is no way to know until you are doing it. Are you prepared for that?
  • How you do feel about your body image and how will this be affected by a bilateral mastectomy? Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural. You may have lingering side effects (muscle pain or spasms, etc.) on one side or both. Will this bother you? If you have a bilateral mastectomy and you have complications with reconstruction, how will you feel? Or if you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have reconstruction on both sides at the same time), will you regret the decision to remove your breasts?
  • How do you feel about losing all the natural feeling in your breasts and your nipple? Are your nipples important to you sexually?  Remember that if you have a bilateral, this will change your body for the rest of your life.  Are you prepared for that?
  • How will you deal emotionally with the loss of your breasts? Will you be glad that they are gone because they were the source of your cancer, or will you be angry that cancer forced you to lose your breasts?   Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a few years, once this diagnosis is well behind you.  A lot of women don't really feel the loss of their breasts until quite some time has passed.
  • Will removal of your breasts help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breasts are gone? Or will the loss of your breasts be a constant reminder that you had breast cancer?
  • Do you know your recurrence risk if you stick with just a lumpectomy and radiation?  Is this risk level one that you can live with or one that scares you?  How would you deal emotionally with this risk level?  Will you live in constant fear or will you be satisfied that you've reduced your risk sufficiently and not worry about it (except when you have your 6 mth or annual screenings)?
  • Do you know your risk to get BC in your other (the non-cancer) breast?  Is this a risk level that scares you and that you just can't live with?  Is that what is driving your thoughts to have a bilateral?
  • If you have a lumpectomy and get BC again, either a recurrence in the same breast or a new BC in your other breast, will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you feel that you made the best decision at the time with the information that you had?
  • If you have a bilateral mastectomy and no more cancer (or even LCIS) is found in either breast, will you question (either immediately or years in the future) why you made the decision to remove your breasts? Or will you be satisfied that you made the best decision with the information you had?

Thinking about how you would answer these questions can help you decide what's the right thing for you to do.

By the way, my situation was that I had DCIS along with a microinvasion of IDC.  Because I had so much DCIS in my breast, I had to have a single mastectomy.  My decision was to stick with a single and not have a bilateral.  I know my risk level to get BC again (in my remaining breast) and I can live with that risk. For me, keeping one natural breast was important and I didn't want to undergo reconstruction - and the uncertainty and possible problems that come with that - on both sides.  For you, what's important might be completely different and that could lead you to a very different decision.

Good luck!  This isn't an easy decision, I know!

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jul 22, 2010 03:52PM kira1234 wrote:

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

Dx 6/1/2010, ILC, <1cm, Stage Ia, Grade 1, 0/1 nodes, ER+/PR+, HER2-Surgery 07/10/2010 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Radiation Therapy 08/03/2010 InternalHormonal Therapy 10/05/2010 Aromasin
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Jul 23, 2010 08:11AM suzieq60 wrote:

Jen,

I had a Grade 3 11mm pleomorphic Lobular HER2+ve tumour with extensive LCIS found. I had a lumpectomy followed by chemo (because of the HER2 status) and radiation. There is no way I would have both boobs chopped off. I have had 2 opinions regarding my treatment and follow up and am happy that I have chosen not to be so radical. LCIS is not cancer!!! It is misnamed and is considered to be neoplasia. This website has good information regarding LCIS and it's treatment. Look under Symptoms and Diagnosis up the top and then go to Types of Breast Cancer.

Sue

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009

Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jul 23, 2010 08:26AM KorynH wrote:

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) Undecided. 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.

KorynH -age 44 at diagnosis (2008) , IDC 1.6cm , ILC 1.6cm ,Rt. mast. 10/08, 0/6 nodes,stage 2a, gr. 3, ER+/PR+, Her2NU+++, BRCA Neg.,TCH chemo 12/08 - Herceptin completed 12/09, T.E., silicone implant exchange July 2009

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Jul 23, 2010 09:01AM KellyMaryland wrote:

Everyone has a different threshold, a different feeling about what they can handle and what they can't. I wouldn't ever negate someone else's feelings or decisions about what they do with their own body.

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Jul 23, 2010 10:51AM MistyJ wrote:

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. :)

MistyJ:)

Dx 2/2010, LCIS, <1cm, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Jul 23, 2010 12:24PM fortunate1 wrote:

Hi Jen,

So sorry you have to join us in these hard decisions. My suggestion. As you read about BC and all its variables, compile a list of questions for your oncologist. Your invasive component is very small and there are no lymph nodes involved. Why are they staging you at ll ? Do you have a bad family history? Would radiation be enough? A bilateral might be what you end up wanting, but I'd sure ask a whole lot of questions of your oncologist first. He or she is the one who will be planning your treatment with you. Ask questions until you feel well informed and the decision will get clearer. It's so hard... good luck. Let me know if I can help.

Single mast, one-step with Alloderm and implant; no radiation, oncotype 20.5, no chemo, Femara.

Dx 12/10/2008, ILC, 1cm, Stage Ib, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jul 23, 2010 03:55PM, edited Jul 23, 2010 03:57PM by Beesie

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.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jul 23, 2010 05:02PM suzieq60 wrote:

Sorry for the blunt Aussie expression. I didn't mean to offend anyone. I do however think having a bilateral mastectomy for LCIS is way way over reacting.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009

Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jul 23, 2010 05:19PM fortunate1 wrote:

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? 

Single mast, one-step with Alloderm and implant; no radiation, oncotype 20.5, no chemo, Femara.

Dx 12/10/2008, ILC, 1cm, Stage Ib, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jul 23, 2010 05:27PM lisa-e wrote:

Beesie, +1,000 for your post.  I totally agree with you.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction

Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2-
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Jul 23, 2010 05:30PM KorynH wrote:

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.

KorynH -age 44 at diagnosis (2008) , IDC 1.6cm , ILC 1.6cm ,Rt. mast. 10/08, 0/6 nodes,stage 2a, gr. 3, ER+/PR+, Her2NU+++, BRCA Neg.,TCH chemo 12/08 - Herceptin completed 12/09, T.E., silicone implant exchange July 2009

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Jul 23, 2010 06:20PM MistyJ wrote:

It is not so much the harsh words that are your opinions that I find disrespectful.  It is the attitude of a BMX being "way way overreacting". That implies that my decision is wrong and that I am being dramatic or overreacting.  It does, and you can not sugar coat that. I may have some residual resentment toward Suepen's posts because earlier in the year when I was trying to make the decision on what path to take, Suepen posted her opinions on BMX for LCIS in a manner that made those considering it feel as if they were doing something wrong. This was the very thing I was struggling with, worry about how others would view my decision.  This is the situation some LCIS woman find themselves in.  I feel that there is a difference in being told your options are to have one or both breasts removed due to a cancer diagnosis, and being told you have the option to remove both breasts to prevent the cancer diagnosis.  While the woman who have no choice but to remove at least one breast may view it more as an amputation, you are not allowing for the fact that some woman are very informed and actually choose this path.  I think if the path is a chosen one, it may be easier to deal with the emotional repercussions because we have not been forced in to it.  I am not saying a woman should not thoroughly investigate all possibilities and be very very sure of the decision.  I am also not saying bluntness and honesty may not help a woman understand the true path she is taking.   However someone who did NOT choose that path really can not give an honest offering of what it entails.  They can say that it is not the correct path for them.   What I am saying is that it most certainly is disrespectful to me and I find it very offensive to have someone tell me that I overreacted and that is what I got from the first post.

MistyJ:)

Dx 2/2010, LCIS, <1cm, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Jul 23, 2010 07:12PM suzieq60 wrote:

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!!!!

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009

Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jul 23, 2010 07:43PM MistyJ wrote:

I did not ask for your opinion. 

MistyJ:)

Dx 2/2010, LCIS, <1cm, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Jul 23, 2010 10:19PM leaf wrote:

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.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jul 24, 2010 04:10AM JP2010 wrote:

I can see that I'm not the only one with conflicting emotions about this topic. There's certainly a plethora of different feelings about this topic, and it is extremely (and probably surprisingly) comforting to receive such passionate responses. It just shows how much you have all thought about your decisions. Congratulations.

Thanks Beesie for the amazing list - it will be very helpful as I rake through my own (conflicting) emotions.

Thanks to all of you for providing a forum in which I can feel completely supported and informed.

What I know about LCIS is this: it can be profuse, it is often bilateral, it forms ‘sheets' rather than lumps, it almost always often goes undetected other than from a biopsy for another issue. The factor that is most worrying to me is that if a woman has LCIS, she has a 1 in 5 chance of developing BC over 15 years.

Because I've ALREADY developed BC (albeit 1mm of it!) that means I'm the 1 in 5.

I've been offered 6 weeks of radiation, but have not yet made the decision to do it. Having the lumpectomy means that my 1mm LCIS is gone, but without radiation there is a 30% chance of it coming back. WITH radiation, that drops to 5-6%. But that's only for a recurrence of THAT particular tumour. What about the other LCIS... they didn't get clear margins on the LCIS during the lumpectomy, nor can I be sure if it exists in other locations in the same breast or in the other breast. The radiation doesn't affect the percentages of another tumour being ‘seeded' from the remaining LCIS - so it's still 1 in 5 (and I already know I'm one of the 1 in 5). See my thought process?

I am still weighing up my feelings about whether I can stand the 6monthly terrors, or whether I'm willing to give up my breasts. I know that without the possibility of reconstruction I am not sure whether the decision would be so easy, but that's more thinking for me to do.

I've just turned 41, I have two little boys (3 and 5) and a gorgeous supportive husband. So I want to be around to enjoy AT LEAST another 41 years. It's a tough decision and I thank you all for your (varied) input and offers of encouragement and support.

X Jen

Dx 6/29/2010, ILC, <1cm, Stage I, Grade 2, 0/2 nodes, HER2-Surgery Lumpectomy (Right); Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent), Nipple reconstruction (Both)
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Jul 24, 2010 09:42AM KellyMaryland wrote:

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

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Jul 24, 2010 10:15AM MistyJ wrote:

Hey Jen,

So I don't know anything about radiation as I did not have to have any, but I am surprised they are leaving the decision up to you for that?  I guess I would have thought they would say to you, "this is the route we recommend for the best prognosis".  So basically the radiation would help lower the recurrence risk from the original invasive, but the risk remains high for other areas due to the LCIS is what you mean by your 1 in 5?   

As far as the 6 month cycle, I did it for alot of years.  It is not the most fun, but it really is. not the worst either.  If you are able to let go of the stress except during those times that is.  I never really thought the Mammos hurt as much as some women said so that did not bother me and the IV was the only thing that hurt during the MRI.  I figure you can look at it like "oh no what if they find something"  or you can look at it like "thank goodness I am having these tests done so often so that if they find something it will be early".  Does that make sense?  It helped me to look at it as another safeguard to help ease the worry.  That is as long as you get clear tests each time. 

Remember reconstruction can be done and look very close to normal, but the feeling you have left is very very different.  My breasts were always small and never really were a big part of my life or sex life.  To me the benefit of lower risk was worth the loss of two things that never really defined me and had caused problems for me anyway.  Some women truly feel a major loss.  You would really need to think that through.  One thing I do know is that what is right for you should come to you especially after doing more research as you seem to be doing.  It really does just have to be right for you and your family.  Lucky you for a gorgeous and supportive husband!!! :)  That will help.  My husband loves me unconditionally.  We have a wonderful relationship and he is my best friend.  I do wonder if I might have felt differently if I was not so secure in my self and my relationship?   I also wanted to guarantee I would get the longest possible time with my children.  I don't like to gamble on any odds, so give me the greatest in my favor.

Anyway, it sounds to me like you are on the right path(course teehee) to make a well informed decision.  I wish you well.  Misty

MistyJ:)

Dx 2/2010, LCIS, <1cm, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Jul 24, 2010 11:31PM macksix6 wrote:

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.

PLCIS - Bilateral Stacked Diep 9/24/09

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Jul 25, 2010 12:06AM JP2010 wrote:

I have been recommended the 6 weeks of radiation - I probably didn't make that clear that this is the routine course of treatment in this country (it seems) for an invasive component. But it only deals with the invasive component - nothing else that might develop in the future. However it would certainly cut anything down in its tracks elsewhere in that breast!

The double mastectomy option is only something I have considered through research, nothing they have offered me (let alone recommended).

Do any of you know the extent of your LCIS. I notice that Kira1234 has 1mm with her 6mm ILC. Mine seems to be quite profuse, I had a section of tissue (wide local excision) removed of 8.5cm x 4.5cm x 1.5cm and they found a lot of LCIS and didn't get clear margins.

It seems our bodies are all vastly different things (but I guess I already knew that).

Hmmm... my 'second opinion' appointment with Oncologist is on 3 August and I have a meeting with a geneticist on 5 August. My questions will fill the two hours I'm sure!

Hopefully after that I can be closer to a decision.

Dx 6/29/2010, ILC, <1cm, Stage I, Grade 2, 0/2 nodes, HER2-Surgery Lumpectomy (Right); Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent), Nipple reconstruction (Both)
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Jul 25, 2010 11:03AM MistyJ wrote:

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 :)

MistyJ:)

Dx 2/2010, LCIS, <1cm, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Jul 25, 2010 12:11PM leaf wrote:

JP - I agree with Misty that we really don't know how much LCIS each of us has. That's because there is no reliable way of detecting LCIS except by biopsy, so the only way they have of knowing how much LCIS one has is by bilateral mastectomies.  LCIS is often an INCIDENTAL finding found not at but adjacent to the lesion that prompted the biopsy.

Here are some studies that have looked at whether the presence of LCIS along with invasive cancer  causes a difference in recurrance rate.

The presence of LCIS was independently associated with higher rate of IBTR and TR/MM after BCT for invasive breast cancer. LCIS may have significant premalignant potential and progress to an invasive IBTR at the site of index lesion. The adequacy of excision of LCIS associated with invasive carcinoma should be considered in patients undergoing BCT. http://www.ncbi.nlm.nih.gov/pubmed/16965988

Presence of LCIS, even at the margin, in BCT specimens does not have an impact on LR. Re-excision is not indicated if LCIS is present or close to margin surfaces. These findings do not support consideration of LCIS as a precursor to the development of invasive lesions.http://www.ncbi.nlm.nih.gov/pubmed/18506537

The authors conclude that the presence of LCIS significantly increases the risk of an ipsilateral breast tumor recurrence in certain subsets of patients who are treated with breast-conserving therapy. The risk of local recurrence appears to be modified by the use of tamoxifen. Further studies are needed to address this issue. Copyright 2001 American Cancer Society. http://www.ncbi.nlm.nih.gov/pubmed/11346867

As you can see, they don't all come to the same conclusion.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jul 26, 2010 11:48AM yogamom wrote:

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!

Dx 1/5/2010, ILC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+
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Aug 3, 2010 08:24AM JP2010 wrote:

Well, I had my 'second opinion' meeting with another Oncologist today. We discussed my entire situation in great detail (as you would expect). She was much more approachable than the original guy, so I am feeling less guilty about seeking the second opinion.

In any case, the discussion ended up being about Prophylactic Bilateral Mastectomy. She seemed sheepish to suggest it, but she didn't realise I had been thinking about just that thing for the last three weeks.

I'm feeling releived that I have found a medical professional who shares my concern about the LCIS. The path seems a lot clearer now.

I've made another appointment to see her in two weeks, in the meantime I'll talk to as many people as I can who have had the surgery, explore more websites, and 'google' the surgeons she has mentioned. So I can be sure I'm ready to take that path.

Then the journey will begin... I will keep you posted.

Dx 6/29/2010, ILC, <1cm, Stage I, Grade 2, 0/2 nodes, HER2-Surgery Lumpectomy (Right); Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent), Nipple reconstruction (Both)
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Aug 5, 2010 05:16PM, edited Aug 5, 2010 05:23PM by eileen1955

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

Dx 10/28/2003, IDC, <1cm, Stage Ia, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Aug 23, 2010 07:19AM JP2010 wrote:

Hi yogamum,

How are you going with your decision making about bilateral mastectomy? I have finally made the decision and am in the process of the plethora of doctor visits leading up to a surgery date of either 30 September or 11 November. MRI tomorrow. Psychologist visit on thursday. Plastic surgeon on 1 September. Are you on that treadmill too? Email me on thrive@aapt.net.au if you fancy a 'chat'.

Jen

Dx 6/29/2010, ILC, <1cm, Stage I, Grade 2, 0/2 nodes, HER2-Surgery Lumpectomy (Right); Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent), Nipple reconstruction (Both)
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Aug 26, 2010 07:10PM maryabb wrote:

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.

maryabb

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Aug 26, 2010 10:02PM beckward wrote:

Yogamom,

I am same dx as you exactly, but chose a bilat. mast. right away.  No chemo (oncotype was a 5) and no rads.  I have to ask why you're not on Tamox, but doing Arimidex/Zoladex?  I chose no Tamox. because of other health issues.  Was discouraged when I investigated Zoladex or oopherectomy (sp?) .

Love my reconstruction, as does my husband.  Great experience and right choice for me. 

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