ALH to LCIS to BIRAD 5 on MRI to PLCIS to ILC

Anonymous · December 2009

Hi All

Back from my latest trip (again) and the results are in and I regret to say that it is just going from bad to worse. I really don't know how much more of this I can handle! I was trying to be optimistic and think that she was able to get clear margins and nothing else would be found. I was wrong.

First the doctor said that she was not able in her attempt to get clear margins on the PLCIS. She said the PLCIS was extensive throughout the sample. There is not clear margins on the outside and the bottom of the breast. She also kept referring to the PLCIS as though it were DCIS, as she said there is not enough information about PLCIS. She also mentioned that my case was taken to the tumour board and that is how they decided it should be dealt with (like DCIS)

Secondly, she said found within the PLCIS, there were two areas of Invasive Lobular Carcinoma. One of them measured 5mm and one measured 1mm.

She said more surgery is required as well the nodes need to be checked. Although she did say another lumpectomy could be done to try to get clear margins, she seemed to be leaning more towards unilateral mastectomy. Depending on if there is anything found in the nodes, that would determine the next step. When I asked about doing bilateral, she still seems to think unilateral would be all that is required at this point, of course unless I wanted it. She also said that immediate reconstruction may not be an option, depending on what the result is of the sentinel node biopsy. If radiation were to be required, this would not give the best result on reconstruction. When I asked how quickly I should do the next step, she said that technically it (the invasive) is out, so it should be dealt with, and that 1-2 months would be reasonable. She could do either lumpectomy or mastectomy in January, but if I wanted reconstruction that would take longer to coordinate. It would likely be a couple of months to be able to coordinate both surgeons schedules. That just seems to long to me. What if they find that it has gone into the nodes? I wonder how quickly other women that are diagnosed with ILC have their surgeries? Do they have reconstruction at the same time? What do I tell my kids? So far I have told them I have breast cancer, but I also told them the doctor would be taking it out with the surgery. It just seems like this is never ending. I am so scared and I don't want to scare them anymore. I guess I will have to move over to the ILC thread and ask alot of these questions. But I probably will hang around here as well, due to having the PLCIS as well. I don't even know where I belong anymore.

Cathy

cornellalum · December 2009

Cathy - I am so sorry to hear of your on-going struggle. I would think that the ILC is the most pressing issue that needs to be dealt with, but it sounds like the margins were clear on the ILC. I agree with you that nodes need to be checked ASAP.

As far as the PLCIS - the tumor board at my NCI-certified hospital just came back on my PLCIS diagnosis today (also from a lumpectomy, also throughout the specimen, and also at the margins), and said that clear margins are not only not needed, but not possible since PLCIS is multicentric and multifocal. I was told that PLCIS should not be treated like DCIS. So I got the same PLCIS diagnosis as you, but with a drastically different treatment recommendation. I was told that I did not need clear margins, so I didn't need more surgery, while you were told that a mastectomy is needed. How are we supposed to know what to do?

I don't know how old your kids are, but I would wait until you have a definitive treatment plan before telling them anything. It is gut-wrenching to tell loved ones - you don't want them to worry, but you have to tell them something. But remember that kids are always stronger than we give them credit for.

Please keep us in the loop over here on the LCIS thread. I am sending many hugs to you!

covertanjou · December 2009

(((((Cathy!!!)))

Oh dear! I am so sorry about your news. I would strongly suggest you take a couple of days before you make any decision about telling your kids. It certainly depends on how old they are. I think cornellalum's idea of waiting until you know your definitive treatment plan is a good idea. You can tell your family that you may need more surgery to make sure they get all the cancer, and then take it from there.

It is so awful that you have to go through this!!!

Anonymous · December 2009

Thanks cornellalum and Mary for your words of support, it really does help.

It is very interesting yet concerning that there is such differences of opinion on what to do with PLCIS. My surgical oncologist kept reinforcing with me that they really don't know enough about PLCIS, so based on what they do know, it has to be treated like DCIS and therefore required and still requires clear margins. I suppose in my case I should be thankful, because it was due to the PLCIS that they even found the 2 areas with ILC.

My children are 17year old son and 9 year old daughter, so although I keep trying to downplay things as much as possible to protect them and not freighten them too much, it just breaks my heart to have to tell them I have breast cancer. I know for myself, until I started reading on these boards, when you hear breast cancer, you just think the worse. So for now I have just told them I need to have more surgery, which means going away again. I have decided that I will have a bilateral mastectomy, which was very difficult making the call to say to book this surgery. I saw my medical oncologist here at home yesterday and he says without question to have bilateral and delay reconstruction until after we see what the results of sentinel node biopsy come back as. This is all so terrifying.

Thanks again for your support. It sure does help having other women to share these feelings with who can relate.

Cathy

leaf · December 2009

I'm so sorry this has happened to you. Uncertainty is so very, very hard. Its so very much harder when there is no concensus. It sounds like you have searched your heart and gut and found the best path for you. That is all that anyone could be expected to do in your situation.

It must make it so much harder to not only have yourself to think about, but your family, especially children. But I bet they are stronger than you think, and are taking cues from you how to handle this. I'm sure it is very good that you are not hiding your diagnosis from them- they would guess much worse if you weren't honest with them.

We all want to prepare ourselves and our family for anything that is ahead for us, no matter how good or bad it is. That is a natural, protective response we all have. Hang in there. We are here for you.

covertanjou · December 2009

Cathy,

I think your decision for the bilateral is a wise one.

I know this is hard, but you can come here for support anytime.

Leaf is so correct that your family is stronger than you think, and they take their cues from you. This is why you need to be able to come here and vent. You cannot keep your feelings bottled up, so please PM me if you need to talk.

(((HUGS))

Minnesota · December 2009

Hi Cathy and the rest of us who struggle with this diagnosis,

You may have seen a link to this article on the other pleomorph thread, posted by Omaha Girl, but I thought I'd add it here. It is very relevant to the discussion here about diametrically opposed recommendations for treatment. Also, I've taken the liberty of lifting out the sections most relevant to PLCIS and treatment. This was written by a gal at MD Anderson, where there seems to have been more study of PLCIS and possibly has been the first to come out with a "standard of care" for it. You may want to read the entire article - it isn't long - to get the context, as it also talks some about surveillance.This type of info is why I'm leaning toward PM on my non-pleomorphic (as far as I know) side.

http://nurse-practitioners.advanceweb.com/Article/Clear-and-Present-Danger.aspx

Clear and Present Danger

Suzanne Day is a family nurse practitioner who specializes in cancer screening and prevention at The University of Texas MD Anderson Cancer Center in Houston.
Posted on: October 1, 2008

LCIS is part of a spectrum of proliferative changes within the breast lobules known as lobular neoplasia. At one end of the spectrum is atypical lobular hyperplasia, which is identified in 19.5% of cases of invasive breast cancer. At the opposite end of the spectrum is pleomorphic LCIS, which is treated as a precursor to breast cancer. One of the challenges in dealing with lobular neoplasia is that the terminology is not consistent throughout all studies.

Classic LCIS is considered a risk factor for breast cancer and is associated with a 22.3% rate of invasive breast cancer.Pleomorphic LCIS is managed as a preinvasive breast cancer requiring surgical treatment. Little has been published about treatment options and outcomes for pleomorphic LCIS because it is a rare finding. In the past, it probably was misclassified as ductal carcinoma in situ.5

Need for Excision

Once the diagnosis of LCIS is made, determine whether further excision is needed, or consult a breast specialist. Women with LCIS are more likely than women without the risk factor to develop an invasive lobular breast cancer. Invasive lobular cancers can be difficult to identify with mammography. An invasive lobular cancer may present as an ill-defined mass. Consequently, any ill-defined area of architectural distortion that is visible on mammogram and determined to be LCIS on biopsy requires further excision.

Bilateral mastectomies appear to reduce breast cancer risk by approximately 90%.While segmental mastectomies may be useful to rule out an invasive cancer adjacent to the site of a known LCIS, unilateral mastectomies are not helpful as a risk reduction strategy due to the increased incidence of breast cancer in the contralateral breast. LCIS may be scattered throughout both breasts and may be present in multiple quadrants, making breast conservation surgery unfeasible. Researchers who used epidemiology data from women who developed invasive breast cancer after undergoing partial mastectomy for LCIS found that 46% of the breast cancers were diagnosed in the same breast previously diagnosed with LCIS - but 54% of cancers were identified in the contralateral breast.

Lastly, patients must realize that although bilateral mastectomies significantly reduce breast cancer risk, they will not totally eliminate risk. This surgery is only useful for the approximately 20% of women who ultimately develop breast cancer. Thus, recommend surgical consultation for women at greatest risk for developing breast cancer: women with pleomorphic LCIS and women with a strong family history of breast cancer in addition to a personal history of LCIS.

Anonymous · December 2009

Thanks so much for the article Minnesota. I had read and saved this when it was posted before, but it takes on a whole different meaning for me, given the situation I am now in. I am probably a perfect example of that 22.3% of women who go on to develop ILC. Since March 2009 until Nov 2009 I have gone through the whole "Lobular Neoplasia" spectrum. I don't have any family history, so the theory of that being a huge risk factor, turned out not to be the case in my situation.

March 2009 - Atypical Lobular Hyperplasia - by stereotactic biopsy

June 2009 - Lobular Carcinoma in Situ - excisional biopsy (note 1 foci LCIS, ALH to margins)

Oct 2009 - Pleomorphic Lobular Carcinoma - mri guided biopsy

Nov 2009 - Invasive Lobular Carcinoma & PLCIS - mri wire localized excisional (2 areas of ILC & PLCIS extensive with marginal involvement(

The ILC did not show up on mammogram or ultrasound, it only showed up on MRI. Radiologist from MRI indicated BIRAD 5 suspicious for DCIS. So even on the MRI, they didn't think it was necessarily ILC, but rather DCIS.

Since Monday I have spoken with 4 different doctors. Two of the doctors seem to be leaning towards unilateral mastectomy (surgical oncologist & surgeon) and the other two without hesitation, recommend bilateral (medical oncologist & family doctor). I was going back and forth between unilateral vs bilateral. Lets face it, nobody wants to have a mastectomy and I kept thinking if I can keep one breast, maybe that would make this horrible situation somehow easier to deal with. But after rereading this article, it reminded me how sneaky and easy this ILC is to miss. They all agree, that reconstruction should not be the main concern here, that the invasive cancer is the priority, reconstruction should be left for later. I think that as hard as all of this is, having to have a mastectomy, at least being able to reconstruction immediately would have made this awful pill easier to swallow.

Minnesota · December 2009

formykids,

You CAN have immediate reconstruction and still make the ILC a priority. It does not have to be either or! The best aesthetic results are obtained with immediate. I'm going to take the liberty of posting a link here - I hope people don't get sick of my always posting this link to my recon surgeon! He's a great resource tho. Anyone can post a question and he will answer it. If I were you, I'd give him a brief outline of your situation and ask his opinion about your reconstructive options and about immediate vs. delayed. Also about how you are feeling and about what your doctors are telling you about recon. You don't have to be his patient or intend to be his patient to ask. Gals from all over post questions. I totally agree with you - that focusing on what you do have control over - your reconstruction, something positive - makes the bad stuff much easier to swallow.

http://members.boardhost.com/plastic/index.html

Anonymous · December 2009

Hi Minnesota

Thanks for the link. They sound like such wonderful doctors there that they even respond to all the questions like they do.

I did get an appointment today to consult with a breast surgeon on December 21, which I am really pleased about. Unfortunately this surgeon doesn't do DIEP, and I think DIEP is the way I am leaning. At least this appointment I can get his opinion on immediate vs delayed and what the pros and cons are either way. I have also asked for a referral for a breast surgeon that does DIEP, but apparently she is not booking until February. I just don't know if I want to wait that long with the thoughts that this is spreading.

I keep wishing when I go to these appointments that someone tells me this has been a huge mistake. So far it hasn't happened, and I don't think it will.

Minnesota · December 2009

Formykids,

PLCIS is a difficult diagnosis to make because it's so rare. My pathologist had to send my samples to Mayo Clinic to a pathologist who specialized in breast cancer, in order to finally get the correct diagnosis. The guy here thought it was DCIS and invasive cancer. I have corresponded with a specialist in L.A. who I asked for advice regarding getting the other breast removed now, 3 years later. One thing he said was that, since my diagnosis had been made at Mayo, he felt comfortable advising me. I only say this because I also had the IDC diagnosis and then was basically told it was a mistake, like you're wishing would happen to you ... So be sure you do have confidence in whoever did your diagnosis and maybe consider a second opinion on the slides from another medical center, if you have any doubts.... If my pathologist had not finally admitted he was confused, I would have had chemo. Because he sent it to Mayo Clinic, I didn't have to. Just a thought.

Is the female DIEP doctor you were referred to Dr. Massey, by any chance? If so, she is now working with Dr. DellaCroce, who is the recon surgeon who has the Ask the Doctor site! I don't think there are very many female DIEP surgeons. There aren't that many DIEP surgeons, period. You need to be sure to ask lots of questions before deciding on a your recon surgeon and find out how many procedures they have done, ask to see before and after pictures and to talk to former patients, if you can. It's overwhelming, I know, but just be sure to do plenty of research. And think of it as the very positive part of all this crappiness! You'll get through all of this and, perhaps, be even better than new - which I know is hard to believe at this point. But for me, I am! (If only I didn't have this other breast to worry about - oh, well...)

Anonymous · December 2009

Cathy----a lot of women here have said it takes a few months to get the PS and the BS to coordinate their schedules, so it may take until February anyway, so perhaps you could get the DIEP surgeon that you want. Keep in mind that most bc has been forming in the breast for 6 to 10 years, so a few months shouldn't signifcantly impact things. (but of course, check with your physician). But if only the waiting were easy! (HUGS)

Anne

LeeMcC · December 2009

Hi formykids -- My personal belief is that BMX is the best way to go. And I think you could do immediate DIEP recon. Your situation sounds quite similar to mine. My LCIS only showed up on MRI, and then lumpectomy/biopsy confirmed extensive LCIS/PLCIS/DCIS mixed throughout. I had a 4mm IDC. I don't know where you live, but I had a WONDERFUL experience with Dr. James Craigie in Charleston, SC. He works with insurance and doesn't pressure for any payment in a any certain timeframe. The hospital was in-network for me, so I only had to pay $100 co-pay for the $96,000 surgical/hospital bill for the 4-day ordeal. I will only have about $4000 out of pocket for the surgeons. I am sooooo pleased with my results and not to have to worry about the other breast. I have a matching set, and I do not have to have another mammo. I am 10-weeks out and feel fabulous! My stage 2 in Dec. 29 (to keep it within insurance calendar year), and Dr. Craigie is very nice to do generous lipo.

Please feel free to PM me if you have more questions. I'm so sorry you are having to deal with the beast of BC. But stay positive!

Lee

Anonymous · December 2009

I questioned my surgical oncologist about whether or not there could be any question on the pathology. She was quite confident and said that my case had be taken to a tumour board and why it took so long to get results because they were being checked. The tumour board also agreed, that PLCIS found on core biopsy needed to be treated like high grade DCIS.

Although nobody ever wants there to be a mistake made where their health is concerned, I would welcome that right now.

My challenge has already been that the hospital that I am going to now, is my second opinion. Of interest, the pathologist at the hospital I was going to, had never even heard of PLCIS. He does now! So I guess this is a good thing. I am thinking that there is likely alot people in my city, that have been misdiagnosed, told they have DCIS, when in fact they may very well have PLCIS. So this should improve. As you can see, I am trying to find any kind of silver lining on this black cloud!

I suppose the other good thing that came out of this, is that my surgeon here at home, used to think ALH and LCIS was nothing to worry about. In fact told me to come back in 1 year, didn't believe in MRI for LCIS, didn't believe in tamoxifen for LCIS and that any women would ever consider mastectomy for LCIS was crazy. To quote him from one of my visits "I don't know what all the fuss is about", because my oncologist requested a MRI. Thank goodness he did!!! I have gone back to this surgeon, if nothing else to educate him and hope that he will treat LCIS more seriously, like it should be. I do have a much better relationship with him now and he has thanked me for keeping him up to date on my status, because he genuinely seems to want to learn. I think he will start sending any LCIS patients for routine MRI's.

The female doctor that I asked for the referral to is, Dr Toni Zhong, who is at Princess Margaret in Toronto. She apparently trained at Sloan. I did get an appointment today for consult for Dec 21 with her husband though. I have also found another woman doctor in London Ontario who does DIEP. I keep looking at the NOLA site, and see the amazing job they do and how pleased all the women are that have gone there. Financially, I think this is totally out of the question.

All of the doctors that I have spoken with so far, all seem to think do the mastectomy and then do delayed reconstruction. Not sure if this is because of the invasive component and/or the PLCIS and/or if they run into more surprises? I think the feeling is, due to the size of the 2 invasive areas, it would not be likely to find it in the nodes, but things have not progressed so far the way anyone would have thought. So far all of the doctors have said, "you are not a normal case". Not what you want to hear in any sentance with breast cancer attached. As if breast cancer is not complicated enough.

Minnesota · December 2009

For My Kids,

I'm totally with you on not wanting to hear that "you are not a normal case"! How crappy does it feel to thinking you have a rare form of breast cancer!? That's enough to send anyone screaming to the hills! I think that, under the circumstances, all of us have been pretty danged cool-headed! I just want to suggest that you not totally give up on the idea of going to NOLA, due to financial circumstances. They've taken lots of patients who had the same concerns. You might be surprised, and it couldn't hurt to make contact with them.

Anonymous · December 2009

Thanks Minnesota and maybe you are right, it can't hurt to ask, right? (since I am Canadian, I suppose I should be saying eh!)

Strangely enough, as I am sure everyone else who has had the misfortune of being diagnosed with breast cancer this all seems to be a bad dream. When I try to go to sleep at night, to help me stop thinking about everything, even if just for a little while and hope when I wake up this will not be true. It is true when I wake up, and not only is it true, but I have even worse nightmares when I am sleeping. Two nights ago, I woke up having had a nightmare that this will come back as stage IV and last night I had a nightmare that they will say for one reason or another that I am not a candidate for DIEP, even if that it was I decided I wanted. So NOLA did cross my mind. It sounds like they can and will do anything, and they do it well.

Kimber · December 2009

formykids,

so sorry for your diagnosis..I have been out of state at a family funeral and I was just able to check in. My good thoughts and prayers are with you. Please keep us posted on how you are doing!

(((HUGS)))

Kimber

ALH to LCIS to BIRAD 5 on MRI to PLCIS to ILC

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