Meaningful and Meaningless

Momof6littles

The LCIS board is pretty quiet. So I'm going to post my rant. I'm sure there are other who feel the same way.

It's a diagnosis that is meaningless...it's not cancer, it won't become cancer (except if it does), but you might get cancer, but don't worry. Insert pat on the head by any number of health care professionals.

But it's meaningful enough that we want to give you hormone altering drugs with lots of side effects, eliminate your fertility, and stalk you every 6 months with imaging and biopsies.

But it's really a meaningless diagnosis. No, you can't have a prophylactic mastectomy because it's really overkill. Unless you are BRCA positive. But if you are BRCA negative, even if you have a huge family history and dense breasts, no surgery for you.

Ugh!

I am so tired of waiting and lack of clarity. I found out I have LCIS almost two months ago from a core needle biopsy. Had an MRI. Two aditional areas light up. One they decide is nothing. The other doesn't meet the threshold for malignancy, but it is surrounded by dense tissue. A Dense, flat, large area that I keep pointing out my concern over, that started to appear two years ago, but I keep hearing that there is no lump, so don't worry. No other biopsies needed. I first was told that they would do a lumpectomy of the LCIS area. Then the surgeon says it's not necessary because we don't even do surgery on LCIS. Unless you are BRCA positive. And I'm not. So see, nothing to worry about. And those pathology questions you have, it's not my job to tell the pathologist how to do his job.

I do have a referral to University of Chicago for a second opinion. May 3. This whole process is so frustrating. I would have no problem following a treatment or monitoring protocol if I felt like everyone was thorough, answered my questions, conveyed a sense of competency, and could be trusted to find a malignancy in the future. I have HMO insurance, so I'm really limited on who I can see. I'm lucky I got the second opinion.

So, there's my rant. Feel free to add to it. Or maybe post a positive story. One of LCIS diagnosis and monitoring done right.

MelissaDallas

I felt like you do for quite some time after diagnosis, but I have calmed down a lot over a couple of years. I can't take the meds and I am not going to ruin my life stressing over something that likely won't happen. If it happens I'll deal with it then. I can't afford an annual MRI with high deductible/out of pocket insurance. Mammogram and clinical exam are going to have to do it. Honestly, they really don't even know how many women have LCIS since it is virtually always an incidental finding. I have to say that in some ways I think these boards were bad for me at the beginning because it is not a very reprentative sample. For some reason the women who post on the board are mostly ones who have decided on mastectomy, when in "real life" most women with LCIS don't. I was just getting over very major surgery for ovarian cancer right when I was diagnosed, so I was terrified to think I "needed" MX. I was assured by my NCI Cancer Center that I don't. I worry more about heart disease & colon cancer, which both my Dad's mom & sister had.

Momof6littles

I think for me, hearing from a larger cancer center what I should do, will make me feel better. I get the feeling like the folks at my hospital just don't know what to do with me. I'm looking forward to the second opinion appointment. At least I will feel a sense moving forward. I just couldn't believe how much my doctors have had riding on the genetic testing. I kept asking what would we do if it comes back negative. No one wanted to say. Only to say what we should do if it came back positive (which it didn't).

Melissa, have you had success in asking questions and discussing things with your doctors? I ask questions and they don't answer, don't know how to answer, brush me off.

Also, you don't take the meds? I'm so conflicted on that. I don't want the side effects and I can't get my doctors to be strait with me about my risks and the benefits. Somewhere on this forum there is an interesting discussion about this. It looks like the benefits are not quite as high as I was led to believe.

Of course, my frustration probablylies in this still all being so new and unresolved. Can we just move on with a lumpectomy, final diagnosis, etc. I'm just stuck in this holding pattern.

Nopoli

Follow your gut Momof6titllrs. I've read that once you've been diagnosed with LCIS you're chances of having IDC or ILC increase significantly. Furthermore, it is very difficult to detect ILC on imagery. I had a 6 cm sclerotic lesions scattered with DCIS and LCIS and had a double mastectomy, because the lesion appeared to be a stage 3 invasive cancer pressing against my chest wall but the 2 biopsies showed only grade 2 and 3 in situ findings so they did not know what they're dealing with and had to go in to find out. Also my mother died from metastatic recurring bilateral breast breast cancer ( however I'm BRCA negative). Finally I did not want to be on Tamoxifen. As I said it turned out to be grade 3 and 3 DCIS, LCIS, and cancerozation of the lobules, with foci suspicious for micro invasion (although couldn't prove it histologically) and isolated tumor cells in 1 of 3 sentinel nodes. Well the surprise is that they found a grade 2 stage 1 ILC in the other breast. This ILC was not palpable and. Was not sen on 3D Mammo, MRI, nor the PET-CT combo scan. Unfortunately because they found an invasive cancer, I have to take Tamoxifen to prevent recurrence. So as I said, trust your gut. I did, and it saved my life. I hope you will be fine, but your are smart to get second opinions. So good luck and just try to stay calm as you persevere

Momof6littles

Thank you Nopoli for your input. I'm just going to keep pressing to get answers to my questions and then go from there.

Persevere. I like that word better than just"waiting."

Momof6littles

Ugh. My aunt just found out she has extensive LCIS. They are doing an excisional biopsy of the area next week because imaging looks very suspicious. Her sister (my mother) died from breast cancer. We're all on this stupid familial cancer train but BRCA negative

LLA8

I agree with the original post above...this is a frustrating diagnosis that seems contradictory. Patients are told that you don't have a "real" cancer diagnosis, and that it's usually just a marker for increased risk of future ductal cancer. That is, unless it becomes pleomorphic and invasive, which as I understand is what happened to the actress and singer Rita Wilson. I am still very confused about the odds of that happening with LCIS, and how it is diagnosed. I am grateful that Ms. Wilson has been so public about this happening, though, since that is the only way I heard about this possible risk associated with LCIS.

In my case, a grouping of calcifications led to a biopsy and LCIS diagnosis, and surgery results showed "extensive" LCIS, ADH, and FEA. I've been told that my overall lifetime risk of developing breast cancer is around 30%, but with the above diagnosis and very dense breast tissue, I can't help but think that my risk is higher. I decided to take Tamoxifen, with the only side effect being fatigue, primarily in the early evening starting around 6:00 (and some very intense, very crazy dreams the first 2-3 weeks that I took it, although thankfully that side effect has settled down.)

I'm also on the MRI alternating with Mammogram every 6 months schedule, and hoping that the anxiety of having to go in for the scans starts to lesson in time.

To the point of the original poster, the issue of trusting that a malignancy could be found in time is worrying indeed, and I understand why patients decide to have a preventative mastectomy. With no family history I am not a candidate, but if a "real" cancer is ever diagnosed, I hope that I can have this procedure and be done with all this.

Thanks for opening up the opportunity to "rant"!

Anonymous

momof6----I was diagnosed about 12.5 years ago with LCIS (had suspicious microcalcifications, tightly clustered on mammo) and my risk is further elevated by family history of bc (mom had ILC); they tell me my risk is about 35%. I took tamoxifen for 5 years and now still take evista for further prevention. I continue with high risk surveillance of alternating mammos and MRIs every 6 months, with breast exams on the opposite 6 months. LCIS is definitely a diagnosis in the "grey area", technically and pathologically an in-situ, non-invasive, stage 0 bc, but not considered a "real cancer" as it is non-invasive. (ironically, in-situ cancers found other places in the body (kidney, lung, bladder, cervical, etc) are considered "real cancer", even though they are non-invasive) and not thought to become invasive. Although my surgeon said it could, but a very low chance, <5%. An additional benefit of tamoxifen is that it decreases breast density, making it easier to detect any problems with mammos. I've been very fortunate, and have been able to tolerate both tamox and evista very well with very minimal SEs. (mainly just hot flashes, which I would've had eventually anyway!)/ however, I do recommend yearly transvaginal US to monitor both the uterine lining and the ovaries if you take tamox.

Anne