LCIS - how do you handle cringeworthy reactions?

I'm really not trying to be harsh, but if you had LCIS you didn't have "cancer." LCIS itself will never kill you, it's just a marker for being at risk for more serious breast disease that could kill you. If you've been given medication, it's not to "treat" the LCIS: it's to prevent something nastier from happening. It's really not even the same as DCIS, which more controversially does straddle a semantic line between being and not-quite being "cancer." For DCIS, there is a definite path of progression the specific area of abnormal tissue can take to become to invasive cancer (the situation where nobody disagrees it's cancer), the only question is whether or not a particular area of DCIS will keep mutating down the path and cause cancer in that spot. That doesn't mean you don't have to think about the potential for cancer astronomically more than the average person, but it's different than actually "having cancer."

That said, I'm not sure why people would react dismissively toward it. If you're talking to people in treatment for invasive cancer, they'd probably trade diagnoses with you in a heartbeat - it can be difficult to be empathetic in that situation. But if you're talking to people who aren't in that situation, it seems like it should be a big deal. If it were me 10 years ago, I'd be shocked and worried, and wondering what the rest of my life will be like having to deal with heightened risk forever. Like being diagnosed BRCA positive, but I think more people are familiar with that term. I'm not sure how many people know what LCIS is - some of it may be lack of understanding, and it might be easier to come up with a catch phrase as Melissa above mentioned. When asked to explain my own lymphedema sleeve, I have come to the point where I always say, "You know those black compression stockings older people wear when their feet swell? It's the same thing because my arm swells." Putting it into some kind of framework that's familiar without giving a whole lot of details definitely helps. I wouldn't even give it a name, I would just say I had a condition that puts me at enough increased risk for breast cancer that I am doing treatment to decrease the risk.

Medications that work hormonally do suck. They suck for men taking them for prostate cancer, they suck for us. That's something I don't talk about with people who don't take or haven't had to consider taking them. It gets too personal too quickly, too far into TMI areas. When I'm asked, it's another time I have a catch phrase to fall back on, "Yes, I'm done with chemo and radiation, but I have to take medications with difficult side effects for possibly the rest of my life." If you use a word like "difficult" or "unpleasant," most people don't ask further.

I don't have a tagline, but if it matters: stage III a vs. c (some discrepancy between healthcare systems) IDC, DCIS, LCIS, have had bilateral mastectomy and SNB with ALND on R/DD ACT/regional radiation, starting year #6 anastrozole.

msmuffintop, in one of your other posts, you mention your Radiation Tech. Did you have rads after your lumpectomy? Rads isn’t given for LCIS, so if you had rads, perhaps your diagnosis is a combination of LCIS plus invasive breast cancer. That would be very different than pure LCIS.

Do you have your pathology reports from your biopsy and surgery?

Not everybody would do a "lumpectomy" for LCIS. Sometimes cancer does develop out an area of LCIS, but the big thing it is a marker for is an overall increased risk of breast cancer. Did you read the BCO page? It's definitely not butt-crazy to remove it, but the real issue is that you need to have a plan to monitor the rest of your breasts for invasive cancer and/or lower that risk. That's why the hormonal therapy is actually more important than the removal of the area of LCIS. I'm not saying you should/shouldn't do hormonal therapy, but the concept of how to think about improving your chance of not having to deal with breast cancer is really different than how we usually think of breast cancer itself. With cancer, it's important to remove or kill it all, and most of the time it starts in only one place so it's very important to remove the tumor and make sure the edges are free of the cancer. LCIS isn't like that. Think of it really as more similar to having been diagnosed with a gene that puts you at risk for breast cancer. They can't "remove" the area of breast that is at risk unless both the breasts are completely removed, which isn't so incredibly far-flung that nobody every does it for LCIS. I don't know the stats on what people choose, but my impression is it's more common to monitor more closely, either with or without hormonal therapy. Hormonal therapy is something you can do that treats the whole breast in a systemic way, with the goal of reducing the risk of cancer developing anywhere.

Also, was your diagnosis known at the time of lumpectomy? If not, then it is called an "excisional biopsy," and it totally makes sense that they removed it if it were either something they could not reach by needle or core biopsy or something that they didn't feel they'd gotten a good sample of with the core. Another reason to remove LCIS is if an initial biopsy shows some concerning features and they want to make sure that's all that was in the spot. Like any other of these acronyms, "LCIS" encompasses a group of similar-looking abnormalities, some of which are more worrisome than others. If you have a biopsy and there are worrisome features, it's not crazy for a doctor to recommend the whole "lump" be removed. Removing tissue that way ensures that if the area has a mix of abnormalities they are all identified, and it also provides a better sample for the pathologist to look at than a needle or core biopsy does. And honestly, if it were me, given that there is some risk of transformation into cancer, as long as they were mucking around in the tissue trying to figure it out, I'd just want the damn thing out of my body.

So don't feel disgusted with yourself, you didn't get an "easy" diagnosis like a fibroadenoma.

Here are some links to other information sources:

http://www.breastcancer.org/symptoms/types/lcis/tr...

https://www.drsusanloveresearch.org/lobular-carcin...

https://www.mayoclinic.org/diseases-conditions/lobular-carcinoma-in-situ/diagnosis-treatment/drc-20374535

msmuffintop, I must've been writing at the same time as Beesie. You had radiation treatment?

If so, I'm wondering if something got scrambled when they told you your exact diagnosis. Do you have a copy of your pathology report? If you had anything in addition to LCIS, then much of the responses above don't really fit. Most diagnoses - the exception I can think of off the top of my head is ADH - trump LCIS. Treatment (with some exceptions, not worth getting into here) is aimed at the worst of the diagnoses.

If you're sure the surgeon said "lobular," referring to a cancer (which certainly fits with the radiation), then the acronym would be "ILC" for "invasive lobular carcinoma." It's definitely possible to have both ILC and LCIS. It's also possible (and not uncommon) to have LCIS with invasive ductal carcinoma (IDC), so just knowing that you had "cancer" and LCIS doesn't mean for sure that your cancer was ILC.

The "in situ" part of LCIS does not mean that the cancer has not spread to the lymph nodes. "in situ" is a term used for precancerous cells in all types of body parts, and what it means in plain English is that the cells have become very abnormal, so abnormal that they look a lot like cancer, but they haven't yet gained the ability to leave the structure where they started growing. They can't metastasize (cancer in lymph nodes is technically a metastasis) because they can't - by definition - leave where they have started. "Ductal" "in situ" cancer cells are stuck in the ducts, and "Lobular" "in situ" cancer cells are stuck in the lobules. On one of the links I posted above, there's a picture showing LCIS cells just stuffing a breast lobule - but that's it, they're stuck there and unless they mutate and become even more abnormal, they won't get out and cause serious harm. In situ disease can definitely create lumps by stuffing things tremendously full of abnormal cells, but they can't go outside their own breast structures.

When cells become so abnormal that they start being able to push into other tissues, for example "lobular" cells that mutate so they can push through the wall of the lobule, they are no longer considered "in situ" and are considered "invasive" cancer cells. This has to do with a fundamental change in the abormal cells, like a fish suddenly mutating to have lungs and wiggling up on sand. It's not a result of them just reaching some critical mass and bursting out. Being "invasive" also does not have to do with size. It can be "invasive" and remain in only a tiny area of the breast. Many women with ductal carcinoma in situ (DCIS), have HUGE tumors because the cells can spread quite far through all the ducts, but that does not make it "invasive" cancer. My own DCIS was pretty much my entire right breast. On the other hand, there are women with invasive ductal carcinoma (IDC) whose cancer is so small it's less than 1cm. Whether it is "invasive" is a determination made on a microscopic level looking at the tumor itself. They do not even have to examine a lymph node to determine that the cancer is "invasive." Lots and lots of women on these boards have diagnoses of ILC or IDC (invasive ductal carcinoma), but their cancer did not spread to the lymph nodes. Cancer does not have to spread to lymph nodes to be considered "invasive."

So, in summary:

- "in situ" means in the particular tissue structure where it started

- "invasive" means that the cells can push through the boundaries of the structure where they started

- lymph node status is a separate thing, it doesn't have anything to do with determining whether disease is "invasive"*

I hope I explained that reasonably. Do you have your pathology report? Knowing your own diagnosis for sure is definitely useful as you navigate through all this.

*The exception would be if the pathologist has only seen "in situ" disease in the main tumor, but there is cancer in a lymph node. That's rare, but it's not impossible. Pathologists cannot examine every single bit of the original tumor, so if the part that turned invasive just didn't happen to be put on a slide they may not have seen it

msmuffintop, when we are diagnosed, we are thrown into a completely new world that most of us know nothing about. No need to apologize for having been confused. At least thanks to this thread, you now have a better understanding of your diagnosis. It’s just unfortunate that you, and the rest of us here, have had to learn all these things about cancer!

Enough about me! Tell me all about what’s going on with you...dogs, kids etc. people do like to share their lives. I’m bored with talking abou me everyda

I'm new here, but jumping in to say how much I appreciate msmuffintop bringing this up.  I've recently been diagnosed with pleomorphic LCIS, and while everyone around me seems to be celebrating that I'm "cancer-free", I'm not feeling the joy.  There's no question that this diagnosis is better than many, but it's still a big bad deal to me, and that's compounded by the lack of information available.  I feel like a whiner, too, and pathetically validated by needing radiation!  
I'm blessed to have a wonderful circle of family and friends, but that does involve so many, many phone conversations, and some definite cringing.  I appreciate the discussion and the practical suggestions!

Hi Gusta-

Welcome, and sorry to hear of your diagnosis.. I too had LCIS, some of which was plemorphic, or so they thought. I chose the route of double mastectomy in May, will do the exchange surgery mid September. It’s kind of a weird diagnosis isn’t it? it’s extremely rare to most of the outside world, with limited research specifically regarding our condition, yet the treatment option is as severe as a cancer diagnosis many times. But yes, considering the alternative we should feel lucky. Don’t worry, I did tons of whining as well, and to be honest I was pretty terrified until I saw the final pathology report showing I was free and clear.

Since I was choosing the mastectomy route I found it easy to explain my situation was like Angelina Jolie, since everyone can relate with her, or at least knows who she is. I put on a pretty strong face for my family and friends, explaining it was a blessing we found this Ect ect..but behind closed doors I was pretty wrecked. I will say three months past the initial surgery I feel great, and back to life as usual working out, feeling good and 100% like myself again. Best of luck, this website is a great source of comfort..

Ps-

I spent many, many hours researching LCIS and as you have gathered information is extremely limited. if you go to the LCIS section of this website many women have posted the most relevant and current information out there. Start here

Just throwing in here that I was initially diagnosed on biopsy as IDC. Pathology at time of mastectomy was ILC/LCIS and DCIS..so possibly you had it both and maybe you did hear them say LCIS also.

On the topic though, I tend to ignore peoples well meaning but sometimes stupid remarks such as Oh, it's all gone, or Well anyone could step off a curb and be dead tomorrow...ya, got it. I'm lucky. Maybe thats what they want to hear,,yes you are right, I'm lucky. Makes one want to slap them in the back of the head sometimes..

My sister had lobular carcinoma in situ dx a year before me. They gave her Tamoxifen and said the cells were precancerous. Totally confused.

Below is mine dx timeline. I was told I do not carry braca gene.

But my CA had some lobular aspects which makes it difficult to treat. Hence my confusion.

x 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2-

Hormonal Therapy 6/5/2009 Arimidex (anastrozole)

Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast: BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)

Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+

Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left

Targeted Therapy 2/1/2014 Herceptin (trastuzumab)

Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)

Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane)

Skin mets Sept 2015

3/2016, IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation was finished . Pet scan then revealed left lymph node involvement. Her2- estrogen + progesterone-

Ibrance and fasoldex 2yrs

It shrunk to nothing markers normal no Ca.

But now on

10.10.18 markers up

Liver mets

Hmmmmm

You never know.......here's to hope......

I agree with saying nothing. I don't want to hear cancer stories and their "cures", or "I'm so sorry". Sherrmue, your post is so right. I don't tell anyone but a few closest people and that's it.