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Topic: LCIS - how do you handle cringeworthy reactions?

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

Posted on: Feb 14, 2018 04:45AM

msmuffintop wrote:

While it is true that I've been given a 95% chance of living beyond then next 5 years, I still feel my life has been changed forever by this diagnosis, by my surgeries and by my treatment. I don't know what to say when people dismissively chirp, "Get Well Soon!" or "You'll get better, you'll survive." (I feel like yelling "Hey! Life threatening disease happening here!")

Survive yes, but if the side effects of estrogen blockers is a complete lack of sex drive - - gee - - that seems like a shitty way to say thank you to my supportive partner. Isn't there a quality of life as well as a quantity?

on the other hand. . . no, I don't want to compete or compare with someone who has pancreatic or bone marrow Cancer. I don't want to pretend death is imminent (it is probably not.) I don't mean to be a whiner.

I'd rather never discuss my Cancer in public again, but well meaning people ask "How are you doing? "

I have no way of knowing if I am about to be ambushed with a litany of home remedies for Cancer. I.e." My cousin died because she wouldn't try marijuana oil!" or if the follow up will be, "Let me know how I can help."

what do you say when people dismissively react to your LCIS?

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Feb 14, 2018 05:01AM MelissaDallas wrote:

I don't discuss it with very many people, but I try to explain to them that it is not cancer, but a condition that may dispose me to be at higher risk of developing cancer in the future. I like telling people I have lobular neoplasia instead. That takes the "cancer" misnomer out of it.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Feb 14, 2018 07:02AM - edited Feb 14, 2018 07:03AM by Outfield

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.

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Feb 14, 2018 10:18AM msmuffintop wrote:

so if it will "never" kill me, what was the lumpectomy for? Now I really feel disgusted with myself. . . I've been dithering for awhile over whether to skip the hormone therapy. Sounds like a waste of time, right? Over something that never kills - - gosh what I don't know about Cancer could fill a book

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Feb 14, 2018 10:29AM Beesie wrote:

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?

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 14, 2018 10:32AM MelissaDallas wrote:

You had the excisional biopsy because in about 20% of the cases where LCIS or ALH was found on a needle biopsy they find something nastier lurking along with it. When nothing else is found then the endocrine therapy is to protect you from developing cancer, since you know now you are at increased risk. How much increased risk is dependent on a lot of other factors

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Feb 14, 2018 10:59AM Outfield wrote:

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:




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Feb 14, 2018 11:21AM feliciascintillation wrote:

msmuffintop- It was interesting to read your post and thread. I have researched the heck out of DCIS and IDC,but didn't know much about LCIS. I have been educated. :) Best of luck to you.

If you don't like something change it; if you can't change it, change the way you think about it. ~ Mary Engelbreit
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Feb 14, 2018 02:01PM Outfield wrote:

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.

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Feb 14, 2018 02:19PM msmuffintop wrote:

well as I understand it, the first lumpectomy was to remove the two small tumors, the second was to get a clean margin. The first two biopsy were to discover if the first then second tumors were cancerous (yes they were) and the third biopsy discovered a lump of dead fat tissue (not cancerous). No more surgeries followed, just radiation therapy.

I am quite certain I was told the cancer is lobular, not ductal.

I did not have any Cancer in my armpit lymph nodes, so no nodes were removed. . . and I am also quite certain the words lobular carcinoma in situ were used. In situ to indicate it had not spread. . . but I think I also must be scrambled because I wouldn't have been given a mortality rate if my cancer never kills, so somewhere I missed something in my pathology I should probably post on a different thread - -

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Feb 14, 2018 05:02PM - edited Feb 15, 2018 06:00AM by Outfield

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

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Feb 15, 2018 12:03AM NotVeryBrave wrote:

msmuffintop - If you don't already have a copy of your pathology report, you should get one. That would probably help to clear up a lot of things for you. It's also just important to have on hand for the future.

We often can't process everything that is being said to us by our doctors at the time. And some of them are not so great about explaining things, either.

TCHP x 6 with pCR. One year of Herceptin. DTI pre-pec surgery. Quit Tamoxifen after 3 months. Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/18/2016 Perjeta (pertuzumab) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/9/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 15, 2018 03:11AM msmuffintop wrote:

ok so I looked at my pathology report this morning and it does say "invasive" and it does say "lobular" so I guess this whole thread is in the wrong forum. Apologies

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Feb 15, 2018 05:57AM Outfield wrote:

msmuffintop - no need to apologize, and you will definitely get answers to your original questions in the post. A lot of us have had those experiences you describe.

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Feb 15, 2018 10:28AM Beesie wrote:

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!

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 15, 2018 02:55PM - edited Feb 15, 2018 02:56PM by LizzieP123

Nearly two months since my lumpectomy, and 4 more days of radiation. I am about to go to a party where I'm sure it will come up. I have tried so hard to keep this extremely personal experience extremely private, but to my great dismay the word is out. I really had wanted to get both feet solidly under me before I called a press conference! I'm in the process of deciding what to say, and I'm thinking it's going to be: "thank you for your interest -- I prefer not to discuss it (at a party, over dinner, here in the grocery store, etc.)."

If they start telling me their cancer stories -- my college roommate , my aunt, my dog, (whoever had cancer) -- I'm going to say "my therapist (that's me) says it's bad for my mental health to listen to cancer stories, so let's change the topic". If they won't change the topic, I'll say "it's been nice to see you", and turn around and walk away.

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Feb 15, 2018 09:02PM Beatmon wrote:

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

Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/8/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 11/30/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/30/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/26/2014 Herceptin (trastuzumab) Targeted Therapy 8/26/2014 Perjeta (pertuzumab) Chemotherapy 8/26/2014 Taxotere (docetaxel)
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Mar 30, 2018 12:22PM Lea7777 wrote:

"Thank you for your concern." That comment is very versatile, regardless of your diagnosis or what is said to you.

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Aug 27, 2018 09:03AM Gusta wrote:

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!

Dx 6/1/2018, LCIS, Right, ER+ Surgery 6/13/2018 Lumpectomy: Right Radiation Therapy 9/16/2018 Whole-breast: Breast
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Aug 27, 2018 10:52AM Michi wrote:

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..


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

Dx 4/12/2018, LCIS, Right, <1cm Surgery 5/21/2018 Prophylactic mastectomy: Left, Right; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement
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Sep 4, 2018 08:00AM Druanne wrote:

Hi everyone! I am 6 days out from my nipple/skin sparing bilateral mastectomy that went direct to implant!!!!!!! (Didn't know it was going to be that till I woke up!) Anyway..... 7 years ago I had a lumpectomy for IDC on my left side with radiation. This last MRI showed I had 6cm of LCIS in my right side. My genetic testing showed I have a TP53 gene mutation (li-fraumeni syndrome) which makes me highly susceptible to many types of cancer so I just decided to have them both removed. There really isn't a lot of info about LCIS. I tried to research what I could but felt with my other risk factor this was the correct path for me to take. :)

Dx 11/28/2011, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/14/2011 Lumpectomy: Left Dx 5/31/2018, LCIS, Right, 6cm+ Surgery 8/27/2018 Prophylactic mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast
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Sep 4, 2018 08:51AM beach2beach wrote:

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..SillyHeart

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 13, 2018 11:55AM JoE777 wrote:

Maybe they need to look up what the letters stand for. I hate when people insinuate you just got a "get out of jail free card"! You have a right to be concerned with the decisions you may have to make that they may never face. Hang in there. Hugs and Peace

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole) Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Oct 29, 2018 05:26AM funthing42 wrote:

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


Dx 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2- Hormonal Therapy 6/5/2009 Arimidex (anastrozole) Surgery 6/5/2009 Lumpectomy: Right Radiation Therapy 8/1/2009 Whole-breast: Breast Hormonal 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 Chemotherapy 2/1/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/1/2014 Herceptin (trastuzumab) Dx 10/1/2014, IDC, Right, <1cm, ER+/PR-, HER2- (FISH) Hormonal Therapy 11/1/2014 Aromasin (exemestane) Dx 2/2016, IDC, ER+/PR-, HER2-
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Oct 29, 2018 08:03AM MelissaDallas wrote:

I don't think anyone with "LCIS only on this thread will be able to answer your questions.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Oct 29, 2018 12:07PM funthing42 wrote:

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

Dx 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2- Hormonal Therapy 6/5/2009 Arimidex (anastrozole) Surgery 6/5/2009 Lumpectomy: Right Radiation Therapy 8/1/2009 Whole-breast: Breast Hormonal 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 Chemotherapy 2/1/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/1/2014 Herceptin (trastuzumab) Dx 10/1/2014, IDC, Right, <1cm, ER+/PR-, HER2- (FISH) Hormonal Therapy 11/1/2014 Aromasin (exemestane) Dx 2/2016, IDC, ER+/PR-, HER2-
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Oct 29, 2018 02:05PM sherrmue wrote:

it can be difficult to listen to all the nonsensical things people say. Half of the comments come from “armchair experts” who know nothing about cancer. The other half from folks who are terrified of getting cancer. Cancer is not one disease, but hundreds. What kills or inhibits ones does nothing for another, so all of the cures and diets, weird treatments are unlikely to help and may even harm.

I’ve been stage IV for at least 10 years. I’ve heard everything, just like you have.

Several years ago my “friend” very matter of factly stated “at least you know when you are going to die”. I ended our relationship shortly after and I’m alive four years after her statement. No, I don’t know and can’t unless it’s impending and I’m conscious. None of us do.

One of my sons told me a friends mother cured her cancer by drinking camomile tea. He became angry when I told him it’s likely she never had breast cancer and it’s much too late in my case for miracle cures. Unless I’m hit by a car I am most likely to be run over by cancer. Those are the facts.

Tell any person (even family) who is talking to you in an offensive or ignorant way that what they are saying is not helpful and you insist they stop. Express what you would like to talk about or do with them and reinforce that your requests are the most helpful to you. Arm yourself with a bit of information related to your condition so you can clearly state things like “that doesn’t have anything to do with it” or “I’ve had a lot of suggestion and cures. They are unlikely to fix this” and so on.

Good luck

Dx 7/24/2010, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 15/30 nodes, ER+/PR+, HER2- Dx 10/2010, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, ER+/PR+, HER2- Dx 10/2014, ILC, 6cm+, Stage IV, metastasized to bone/liver/other, Grade 2, 15/30 nodes, ER+/PR+, HER2-
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Dec 7, 2018 04:09PM princessfluffybritches wrote:

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.

Surgery 7/12/2018 Targeted Therapy 7/13/2018 Ibrance (palbociclib) Hormonal Therapy 7/13/2018 Femara (letrozole) Dx 7/21/2018, ILC, Left, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2-

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