LCIS considered being a survivor ?

panthrah

Controversial topic I know but some people refer to me as a survivor and others do not. Ive had two lx, which have been B9, prolly going to get another biopsy within the month which will probably lead to another lx. I don't think of myself as a survivor…maybe my husband is for dealing with me

So the arguments I've heard are:

• 1.You have been diagnosed with cancer you are here therefore you ARE a survivor
• 2.You have not had chemo or rads therefore you are NOT a survivor
• 3.LCIS isn't even a cancer so you are NOT a survivor
• 4.You've had 2 lx which counts for cancer treatments so you ARE a survivor.

Even my Doc within the same breathe said "LCIS isn't a real cancer but if you don't reduce your caffeine intake your cancer will come back"

Thoughts?

614

"2.You have not had chemo or rads therefore you are NOT a survivor" - That is one of the most ridiculous statements that I have ever heard! The treatment for many people diagnosed with bc is to have a mastectomy and no chemo or rads.  Not having chemo or rads does not negate a cancer diagnosis.

"If you don't reduce your caffeine intake your cancer will come back" - That is another ridiculous statement because caffeine does not cause cancer.  Caffeine may enhance fibrocystic changes but caffeine does not cause cancer.

What difference does it make what other people think?  You have been through a lot.  A diagnosis of LCIS is very stressful.  So is having abnormal mammograms/sonograms and having biopsies and lumpectomies.

Good luck.

panthrah

* hugs* thank you

MelissaDallas

I think it's kind of like having really bad allergies & feeling like crap for months at a time but not having the "excuse" of being sick.

It's not cancer, but the stepped up screening, especially MRIs, anxiety & side effects from the AIs if you take them are still pretty awful, but no, I don't consider myself a "survivor." I have a condition that elevates my risk. I'm probably at high risk for heart disease too, so I try to keep it in perspective.A lot of women who HAVE had cancer find the term "survivor" objectionable anyway.

panthrah

Melissa - I have to agree with you. I have high risk to get cancer , not that I already have cancer.. its not even a precursor to it.. more of a red flag warning. I dont use the term.. some think I should , some think I shouldnt. gray zone dx for sure

MelissaDallas

I try to bear in mind that the vast majority of women with LCIS will not develop cancer. They really don't even know how many women have it and never know it since it is always an incidental finding

panthrah

True. but it takes a damn toll on things. Ive seen the breast specialist more than Ive seen my dentist this year... and there are 4 more weeks left of this year

oneday

To be totally honest, I would consider you a survivor of a major health scare. But not a cancer survivor.

At one point in my diagnosis, one of the doctors told me he thought I might have DCIS only and I felt truly ecstatic. Sadly, it wasn't to be and I had to stop nursing my son the morning I started chemo. It broke my heart. But I still consider myself lucky compared to what many other ladies on here have endured.

Your prognosis is excellent. I think in time you will move on and hopefully experience healing. Best wishes.

panthrah

oneday- since Im on the "M&M" (mammo/mri) plan.. in between appts Im golden.. Making the next appt... which so far leads to more poking and stuff.. Im become rather anxious, which is not like me at all. For example.. called to make my mri appt yesterday and was shaking the whole time.. knowing damn well that itll lead to another biopsy ( I think i have bags of marbles on my chest instead of actual boobs ) but 2 weeks after the last mammo.. I was fine.. I think of nothing then poof.. here we go again.. rinse repeat. Im assuming itll plateau and they will stop poking me as much. The twisted cool part is that IF they poke me I can actually go back to work right away vs my last job where I worked with high school Mod/severe special ed and had to do lots of lifting and got hit and bumped etc so I had to take time off... now.. Im in my field of ASL interpreting and no one will be hitting me

MelissaDallas

That is why there is a big push to change the nomenclature for LCIS to lobular neoplasm, because it is not considered cancer. You don't have LCIS "removed" because it is consider to be multifocal and bilateral. It doesn't show on imaging. You just get a wider excision biopsy to make sure there is nothing worse lurking around the identified area of LCIS.

leaf

I totally agree with MelissaDallas (except I think that rarely/sometimes LCIS may show up on imaging.)

Foote and Stewart [1] initially described the entity "lobular carcinoma in situ" (LCIS) in 1941 and described it as a "precancerous" lesion. At that time, a diagnosis of LCIS was treated like a cancer by radical mastectomy. Haagenson et al [2] believed that the term "in situ" was a misnomer and preferred the term "lobular neoplasia" in 1978 because LCIS did not appear as a premalignant lesion but as a marker for increased risk for developing cancer. This notion was based on his observation that only 17% of 211 patients with LCIS developed invasive cancer with a mean follow-up time of 14 years, either ipsilateral and/or contralateral side of the breast. Subsequent studies of LCIS which included epidemiologic data have confirmed that LCIS is a risk factor and not an obligatory precursor lesion as ductal carcinoma in situ (DCIS). http://www.diagnosticpathology.org/content/5/1/54

leaf

Oops - I didn't mean to delete my post.

I agree with MelissaDallas, except some posters here have claimed that their LCIS was seen on imaging. (I can't tell independently if some radiologist thought LCIS sometimes shows up on imaging, or if some posters were told this correctly or incorrectly, etc.) I think that LCIS certainly does not DEPENDABLY show up on imaging. (My radiologist certainly seemed surprised that I had LCIS from my mammogram's 'suspicious calcifications'.)

Foote and Stewart [1] initially described the entity "lobular carcinoma in situ" (LCIS) in 1941 and described it as a "precancerous" lesion. At that time, a diagnosis of LCIS was treated like a cancer by radical mastectomy. Haagenson et al [2] believed that the term "in situ" was a misnomer and preferred the term "lobular neoplasia" in 1978 because LCIS did not appear as a premalignant lesion but as a marker for increased risk for developing cancer. This notion was based on his observation that only 17% of 211 patients with LCIS developed invasive cancer with a mean follow-up time of 14 years, either ipsilateral and/or contralateral side of the breast. Subsequent studies of LCIS which included epidemiologic data have confirmed that LCIS is a risk factor and not an obligatory precursor lesion as ductal carcinoma in situ (DCIS). http://www.diagnosticpathology.org/content/5/1/54

Personally, I certainly don't consider myself a survivor, but I don't mind if other people consider themselves survivors. Its also fine with me if they don't consider themselves survivors. I agree- I've certainly seen posters on bc.org who find the label 'survivor' offensive (even with advanced invasive breast cancers.)

Each one of us, with or without breast issues, has our own joys and burdens. You may not know the difficulties that the person walking ahead or behind you in a crosswalk has to bear; it may not be visible. Sometimes a situation will break one person, and the same situation will make another person stronger. We all have different backgrounds and personalities, and ways of handling difficulties. We all have to find our own way. If I can in any small way help someone else, it makes me feel a bit more satisfied.

614

I agree with Leaf.

Good luck.

panthrah

generally I think of myself as a survivor ..as in I dont break easily (except for disney commercials or disney movies) and also that I might be able to survive a zombie invasion. however.. I am not the " lost in the woods" survivor type its always about semantics

614

My son does not think that I would be able to survive a zombie invasion.  He is 16 so he certainly would be able to survive one.  lol

I agree, it is all about the semantics.

Anonymous

I don't think of myself as a "survivor" as compared to those with invasive bc who have undergone much more extensive treatments and surgeries (mastectomies, chemo, rads, etc); but I do think of myself as having survived, if you will, living successfully with a long term high risk condition (for over 12 years now), that is very unpredictable, and requires a serious committment of vigilance. (in my situation, high risk surveillance of alternating mammos and MRIs, and long-term preventative meds (tamox, now evista) and their SEs. We all live with something, I don't think it really needs a label, per se, we just need to be compassionate and kind to each other and realize everybody has their own issues to deal with in this life.

anne

ballet12

I had DCIS, and I don't consider myself a survivor. I consider what I had to be pre-invasive, even though I did have radiation besides the surgery. I also had many surgical biopsies and ADH/ALH prior to the DCIS diagnosis and three lumpectomies to treat the DCIS. It was an annoying and actually a bit scary year, but its over. I've had a biopsy since on the other side. Clearly the monitoring can be anxiety provoking. At the same time, I've got a friend going through a very serious cancer situation right now, so I wouldn't even use that word in her presence, for what I had to deal with, although ironically, it was she who found me the surgeon for my two final re-excisions of the DCIS. She is now being treated by the same facility for something other than BC, although she already had inflammatory breast cancer and triple negative breast cancer (and BRCA1 positive). I guess I just appreciate my health today. That's all I know about.

614

I agree.

I feel extraordinarily lucky. 

I was just diagnosed with ALH this week but that is a benign finding.  Six months ago, I also had a benign finding from a breast biopsy.  I dodged another bullet.  Yay!

I feel that my situation is very minor compared with what many women are/have had to deal with.  I am alive and fine and my prognosis is excellent.  God is definitely watching out for me.

I have no complaints or worries regarding my bc status.

That being said, I love all of my doctors and I trust them.  That is a huge part of this equation.

Good luck to everyone here.

DocBabs

Rita Wilson just announced on FB that she is now " cancer free". I know that she had a BMX with reconstruction during the summer but I did not know her actual diagnosis. The article said it was rare but caught early. I looke it up and her diagnosis wa LCIS. When I had a biopsy done 3 years before my actual cancer diagnosis of IDC , the results came back as negative as per my breast surgeon. When I saw the actual operative report the diagnosis was LCIC. This to me, was not negative but I was reassured that it was a cellular change though NOT cancer despite it's name.So , if LCIS is not cancer how is Rita Wilson considered to be free of something she never had. I know this is somewhat off the topic but in today's world it seems that everyone is a survivor even if you never had cancer. I don't consider myself a survivor just someone who had breast cancer.It may or may not be the cause of my ultimate demise. If it turns out that I die from a heart attack then yes,Could be called a cancer survivor.

Anonymous

DocBabs---if you read the entire article, it says she was diagnosed previously with LCIS, which they had been monitoring, then she got a 2nd opinion, went for more testing, and was found to have ILC. (then went for bilateral mastectomies and reconstruction).

anne

DocBabs

Anne, the article that I was shown only talked about her having LCIS. The other article where it goes on to talk about ILC was just shown to me this morning. I will confess to not having done my own research at the time. Thank you and Beesie for the correction.

Barbara