Cancer or not?
Comments
-
What do you tell people? What box do you check when you are asked if you have had cancer? I know leaf says she checks both yes and no..... Even my oncologist's nurse said "what's that?" when I told her I had been diagnosed with LCIS. A surgical intern before my lumpectomy said "you mean DCIS" when I told her my diagnosis. I have had 3 surgeries and a lumpectomy that removed more tissue than my sister had removed for an invasive cancer - I have a 4" incision on my boob and a seroma. I am going on tamoxifen for 5 years and I have the lovely worrying about scans and check ups every few months.
I guess it's a question for my oncologist today. But I get a little sick of people who think they are informed saying "this isn't really a "cancer". -
Kimber, this is an interesting question and, like so much else about LCIS, one for which there is probably no "right" answer. I usually check "no" on forms, but then I say I've been diagnosed with LCIS and that I used to take tamoxifen, and then Evista, and by then the medical people are usually thoroughly confused! For a few years, I walked in the Komen Race for the Cure, and each time I wondered whether or not to register as a survivor, although I never did. When I asked for opinions on this, they were pretty evenly divided.
On the other hand, I have one mammo report that says, "Personal history of breast cancer," and my insurance company considers that I have a diagnosis of BC. I found this out when I was trying to get them to cover my first MRI. They had no problem with it because they considered me to have BC, but when I told my oncologist's PA about this, she said, "You DO NOT have breast cancer." It really seemed to bother her that the insurance company was handling it this way. I thought at the time, but did not say, that they can call it whatever they want to as long as they'll pay for the MRI!
It is really hard to know how to categorize LCIS. Like many here, I believe that much more research is needed. It would not surprise me if it turns out that LCIS can be a precursor to invasive in much the same way that DCIS can. I believe that one or two studies already seem to indicate that this might be a possibility, but of course not enough is known at this point to say for sure. It is very difficult to have a long-term relationship with an oncologist, to go through all the necessary surgeries, and then to have the testing that never ends WITHOUT feeling like we have cancer. And yet. . .it's not invasive.
I guess this is my long way of saying that I don't really know what the answer is, although I've given it a lot of thought over the years. I do think that the emotional effects of an LCIS diagnosis are very similar to those of an invasive cancer. LCIS can be treated with some of the same drugs that invasive BC is, and we have to deal with the side effects of those drugs. We see oncologists, which most people in the general population do not. We worry about what the next test or scan will show. I have already told my oncologist that at my next appointment, I want to talk about surgical options, because I have just about had it with "watching and waiting." What I am seeing when I "watch" is test results that are slowly getting worse over time (I'm in a research study). Like Barney Fife, I'm wondering if the time has come to "nip it! Nip. . . it. . .in. . .the. . .bud!" So we'll see.
I realize that I have probably just confused the issue more, which was not my intent! I wish you the best of luck with your appointment today. Bring up all your concerns with your doctor. I am sure that together, you will be able to come up with the treatment plan that is right for you. Hang in there, and try not to stress too much.
-
Kimber-I know this sounds very cavalier and easy to say, but forget about semantics. Keep your eye on the ball. You've got something that has the potential to be serious (or not serious). Don't get hung up on the naming aspect of it all Ask about your odds for invasive cancer with all the info you and they have on hand now.
I say this with experience! After much finessing and I got an appointment with one of the most highly esteemed oncologists in NYC. I spent the ENTIRE 30 MINUTES WITH HER discussing whether it was really cancer! And I do mean the entire time. She said it was not cancer but something that sounded like hyperplasia. I felt I had "won" when I left her office. that feeling lasted 1 hour, maybe less. It was after that wasted visit that I finally started to deal with my LCIS and my most comfortable mode of treatment. The turning point for me was when I saw how much space semantics was taking up in impeding my decision.
femme
femme -
Today when I went for my mammo and MRI, the technician asked me why I was there. She asked me if I had cancer. I told her about the LCIS and said this was my "close monitoring." She seemed unsure about what to check on my screen. Then when I told her I was on Evista, she didn't seem to know why I would be taking it. There was no listing of it on the screen, so she checked off that I was taking Tamoxifen, which of course is incorrect.
On one of my reports from before, it lists me as having bc with a partial mastectomy. I guess that's what they called the excisional biopsy. In that case, I've had two of them.
You are so right - sematics is a real problem with this dx.
Anne
-
Kimber-----I agree with the other ladies here--it doesn't really matter what they call it, as long as your situation is taken seriously and you get the medical attention that you require. Having said that, it still bothers me when others say "it really isn't cancer", but not nearly as much as it did initially; I've heard it for so long, I'm used to it. (all my docs refer to it as bc and it is listed as bc on all my medical forms). I respond yes on forms or to questions, but then elaborate that LCIS is a non-invasive bc; "different" from "regular bc" since it is non-invasive and therefore doesn't require chemo or rads, losing your hair, doesn't spread to other parts of your body, and is not life threatening. (Often those are the things people immediately think of when they hear "breast cancer", so I try to educate them on how it is a different situation). I do explain that it puts me at high risk of an invasive bc in the future and that's why I take tamox and am closely monitored.
I've been volunteering at the relay for life for many years and I was hesitant at first to wear a survivor t-shirt, until another woman told me after what I'd been thru that I was just as much a survivor as anyone else there--I now wear it proudly every year. Those of us with LCIS (by itself, without an invasive component) may not have had to go thru the "bad stuff" like chemo or rads, but we do have to endure all the mammos/US/MRIs/biopsies/surgeries/hormonal meds and their SEs/ the endless waiting for test results/ and the anxiety and worry that comes from a disease with such uncertainty.Anne
-
yep, my diagnose ..was infiltrating lobular carcinoma in situ stage 11 knottingham grade 1 and my lump was 5cm almost 6....thye told me it was cancer.....so now I am confused. I had chemo...surgery and tamoxifen for 5 yrs. both breasts are removed and the surgeon said she found other cancer cells in my breast that would of came back if i had not lobed of my breasts...had a small lump in left breast.but came back negative...just right breast was affected and I had 14 limp nodes taken out....negative. I can tell ya I am surviving, but went through alot of pain or agony trying just to make decisions?
-
I do have LCIS and although they said the chance was about 10% I did have ILC. Never showed up on anything was found in the excersion biopsy, BS was shocked. I am a survivor and so is each one of you. The treatments, monitoring of tesst is only one part of it. Yes, its all horrible but more importantly the FEELINGS of sadness, fear, worry, every emotion that comes with it makes us all survivors.
Names are just names, it doesnt really matter its what we feel and what goes though our minds. If you have LCIS your emotions are just as real as mine. You deserve to be survivor because you are already one.
-
Just today at a medical appointment, I had to choose an answer to the checkbox for breast cancer. I checked 'yes' but put a big asterisk next to the box, and then wrote LCIS at the bottom of the page. I wonder how many of us choose a straightforward 'yes' or 'no' on similar forms.
-
taco----LCIS is always stage 0. If yours was called "infiltrating" that means invasive (ILC) and then your stage 2 would make sense. Most likely you had both LCIS and ILC, which is not at all uncommon.
anne
-
Yeah, from an insurance standpoint, unless you qualify for a guaranteed issue policy I'm sure an underwriter would consider it cancer.
-
When I had a workman's comp claim, the insurance guy interviewed me. When I got a written report back what he said, it said I had breast cancer through my breasts with lots of tumors and lumps. It was a total lie. (Even if you choose to describe LCIS as a tumor-which I find a real stretch - I've never had a breast lump except for swelling after surgery.) It was obvious he didn't know anything about LCIS.
With my onc's blessing, I now check 'no' for having cancer. She says 'I've been cured', though of course I think she underestimates how much I understand about LCIS. However, I probably have less risk of dying of cancer of any of her patients.
-
Same as Leaf here. I asked my breast surgeon which box to check and he said, "the one that says NO cancer." He's at Stanford and they have a pretty clear point of view on LCIS on their website. Basically consider it not to be cancer. I recently had to fill out the medical history for a new dentist I have and what a time saver it was just to check "no", so I don't have to explain all of it.
Leaf, your comment made me think: a woman who had LCIS and a subsequent bilateral MX, probably has a whole lot less chance of dying from BC than an average woman with no current diagnosis.
-
I am 42 (43 in april) and was in for my annual mammo and was called back. The result was that I need to come back in for a core biopsy, which I promptly scheduled. 3 days later I was told Atypical Lobular Hyperplasia and told to contact a breast surgeon. Excisional biopsy happened 2/15 and pathology was determined to be LCIS- not cancer. I have done some research and I am to be honest I am still scared. Reading many posts and doing research. I go for my post op appointment next week and she has already said I will need to go to the high risk clinic for evaluation. Honestly- should I be scared?
Also- forgot to mention that I am on my second Mirena IUD for heaving bleeding after the birth of my daughter in 2003. Seeing alot of people connecting the dots with that as well.
Keeping a positive attitude but again- just a little scared now.
-
Hi Portkl,
I'm sorry you're in the club. Should you be scared? I think we all were. Do you need to be? Probably not. As my BS said to me, "the vast majority of women with LCIS will never get invasive cancer." Should you take it seriously and make sure to attend all your follow ups and question drs as needed? Absolutely.
We were all going about our lives not even thinking about cancer. Most of us probably never heard of LCIS until we were diagnosed. It's a shock. And it's also confusing. You have time to make decisions, and you have time to decide what path you'll take. There's really no right or wrong answer. Your instincts will tell you which path is right for you.
-
I look at it this way...we all have abnormal cells from time to time. Most of us have healthy immune systems to fight it off the abnormal cells which our bodies occasionally make through the mistakes of cell division. But hyperplasia IS a characteristic of cells which needs close monitering.
Hyperplasia can occur in many regions of the body. The most common place in women is the cervix and in men, the prostate. This is why we have PAP smears done annually.
But cancer or not, lobular hyperplasia, whether it is termed ALH or LCIS, puts those individuals in a high risk category. Early cervical cx is 100% curable.....LCIS is diffuse in the most difficult area of the body to visualize, especially if the breast tissue is dense. We were doing heart catheterizations and open heart surgery decades before they came up with a decent diagnostic exam for bc. And I believe it will be some time before they come up with a better tool to find diffuse ILC.
In the meantime, my choice is life over breasts.
-
I to have a lot of questions! I was diagnosed with LCIS earlier this week. I have tried to do research and understand it. They call it a stage zero, a noninvasive cancer, or no cancer at all. Why would I have to take a chemo drug called tamoxifen then? This sounds insane. And go for breast MRIs and checkups every six months for the rest of my life, or until that fateful day?
-
Fussycat---technically, LCIS is a stage 0, in-situ, non-invasive bc; but since it is non-invasive, most in the medical community don't consider it a "true" cancer; rather, it is considered to be more of a high risk marker for future invasive bc. It does not require any chemo or radiation, but it does require close surveillance (generally an alternating schedule of mammos and MRIs, 6 months apart.). Tamoxifen is used to help prevent any invasive bc. I took it for 5 years, now I take evista for further preventative measures. It's definitely a personal choice, dependent on the level of risk you are comfortable living with. some people chose BPMs; I personally don't want to go that route unless medically necessary.
Anne
-
I am very leery to take tamoxifen based on its side effects and research. I am going for a second opinion in a couple of weeks. I am really leaning towards a PBM. I also see a pot of people on here that appear to have prophylactic ovary removal. Thanks for your insight.
-
Most women with LCIS do NOT have a significant family history (such as a first degree relative with breast or ovarian cancer.)
If you have a significant family history of breast and/or ovarian cancer, mostly in first degree relatives (such as parents, sibling, children, especially if diagnosed before the age of 50), then you may be more at risk for a BRCA mutation. Depending on the exact mutation, you can have up to a 65% chance of breast cancer (up to age 70), and up to a 39% risk of ovarian cancer by age 70. http://www.cancer.gov/cancertopics/factsheet/Risk/... . There are also other hereditary conditions that can put you at higher risk of breast cancer.
Twenty percent of breast cancer is familial (family history of breast cancer). Approximately 5% to 10% of breast cancer is hereditary—a gene mutation has been inherited, which puts the patient at an increased risk of cancer. Two-thirds of these hereditary cancers occur in individuals with BRCA1 or BRCA2 mutations, which are germline mutations. The remaining 10% to 15% is due to some other factor involving the family, such as an environmental factor, chance, or an undiscovered gene mutation. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC260261...
I have never seen prophylactic ovarian removal recommended for someone who has LCIS, no worse breast pre-cancer or cancer, and a weak family history/BRCA risk. I normally see ovarian removal recommended in women who have a BRCA mutation, at high risk for a BRCA mutation, has more advanced breast cancer, or some other unrelated ovarian/fallopian tube/uterine issue. Pre-menopausal ovarian removal can have hormonal consequences beyond sudden hot flashes.
You also want to look at what type of LCIS you have (see your pathology report). Probably most LCIS is the classic type (because they didn't describe other types until about 50 years after they discovered the classic type.) http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh...
If you have an LCIS variant, then you may be at higher risk than a woman with classic LCIS.
Your choice of how you handle your LCIS condition is your choice, and dependent on your particular condition, your family history, your personality, your surgeon and oncologist.
Not everyone with LCIS does breast MRIs twice a year for the rest of their lives. I have classic LCIS, a relatively weak family history, and I have never had a breast MRI. I get once-a-year mammograms, and twice-a-year clinical exam; this is what the NCCN recommends for on-going care (after I had a breast excision so they knew there wasn't anything worse in the area.) http://www.nccn.org/patients/guidelines/stage_0_br... (see especially pg 14). My oncologist has recommended I not see her anymore unless I have further cancer issues. (It has been 10 years since I was diagnosed with LCIS, and I have not been diagnosed with any breast condition worse than LCIS.)
It also helps to know some numbers, or approximate numbers. The vast, vast majority of women who take tamoxifen will NOT have a stroke, thrombus, or uterine cancer. No differences were found for other invasive cancer sites, for ischemic heart disease events, or for stroke.http://www.ncbi.nlm.nih.gov/pubmed/16754727 For endometrial cancer, in this study Through 66 months of follow-up, the cumulative incidence was 5.4 per 1000 women and 13.0 per 1000 women in the placebo and tamoxifen groups, respectively. http://jnci.oxfordjournals.org/content/90/18/1371....
Whatever you choose, I would recommend looking at the risks and benefits of each choice. Not everyone can tolerate watchful waiting; not everyone can tolerate tamoxifen or other anti-hormonal; not everyone is happy with having prophylactic mastectomies (and not just the psychosocial issues; some women have lymphedema or ongoing pain). You don't want to ignore your LCIS; neither do you want to use a sledge hammer to pound a nail.
Once you are fairly sure you don't have anything invasive going on (such as if you have had a breast excision), you have time in order to make your decision.
-
interestingly enough, mine was found after my BR! Thank god for that at least!
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team