Am I taking LCIS seriously enough...

Corah

Hi all, this is my fist time on any forum so hope My question does not sound stupid... This has all happened in a whirlwind & I am not sure IF I am taking this LCIS seriously enough.

When I went for my free 50 year old mammogram in July, I was then called back for another scan as they wanted to confirm a finding. It was a small cluster of white dots no bigger than a grain of sugar & a core biopsy was scheduled. LCIS was diagnosed & I was referred to a B/Surgeon.

As like everyone else the waiting & mind play can be worse than the diagnosis. The BS recommended a Contrast MRI & another ultrasound as I have dense breast tissue. This highlighted some more areas of interest including small fibroadmenomas.

An excision biopsy/lumpectomy was done last week & I recovered well, no bruising, little to no pain & see my BS next week. I had to visit my GP today regarding an long term intestinal problem I have (which a flair up was bought on by the anaesthesia drugs) she asked if she would like her to go through the pathologist report with me (jumped at the chance as I still have a week & half till I see the BS & thought the end is near) she said I needed to be prepared that I may need to go back in for more surgery as I didn't have clear margins. My report has a whole host of words like fibrosis, adenosis, sclerosis adenosis, ductal cyst formation, apocrine change, columnar cell change, columnar cell change with hyperplasia, & florid epithelial hyperplasia, scattered fibroadmenomas. It also says there is no clear evidence of ILC & no evidence of IDC. As scary as these words sound they still all mean the same thing - NO cancer, just very early cell changes or benign findings.

But here is my dilemma & what I am struggling with - I am happy with my lumpectomy & feel it hasn't impacted the size, shape and the look that much. I keep reminding myself that for someone who does not have breast cancer a scar & a bit flat on my boob is a small price to pay for early intervention & monitoring. BUT if they take more out then it is going to a different story & I may have to think mastectomy, which I feel would be more in tune with the word 'cancer' .

So far I have coped well & just gone with the flow as my research keeps reminding me that it is not cancer but just an increased risk.

My BS is highly recommended & is one of the best, but I'm wondering if his concern is greater than mine & this makes me feel that maybe I need to take this a little more seriously than I am????

Anonymous

Corah----First good news: no invasive bc was found. Second good news: no further surgery is needed to get clear margins with LCIS. ( LCIS is multifocal, multicentric, and bilateral,; meaning, that if you have it in one breast, you most likely have it in areas in the other breast. It is generally not found by mammo, US, or MRI (although mine was detected by microcalcifications on mammo, but I think they thought it was DCIS at first), it is usually found incidently when they are in there checking out other problems. So theorectically, in order to "get rid of all the LCIS" that could be in there, they would have to do bilateral mastectomies, which are not medically necessary, as LCIS is not a "true" cancer, but more of a high risk marker for invasive bc in the future. Depending on your family history and/or other risk factors, they may recommend preventative meds, such as tamoxifen, evista, or aromasin. And closer monitoring, with 3D mammos and possibly MRIs.

I was diagnosed over 13 years ago,, had LCIS (and all that "other stuff" that you listed , as well); had lumpectomy, took tamoxifen for 5 years, took evista for about 7 years, have been doing high risk surveillance for all these years with alternating mammos and MRIs, and fortunately have not needed any further biopsies or lumpectomies. acutally, my new oncologist feels that I don't need to keep doing the MRIs, she feels the 3D mammos (tomosynthesis) works well for me, as tamoxifen has decreased my breast density dramatically, (an added benefit).

So, while LCIS certainly is a serious condition, it is not life threatening, there is no rush to make any hard and fast decisions, I would wait until you sit down and talk with your oncologist. (if you don't have, one, I would recommend you get one, they are the specialists with this, not the breast surgeon.)

anne

Corah

Thank you Anne for replying to my post & I appreciate the information you have given me...

This whole experience feels like its snowball and gathering speed quickly

My mum had biopsy & lumpectomy a couple of years ago as she had ADH & some benign areas that are now all managed by regular mammograms & follow ups. Mums sister (my Aunty) has had a mastectomy with IDC - stage 3 cancer. That is all of the family history of breast cancer other relatives have died from other forms of cancer tho again no real family history that I feel would be ringing alarm bells...

You explained it perfectly and with my research with Dr Google - LCIS is not a true cancer but a marker for increased risk...I feel it's a bit like 'glass half empty, glass half full' scenario, I could get it - but I might not... I just have a real struggle with looking at it glass half empty 😒

I had a called today from the support nurse checking on how I was going & if I had any questions. I thought it was great that she called, felt humble by her care factor & slightly embarrassed if that's the right word that I took up her time when there are people out there fighting true cancer that need her support more than me. I was thrown back a bit when she explained she will be there next week at my follow up appointment. Glad she told me because I think I would of been standing in the doorway mouth open - catching flies if I had seen an extra person sitting in the surgeon office 🙊 I asked her why she would be there & she explained she is part of my care team - again I struggle with why I would need a care team for just being in a high risk area -I did kindly ask her this question & she replied "your prognosis is good, your diagnosis has the word carcinoma in it, they have found stage 0 cancer cells in my breast and she will be there to support me the whole way. didn't have the heart to say that this C train ride I'm on when it stops at Doctors office next week - I was hoping to jump off.

Anne as for an oncologist I'm not sure I am brave enough to go down that path. Next month will mark the 5th anniversary of the death of my dad who was a fit & healthy active man on a Monday & by Friday he was given 6 to 12 months to live & was riddle with C from neck to toe. He wanted to try treatment & was gone in 12 weeks Will be recommending my C train doesn't stop at that station.

I had a hysterectomy at 30 due to uterine endometriosis, but retained both ovaries. I have been on oestrogen replacement therapy for two years for menopause, I had to cease taking my 'happy pills' immediately, to quote my BS "oestrogen is like putting fertiliser on a cancer cell. So taking Tamoxifen which has the same side effects is not to appealing but yes I agree getting Invasive breast cancer is 10 times worse - another mind hurdle I will have to work through.

So I have now come to the conclusion that maybe there 'might' be a little bit more to my diagnosis than first thought & perhaps I might need to prepare myself for this just in case maybe I might have to book my train seat for a few more stops yet

Thanks for your support Anne & for taking the time reply, LCIS is certainly a grey area - just so not ' cut & clear' direction!!!

Kathy & Corah who is my 🐶

SassyMutt

I was diagnosed with LCIS 2 years ago. I know exactly how you feel. However, I've come accept and really appreciate my "care team"! I am on the 6 months screening rotation and 5 years of Tamoxifen. I go to a breast center with Johns Hopkins and the BS, Oncologist, and techs all work together and share my records and test results. I really love knowing that I'm being monitored so closely -- it gives me a lot of peace of mind. And it makes me happy with the medical system to see them take these risks so seriously -- it's great preventative care! They would much rather monitor me and reduce my risk than have to treat me for cancer later. Hugs to you!

Corah

Hi all.

I have been researching all the options for LCIS in preparation for my follow up appointment tomorrow. (What LCIS is, monitoring - Tamoxifin - Mastectomy)

I am trying to learn as much as I can on the different treatments so I can at least feel like I have some clue of what they are talking about, plus I can ask the necessary question if/when it is suggested.

I have been researching Tamoxifin - there are some serious side effects associated with this drug, it seems to me that I would be swapping one high risk area for another. I have a small liver cyst & some signs of fatty liver, (my luck tamoxifin would mess with that and it would add another problem to my list of worrying)

Going into tomorrow's appointment (and yes my view will most probably change a few times depending on the conversation, findings & discussion) but I am thinking my best option is to just leave well enough alone, keep the high monitoring scans & self checks, but just 'be more breast aware'. Other than a D/mastectomy which I agree is a bit drastic for LCIS, I don't have much choice...

For the ladies who have had LCIS for years & whom a more educated on this topic than me, what are your thoughts & experience on Tomoxifin and its side effects - what have you heard & what have you learnt ???

Man I cannot wait till tomorrow for clarification & hopefully putting this behind me...

Kathy

Corah

all good for me from here in....

Had my follow up appointment after my lumpectomy, no cancer found & no more cutting, poking & prodding, just yearly visits 👏👏👏👏

My surgeon explained I had "complicated" breasts & best course of action is wait & see what yearly monitoring brings... Happy with that - unhappy to have to stop my estrogen therapy but better than the ulternitive...

So feeling like crap, not sleeping at night, having my own personal summers again & even tho I am relieved I had great results - I feel like bawling my eyes out... But still better than 👎 results

Trying to eat better, exercise & put this whole thing behind me

Kathy

Anonymous

Corah----so glad to hear no invasive bc found, that's wonderful news ! also glad to hear you have stopped your HRT; it's definitely contraindicated with LCIS. (it would be like pouring gasoline on a fire). You do have family history with your mom and aunt, so you may still want to consider tamox at some point, but make sure to stay vigilant with your follow-ups.

anne

Corah

thank you Anne, still feeling that the doctors/BS have over reacted a little on the whole process,

My poor body is struggling with the drop in estrogen, mood swings, stomach issues and constipation. We are into the 4th week and finally a small lite Coloured bruise has come out on the scar line from my lumpectomy. As the swelling is going down I can start to see the puckering & the wrinkling is starting. This saddens me more than I thought it would, It's vanity I know, but I just feel that we have gone & taken a fair bit of my boob out for nothing ....

Plus with all the other internal issues I feel terrible, sad & disappointed :-(

I am off to see my GP this week to see if they can continue to investigate why I have stomach problems. Had tests 2years ago & they didn't find anything other than inflamed stomach & 'maybe irritable bowel. As I said to the BS " I am not worried about breast cancer getting me, I'm more worried about my stomach. Your body doesn't get this type of pain for no reason (I have a strong pain threshold & I am struggling big time atm) it did settle a bit with the estrogen therapy, it was still there but I managed it on a daily basis. When in got worse I just "coped" (told myself to 'take a cup of cement & harden up') after this experience I think I need a bag!!! (Poor tummy feels like it's got a bag of cement in it)

I haven't gone back to work yet as I feel the first amount of stress I will fall apart at the seams

Anonymous

corah-----I had to have a TAH/BSO (total hysterectomy with removal of ovaries) several years ago, so I had immediate surgical menopause, with all the SEs you mentioned and then some. It was very rough the first year, contending with all that while trying to recover from major abdominal surgery at the same time. They kept me on tamoxifen for another 3.5 years (to finish out the full 5 years), so it was kinda a double whammy. But, I look at it this way; as difficult as it was, it pales in comparison to a diagnosis of invasive bc and all the consequences of that. I hope you get some answers from the doctors about your stomach issues soon.

anne

Corah

Hi All

It's 6 months since my whirlwind LCIS diagnosis, biopsy & lumpectomy it's a almost forgotten thing.

Plus I have finally had my stomach issues diagnosed. For the last 4 years I have had Helobactor Pylori (a tummy bacteria) that has caused chronic gastritis (inflammation of the stomach lining) thank goodness not at the ulcer stage or progressed into anything nasty. (Like stomach cancer) They did test for H/Pylori at the start in 2014 but it had come back as negative

I have had the H/Pylori treatment & the follow up test which has also come back as negative (meaning the bacteria is gone) But I'm not convinced as I'm still having stomach soreness, still tied & feel fatigued & frankly no better than I did before I new I had gastritis.

When I had my gastroscopy in February, in the pathology report it showed that the stomach biopsy had reduced white blood cells in the sample. I have questioned this in my continued doctors visit but they weren't overly concerned. I have had continued visits in the past months for things that turn into big things, for example: I had a small burn on the back of my hand that turned into a Staff infection that ran up into the glands of my arm, another for a rash that got infected due to my new work boots, and I had a tooth ache that turned out to be an abscess in my gum.

In my last visit to my doctors I said I felt that my system is just not coping & with a diagnosis of LCIS & being in a high category for BC I just don't want to over look things or just leave it. I was told everything is normal, cut down the stress & not to worry. (Easy for them to say)

I decided that I would go & see a nutritional practitioner to help with my gastritis & she had sent thru a recommendation for a new set of blood test. (I am now sure my doctor thinks I am really over reacting) my blood test are back & it shows my white blood cells are slowly reducing but I also have an elevated B12 count (B12 is a marker for infection)

Now I am at war with myself again, I try to keep telling myself it's all ok & I should trust what the doctors say that all is normal & not to worry, but my gut feeling is that things are changing & it boils down to I don't feel right. I have this nagging thought that I need to be pro-active not re-active, it's to late once the diagnosis comes in with a C.

So my question is: am I worrying unnecessarily, should LCIS even be a thought off in this case. Should I have my 12 month mammogram & MRI scans a few months earlier just to be on the safe sideor I'm just over reacting completely & this is what living with LCIS is like anything that happens you naturally revert it back to LCIS.

Sorry for the moan ladies, but you guys have quelled my worries before

Corah

MelissaDallas

I think that even if you had confirmed cancer all the things you are talking about would have nothing whatsoever to do with it

Hope1970

I had a LCIS diagnosis in 2010 and a lumpectomy. I was told I had very dense tissue and that I should have an annual 3D mammogram. The first Dr I saw suggested Tamoxifen, but I dismissed it. I had no family history of BC, was healthy and didn't have any other risk factors for BC. I didn't want to take a drug with serious SE as a prophylactic so I promptly found another doctor. Once I had the lumpectomy, with the exception of the annual Mammogram, I didn't give much thought to my LCIS diagnosis.

In March 2017, I was diagnosed with ILC. I had a tumor over 6 cm as well as lymph node involvement. My last Mammogram had been 1.5 years ago and I'd been told there had been no changes since my previous mammogram. As my cancer is slow growing, the tumor was large and there was lymph node involvement, I was told it had been there a while. I believe that it remained undetected on my earlier Mammograms, as is often the case with ILC as well as for women with dense tissue. Corah, I am so happy you are having an annual MRI; I am sure this will help you avoid my situation! On the subject of Tamoxifen....... maybe I should have considered it as a possible treatment option. Unfortunately when we make these decisions, we don't know if we'll be one of the 25% of women diagnosed with LCIS who develop BC. I will be starting Chemo tomorrow (am terrified) and can't help wondering if this could have been avoided if I'd taken my earlier LCIS diagnosis seriously.

Corah, you have done your research and are having thorough screenings so I am sure you are making the right decision for your situation. I am only posting my experience in the hope that it may help others on this board who are grappling with making difficult decisions. I also wanted to alert them to the fact that Mammograms are limited in detecting ILC and cancer in women with dense breast tissue. My advise would be to insist on an MRI and ultrasound if you fall into one of these categories. I wish I had!

Corah

Hope1070, I have been thinking of you as you would be going through your treatment now. i am also sending you strength, courage & my thoughts.

I have read your post many times & I want to tell you how your post has helped me.

I'm coming up to my first year & with that comes the yearly testing. As I have said I have been having these stomach issues for years & in the pathology report from the gastroscopy, there were atypical hyperplasia. So my health focus & my worries has been directed on my stomach.

After my lumpectomy I thought my breasts felt alot different and had more lumps & bumps than before, thinking that with scar tissue & swelling that was normal, but continued to self check regularly.

I knocked my boob on a box I was carrying at work a few month back & it was tender & hurt, feeling around I thought I felt a lump. I couldn't get into my doctor on one of my visits for my stomach, so while I was in with this new doctor I asked to check it out, she said it was nothing (with raised brows & a look above her glasses that made feel silly & neurotic)

I continued to self check & thought that if it will be anything then it would be picked up in my yearly checkup in 3-4 months time. My doctor left the practice so now I have had to find a new one, when we were going over my history, I mentioned that I had felt a lump a few months back & it was still tender & maybe he couldcheck it for me to put my mind at rest. He said he would prefer to do an ultrasound instead. (At the moment I decided he was my new GP)

Well the lump I thought I felt didn't show up, but they found another one not far away

Just had a biopsy yesterday, & am on the waiting game for results. AGAIN

Hope1970, I keep thinking about what you said about being insistent. my poor body is fighting chronic gastritis, I think the Helobactor is still causing havoc in my stomach, I have atypical cells in my breast & stomach, I'm nutrient deficient because my body is not absorbing the essential vitamins & minerals it gets from the limited food I eat, I keep getting infections because my body is struggling to keep up, i work a stressful job & to top it off I'm in a high risk for breast cancer.

So am I taking LCIS seriously???, I am taking the checking, the surveillance & the continued insisting that I'm not feeling right until such time as I do feel like my old self again. I also have an appointment with the gastrointestinal doctor so he can either fix me completely or put me on a surveillance plan as well.

That is how I will ensure I get the best results

Corah

Hope1070, I have been thinking of you as you would be going through your treatment now. i am also sending you strength, courage & my thoughts.

I have read your post many times & I want to tell you how your post has helped me.

I'm coming up to my first year & with that comes the yearly testing. As I have said I have been having these stomach issues for years & in the pathology report from the gastroscopy, there were atypical hyperplasia. So my health focus & my worries has been directed on my stomach.

After my lumpectomy I thought my breasts felt alot different and had more lumps & bumps than before, thinking that with scar tissue & swelling that was normal, but continued to self check regularly.

I knocked my boob on a box I was carrying at work a few month back & it was tender & hurt, feeling around I thought I felt a lump. I couldn't get into my doctor on one of my visits for my stomach, so while I was in with this new doctor I asked to check it out, she said it was nothing (with raised brows & a look above her glasses that made feel silly & neurotic)

I continued to self check & thought that if it will be anything then it would be picked up in my yearly checkup in 3-4 months time. My doctor left the practice so now I have had to find a new one, when we were going over my history, I mentioned that I had felt a lump a few months back & it was still tender & maybe he couldcheck it for me to put my mind at rest. He said he would prefer to do an ultrasound instead. (At the moment I decided he was my new GP)

Well the lump I thought I felt didn't show up, but they found another one not far away

Just had a biopsy yesterday, & am on the waiting game for results. AGAIN

Hope1970, I keep thinking about what you said about being insistent. my poor body is fighting chronic gastritis, I think the Helobactor is still causing havoc in my stomach, I have atypical cells in my breast & stomach, I'm nutrient deficient because my body is not absorbing the essential vitamins & minerals it gets from the limited food I eat, I keep getting infections because my body is struggling to keep up, i work a stressful job & to top it off I'm in a high risk for breast cancer.

So am I taking LCIS seriously???, I am taking the checking, the surveillance & the continued insisting that I'm not feeling right until such time as I do feel like my old self again. I also have an appointment with the gastrointestinal doctor so he can either fix me completely or put me on a surveillance plan as well.

That is how I will ensure I get the best results.

Hope1970 I hope you are doing ok