Newly Diagnosed LCIS...Pleomorphic.

nursesrit

Hello ladies,

I was recently diagnosed with LCIS of my left breast, confirmed on 10/27/15. On 11/10/15, the breast specialist doctor said it was pleomorphic according to my breast MRI with contrast dye. She also told me I have a new area of suspicious calcifications near my left nipple. At 56 yrs. old, I have always have yearly mammograms, and do my monthly self breast checks. I had bilateral breast saline implant surgery in 1994 without any problems. I have been postmenopausal for about 5 years. I have had 4 mammograms from 2014-2015, to include 2 breast MRI's with contrast dye, and 1 stereotactic biopsy of my left breast. My 3rd mammo. showed calcifications with a lump. I could not feel the lump, and I had no symptoms such as pain, dimpling, nipple discharge, fever, or swollen lymph glands. Please know, that I have had pain in my left breast about 3 weeks, which is intermittent, and increasing in frequency. I experienced my left breast pain before my stereotactic biopsy. Concerning my familial history, my 2 sisters and mother have fibrocystic breast disease, but no cancer. However, the sister of my maternal grandmother died of breast cancer. The type of breast cancer she died from is unknown. My mind is in a million directions! My surgeon spoke with me about having a lumpectomy, and being treated with Tamoxifen. He is not aware of the recent pleomorphic diagnosis, or the new area near my nipple. By the way, I live in Southern California, about 25 miles from Los Angeles. The areas I have worked in as a nurse is managed care, intensive care, internal medicine, home health, and pediatrics. This is new territory for me on a personal level. All suggestions and advice is sincerely welcome. Where do I go from here?

Thank you...

Moderators

Hi nursesrit, and welcome to Breastcancer.org!

We're sure you'll get lots of responses here shortly from our ever-helpful members, but in the meantime, we thought we'd share this blog post from our main Breastcancer.org site from our medical adviser, Dr. Brian Wojciechowski on What My Patients Are Asking: What is Pleomorphic Lobular Carcinoma In Situ?

We hope this helps!

--The Mods

614

If you are post menopausal, then you may want to ask your doctor about taking an aromatase inhibitor rather than tamoxifen.  See what the doctor thinks about this and follow your doctor's advice.  Good luck. 

leaf

As far as I know, they would not use an MRI to diagnose pleomorphic LCIS. I thought a pleomorphic LCIS diagnosis was ONLY made by a pathologist. http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh...

Since PLCIS is less common, and may be more aggressive, I would definitely at least at some point, get a 2nd opinion at UCLA, if not just go to UCLA (if your insurance allows.) As far as I know, they are an NCI-certified cancer center. Almost everything about LCIS is controversial, from your chances of getting invasive breast cancer to the proper treatment for your situation, and that probably goes double with PLCIS. So be prepared to get a variety of opinions. I just have garden-variety (classic) LCIS. 10 years ago, my breast surgeon 'refused to do any further surgery on me' (besides my lumpectomy). My oncologist was much more open to mastectomies, but since my oncologist wouldn't be doing the surgery, that was not an option.

If you choose to get a lumpectomy first (to help ensure you do not have invasive breast cancer going on), that will buy you some time as to what further treatment to have. Time is not as critical as for the people with invasive breast cancer, who should really make their treatment decision before, say, 1-3 months.

There is no one 'best way' for everyone. Everyone is different. Even if 90% of PLCIS women choose treatment X, that doesn't mean that treatment X is for you. You will be the one who will be living with your situation. Do your homework, explore all your options. Search both your heart and your head. Sometimes you will be able to do one treatment for now, and switch to another treatment later if you choose. We will be here for you no matter what you choose.

614

Great Advice Leaf!

myajames

Hello Nursesrit,

I was also recently diagnosed with Pleomorphic LCIS. I'm learning alot, but must admit it has been a whirlwind. There are no many different terms and acronyms, I feel like a student who joined the semester late. My doctor has recommended an MRI. I should get the results on Monday. Lumpectomy and the rest of my treatment will be dependent on the pathology of the lump. The doctor is also considering removal of a lymph node should the MRI show something funky, just in case of malignancy. She doesn't want to perform multiple operations.

There doesn't seem to be a standard of care, or a whole lot of information about this condition.. However, everything points to a great prognosis.. which is nice.

Would love to keep in touch as we are going through this journey together. I am in California too.. I'm in the Bay Area.

Leslie13

Hi,

I was recently diagnosed with Invasive Lobular cancer, but had LCIS for years I'm told by my post-op pathology report. Something triggered it. And I have many risk factors for breast cancer.

With only LCIS, I'd think an Aromatase Inhibitor alone with close surveillance may be enough, but I'm no expert

Good Luck

Anonymous

Leslie----I'm confused, did you know about the LCIS all these years, or did they just tell you about it when they found the ILC?

Anne

VAINLA

I was diagnosed with Pleomorphic LCIS about 2 years ago. I didn't worry much about it at first - I just had a lumpectomy and signed up for the recommended check ups every 3 months. Tamoxofin was not an option for me as I had a history of blood clots - I was kind of grateful I wasn't a candidate to take it as I know the side effects can be bad and I knew it would simply reduce the risk by about 50% which still left me in a high risk category. After just 2 of the scheduled check ups (so 6 months after my lumpectomy) they found another curious area that needed to be excised. At that point I realized I was on a treadmill that wasn't going to slow down. A future of constant Mammo's, MRI's, biopsies, lumpectomies, etc weighed heavily on me. I figured the best case scenario was I would have more possibly unnecessary lumpectomies to be safe and end up slightly deformed but cancer free. The worst case scenario was, of course, bad. As much as I tried to put the fear of it becoming invasive out of my mind I couldn't do it. My anxiety was off the charts but I did decide to have a double mastectomy with immediate reconstruction and I am SO HAPPY I DID IT! The recovery was so much easier than I thought it could be, the results are amazing. I have smaller breasts so did immediate reconstruction to avoid a 2nd surgery - great decision for me. One of my breasts looks 100% natural - the other has a bit of rippling - but as a 46 year old woman I can tell you they are better than before. The most important part (obviously aside from the fact that my risk of BC is now about 2%) is that I don't have to walk around constantly worrying that the next check up would be the one where they found an invasive cancer cell. I am too young to live with that constant fear...and anxiety is proven to increase your cancer risk, so it's a double whammy. I am in L.A. so had amazing female surgeons - since you are near LA you should take advantage of your physician choices. They all have differing techniques, approaches and opinions - find the one that suits your needs the most. Best of luck to you in your journey through this!

MsVeryDenseBreasts

Vainla, my experience was similar to your but I had classic LCIS with extremely heterogenously dense breast tissue and "managed" with it for 7.5 years before opting for PBMX. I'm 2 weeks out post exchange and I too am extremely happy/relieved. My anxiety was not off the charts. I thought I was dealing with it just fine all these years until everything reached a crescendo in '15 with a referral for 3 areas to biopsy. At that point I decided I was playing Russian roulette and realized I had been living my life in 6 mos increments between appointments, screenings, biopsies etc. I'm free of all that now. The foobs look better than the natural ones did and I don't have to deal with any SERMS or AIs. It was a very very good choice for me. Good luck to all here with your individual circumstances and choices.

Jpicch

Hi there. Thanks for posting. Hope you are doing well! I am 3 days post lumpectomy for LCIS. Still don't have final pathology.

The reading is so confusing. I don't want to be on this roller coaster and wonder how you did with mastectomy?

Did you get reconstruction? I feel like mastectomy is the answer but am most afraid of reconstruction. Sounds awful.

Jpicch

Happy that you had a great experience! I must say I have been very discouraged about reconstruction due to horror stories!

I was wondering what kind you had? I am on Long Island. Thinking about mastectomy because I don't want to live with this active surveillance/worry. Funny thing is the mastectomy doesnt scare me -the reconstruction I am petrified of!

MsVeryDenseBreasts

jpcicch, if you search on my screen name "msverydensebreasts" you'll see the journey I went through. I did a post in late February where I summarized the pros & cons of my recon experience. All in all, there have been many more pros. I did not have any trouble with the healing process etc. Let me know if you can't find the post and I will look and provide more detailed direction. Thx.

Jpicch

Thank you! I will look

614

Good luck!

Crescent5

hi

I just want to put this out there because there is very little info about PLCIS, It's all a very personal decision. It's not up to anyone but you. So whatever happened to me, may never ever happen to you, but you should know personal realities.

I was diagnosed with LCIS & ALH (or ADH I don't even remember now) back in 2010. It was confusing and frustrating. There was absolutely NO WAY I was going to consider PBMX for that. My surgeon agreed.

Then after an exisional (sp?) biopsy, they found pleomorphic lcis. That changed everything for me. I remember having to drive my son to school after getting that call, and really just wanting to shake, cry, see my dr ... etc, That little drive took forever.

PLCIS was too much for me. There was not a long enough history since it had only been discovered about 10 years prior to my dx, and there was obviously way too much going on inside my breast. I gave it a year of observation and more & more testing and decided in the end, I wanted this in my rear view mirror. I wanted my life back, I scheduled a PBMX with immediate implant reconstruction.

I needed to be comfortable so I went with local docs. For most of the surgery, that was the right choice. I absolutely could have done better in Boston for recon surgery. I was just too scared to travel for this scary surgery.

I had my nipple and skin sparring PBMX on Friday the 13th (eek!!) in January of 2012. A week later I got the call that they found invasive. I had not escaped it afterall. My cancer was lobular which is notoriously hard to find. I had been through mammograms, and I had had 2 breast MRIs. Nothing showed up. These tiny tumors were 4mm and 7mm and were tested through Oncotype DX. My chance of recurrence with tamoxifen is about 5% which is really damn good. So the surgery pretty much saved my life. My son was 10 when this started. He's 16 today, and I have been there to watch him grow into a very fine young man. There is no price tag on that.

My recon is OK. Not great. It's been 4 years, and I may try another PS (Boston turned out to be a bust afterall - no pun intended lol) but this time I might as well go bigger =D

I'm here today because 6 years ago my son and I had carved our names in a shed at the end of summer. We found that shed yesterday. I had no idea when we carved it that in two weeks, my life was going to change forever,

Today I am a much stronger woman in every sense of the word. The little fears that plagued me are soooooo silly to me now. I faced cancer. I faced scary surgeries.I faced the hardest decision of my life. Truly, there isn't much that can (or will) f*ck with me right now.

Tamoxifen has been OK. The first 3 years were fine ... annoying hot flashes but ok. I had some abnormal and very intense uterine bleeding this year (4th year of tamoxifen) and had an endometrial ablation. At this point in my life, I refuse to give up another body part, so I'm hoping the ablation did the trick and I wont need a hysterectomy. I miss my breasts, I loved them. When I look back, there was absolutely no other choice for me. Had I not had the surgery, the cancer might STILL be growing and invading my body. I may not have lived to see my son become this amazing person.

These days I hardly think about cancer. I rarely think of myself as a breast cancer patient anymore (though technically I am a survivor). And frankly, I do not obsess over the possibility of other cancers. I see my onc twice a year, and he says I'm the easiest patient he has. I know it could have been so much different. I'll never be the person I was prior to fall 2010, but I am better.

Good luck with your decision and everything that comes with it.

Kells

I am dealing with family history and LCIS diagnosis last year. I will not take tamoxifen. If I continue to have issues with new area popping up I am doing a prophylactic mastectomy......unfortunately. I have my surgical team together. Got 3 opinions about LCIS and I wait every 6 mos to see if I have cancer yet. Soooo stressful. I'm about over it. Good luck.

MarilynIllinois

Hello,

This is my first post. A couple of months ago I had an MRI that showed a non mass area of enhancement. This was followed by 2 MRI guided biopsies. I was diagnosed with PLCIS. The doctor's recommendation is for a mastectomy. I was told the 2nd biopsy was to look for invasive cancer, since none was found I was not expecting a recommendation for a mastectomy. I am thinking it over, but will probably go ahead. My husband was especially impressed by the surgeon's comment: "this is curable."

Thanks for all the informative and inspirational posts

Moderators

Dear MarilynIllinois,

Welcome to the BCO community. We are glad that you reached out to our members. Please note that this particular thread has not been inactive since 2016.YOu may want to start a new topic. We hope that you will stay connected here and keep posting. We look forward to seeing you around the boards. The mods

Mandycat

I also have PLCIS. I had a small microi