VERY CONCERNED! Does anyone just watch it and take no meds!!

Chris38 - There are many questions that you need answers to, before you decide that "watchful waiting" is the path is where you want to go.  How did you get diagnosed? If it was by a needle biopsy, it is usually standard procedure to get an excisional biopsy to ensure that there is no DCIS present.  Was the LCIS classic or pleomorphic? There is a big difference between them.  Was it ER/PR positive or negative? Did they test for HER+/-?

I would suggest that you get your pathology report and understand exactly what your diagnosis was.  This website has a good primer on how to read your pathology report.  There are a lot of different diagnoses that are critical to understanding what is going on.

You may be able to be totally satisfied with watchful waiting, or you may need to take more steps, depending on your individual circumstances.

Please let us know what you find out.  There are a lot of ladies here that have experience dealing with LCIS, and we are more than willing to help you out.

Most of all, be calm.  Take your time to work through your diagnosis.  It is not an emergency, so be sure that you educate yourself before you make any final decisions. 

And come back here, and let us know how you are doing.

There may be relatively few women who respond saying they chose watchful waiting.  That's because usually people use a support website because they have an unusual situation, or are having a difficult time of deciding, or are having problems.  People who make their choice and don't have emotional issues  usually just go on with their lives.

This study (from 2005) gives some idea what women chose in this one small study.

 Fourteen patients (35%) were placed on a selective estrogen-receptor modulator. Eleven patients (28%) had bilateral mastectomy. Three patients had unilateral mastectomy. Screening recommendations included an annual mammography (64%), a professional examination (64%), and a monthly self-breast examination (75%). http://www.ncbi.nlm.nih.gov/pubmed/15862506 

This means that 12 people did not chose mastectomy or SERMs, or about 30% of the group. This is about as many who had mastectomy or SERMs.  But you see many more women here who have had/are planning to have mastectomies here than I see posting on this LCIS forum.  You may also want to check the Alternative, Holistic, and Complementary therapy forum.

No one should pressure you what to do. You need to do what is right for YOU, no matter how many other people make the same choice as you.

I was diagnosed with LCIS and DCIS in my right breast. I had a double mastectomy and reconstruction. I chose to do both breasts as I hoped that would cut down any chance of reoccurance even with the left breast not showing any signs of cancer. After the surgery I got a good pathology report saying it was still DCIS with negative margines and clear lymph nodes. I went to the oncologist today very worried about taking the anti-estrogen drugs as I went into early menopause in my late 30's and now am 49. He said he would not do the drugs as for me he thought the side effects outweighed the benefits. Where I should be so thrilled with this and relieved. To my surprise I'm still just scared of it coming back. I wonder if that ever goes away. I'll talk further with the BS as to whether I should get another opinion. As much as I feared those drugs especially since I already have other medical issues I'm surprised I'm still so scared.  Does anyone else have this diagnosis and this recommendation? 

I have LCIS left behind after a lumpectomy for PILC which was HER2+ve. They got clean margins on the invasive tumour. LCIS is NOT breast cancer - read about it on this website. It is not the same as DCIS. If your LCIS was pleomorphic then more agressive treatment may be required, but classic LCIS can be there for many many years and do nothing. It is however, an indicator for being relatively high risk for invasive cancer. I have had a second opinion regarding the LCIS left behind and am only going to have close monitoring. Neither BS suggested any more surgery. Also my oncologist said not to worry about it. I will be having Arimidex as part of my treatment.

I am worried about the other breast and will have an MRI later in the year.

Sue

Hello Chris,

I am another Chris. I have LCIS 6mm and had lumpectomy 2 weeks ago - sentinel node biopsy was negative. My Oncologist - a Professor known for his crusty and direct manner [which I asked for] told me I had a "trivial cancer" and recommended no drugs/hormones etc. I meet the Radiation Oncologist in a few weeks and it will be interesting if they go down the wait/watch path as well.  My "problem" if you can call it that is my survival stats are 99.75% and the side effects of treatment [strokes, clots, cognitive deterioration, skin contraction, bone issues] is 1-6%. So to get say a tiny, weeny increase in my survival stats means running much higher risks of causing other morbidity and even mortality. So while I am scared about monitoring and not having drugs, radiation etc, I am actively considering the evidence in favour of monitoring.  

Hi Chris,

you've posted your question a while ago (Posted on: Feb 7, 2010 04:36 am) and haven't replied to any messages since. So, before I get in to the trouble of answering your question, why don't you talk to us first?

Regards,

Ronald 

Hi Ronald,

Just to clarify - are you the same Ronald / AliceInWonderland  from here:

http://community.breastcancer.org/forum/7/topic/692216?page=1 

and here:  http://anaximperator.wordpress.com/2009/07/13/german-new-medicine-hamer-house-of-horror/

?

Hi thenewme,

yes it's me allright.

regards,

Ronald

Hi Chris/Cocococo,

Have you considered getting a second opinion just for your peace of mind?   It sounds as if your prognosis is extremely good, so watchful monitoring may be indicated in your situation.  If you have any doubts, questions, or even just for confirmation, a second opinion may help solidify your decision.  Best of luck whatever route you choose!

I have extensive LCIS and PLCIS and have had a small invasive ductal carcinoma. I had a lumpectomy for the cancer and Mamosite radiation. However, I take Arimidex and "watch" because my stats for a reoccurance or new BC are still low since the Arimidex should keep the LCIS dormant. This disease though not cancer does put us in a higher risk category. Just an FYI the medical pathologists are trying to get LCIS renamed "Atypical" something..... because having the carcinoma in there is confusing and scary to people.

Linda

I was diagnosed with LCIS in March after a stereotactic biopsy.  My Physician from the Sagoff Center is a wise and brilliant Physician who has been in the "breast" business for 40 years.  He said you do NOT have cancer.  We will follow you every 6 months to make sure.

I feel great and am sad to hear the stories of women being convinced that they must take drugs and or remove their breasts.  My second opinion was at Mass General where the breast surgeon agreed with Dr. Sadowsky.

I wanted to update my previous post.  I was planning on going forward with the BMX for my LCIS.  My BS said great, let's do a mammo and an MRI so there are no surprises at surgery.  Mammo came out perfect, but MRI showed a suspiscious lump.  Turned out to be a 1.5cm IDC!  I have since had the BMX and am now going through testing to determine what to do next.  I have to say that I wish I had taken care of this five years ago...I wouldn't be in this position now.  My previous BS was not that concerned about LCIS, and I was not followed as closely as some of you on this board.  I would say if you are going to "watchful wait," please get those alternating mammos and MRI's every six months.  I wish I had!!   

Mommcat, no one should have to go through this.

I know at least one poster with classic LCIS (with weak family history) had screening MRIs and their insurance refused to pay saying it was 'medically unnecessary'.  I guess some insurance companies require a family history or genetic predisposition or history high dose radiation (such as for Hodgkin's disease treatment) to qualify for screening MRIs. http://community.breastcancer.org/forum/95/topic/756974?page=1#post_1961441

I am now six months out from surgery - wide local excision. Had MRI [no detectable cancer cells] , ultrasound [a seroma -  a fluid filled sack from the surgery where two sections not sealed together - I will have it aspirated off in near future] and mammogram [clear]. Sticking with my no radiation and no meds approach. Apologies to everyone here if I in any way attracted postings from that man Ronald who is not a breast cancer patient and seems to be popping up here and there extolling the virtues of his girlfriend having no treatment. May I assure the women with breast cancer on this site - I am very careful to check all my statistics and I only ever rely on medical information from mainstream, internationally accredited medical journals and other high quality sources. I made a decision never to drink alcohol ever again after reading research results about breast cancer recurrence rates even with as little as one drink a day. I was never a significant drinker so not a huge adjustment. I am taking a daily asprin after reading about differences in recurrence rates of BC amongst the Nurses research Group. I have added a beta blocker to my anti hypertensive medication after reading about its effect on recurrence rates. I changed my hay fever medication to Tranliast/Rozaben [I order it from Korea - its been used there for 20-30 years] after reading about its effect on recurrence rates.  I was unable to locate injectable Ketorlac as its been recalled in the US where it is manufactured after some irritations developed at the injection site. Ketorlac as a one off anti inflammatory in the surgical site has some great results in lower recurrence rates. I am adding whatever I legitimately can to lower my risk of recurrence as well as reduce problematic oestrogen, sugar and cholesterol. I am exercising an hour a day and adding all the cruciferous vegetables I can along with other food with a reputation [ as opposed to hard scientific evidence] for apoptosis. I do not find this regime to be onerous or unbearable but its not for everyone.

I was first Diagnosed in 2007 with ILC 2.5cm I had a right mascetomy w/ trans flap reconstruction. I chose to have no treatment but followed up with MRI's had no recurrence for 2 years. 3rd year recurrence on trans flap, had a lumpectomy clear margins. 1 year later another recurrence in same area .05cm. I just had a double mastectomy, lymph nodes are clear, and bone scans and body scan are clear. I will be having radiation on R breast for 5 weeks and thinking about arimidex. I still will not agree to chemo. I'm not sure about reconstruction really tired of surgeries and all the things they don't tell you as to what your boby feels like after surgery.