what to do

millie77

I  first went to my docs about 4 months ago as im constantly anaemic. I had waited an hour in the waiting room and problably took up about 5 mins once in. At the end i mentioned to Doctor that i had a lump and could she check it out. She replied that she didnt have time and had a full waiting room. I felt pretty angry as i had sat patiently waiting for an hour. I went home and wrongly took the " well if they dont care-i dont care" attitude...My daughter has been unwell for a while and my health has generally taken a back seat. Anyway i went back 3 months later and was referred to the hosp. Id had a cyst  before so i presumed it would go the same way. I had a mammo and ultrasound which showed a dark lump. They decided that they would do a full biopsy there and then. I was told to come back in a week for results. That was such a long week. My results showed abnormal cell changes so they advised me to have the lump removed. i went in for a lumpectomy 2 weeks later. The surgeon said there was another lump behind the first so they removed both......i was very low after the op, the scar looked yuk and i was worrying about the results. My son had also gone of to uni so everything together was just getting me down.... I went back for the results of the biopsy of removed lumps. My surgeon said i have Lcis and that my options were to watch and monitor- consider double mastec- I can't take tamoxifen as i have had a previous dvt...............     from what i have read on here it is important to know what type?.......... how do i get my pathology report?????  and how do i get an mri?........I should add, that my scar looks really good now and when i look back at that now its nothing compared with what other people are going through..xxxx

Raj20

You better go for a second option. There are plenty of options to plan your treatment. You try to make up your mind fully prior to take final decision. No worry, medical science is dramatically developed. What you have to do is always be positive and  your will power should be very strong only then you can overcome everthing in cool mind. 

leaf

Ask your surgeon for a copy of the pathology report. It is your right to get copies of your medical information.  You may have to pay to get a copy (and it may include secretarial time), but most of the time they are only a page or two long. Classic LCIS was first described in the 1940s, and pleomorphic LCIS was not even described until the ?late 1990s . Based on that, I would assume there is more classic LCIS than pleomorphic.  Some classifications/labels can change over time. Different pathologists can have different opinions.  If in doubt, get 2nd opinions.

Since you already had a surgical excision, do you want MRIs to be screened in the future?  Or are you concerned about other things which could be going on in your breasts now?

In either case, you need to check your insurance whether or not they will cover them.  Unless you have a significant family history of breast/ovarian cancer, you may have trouble getting your insurance company to pay for *screening* MRIs.  If you want an MRI to see if there is something *else* going on in your breasts, you would probably have the most luck with getting that now.  You can ask your doc, but do, in addition, find out if your insurance will pay.  The reason why I include that caveat is that MRIs can cost several thousands of dollars, and some LCIS women have had to end up paying for them out of pocket.

There is no rush to make a decision what to do.  The only choice that matters is the choice that YOU make.  Don't make your choice based on how many posts you see of people who have chosen one option or another.  It is a very personal choice.  There may be more posts here about women who chose bilateral mastectomies because people tend to post if they are undergoing something requiring more energy or difficulty.  (I am totally supportive of those who choose PBMs for themselves or whatever choice one chooses.  My breast surgeon said she did not want to do any more surgery on me (besides the excision she did.  I have classic LCIS.) I did not like her at all.) 

DocBabs

What you have to do first ,in my opinion, is find someone that will monitor whatever route you take. They will be the one to contact your insurance and work out whatever needs to be doen so that you can get the care that you need. I have LCIS , also diagnosed at the time of a surgical biopsy to remove an area of calcifications. Straightforward LCIS, NOT CANCER at this time.It may or may not ,in my lifetime, develope into a cancerous lesion . That's why you need to be monitored.I have an oncologist that I see 3-4 times a year for breast examinations. She also co-ordinates all my mammos ,MRI's, ultra sounds etc.Every 3 months some sort of radiograhpic exam is done and all reports are sent to the oncologist.I too have a history of DVT so Tamoxifin was not a choice for me.I also see my gynocologist every 6 months and have pelvic ultrasound done.For me, this regeime is fine. I know that I have a somewhat higher risk of developing breast cancer but I don't have right now and I have enough screening going on so frequently that if anything should show up it will be dealt with immediately.This what I chose to do for now . Some here have chosen to have bilateral mastectomies.That's something that is always an option for me  and should ANYTHING more develope I will not hesitate to go that route.Whatever you decide to do will be what's right for you but I do urge you to find someone that will be there just for you. It's time to focus on you and your life.

leaf

Docbabs is right.  Usually either an oncologist or breast surgeon co-ordinates your monitoring. Different places/people do differ as to the frequency/intensity of monitoring. 

I have never had a breast MRI (I was told by a major institution that I have too much scar tissue from my sole excision!), but initially for the first 2 years had mammo or ultrasound every 4 months or so,  because of 6 month followup of benign biopsies.  After that, they decreased (when they found no more changes on my mammos.) Currently, I'm on twice a year clinical exams and yearly mammograms.  I asked at the major institution (an NCI certified place) and they said in 2007 that's what they do (twice a year clinical exams and yearly mammos, and offer tamoxifen) for their LCIS patients who have had the LCIS area excised.

I'm not trying to imply that I'm comfortable with this regimen, or that its appropriate, but I just wanted to give you some idea about the range of regimens that are considered 'appropriate' at different places.

dlb823

millie, everything about your care to date rings alarm bells for me.  You need to find another primary doctor -- one who has better time management skills and can take a few minutes to check a symptom as concerning as a breast lump -- and you need a second opinion on the results of your lumpectomy.   From what you've told us, unless you pressed your surgeon about possibly doing a bi-lateral mast., the recommendation for one seems pretty cavalier and out there at this point to me.  I'm also surprised that you didn't have an MRI prior to surgery, to be sure you and your surgeon knew what you were dealing with.  Do you know if he got clean margins and the size of what was removed?

As far as getting your pathology report, simply ask for a copy wherever it was done.  You will have to sign a release form, and they can send it to you or you can go and pick it up.

Without going into a lot of detail, if you decide to take the watch & monitor route for now, I would suggest reading up on the many things you can do that may have some impact on your future risk -- things like balancing your hormones, being sure your body fat is low, eliminating certain foods from your diet, getting plenty of exercise, checking your Vitamin D and iodine levels, etc.  While none of these things has been proven to eliminate or reverse LCIS or any form of breast cancer, they all play into our individual situations, and with the in situ bcs (LCIS & DCIS) you may have time (guided by a doctor, of course) to see if a combination of these things makes any difference in your situation.  There are also natural estrogen inhibitors such as I3C, DIM and Grape Seed Extract that some women take when they can't or don't want to use Tamoxifen.   Traditional doctors won't tell us about these options, but naturapathic doctors and integrative oncologists can help you learn more, if you're interested.      Deanna 

leaf

 There is a lot of uncertainty about exactly how much subsequent breast cancer risk classic LCIS (and nothing worse) confers, and that goes at least double for PLCIS.  So the amount of risk of breast cancer and appropriate treatment regimens of these conditions are certainly controversial.

Since LCIS (with nothing worse) is often multifocal and bilateral, and usually cannot be detected by mammogram, ultrasound, or even  reliably by MRI, they normally do not require clean margins for LCIS with nothing worse.  (The only way they could get clean margins is by doing bilateral mastectomies.)  Probably most classic LCIS (with nothing worse) patients never will go on to get breast cancer (at least if they don't have a significant family history.)  I have usually seen figures of a lifetime risk of bc for classic LCIS with nothing worse as about 30-40%.  (In contrast, many women with a deleterious BRCA mutation may have a 60-90% lifetime chance for breast cancer.) They know the multifocality and bilaterality because before, say, the early 1990s, they routinely did bilateral mastectomies on all women with LCIS (and nothing worse), and they could look at the breast specimens.  After they found lumpectomy plus radiation was often adequate for early invasive breast cancer, many breast surgeons felt that bilateral mastectomies were overly aggressive as a routine procedure, and stopped routinely doing PBMs for LCIS (and nothing worse) patients. (This probably applies to classic LCIS.  PLCIS probably didn't exist as a separate category at the time.) I get the impression that SOME breast surgeons only offer PBMs to  classic LCIS patients with a substantial family history.   Since PLCIS is so new, the risk and treatments have certainly not been established.

This is from the NCI site

Lobular Carcinoma In Situ

Introduction

The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer. This risk remains elevated even beyond 2 decades, and most of the subsequent cancers are ductal rather than lobular. LCIS is usually multicentric and is frequently bilateral. In a large prospective series from the National Surgical Adjuvant Breast and Bowel Project with a 5-year follow-up of 182 women with LCIS managed with excisional biopsy alone, only eight women developed ipsilateral breast tumors (four of the tumors were invasive).[1] In addition, three women developed contralateral breast tumors (two of the tumors were invasive).
Treatment Option Overview

Most women with LCIS have disease that can be managed without additional local therapy after biopsy. No evidence is available that re-excision to obtain clear margins is required. The use of tamoxifen has decreased the risk of developing breast cancer in women with LCIS and should be considered in the routine management of these women.[2] The NSABP-P-1 trial of 13,388 high-risk women comparing tamoxifen to placebo demonstrated an overall 49% decrease in invasive breast cancer, with a mean follow-up of 47.7 months.[2] Risk was reduced by 56% in the subset of 826 women with a history of LCIS, and the average annual hazard rate for invasive cancer fell from 12.99 per 1,000 women to 5.69 per 1,000 women. In women older than 50 years, this benefit was accompanied by an annual incidence of 1 to 2 per 1,000 women of endometrial cancer and thrombotic events. (Refer to the PDQ summary on Breast Cancer Prevention for more information.)

Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS.
Treatment Options for Patients with LCIS

1. Observation after diagnostic biopsy.

2. Tamoxifen to decrease the incidence of subsequent breast cancers.

3. Ongoing breast cancer prevention trials (including the National Cancer Institute of Canada's trial [CAN-NCIC-MAP3], for example).

4. Bilateral prophylactic total mastectomy, without axillary node dissection.

http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5(emphasis mine)

millie77

my goodness thankyou so much for taking the time to reply to me everyone.....so kind......My surgeon said to check myself regularly and go back in a year for mammo.......nothing else......I apparently have 6 cysts on the other breast which to be honest i can't even fine! so my chances of spotting anything is pretty slim. My first lump which was removed was quite large. I shall take on board all the advice you guys have given. I shall contact the hosp and get pathology report but not quite sure what i should do with it???...I don't have money to pay for a second opinion... Im not panicking about this but i would like to think i am doing what ever i should be doing....Are most people tested for the gene? or not..

 thanks again and take care..xxx

lago

Millie, contact the American Cancer Society. They may be able to help you or direct you to places for treatment funds.

leaf

You can read the pathology report to see what it says.  If you have problems, post the parts that you are having trouble with, and we may be able to help you decipher it.  Or, if you have an iPhone, you may be able to download the app listed above, or check the breastcancer.org diagnosis sections.

Normally, people only get referred for genetic testing if they have a significant family history, or perhaps if they are diagnosed at at early age (early being before the age of 50.)  Only about 10-15% of breast cancers are thought to be from deleterious single gene mutations (by far the most common being BRCA1 and BRCA2.) About 70% of breast cancers are thought to not have any obvious cause (besides being a woman.)

These are the recommendations from the US preventative task force for women who are more at risk of having a BRCA mutation.  If you have a family history that is unusual so there are few females, or few children in a generation, then your  family may need further scrutiny by a genetics counselor.  I had genetic counseling x1 only in 2006, and it cost me about $300 out of pocket. I was referred because my paternal grandmother had bc, I didn't know at what age at the time, and she had only sons.  I was told my risk of having a BRCA mutation was quite low, about 2-4%, about the same risk as an AVERAGE Ashkenazi woman.

These recommendations apply to women who have not received a diagnosis of breast or ovarian cancer. They do not apply to women with a family history of breast or ovarian cancer that includes a relative with a known deleterious mutation in BRCA1 or BRCA2 genes; these women should be referred for genetic counseling. These recommendations do not apply to men.

Although there currently are no standardized referral criteria, women with an increased-risk family history should be considered for genetic counseling to further evaluate their potential risks.

Certain specific family history patterns are associated with an increased risk for deleterious mutations in the BRCA1 or BRCA2 gene. Both maternal and paternal family histories are important. For non-Ashkenazi Jewish women, these patterns include 2 first-degree relatives with breast cancer, 1 of whom received the diagnosis at age 50 years or younger; a combination of 3 or more first- or second-degree relatives with breast cancer regardless of age at diagnosis; a combination of both breast and ovarian cancer among first- and second-degree relatives; a first-degree relative with bilateral breast cancer; a combination of 2 or more first- or second-degree relatives with ovarian cancer regardless of age at diagnosis; a first- or second-degree relative with both breast and ovarian cancer at any age; and a history of breast cancer in a male relative.

For women of Ashkenazi Jewish heritage, an increased-risk family history includes any first-degree relative (or 2 second-degree relatives on the same side of the family) with breast or ovarian cancer.

About 2 percent of adult women in the general population have an increased-risk family history as defined here. Women with none of these family history patterns have a low probability of having a deleterious mutation in BRCA1 or BRCA2 genes.http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical