New to LCIS and forums

MistyJ

Hello.  I have been reading the discussions since February, and have really appreciated the information I have gotten.  I have been listed as high risk due to several factors.  My youngest sister died from BC at the age of 18, that was something I would not wish on my worst enemy.  Almost as hard was watching and being able to do nothing. no other family history though.  I also have had several abnormal mammograms which led me to a referral to the area Cancer Center that is affiliated with a teaching hospital and Medical University.  I feel very very comfortable with my surgeon, who is an oncology surgeon that specializes in High risk BC patients. He has had me on a regiment of annual MRI and annual mammogram alternating every 6 months with 2 visits with him to do a breast exam.  In February I had an abnormal MRI with two areas that illuminated with the dye, one of which had what appeared to be circulation in and out....which they explained as more suspicious. An ultrasound guided biopsy was scheduled, but they were unable to locate the area with ultrasound.  An MRI guided Core needle biopsy gave a diagnosis of LCIS.  My surgeon recommended a Needle/wire guided localization biopsy as outpatient surgery to rule out DCIS and IBC.  Thankfully, NO IBC at this time.  Meet with the surgeon tomorrow to discuss prophylactic (well, risk reducing) mastectomy bilaterally.  I have researched online until my eyes feel like they are going to pop.  The amount of contradicting information can be overwhelming, so I have my list of questions like a good informed patient .  I have a wonderful husband and two amazing preteen/young teen daughters.  With all I have learned, I would rather not sit and wait to see if I will be one of the unlucky ones that end up with IBC and have to do surgery and chemo and rad.  when now I can just get away with surgery.  I also am very unnerved by the inconsistency with the information......seems like they really can not tell me what my real risk is...and if LCIS is a precursor or just a risk.  I am amazed at all of the women on here that have had more things diagnosed after Mast. that was initially not diagnosed.  However, I still hate that I feel worried that people will think I am being overly dramatic for having the bilat. mast. if that is what I choose to do.  Anyone else feel this way at all?

cornellalum

MistyJ -

It sounds like you have done your homework, and are very knowledgeable about your condition.  It also sounds like you have an excellent medical team on your side.  So you are already way ahead of the game.  With LCIS, there is no wrong or right way.  And you are right, no one can tell you what your risk is.  You need to do what is right for you.  Don't worry about what anyone else thinks. You are the one who will have to live with the decisions you make. 

I had Pleomorphic LCIS, and I made the decision that I needed to make for myself.  There were plenty of folks on both sides who gave me the benefit of their knowledge and opinions.  But in the end, I had to make the decision.  And because I made the right decision for ME, I have had no second thoughts.

Take your time.  Then do what you feel you need to do.

leaf

Have you considered asking for genetic counseling?  If you are BRCA positive, or another heritable single mutation positive, this may play a role in your decision.

Genetic counseling should not tell you whether or not to get tested, but just give you more information (and counseling).  I found it very helpful, even though I was considered low risk for BRCA.  Genetic counseling does NOT commit you to having genetic testing.

Of the papers I have read, they say most LCIS is marker for higher risk for breast cancer. But they also say that classical LCIS alone (i.e. type A - the vast majority of LCIS diagnoses) can 'in a small number of cases be a nonobligate precursor' for cancer.   I have NEVER seen a statement that LCIS IS a precursor for cancer - that's because not everyone who has LCIS goes on to get breast cancer. The 'nonobligate' adjective is important.  That means in a small number of cases cells are NOT committed to becoming cancerous - it is NOT inevitable they will become cancerous -they may become cancerous, but they may also just sit there.   Of the LCIS women who go on to get invasive bc or DCIS, I think most cancers occur in areas that were thought to be LCIS-free.  (But of course, they can't really know that without having a mastectomy beforehand, since LCIS is usually not detectable by clinical exam, ultrasound, or mammogram. Most LCIS (with nothing worse)  is found not AT, but adjacent to, the lesion that prompted the biopsy.  )

No one will also define 'small'. 

When I told my cousin about my interest in BPMs, she did discourage me - she had a friend who had BMs, and regretted it. I don't know this friend's circumstances. But I didn't like that - I wanted to have the CHOICE FOR MYSELF. (The first thing my BS said to me after they had found LCIS on biopsy, BEFORE knowing my family history, was 'If you want PBMs, I'm going to fall down in my chair.'  That is one of several reasons why I can't stand her, but that's a different story.) 

In this 2004 Cochrane study about prophylactic mastectomy,

Twenty-three studies, including more than 4,000 patients, met inclusion criteria. No randomized or nonrandomized controlled trials were found. Most studies were either case series or cohort studies. All studies had methodological limitations, with the most common source of potential bias being systematic differences between the intervention and comparison groups that could potentially be associated with a particular outcome...While published observational studies demonstrated that BPM was effective in reducing both the incidence of, and death from, breast cancer, more rigorous prospective studies (ideally randomized trials) are needed. The studies need to be of sufficient duration and make better attempts to control for selection biases to arrive at better estimates of risk reduction. The state of the science is far from exact in predicting who will get or who will die from breast cancer. By one estimate, most of the women deemed high risk by family history (but not necessarily BRCA 1 or 2 mutation carriers) who underwent these procedures would not have died from breast cancer, even without prophylactic surgery. Therefore, women need to understand that this procedure should be considered only among those at very high risk of the disease. For women who had already been diagnosed with a primary tumor, the data were particularly lacking for indications for contralateral prophylactic mastectomy. While it appeared that contralateral mastectomy may reduce the incidence of cancer in the contralateral breast, there was insufficient evidence about whether, and for whom, CPM actually improved survival. Physical morbidity is not uncommon following PM, and many women underwent unanticipated re-operations (usually due to problems with reconstruction); however, these data need to be updated to reflect changes in surgical procedures and reconstruction. Regarding psychosocial outcomes, women generally reported satisfaction with their decisions to have PM but reported satisfaction less consistently for cosmetic outcomes, with diminished satisfaction often due to surgical complications. Therefore, physical morbidity and post-operative surgical complications were areas that should be considered when deciding about PM. With regard to emotional well-being, most women recovered well postoperatively, reporting reduced cancer worry and showing reduced psychological morbidity from their baseline measures; exceptions also have been noted. Of the psychosocial outcomes measured, body image and feelings of femininity were the most adversely affected.  http://www.ncbi.nlm.nih.gov/pubmed/15495033

Some breast surgeons insist that their patients wait at least 3-6-12 months before PBM, because its a permanent decision, and they want to make sure that's what the patient wants.  

Just as cornellalum says,  "Take your time.  Then do what you feel you need to do."

mabear

Hi MistyJ; my history is different but I am on the journey seeking PBM for LCIS, ADH and other 'markers' (sclerosing adenosis, radial scar and the like).  I agree about the eyepopping situation-there is much to read and much to sit with.

 I've been pleasantly surprised with the positive support from family/friends and most Drs.  I had a recent visit with a breast surgeon that was very against it (thought she just wanted me to wait but a phone call from her this morning revealed she was just against it). 

Trust yourself :-)

I am so sorry about your sister.  Wishing you the best in your decision!

Mabear

MistyJ

Hey there!  Sorry I have not replied sooner.....good reason though...lots of family in town to visit this last month and a half!  So I am in a different place mentally than my last post though!  I have come to terms with my worry about others opinions about my decision!!! Thanks to the Nurse practitioner! I know in my gut that PBM is right for me.  I am not afraid of surgery, and not afraid of breast tissue being gone, not afraid of some pain to get through, not worried about my sense of self worth changing. I am me real breasts or not.  I AM afraid of not being here with my husband and children for a long life.  I am NOT a gambling person.  I have realized that I consider ANY lower risk worth it.....and so 90ish percent lower seems like a no brainer to me.  I am no longer researching LCIS over and over, but have moved on to researching reconstruction.  Just consulted with a plastic surgeon who said I am healthy and a good enough candidate for any option I decide I want.  That is kind of overwhelming, but I am leaning toward skin sparing (not nipple sparing) PBM with direct to implant with alloderm and cohesive silicone gel implants.  I looked at the autologous reconstructions, but they seem scarier to me....and I want to recuperate quicker.  This decision has actually been a little harder for me to make. Any comments would be appreciated ! I Consult with the genetic counselor Thursday, not really to use for surgery decision since I have already decided...but to gauge my children's risk.  I feel good about my decision.  I have always been the type of person who does not want to say later, "I wish I had".  I can not see myself saying I wish I had not done all I could to try to prevent cancer, but I sure can see myself saying I wish I had done more!  So I am going to do everything in my power to take my risk to the lowest possible point and feel good about it!!!  They are our bodies ladies, and it is our future at risk!!!