my LCIS story, unfolding

Welcome!  I'm sorry you're here but hope you find needed support here :-)  My surgery is scheduled for May 3; I've chosen not to have reconstruction.  Under 'surgery, before, during...' there is a May surgery thread you can join.  There are women with many different diagnoses there; I was the only LCIS diagnosis-my family history is strong, but only second degree.

I am looking forward to having surgery and moving on to healing!  This was a clear choice for me.

Wishing you healing :-)

Mabear

khandler - there are two threads on this LCIS forum for pleomorphic LCIS.  I had my bilateral mastectomy 10 weeks ago. No, it is not overkill.  I would recommend reading the two threads.  You will find that there are a few of us who have PLCIS who took the same route as you.  It is a very rare diagnosis.  I know exactly how you feel, and there a few other women on these boards who also have PLCIS.  Please PM me if you want to talk more, but definitely read the two threads.  I will bump them to the top of this forum for you.

I had LCIS back in Nov 08 and had a BPM in Jan 09 and have never looked back. It was the best choice for me. But, it not for everyone because it's a VERY tough decision to make. My reconstruction was done with Alloderm and one step implants.  

All the stress your feeling now is gone after you have this surgery. Not having to worry in the future if they see "something" on a mammo. or MRI. and then worrying do you need a biospy. Years of stress like that would have killed me. 

MistyJ, I'm sending you a clip of my PS talking about the Alloderm and implants. 

 http://wcbstv.com/video/?id=137241@wcbs.dayport.com 

If I can help you with any questions please send me a PM.

Best of luck to all of you

kandler, my story started to unfold the past several years....they were watching a simple cyst, mammograms every 6 months. The radiologist finally cleared me for 1X a year. PCP not comfortable, went to oncology surgeon, needle biopsy done, LCIS dx (absolutely no breast CA hx in my family), lumpectomy followed, radial scar dx, no CA but lots of LCIS. MRI followed, 2 MRI biopsy, NO CA, but LCIS .  I went for a second opinion at JH, CA was missed by the previous pathologist, found in the radial scar only, IDC.  A second surgery completed, ILC, (microinvasive) was added to my previous dx's.  Just completed DIEP bi-mx.  Two times my CA was missed---I was simply done chasing this. These are not easy decisions and applaud your courage.  I must admit this was the best decision for me.  Good luck to you and your family

I experienced the same type of forgetfulness while I was waiting for my surgery date.  In fact, I did a lot of research about cognitive loss after surgery thinking that this might be what I was experiencing (this was after my second surgery, waiting for the date of my DIEP)!  I work at a very stressfull job, and was very embarrassed.  I actually discussed it with my supervisor.  Some people at work suggested that I take some time off, but keeping busy was also helpful.  I found that compartmentalizing was helpful for me.  I'd allow myself certain times of the day to think about it---but there were times when it came out of the blue and hit me!  So, thank-you for sharing and making me feel a little normal.  You might want to mention to your doctor about difficulty sleeping.  There might be some suggestions, even non-pharmaceutical.

Actually for me, as the date approached, I was more and more relieved. Remember, I was misdx after my first surgery, so my fear was that time was clicking on and I was concerned about what may be developing in my other breast.  A very good friend of mine had implants and was very happy with them.  Actually, she's had implants for 20+ years!  How this may impact your violin playing is an unknown---but you are gifted!  The fear of change and how it will generally affect our lives can be incredibly numbing.

I tried to prepare for my bi/mx ---I purchased a camisole that would hold drains---but to find out, it really was not appropriate to wear following my surgery---who knew.  What I did do that was helpful was to purchase some oversized, inexpensive, button down, tops. Only 2, but they are alternated in the wash cycle!  Also, oversized, button down pj's were nice as well.  My husband has been very helpful to "strip" my drains 3x a day.  Having some assistance with this has been incredible.  I also went to the dentist 2 weeks before for a check-up, and met with my PCP as well to keep her in the loop.  A lazyboy type chair with a table close, has been my mainstay of existence.  Hope some of this can be helpful

I know that everyone is different in their recovery, but my bilateral with immediate DIEP was one month ago today and I feel great!! I worried about post-mastectomy pain syndrome and the inability to move my arms and just about everything else, but other than some soreness/tightness/numbness I feel like normal. The soreness is relieved with Tylenol and Advil and is very minor. The tightness is relieved with stretching. And the numbness will disipate with time for the most part.

I am so pleased the have this surgery behind me. With a 4 & 7 year old I wanted to do what I could to be around for them. Plus, with LCIS I could choose the timing of my surgery.

On my blog www.breastcancermom.blogspot.com I have broken down my surgery/recovery by the week so that you can see the progress if you are interested. I wish you the best.

Hi Everyone - my first post.....

I have had fibrocystic lumps in my breasts for years - the massive one (about 50% of my right breast) - had disseminated Calcium since the beginning, for the last 12 years. Had it tested - horrible sewing machine biopsy whilst in the mamogramme machine in 2003, was told it was fibrocystic. The process was dreadful, no anaesthetic was given in the lump - agony.

Since then, I've been self examining and there has been no change. I was then recalled after my first O/50 screening mammogram (at 53) in Jan 10, and underwent what I called "apple core gun" biopsies, 14 cores. The results of the biopsy showed one point of abnormal hyperplasic growth, plus stenosing adenosis etc etc. I was told the same 'probably nothing but' so went ahead with the recommended 'large bore' biopsy. This showed LCIS, but I did see pleomorph somewhere in the notes - so I'm guessing I have that cell type too.... So, I went on to have an MRI scan plus image enhancer - which fortunately showed nothing invasive - what a relief.....Very stressful

Anyway, my BCsurgeon has recommended that I opt for annual mammogram/MRI....but I have requested bilateral Mastectomy with immediate reconstruction - using implants and liposuction fat. The BC Surgeon is happy to do this for me. Currently waiting for an appt with the plastic surgeon and the Psyche Evaluation which is compulsory over here .... My operation should be around the end of June.

I am very scared of having the Op, but feel it is the best for me..... otherwise I'd be anxious the whole time and would end up making myself ill. I have found it very comforting reading your comments to see that there is life after BC diagnosis

I read your post with interest.  I am set for the simple mastectomy June 1st.  I have had raised eyebrows from some family members.  My husband and I made this decision together and we are standing by it.  We are hoping that my insurance will see it our way.  I have a mother and grandmother with BC and a great-grandmother with ovarian cancer.  As you say it is my decision.  This is a wonderful site and I can see that is will be so useful over  the next few months.

aab