Am I a BC Impersonator?

I am an LCIS sister with surgery scheduled and am wondering if I am doing the right thing.  Do you have feeling in your breast after the surgery?  Did your pathology show anything else?

I have been doing MRI, Mammo, & US every six months for the past two years and feel I may be pushing my luck.

Thanks for any input.

Hi..I had bilats too, and am very thankful for the timing of my surgery. Personally I think the "  BC survivor" term in my head really usually refers to those women who are fighting invasive disease. It is such a different, and much higher stakes proposition...and they are going through the big ticket experience. I don't think anyone who does not have invasive disease can understand what it really means.....In general, I see myself as a " Surviva!!" like the Destiny's child song, of a lot of things in  life.....I've been through some boobal  stuff and it has changed me. This month and all that it represents is an attempt to say that all women who have had BC touch their lives, are one in the fight against it. At least that's the spirit I'm embracing.

I think you're a bc survivor. 70% of my tumor was LCIS with 30% ILC. You were just able to treat it before it became invasive. I would have done the same thing had I known beforehand. Mine was never picked up on a mammo.

Suz

You go, girl - follow your heart!



When I went for my major university consult for high risk for breast cancer, on their written questionairre, they asked if I had a history of breast cancer. I circled both yes and no. Then I said it depends on how you define breast cancer.



I am tired of telling docs "I have LCIS and according to the NCI website most oncologists consider it benign. It only makes me at high risk for breast cancer." Then I watch their raised eyebrow. I don't want to spend 5 minutes of my time trying to explain I am not in denial, especially when I am not seeing them for my LCIS.



Last time I said I had lobular neoplasia (LCIS). That worked better. Then he asked me what organ.



Leaf (LCIS + ALH)

From what I understand  from my own experience, the adh versus LCIS diagnosis is often a visual judgment call...accounting for the differences in pathologist responses to the same slides. I researched the facility that had the most " Breast Traffic"  in my region, and the one that is an NCI place, for my second opinions. They upgraded my diagnosis and had several pathologists who deal pretty exclusively with cancer, in large volumes since people travel there for treatment.....unlike in a regular hospital setting. Before you make a decision, perhaps considering sending your slides to someplace like MD Anderson, Sloan Kettering, Duke, etc...would be of use to your decision making process.

Ophelia:

Just wanted to share my experience with getting my slides re-read at a major university. They said up front they charge >$500 per biopsy or excision. I had my LCIS excision reread, as well as my 2 negative biopsies.



They charged over $1600 to look at a total of 4 slides. Only after the fact did I find out that pathologists at my biopsy/excision institution select how many and which slides to send.



My LCIS excision had at least 16 pieces of tissue (per the path report). They sent 2 slides to be reread.



So

a) You may want to inquire about getting a 'representative sample'.

b) Be prepared for the cost (which was out of pocket.)

hello everyone,, I am going crazy here,, abou two years I got a knot in my right chest wall the my arm began to shake like there is something blocking the muscle now abou a month ago the lump in my chest is bigger and my right breast has a large purple color to it and the skin is raised up quite a bit around i'm talking a large area abou 5in long by abou 7in long my lymp nodes around my collar bone and in my neck on the right side are swollen ,, whent to the doc he gave me anibotics had a mammo had a MRI laying on my back all came back normal , I just dont understand how you can have a swollen purple breast lump in your chest and swollen lymp nodes and all the test are normal ,,, my breast is not itchy my nipple has flatened some ,,,, can anyone out there give me any advice as what I can do , it just seems the doctors are making me feel like im crazy,, Thank You for your time to read this ,,, Judy

Hi: I did a dbl masectmy in July bc I am brca2 (very dense in my family with 7 out of 12 cousins having bc). Post surgery finding of lcis.  I am so grateful to have the chance to get rid of breast tissue prior to a finding of bc.  The surgery was not terrible and I had the implants put in last wednesday.  Will be doing the ovary removal in december.  My cousin had lumpectomy last month with rads and just was told the tumor was moderate and therefore now needs chemo.  Here is the hard part:  how do you tell people that you think they need to be more aggressive with their treatment? 

Judy, I wouldn't let that rest.  I've heard too many people who were put off by their docs, only to find out later that valuable time was wasted in their battle with BC.  Pursue it until you either have a clear biopsy, or you are certain that you have nothing to worry about.