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Topic: First time posting

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Feb 19, 2013 09:30AM

bobogirl wrote:

Hello everyone, I have been reading your posts for a long time now, but I have just gotten up the courage to post one myself.  I am 43, misdiagnosed in 2008 with ILC, rediagnosed with a very rare cancer in the breast (if it recurs distant, median life span 18 months).  Partial mastectomy; tumor does not respond to chemo.  Everyone wants to study it at tumor panels.  I've got two seven-year-olds and a (female) partner of 17 years.

Obviously the misdiagnosis was stressful and confusing.  And doctors don't really want to talk about the kind of tumor this is (even though they ask me for slices of it and study it in groups).  I've sought second and third opinions.  The last guy I went to looked my tumor type up on the internet, right in front of me.  I worry about the more common type of BC too -- my paternal grandmother died of BC when she was about my age.  This hasn't put me in a high-risk group, however.

I've got another lump -- close to the chest wall, upper outer quadrant, movable, painful, growing.  I realize it is probably nothing.  Trying to get my (annual) mammogram date moved up.  I know I'm likely facing the works: ultrasound, mammo, biopsy.  This will be my third time around (had a lump in the opp breast three years ago).

My family is not at all supportive.  My partner is -- but my family completely ignores my BC.  My mother never asks about tests, about how I'm doing.  My sibs don't either.  They've decided they don't want to know.  When I was re-diagnosed with this rare tumor (low-grade malignant, doesn't tend to mets, does tend to recur), it seems my family chose to think it was nothing.

It's true also that my partner chooses not to think about it.  Lately I don't talk about it at all, with anyone, even when I'm worried.  When I had the first lump, I had my partner feel it -- it was growing -- and she said at the time that it was probably nothing.  This was a kind of negation, and in retrospect I realize it contributed to a delay in my getting treated.

PCP tomorrow.  Will she palpate?  That breast is so gouged and scarred, I hate for anyone to look at it.  Again, I don't talk much about this with anyone.  And very few of my friends know I had BC at all -- just the two who watched the kids during partial MX.  With new friends -- we moved south a couple of years ago -- I don't tell them anything at all.

Sorry if this went on and on.  I'm at the point now where I want them to take out any masses.  I feel as if I'm the only one who really knows what's going on with my body.

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Feb 19, 2013 09:42AM Moderators wrote:

We are so glad that you are reaching out! Regrettably many families react (out of fear) similarly to your family. This is an amazing group of people here, who can help provide you with support. Not sure this would be helpful, but you can take a look:

We are thinking of you, and you are not alone!
Gentle hugs, 

The Mods

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