Hello sisters!

bobogirl

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.

GML

Welcome Bobo to a club you don't want to belong to but a great group of women just the same.

You do know your own body best. Always trust that. I've always been told I had fibrous breasts so when I felt my mass, which was quite large, I didn't know what to think. I felt it in May. My partner wanted me to get it checked out but I was in between GPs and about to have my gall bladder removed. We felt it along the way and my partner seemed to think it was getting larger and then smaller in rhythm with my menstrual cycle. It felt the same to me. I saw GP in July. Mammo showed nothing, ultrasound showed nothing. Even after the biopsy where the doctor was saying "see that, that's not supposed to be there" as he pointed to a group of cells on the screen that looked different than the others, I was still stunned. I'm glad I opted for mastectomy as it was not confined to the mass but intertwined in the rest of my breast tissue; another thing that their tests did not detect. So, trust your body and trust your instincts.

I'm sorry about the lack of support. You say your partner is supportive but not wanting to talk about it and refusing to acknowledge reasonable fears doesn't sound supportive to me. My partner wanted to go to the biopsy consult appointment. I told her it was just a consult and that she should wait and come when he did the biopsy. She asked me repeatedly and I kept telling her it was just a consult. Turns out the consult ended up with the biopsy with which he was openly suspicious about and I almost got into a car accident trying to call my partner on the way home. After that, she refused to miss an appointment, even if it was a minor one.

It's hard on them in a different way. Actually harder I think. Sometimes I will wonder if its coming back and when and my partner will grow quiet. It's not because she doesn't want to be supportive but because the thought of it returning and the thought of me actually dying is more than she can take. Maybe that's where your partner is at.

In any event, I don't want to ramble on. I hope you get answers and peace of mind.

GML

Outfield

Hi Bobo, I responded to another post of yours on a different thread.  

I didn't have the degree of isolation in my diagnosis that you do, but I did feel like I didn't fit with most of the women with breast cancer I knew, or whom I met.  So many early tumours, and mine wasn't - I had an aggressive Stage III tumor - and so many women telling me how they flew through treatment, and I didn't - I had a lot of trouble during and some permanent problems.  On these boards, there's always been at least a few people who can relate to something I post.  In real life, it wasn't necessarily like that.  I ended up joining a support group for anybody with any type of cancer, which for me was great.  We happened to have a high percentage of lesbians in the group, but really what drew me to it was being able to talk about things like fear and loss, not TE's and whether skin will look normal after radiation.  

My partner has been super.  We've had some really frank discussions, and she has helped me do the things I have felt I need to do to get through this.  But cancer's a huge stress on a relationship.  My treatment completely killed my sex drive.  We're seeing a couples counsellor and trying to work through things.  It's hard.  Add little kids to the equation and it's really hard.

So welcome, and sorry you're here.

bobogirl

Thanks so much for this post, Outfield.  Sorry for my delay in replying -- at the hospital nearly all day.  

I think I am in your low-sex-drive club, but I haven't been thinking much about it, to be honest.  I understand about your support group.  I'm glad you've found a good place!  I didn't fit in much with the BC support group in PA.  I didn't have the same kind everyone else had -- I have a really rare kind -- and it wasn't there fault, really, but I just didn't feel like I belonged.  Plus they were are very... Christian.  

I have two small kids too -- 7 and almost 8.  Looking forward to hearing from you again soon.

xxx oooo