Spindle cell carcinoma

bjorg

I'm wondering if anyone else here has had this diagnosis? I was diagnosed Oct 9 and am scheduled for surgery next week. It seems like a long time between diagnosis and surgery, but at least things are moving in the right direction. I realize I won't know my prognosis until the final pathology report, but I'm hoping to hear about others' experiences with spindle cell carcinoma of the breast. Thank you

slv58

Hi Bjorg, sorry you find yourself here, I know it's a scary time waiting for the final pathology. I'm sure you'll feel better once a tx plan is in place. I have spindle and squamous type. It was DX at time of recurrence. I finished my second round of chemo in August and although difficult, it was very doable. There is a Facebook group for metaplastic breast cancer that you may want to join as there is not too much activity here for this type of breast cancer. Don't google too much as most info is dated and overly negative. 

I'd be happy to answer any questions.

bjorg

slv58, thank you so much for your quick response and your encouraging words. Thanks, too, for the Facebook group info -- I'll look into that! Good advice about Google -- what I'd found on Google pretty much freaked me out, so I've tried to minimize that

slv58

I did the same thing and quickly learned that because our type is so rare a lot of the information is very outdated. I would advise to write all your questions down and bring someone with you- an extra set of ears proves beneficial. The Facebook group is closed and you will need to contact a kind woman named Bena, she will walk you through. I found a lot of comfort knowing I wasn't alone but after finishing chemo, I needed to start trying to put this behind me and start living and have thus taken a break from the constant reminder I felt on FB. There is a lot of positive good information there though. I believe the general consensus is to have surgery first then chemo, but there are many who do it the other way. Keep in mind that this type of cancer is usually aggressive and requires aggressive treatment. It is all doable though so keep a positive outlook! Let me know how surgery goes and if there is anything I can answer for you, although our DX isn't exactly the same.

Shari

Moderators

Bjorg-

We want to welcome you to our community here at BCO. We are so sorry you find yourself here, but hope you find the support and encouragement you need as you begin this journey. You are certainly not alone

The Mods