Feb 24, 2018 05:59PM 7of9 wrote:
Sorry in advance for long post but there are so few of us...here it goes. Oh and thank you mods but the survey people said too few of us replied and I got the boot!
I'm not sure how I haven't found this thread before and chimed in but here I am too!!! A local or regional recurrence survivor. NED after 2 yrs. (I've been called cured by a young RO and metastatic by a Gyn head, my nurse practitioner says they don't restage recurrences and another RO just shook her head and said "sorry" when she read my 2nd surgery report - I literally took a second attivan as she read the report)
I had a double mastectomy with two tumors in the left breast originally in 2012. Lymph node involvement was questionable because I didn't let them biopsy before neo adjunct chemo, (I was too worried about seeding which may or may not have caused my recurrence because I didn't do rads first time).
Reoccurrence a little after 3 1/2 years probably sooner when I was diagnosed with 10 out of 14 nodes unfortunately in axiliary lymph nodes. Nothing on CAT or bonescan tho they noted something small on liver ( too small to determine if anything, I only found it in detailed report) and 1 cm lung nodes that haven't changed from 2012 to one scan in 2016 and 2 scans in 2017.
My surgeon thought she got clear margins and I insisted on doing Taxotere (ACT first time no rads...false negative in 2 nodes at surgery). My surgeon did recommend rads first (one oncologist disagreed wanted xeloda first then rads), second opinion recommended Taxotere which dispite risk of permanent hair loss (I cold capped somewhat unsuccessfully but it all came back) I felt better because the Taxanes seemed to do more than AC portion first time. Also we did do radiation before chemo. I also had a complete hysterectomy simultaneously with ALND. They gave me a lot of control which was either because it didn't matter or they might have thought I was screwed anyway. !!!
Arimidex daily since. I used cold mits and gel booties and have some lower leg neuropathy but most begore I get moving for the day. Exercise really helps. I had a clean ultrasound in December after implant replacement for BAD capsular contacture after radiation. I am having another US done next week just because I can't tell if the contracture is trying to come back or if I have more swelling puffiness in the armpit area again. I should add that paddling on an innertube at an indoor water park seemed to strain things but its been almost 2 weeks. It kinda scares the crap out of me. But if it comes out clean I think I'm gonna go ahead and get nipple tattoos and not think about this crap till fall when I'll probably insist on another scan. If I don't have any symptoms they won't do another CAT scan for another year year and 1/2. Whoo hoo!
Stress with work has been awful along with dreary Ohio winter weather. Need to get back in shape and contracture be damned. Yard work and bike riding for me!
I just figured there have been a lot of women who are diagnosed stage three B and C from the get-go. And they are still alive and kicking years down the road. And I used to think that 25% five year mark for stage 4 was too slim to hope for but it seems like more and more women are becoming NED and stage 4 or they have inactive or stable disease. I'm just trying to kick the can down the road as far as I can hoping for better treatment options when it shows up again. Even my somewhat gloomy oncologist who is the head of his department and I still trust that he's very good ...once commented that we could kick the can permanently down the road. I love talk like that !!!
I REALLY don't enjoy being a pioneer. Had so hoped to be on of those stage one or two gals that put this in the rear view mirror. Instead its my copilot many days. I take as many damn vacations as I can, say what I mean and have had many talks with my now 8 1/2 yr old about my uncertain future without crying. Its life. Its precious and its not guaranteed for anyone. That makes it sweeter than ever.