posted on Mar, 26 2012 @ 07:27 AM
Talk about a game changer! It feels like my life has just stopped and it's not going to
start again until this is all over.
Last summer the nipple on my left breast started to change, like it was drying up and
started to retract. Then after about a month or so it went away. I thought it was a skin
rash of some sort and didn't worry too much about it. Until it came back about a month
later...with a vengeance.
I'd lost my job and didn't have insurance so I felt there wasn't much I could do about it.
Meantime it's getting worse. It itches like crazy and it hurts.
Finally I qualified for special program that allows for reduced medical rates. My doc
prescribes me a steroid cream to see if that might get rid of it. It only made it worse.
She wants to schedule a mammogram and I tell no, no more mammograms. So she
agrees to schedule and ultrasound instead.
So I get the ultrasound and immediately they find a tumor. A few days later they biopsy
the tumor and it comes back cancer. A week later they biopsied my nipple (they used
a device the size of a pencil to punch a hole in my nipple and then sew it back shut.
Ouch! nothing for the blinding pain, either). The biopsy for my nipple comes back a week
later and it is a separate cancer. This particular type of cancer (2 cancer for the price of one)
is called Paget's Disease. Paget's Disease affects 1% of all women and men with breast
cancer. The rarest breast cancer there is. Furthermore, the vast majority of women who get
it are in their 60's or 70's. I'm in my 40's. Gee! Almost feels like I've been personally selected,
My doctor's treatment plan includes surgery (next week). She'll take out the tumor AND my
nipple (which I shall miss greatly) as well as taking out several lymph nodes under my arm.
What the lymph nodes look like is going to determine whether or not I'll have 4 months of
chemo or homone therapy and possibly more surgery. Then, when I'm done with that barrel of fun, radiation every single day for 6 weeks. Then
I feel like I'm on this roller coaster ride that I can't get off. Since I lost my job my income is very limited. There's several foundations that
help with breast cancer...once the treatment has started, and I'm grateful for those. I've
been filling out tons of forms to get help. I can't imagine anyone would hire me while I am going thru this treatment.
My biggest problem, I suppose, is that I want to try some alternative therapies but I just don't have the money
and my new special Medicaid for breast cancer won't of course, cover ANY alternative treatments.
ALL of the help, the support groups, the group mind think all talk about the standard treatments...
surgery, chemo, hormone therapy and radiation.
I've been smoking for years and have been trying to quit these past few. The RN asked me if I smoked
and when I told her I was trying to quit she told me not to worry about it because I was already under enough
stress. (She's an RN and she knows damn well surgery and smoking are not a good mix)
Not once did anyone question my eating habits or any environment factors.
The hospital has patient navigators to help me wallow through all the bureaucracy, the forms and hopefully
answer any questions I might have. Of course I ALWAYS get their voice mail and they NEVER call back.
In general the feeling I get is, your stuck with it lady, now deal with it. Support groups are limited to once a month
(the next one is the same day as my surgery) and I haven't been able to talk to a single person who has gone thru this experience. A few I've known
in the past have gone thru the standard surgery, chemo and radiation.
Is there anyone out there who has a different experience dealing with cancer using alternative therapies?
I'd sure like to hear about them.