I'm newly diagnosed and confused

LoverOfInfo

Hello all,

I am a black woman (librarian and assistant college professor) who is still married. Just before I moved back East, my husband was diagnosed with prostate cancer (very early stages). I came back East to be closer to my sister and my brother (who has prostate, lung, and throat cancer).

I have now been diagnosed with early DCIS, hormone positive (both estrogen and progesterone). I am trying to organize my treatment and seem to be at a complete lost when it comes to dealing with the health care system on the East Coast. It really seems like the doctors have absolutely no clue as to the basic procedures! I do feel confident about his ability and expertise; but totally upset about what I get told to do. I have been told I would be contacted; no one contacts me and I'm told I'm at fault. I guess I'm wondering, with the summer schedules, if I should not just wait until December to have my surgery. It seems like no one has time for me.

FitChik, it looks like I'm going to be all alone too when I go through this (I have opted for a lumpectomy and MammoSite Catheter; then Hormonal therapy). Please tell me what I might want to know.

The hospital is just a walk across a park so I don't have far to go, which is good considering the radiation will be twice a day. But I must admit to being scared and feeling very lonely.

Any words of advice will be appreciated.

iodine

Hi Lover(like your name), I'm not Fitchick, but want to welcome you to the boards. Sorry you are having a rough time and esp.since you are in a new place for treatment. My dh (husband) also went thru prostate cancer last summer and then was dx'd with ca. of the larynx last winter.
You seem to be surrounded with the beast as well.
May I suggest you post in the newly diagonsed section? Lots more of us will be stopping by there and can offer info, I think.
Sorry you are having a time with your docs. They do seem to want to pass the buck when things don't go well, don't they.
We have all learned that we have to be our own advocates, big time! Just have to become the squeeky wheel and take care of ourselves.
I make sure to follow up on my own for everything. I always call a couple days before every appt to confirm the date and time. Even the day of, to see if they are running late, LOL. It saves me time.
I call to get the results of tests, I don't wait for anyone to call them to me-- anything can fall between cracks and I'd never hear from them. Besides, no one wants to know near as much as I do.
Sorry you had to find us, but so glad you did. We will be here for you any time.
Hugs.

NoH8

I love your name too! I'm not sure if you realized you posted this is the lesbian forum. You're more than welcome to post here, lesbian or not, although you might get more responses if you were to post in one of the other forums as well.
I was single when I was dx and I also had to go it alone. In many ways it was easier for me, because I didn't have people pressuring me one way or another. I asked for the support I needed from the friends I wanted it and didn't consult the others so I was free not to hear opinions from people I didn't want.
Please feel free to continue to post here, whether or not you're lesbian.

floridahurricanegal

Good day,

I am a 54 yr old lesbian and my partner and I have 20 yrs together.

I was diagnosed on 10/09/07 (our anniversary)with invasive carcinoma of the right breast. My biggest hurdle is I have "NO INSURANCE". My job is one that I only work during disasters so it is not full time. When I do work the pay is good, but I have to be very careful with money management so when I am not working I have something to fall back on for house payments, utilities and the like.

It seems to me that I am getting set on the back burner because of costs. I have asked for assistance from the hospital social worker and they keep telling me I don't qualify due to being too young ( nice change there) or not being poor enough. If anyone knows where I can get some relief for consults, tests, and treatments I would greatly appreciate it.

They have not staged my cancer yet, the only thing I know is that it is already out of the usual place and lays inside the breast (upper right-center area).

I am feeling overwhelmed and my partner and I worry about losing our home or how we will make our monthly expenses on top of all the bills that will be piling up. Any ideas on what all this will add up too?

Anyway, I sure could use any and all help, direction, and a place to talk. Thank you for listening.

Floridahurricanegal

sns

The link below has details about the government program to provide free breast cancer screenings/treatment. Not sure if you would be covered by this, but might be worth looking into.

http://www.cdc.gov/cancer/nbccedp/legislation/law106-354.htm

National Breast and Cervical Cancer Early Detection Program (NBCCEDP) - NBCCEDP, which is administered by the Centers for Disease Control and Prevention (CDC), provides free breast and cervical cancer screening and follow-up diagnostic services to women in need, such as those who are uninsured or have low incomes.

lv2cmp

Floridahurricanegal-i sent you a pm so be sure and check your inbox.  Amy

NoH8

Sorry you had to find us this way hurricane gal-- I hope your name is for the football team rather than having been in hurricanes. It's really hard when you fall into the category of not being poor enough to qualify for assistance or rich enough to afford what you need to. I wish I could be of more help.

sunbearz

I too am a florida gal of 53 with a partner of 53 also. I had breast cancer also with no recurance. She is in her 11th year stage 1V and fighting like a dog!

She just last week had to cut down on her hours at work so she could get her treatments done and get a little rest. Next week she starts rads for Mediasternum lymph mets. They have to stop her chemo for 4 weeks while she goes through this. Her boss is a Godsend as he says not to worry you have to take care of yourself first and gave her every Wed. off.

We are working on getting her signed up for the SSI disability ahead of time and she says she won't go there until she absolutely has to.

She always worry about her loosing the job and insurance, but my company supports domestic partnerships and provides insurance! Ill get it for her when she needs it.

Hang in there gals. Hope you find the help you desperately need

sunbearz

AnnNYC

Hurricanegal (do you work in hurricane disaster relief?),

here's a few links about financial assistance:

A member here called "badboob67"' (Diane) is building a wikispace with info on financial assistance for cancer patients.  It's currently under construction, but it does have links:

http://bb67.wikispaces.com/

There is some more good info here

Especially this link (also from Diane):

http://www.coverageforall.org/

AnnNYC

Wow, I wasn't following the dates of this conversation -- just saw it come up "active" -- hope FloridaHurricaneGal is doing okay!

Sunbearz, good luck to you and your partner!  I'm so glad you've both had insurance coverage -- so I hope you WON'T need financial assistance info links!

Best,

Ann

sunbearz

AnnNYC

Amazing how things can change in a day or two. Now my partner is worried that because she has cut down on her hrs. at work she may loose her insurance.She currently pays nothing for BCBS and if she has to go on my domestic partner insurance it will double my cost. This may become necessary as time goes on, so thank GOD I have this option.

Things are changing as now we have to get the wheels turning for disability insurance, and she just got a handicap permit as her walking sometimes is a big issue.

Best wishes to you Ann

sftfemme65

Sunbearz,

I know how your partner feels.  I have great insurance now.  I have been off work since Dec1 on short term dis. I go back to work march 3 and hopefully I wont have to cut my hours back.  I worry all the time about loosing this job.  I don't need the money but I do need that insurance.  My partner works for Fedex and they do not have domestic partner benefits. 

Teresa