Very confused

lacykat

My Oncologist has confused me greatly. In 1997 at age 34 I had stage 1 IDC also DCIS size .83. The Onc. at that time took my case to the tumor board and 8 out of 9 Onc's agreed that Radiation only was sufficient for me. I am estrogen and pros positive. They did not give me Tamoxifan at that time because I was unmarried and had no children and I did not know if I wanted any. Treatment went well life went on. I am now happily married but decided no children. In December 2006 started the process of DCIS in my other breast. I decided and had both breast removed because my surgeon and I felt I had dodged a bullit twice. I went to the Onc ( a new one) and she is on the fence about Tamoifan but what angers me is she keeps bringing up that the Onc's/tumor board back in 1997 made a bad call. She would have had chemo done on me and Tamoifan!. This was close to ten years ago! I really felt the doctors and I made the right decision at that time! Has anyone had something like this happen to them? As I know of breast cancer and ovarian cancer DOES NOT run in my family. I have taken the BRAC test but Blue Cross is holding it up and won't pay for it. I tested negative for the CA-125 just recently. I am 44 and premenopause loving life except for this doctor. I am moving out of state and only plan to speak with the Onc if the BRAC test will get paid by insurance. Anyone had problems with their insurance? Thank you for the ear, I really needed one.

CalGal

Hi Lacykat -

Sorry you've had to go thru this twice ... and about your new onc questionning what was done 9 years ago. It's one thing to bring it up once, but to keep bringing it up, what's the point?

I'm not sure what you've said to the onc, but re-hashing is not helping ... you've got to go forward. I'd let her know how I feel and what I'd prefer. For many of us, there isn't one right answer to our treatment ... all the more reason for 2nd opinions!

On my initial dx in 2004, I considered myself borderline for chemo ... since as I recall, for a tumor under 2 cm, chemo was optional and my tumor was 2.2 cm ... being a newlywed and wanting kids and with clear nodes, I decided to only do rad'tn, rather than adding chemo for an add'tl .2 cm ... Would I have been dx'd with recurr bc and mets had I done chemo? I will never know ... and really don't go there ...

While I may have done things differently knowing what I know now (recurr bc, mets, BRCA1) ... I focus on going forward. I've had a number of problems with my now-former HMO (no scans on initial dx), misread mamm delaying dx of recurr bc and mets (and then the mamm was lost for 4 mos), only mamm's - no breast mri's despite being high-risk with dense breasts, HMO reneging on liver biopsy ... and now in response to a letter I sent, the HMO is saying that "patient was NOT damaged by the misread mamm as the mets were likely there on initial dx" ... That's really taking responsibility!

Fortunately, I was able to leave my HMO during open enrollment and go to a PPO. It's much more expensive, but definitely worth it to me! I was fighting both my cancer and my HMO last year ...

You mention that you're moving ... I hope you have continuous medical coverage ... and hopefully, you will get a new onc who is more pro-active and a better fit.

I was very aggressive and had a total of 7 outside opinions last year ... but am only seeking reimbursal for one of them (which included a CT Scan that my HMO used during surgery) and so far, my HMO has denied the claim, but now it's going to automatic appeal.

Best to you,

CalGal

veggievet

Dearest LacyKat,
Having breast cancer twice (especially premenopausally) can be a red-flag for a hereditary syndrome (such as BRCA) even without a strong family history of cancer.

My strong recommendation is to start by insisting on a referral to an expert called a genetic counselor. They are the best health care experts to:

-determine if you should have genetic testing
-make sure that the appropriate test is ordered for you
-facilitate your insurance paying for it
-helping you get testing if your insurance won't pay

Genetic counselors are the true expert (not physicians).

Please e-mail me at:

sueanddan@att.net

and I'd be happy to help you find a genetics expert in your area.

Also consider checking out FORCE: Facing Our Risk of Cancer Empowered at: http://www.facingourrisk.org the site is devoted to issues including genetic testing.

Warmest regards,
Sue

mkl48

Scans for node negative early stage at initial dx are not the norm. The other stuff they were off base.

Indigoblue

I continue to get more and more confused. Where, who, what, how does one find a hospital and docs they can completely believe, be told the truth, and treat you as you; a person, an individual, a human being?

I am beginning to think nobody knows anything, and if you beat cancer, you simply have "good genes". Lucky.

Feeling so crumby 6 months going on 7 after last radiation treatment...and feeling worse every day. Are we being lied to, or do they really just not know what will happen?

Chemobrain and neuropathy both make life difficult; especially when BSE and finding a nutritional, healthful lifestyle; along with getting along with your life.

Getting along with "what" life? I need to find a councelor or someone to help with this psychological damage, emotional void, personal loss, but I can't remember what day it is; get on with life...when?

Node neg, early stage, so what?
I think cancer has a mind of it's own. Little invaders; destructive and taking over bodies for what purpose? Since the cells are destroying the cells which keep the cancer alive, does this make sense? It's all so poluted.

Depressed today. sorry, need to vent.

Indi