Shocking news!

By Janet Thompson, Author/Speaker Monday, December 15, 2008

- A
- A
- A

I am currently experiencing a recurrence of DCIS in the same breast, that supposedly was taken care of six years ago with a lumpectomy, radiation, and Tamoxifen.

Last week after having another sterotactic biopsy, the doctors dropped the bomb that my cancer is estrogen-negative not positive, as they assumed in 2002 a post-menopausal woman with DCIS would be. In 2004 they started testing. So for five years I took a drug that in my case was like taking a placebo! I asked my oncologist many times: "My cancer is estrogen-positive right? Always, she answered "Yes!"

I am writing this to any of you who might have had the same treatment for DCIS that I did and are on Tamoxifen. Ask your doctor if they really did test for estrogen-positive or negative. Tamoxifen is not a drug you want to take if it isn't helping.

I guess that is why they call it the "practice" of medicine.

www.deargodtheysayitscancer.com

Comments (5) | Add comment

Maria Gifford, Editor

12/16/08 2:22am

Hi Janet,

Good to hear from you again, but certainly not under the circumstances. Yes, how shocking your recent news is. I find it ironic that you continued to question your doctor about being estrogen positive or negative -- it's like you had a sense all along that your diagnosis wasn't quite right.

Please keep us posted on what happens next, OK? We want to stay in the loop and be here for you.

Hang in there.

Best,

Maria

Janet Thompson, Author/Speaker

12/16/08 12:46pm

Thank you Maria. One thing we have learned about is Caring Bridge which is a great way to keep people informed and let them leave comments. It's a free website...so now I know to tell people about that and our friends and family have thanked us for setting that up.

It also helps my husband because he's not bombarded with emails he feels he has to answer.

I'm waiting for the results of the MRI so we'll see if that changes the plans.

Merry Christmas!

Janet

Phyllis Johnson, Health Guide

12/16/08 5:54am

Janet, I had a similar experience with a different outcome. In 1998, my original pathology report from the biopsy didn't check for ER or Her2neu status. My doctor, like yours, assumed I would be put on Tamoxifen. I was hearing about Herceptin, which was nearing the end of clinical trials for metastatic disease, so I asked for status checking when the pathology report was done after the mastectomy. It turned out that I was ER neg and Her2neu pos, so the Tamoxifen was taken out of my treatment plan. Thanks for your good reminder that we sometimes need to advocate for ourselves to get all the possible tests done. I hope your new treatment plan goes well.

Janet Thompson, Author/Speaker

12/16/08 12:43pm

I kept asking my oncologist about new drugs too and she kept saying that Tamoxifen was the only thing for me! I am debating about how to approach her now with my frustration that she didn't really know I was ER as she said.

And you were wise asking for testing because I was told that if you didn't ask for some tests they weren't done. And of course what patient in shock knows what to ask. I know the doctors are human and doing their best...and I wrote in my book about some that had mistakes in their treatment....I was so deligent about following their instructions...this time around it makes me question everything. Like do I really need a mastectomy or is a lumpectomy w/o radiation (which can't be done again) going to be enough?

I feel like I could start writing another book!

Thanks for taking the time to write me.

Blessings,

Janet Thompson

nanette

12/25/08 2:34pm

hello. im nanette i was diagnosed with breast cancer at 44 in june of 2007. im on tamoxifen. im scared now because my experience was so horrible. i opted for a bilateral masectomy, due to my strong family history. my mom died in 1998 at 59 years old, of breast cancer, and both my dads sisters have had breast cancer. well, im on hill-burton insurance which is money paid for by us taxpayers. it is in no way like medicaid. i pay alot of out of pocket expenses. anyway, the idiot dr told me he would only remove the one breast. not even giving me any payment options. now it is almost jan of 2009 and i still have my expander and port in. the hospital is saying they will only remove the port. isnt that illegal? arent expanders, TEMPORARY? and, they will not make my other breast symmetrical. i am so disgusted id love to tell them all where to go. i live in south florida. im going to talk with a social worker as soon as she calls me haha......... wonder how long that will take. 2 months ago when i went to the hospital the dr asked ME, the patient, why i didnt get radiation. i wanted to cry. can anyone please help me with advice???????????? oh, when i said no-one offered me radiation, the dr left quickly. i have a 23 year old daughter and feel as though i was so neglected that i will die quicker. please, if anyone can offer advice................ i go to broward general medical center in ft. lauderdale florida. if that helps. im really tired and depressed im no longer myself. God Bless everyone thats been there. nanette

Shocking news!

Ask a Question