Confused :(

LadyParvati said:

Confused--Have Hope
It IS intense, and very frightening. One thing you can do to help yourself is what you have already started doing--ask questions. Ask LOTS of questions. I created a whole list of questions, well over 30, to ask when I was first diagnosed, and I took them to three different surgeons before making my decision about not only the type of surgery but who would be doing the surgery. I didn't choose the first doctor because she was very eager to do mastectomies and implied that mastectomy would reduce my chances of recurrences quite a bit more than lumpectomy with radiation, which isn't true.

I was diagnosed the last day of Sept, and I just had my surgery on 11/6--you do not have to rush into this. That cancer has been in your breast for, probably, 7-8 years, according to what I've learned. A couple more weeks of thinking about it and doing some research to learn about your options won't be any more dangerous.

Something else you need to know is your estrogen-receptor (ER) and progesterone-receptor (PgR) statuses. Are they negative or positive? These affect your treatment options--if one or both is positive, you can use hormone-blocking therapies, and in some such cases, women can avoid chemotherapy (though they must take the hormone-blocking treatment for the rest of their lives). If negative, chemo will definitely be the treatment recommended.

Your decision about the surgery is going to be based on your feelings about each surgical outcome. With lumpectomy, you keep your own breast--at least part of it. How much depends upon the size of your tumor, its location, and your surgeon--some surgeons take larger margins (tissue around the cancer to ensure getting ALL of the cancer) than others. I chose a lumpectomy with a surgeon that would take larger margins because I have ER neg, PgR neg cancer with a higher risk of recurrence, so, even though I didn't want a mastectomy, I figured more was better. With mastectomy, you have options for reconstruction that some women like, but you also have loss of sensation in that breast. Learn about both the pros AND the cons of each one before making your decision.

A couple of good websites to help you learn and make decisions:

http://www.hopkinsbreastcenter.org/library/diagnosis_treatment/full.shtml (An article on making choices about breast cancer at The Johns Hopkins Breast Center)

http://www.breastcancer.org/ has a decision-making program that explains the recommendations for your stage & type of cancer and helps you decide the type of surgery, etc.

The National Breast Cancer Coalition Fund has a great booklet, Guide to Quality Breast Cancer Care, that provides lots of explanations, info about treatments, and info about insurance and other coverage, as well as your rights.

curetoday.com has a whole bunch of articles explaining the terms with which you're being confronted

Finally, Dr. Susan Love's Breast Book by Dr. Susan Love is really, really helpful. I think the most recent edition is the 4th--published in 2005.

Lots of luck, Mandi--wish I could give you a hug. Just know that everyone here truly understands your fears and the challenges of making decisions right now.

Sandy

CypressCynthia said:

Welcome Mandi
We are sorry that you are in the club, but we welcome you and you will find a lot of valuable info here. I was diagnosed in 1987 with invasive ductal carcinoma: lg tumor, 4 nodes, ER+. I had to have a mastectomy also because of small boobs and large tumor (spider shaped). I had 6 months of chemo, 2 months of radiation and 7 years of tamoxifen (recommendation is now 5 years--I was a premenopausal guinea pig). I chose to have reconstruction using abdominal tissue because I was young and did not want to have to worry with implants (implants can often have a limited "life" of about 10 years). What you ultimately decide is a personal decision made between you and your physician. Personally, I am glad that I have a breast using my own tissue. Just to give you lots of hope: in 1987, I didn't think I would make it 5 years, but here I am 22 years later. Good luck to you and I will be praying for you!