My wife was just diagnosed with DCIS

My name is Evan (feel free to call me Noodle if you want) and my wife has just been diagnosed with Breast cancer in the form of DCIS. They have already removed one small lump from the ducts of her right nipple. And they believe they have just found more. We are getting together our files and going for a second opinion this week. One thing we are just trying to find out about is, does she definitely have to get a mastectomy? Does she have to have her nipple removed? We are at the beginning of the journey and just trying to find out everything we can right now. If anyone has been through DCIS, or has any information regarding our situation it would be great. It seems like there is a very nice support group here. We are also interested in alternative medicine.

Thanks to all in advance,

Evan

Breast cancer treatment is very specific these days; there is a lot of info the doctors look at to determine treatment. Getting a second opinion is never a bad idea; ask a lot of questions make the doctor explain why they are recommending certain treatments.

DCIS means ductile carcinoma in-situ; which means the the cancer is located within the milk duct and classified as stage 0 or "pre-cancer". If there are multiple lumps or the lump is larger than they thought they will probabaly change the diagnosis to ductile carcionoma, nos (the most common diagnosis) or whatever diagnosis is appropriate and stage (I, II, III, or IV).

I've seen DCIS treated by just watching it to see it self resolve; and I've seen double mastectomy with hysterectomy and chemo. It all depends on what exactly is there, hormone markers, HER2/neu status, some other tests; your wife's surgeon and oncologist. For example; if your wife has the rare metaplastic cancer in DCIS form; it could spread to stage IV without passing through the lymph nodes; so they would treat it more aggressively. HER2+ and hormone + cancers are more aggressive and respond well to chemo.

So there is a lot more information you need to know that the doctors are looking at to make their decision.

As far as alternative medicine (you do this instead of surgery/chemo/radiation); discuss with your doctor. There is also complementary medicine that you can do with surgery/chemo/radiation; but check with your doctor to make sure it isn't interfering with the treatment.

Good luck

hugs

jessi

6/9/06 - biopsy positive for cancer
6/23/06 - DIAGNOSIS: stage IV (T4d N2 M1) invasive ductile carcinoma NOS with bone and liver mets; 17 cm mass (primary tumors), inflammatory breast cancer(IBC); HER2/neu+, HR-
6/26/06-12/11/06 - Chemo FEC/Taxol w/Herceptin & Aredia
12/20/06 - right modified radical mastectomy, 7 of 13 removed nodes showed evidence of prior disease
12/21/06 - No Evidence of Disease (stage IV/NED); complete remission
2/6/07-3/22/07-Radiation 28+5 boost, 6040cGy.
CURRENT: Still NED, taking Herceptin and Zometa without end. Heart and kidney function remains normal.

Thanks again,

Hugs,

Noodle

As far as diet - Soy and flax-seed are very controversial (some say they cure/prevent cancer; but if you read how they work for menopause and heart disease then theoretically they would make breast cancer worse; most doctors say they truly don't know how they react and it's best to avoid to be safe). I'm here if you need to chat, vent, ask questions...

Good questions for doctors

1) BRCA1/2 testing (genetic testing for mutations)

2) HER2/neu receptors

3) estrogen receptors

4) progesterone receptors

5) mastectomy vs lumpectomy w/ or w/out radiation - (discuss potential for lymphedema post surgery and preventative techniques)

6) chemotherapy (will probably only do if they find cancer in lymph nodes)

7) hormone treatments

8) hysterectomy (usually only in severe estrogen positive cancers with positive genetic mutations)

9) Ask for physical therapy after surgery to help regain strength and flexibility (helps with pain as well)! In the mastectomy they cut into the muscle (does not regenerate). Also discuss medications such as Neurontin to help with nerve pain/numbness post mastectomy in addition to pain medications.

10) if doing chemo, they may prescribe an antidepressant called Effexor XR near the end to help counteract temporary menopause symptoms. Neurontin will also help for this.

No dieting, just eat a healthy diet!!!!

hugs

jessi

6/9/06 - biopsy positive for cancer
6/23/06 - DIAGNOSIS: stage IV (T4d N2 M1) invasive ductile carcinoma NOS with bone and liver mets; 17 cm mass (primary tumors), inflammatory breast cancer(IBC); HER2/neu+, HR-
6/26/06-12/11/06 - Chemo FEC/Taxol w/Herceptin & Aredia
12/20/06 - right modified radical mastectomy, 7 of 13 removed nodes showed evidence of prior disease
12/21/06 - No Evidence of Disease (stage IV/NED); complete remission
2/6/07-3/22/07-Radiation 28+5 boost, 6040cGy.
CURRENT: Still NED, taking Herceptin and Zometa without end. Heart and kidney function remains normal.