Diagnosed August 28 2013

Hi Claudia!

I'm sort of new here as well - diagnosed in May, Lumpectomy in June, and then 8 weeks of radiation and now tamoxifen. You are not alone and I know you are overwhelmed. I just wanted to say Hello and tell you that it's your choice what you chose to do - only you know what's right for you.

I was given prediction percentages by my surgeon, and both radiation and medical oncologists. Were you given this information? What your risks are with no surgery, surgery only, surgery plus radiation, radiation only, tamoxifen only, etc.

I know someone who has more experience and is better versed at all this stuff will come along shortly...but in the end it is what you want to do and what you are comfortable with.

Pam

I was diagnosed with DCIS, intermediate grade, in one breast in July and had a double mastectomy with sentinel node biopsy and immediate reconstruction with implants 9 weeks ago. After investigating radiation and talking to people who had it as well as reading the threads here, I knew I wanted to avoid radiation if at all possible. I have an aneurysm in the ascending aorta of my heart and radiation is known to damage the heart so I had to avoid it.

When you look at the DCIS algorhythms from Johns Hopkins, Mayo, and MD Anderson, they all agree there are two choices of treatment. The most common course of treatment for DCIS is lumpectomy with radiation and 5 years of Tamoxifen (hormone therapy.) Chemo is not required because DCIS is not invasive, stage 0. The other option is mastectomy with no other treatment unless there is lymph node involvement. Because my cancer was found early, was small, an aggressive grade, but not invasive, having the mastectomy meant no radiation would be required, no chemo, and no hormone therapy. Easy decision.

I decided to have the other breast removed too because I didn't want to worry about cancer showing up there later. It's a good thing I did because the pathology report after the BMX showed that side DID have cancer - a different kind, LCIS. It had not been found in two mammograms plus an MRI with contrast done to make sure there wasn't something lurking in either breast that hadn't been found already. (!!!!) I was mad at first until I found out that LCIS can be missed, especially in dense breasts. The surgeon did a sentinel node biopsy on both sides as a second way to make sure no cancer had moved into the lymph node. The current algorhythms show SNB as an option for DCIS but not required.

My oncologist says DCIS is in ducts and LCIS is in lobules. With a mastectomy you no longer have ducts and lobules. The tiny amount of breast tissue that MAY be left doesn't contain them. DCIS and LCIS cannot occur anywhere else in your body because you don't have ducts and lobules anywhere else. There was no invasive component. No lymph node involvement so no cancer cells had escaped. She says no radiation is needed, no chemo, and no hormone therapy like Tamoxifen. There is a very small chance (1-2%) that I can get some other kind of cancer in that tiny amount of leftover tissue, but it won't be a reoccurrence of the same kind. She says I made the right decision and she would have done the same thing. Come back in 6 months. Beautiful words! My gut feelings were right.

My decision is what was right for me. It makes sense FOR ME. You may choose a different path for dealing with DCIS which will be the right thing for YOU. There is no right or wrong in this fight. Try to find a breast cancer center that deals with this every day. Get a second opinion if you don't like your doctor. Find one who will communicate in an effective way with you. Research your type of cancer on REPUTABLE websites like Johns Hopkins, Mayo Clinic, or MD Anderson. Read others experiences here, but remember if the person is giving medical advice, it's an anonymous person who may or may not be relating the whole story. Make notes if you want to know if something is true or not and ask your doctor. You have to trust SOMEBODY.

This is the place to get expert advice from other women who have stood in your shoes. We know how to get through it. Doctors can give daily living advice but WE are the real experts on actually LIVING WITH CANCER. We can tell you what you might need at the hospital, tips for recovery at home, and all the daily adaptations you have to make. We can even hear you talk about your hot, red breast and will tell you if we had those symptoms, we'd be headed to the doctor NOW. It's not medical advice. It's just that we've been through complications and can sometimes recognize symptoms that might mean trouble!

Vent, scream, complain about your husband, your doctor...anything you want to say, we want to hear.

Hi Claudia,

I was diagnosed with DCIS in 2007 and after my lumpectomy was faced with the same dilemma then as you are facing now. (I also had atypical hyperplasia and was estrogen positive).

I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist who has a consulting service that anyone can use. He reviewed all my pathology and used the Van Nuys Prognostic index to calculate my risk of recurrence without radiation. This is based on age, size and grade of your DCIS and how large your surgical margins are.

Since my risk without radiation was only 4 percent, I decided the 50 percent risk reduction that radiation provides, which would have been only 2 percent for me, wasn't worth the risks. Also because radiation can only be used once, I wanted to keep it in reserve in case I ever got invasive breast cancer.

Because I consulted with Dr. Lagios, I also opted out of tamoxifen, since he does not advocate tamoxifen for DCIS, as he believes studies do not show it reduces absolute risk by much more than 2 percent.

Instead of radiation and tamoxifen, I chose to modify my diet, exercise more, drink less, balance my hormones with bio-identicals and take several anti-estrogenic and anti-inflammatory supplements, all under the supervision of a qualified integrative doctor. Because I am now at higher risk of a recurrence, I also have an annual Aurora dedicated breast MRI. (This type of MRI has only a 1 percent false negative rate compared to the 15 percent false negative rate of a general MRI.)

The Oncotype DX test for DCIS is also now available. It also could help you determine what your risk is without radiation. However, it is considerably more expensive than a consult with Dr. Lagios would be and it has not been around as long as the VNPI, so is somewhat untested.

No matter how you choose to do it, I think if you found out your risk of recurrence without radiation, you would better be able to decide if the risks of radiation are worth it for you.

If you would like to read more of my story or re Dr. Lagios, please feel free to check out: http://dciswithoutrads.com/.

For more DCIS info and more stories please go to:

http://dcisredefined.org/

Please also feel free to PM me anytime.

Wishing you all the best,

Sandie