Early stage treatment confusion

Chrisesta67

I was diagnosed with DCIS and IDC inright breast last March. I'm now almost 4 weeks out from a simple mastectomy and very frustrated with the treatment recommendations from here. Due to a very small cancer growth found in the sentinel lymph node, my medical team is recommending 4 infusions of TC chemotherapy, radiation, and 5 years of Tamoxifen. The sentinel lymph node was removed during surgery and so the doctors don't really know whether any cancer even exists in the other lymph nodes.



The hour+ long trips to the hospital are exhausting for me and my 74-year old mother who insists on driving me; my doctors haven't clearly staged my cancer (possibly stage 1B); my professional colleagues are becoming frustrated with the time I spend out of the office at medical appointments; pre-chemo informational appointments are overwhelming (the chemo itself hasn't even begun); the stress of chemo and radiation is interfering with my recovery from the surgery.



I'm tired and scared. Part of me just wants to take my chances with the Tamoxifen alone. I don't have my family's BRCA1 gene mutation. Even my aunt, who has the gene mutation, did not have a recurrence of her breast cancer for more than 27 years. I can't help but think that maybe it's possible to have too much treatment; why introduce toxins into my body or burn my skin when all of the right side breast tissue is gone and the size of the tumor in the removed lymph node is only one cm (possibly smaller)?



Exhausted, confused, and considering the wisdom of making my own decisions about my own body. ~ Christine

edwards750

Chrisesta...bless your heart we can all so relate to the myriad of concerns and issues regarding breast cancer. I am not as educated as others about possible reasons your medical team is recommending all of that treatment but I can compare notes a bit. I had a micromet in my SN as well. I was initially Stage 1 but with that micromet my staging changed to 2. My ONC was ambivalent about what my treatment plan would be. My BS told me instant chemo. I did know that the final say was not his but the ONC. She or he will be your go to person for years to come. To help her decide my ONC ordered the Oncotype test for me. It is a pricey test but my insurance which is BCBS paid for it. This test does some 21 different tests on your particular tumor. They dont care about family history, etc. The results of the test which comes in about 10 days to 2 weeks tells the ONC how aggressive your cancer is and the likelihood of a recurrence among other things. My ONC said this test has been a lifeline both for ONCs who are unsure about treatment and the patients themselves because they are the ones subjected to treatment. She said ONC know they overtreat patients and this test is a tool they use to help avoid doing that. My score came back at 11 and my cancer was deemed to be non-aggressive. Because of the findings she decided I would have radiation so I had 33 Rads treatments and currently taking Tamoxifen. I am 2 1/2 years out from my DX. I dont know if I have gene mutation or not and by the way my sister has bc too - LDC and I have IDC. I also had a lumpectomy; my sister had a MX and did not have to undergo chemo or radiation; she is taking Arimidex. Oncologists are divided about treatment plans; some seem to attack the cancer more vigorously than others but at the end of the day the decision is yours - after all it is your life.

Of course you are exhausted mentally and physically and that drive doesnt help nor does the pressure from your workplace. You are on a emotional roller coaster right now and I know you are tired and it is hard to think straight. I think if I were you I would look at the chance of recurrence if you did only the Tamoxifen and did not do chemo or rads and then decide. Since I had a lumpectomy and not a mx my decision was different than yours. My sister did not have node involvement but she did have to have a lesion on her lung that had been there for years and years. She also has to have scans every few months. She is about a year out from her dx.

I also think no one knows better than you about your own body just be sure whatever decision you make you dont second guess yourself or look back. And finally I do think you can have too much treatment. I will tell you Rads werent bad at all for me but they have been for other women. A friend of mine had a double mx and chemo but could not tolerate Arimidex or Tamoxifen...she just passed the 5 year mark so you never know.

You might want to consider another opinion just to be sure. Good luck. Keep us posted Diane

bevin

Hi Christine, 

I'm sorry to hear about your cancer diagnosis and I can really understand your angst about the time away from work. That being said,  it is your health and that should come first.

As to chemo decisions and recommendations, have your doctors talked with you about the Oncotype test? If your tumor is hormone positive it can help determine if chemo is beneficial for your tumor type.  Here is a link to their site.  For most women, this test is becoming part of the overall information doctors use to determine if chemo is helpful.http://www.oncotypedx.com/

Most insurance companies are now paying for the test and if yours doesn't, the company does offer a sliding scale. I ended up only paying 50$ even with a large income.

Good luck, wishing you  strength as you move through your treatment.