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    matt323 wrote on Paw's wall

    Thank you for your additional comment. That helped a lot. I'm not sure if my sister is naive about the cancer or what. I am still trying, very hard, to understand. She says she has a "gut feeling" that it is gone and nothing more needs to be done. She thinks she should feel sick if it is still there. Regardless, her Dr ordered a PET scan next week because she is refusing any other treatment. So, I guess we will go from there.

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    matt323 shared an experience

    Decision Point (Whether or not to start Chemo and Radiation)

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    matt323 asked a questionBreast Cancer

    No Chemo or Radiation? Do any Breast Cancer patients refuse treatment even if it is recommended by their physician?

    20 answers
    • potpie's Avatar

      I did not want to have chemo either. When a patient has positive lymph nodes, then oncologists will want to prescribe chemotherapy. The type of breast cancer is important to know also. Some respond better to chemo than others. I had one lymph node positive, ER/PR +, HER-. My tumor was grade 1, the slowest growing. My stage was IIB. My oncologist wanted to start chemotherapy, but I read a lot of research showing that chemo may not be beneficial to my type of cancer. I did not want to have chemo, if it was not going to benefit me. My oncologist did not consider the Oncotype DX test for me. She said it is not validated in node positive cancer. I got a second opinion and considered entering a clinical trial testing the Oncotype DX test for node positive breast cancer. The trial will compare chemo + hormonal therapy to hormonal therapy only. My recurrence score was low, so I entered the trial and was randomized to the hormonal only group of the trial. I started tamoxifen last week. I would have accepted being in the chemo group in order to gather information for patients in the future having to make this same decision.
      Your sister needs to know as much as she can about her own breast cancer and have her oncologist explain the decision for chemotherapy. If she is eligible for the Oncotype DX test, she should have it done.
      She can also consider a second opinion too. I am very glad I did.

      over 3 years ago
    • alicia1688's Avatar

      My sister also was diagnosed with breast cancer T1B, ER+, PR-, HER2 -. She wants to do radiation, but she doesn't want to do chemo. Any good suggestion?

      about 3 years ago
    • JP2014's Avatar

      I am the daughter of a breast cancer patient (63). She was diagnosed with Papillary Ductal Carcinoma in situ. it was encapsulated and thought to be stage 0. After a lumpectomy it was discovered that the tumor was larger than originally thought (5 cm) and there was a 2cm stage 1 tumor behind it. She had to go back to surgery 2 weeks later get a safe margin around the second tumor and have lymph nodes tested. They took two nodes which came back clean. The Oncotype DX test came back with low occurrence - 20% I believe and 5-10% with radiation treatment. She had the blood test to see if she carried the mutated cancer gene which she does not. Radiation and hormonal pill are recommended follow up treatment. She is very upset that technology hasn't come farther yet, that they had to take her 2 lymph nodes (it is causing her pain and tightness) in order to find out that they didn't need to take them. She is considering refusing radiation and the pill. She is healthy, lives an active organic lifestyle and the doctors keep telling her how healthy she is and how fast her body heals.

      I am trying to respect her decisions and support her though the process but honestly, I'm terrified. I imagine this could be the turning point I look back on and think, "if only we had continued with treatment things would be differently right now."

      Her naturopath is a fan of the integrated care plan where she takes supplements in addition to the mainstream treatment and works on the "five to thrive" http://fivetothriveplan.com/

      Obviously she has been making positive life changes and will continue doing so more aggressively going forward, but she is already leaps and bounds ahead of the curve. She is working on mediating daily - not falling into excuses, working less, finding what in her life is a source of stress and eliminating it or going about things differently. She eats a very very clean diet but I will suggest she team up with a dietician to give her/us some parameters.

      I know what the arguments are to continue with treatment. Does anyone have an argument for refusal?

      almost 2 years ago
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    matt323 shared an experience

    Procedure or Surgery (Lumpectomy)