Refused Bilateral Mastectomy

Mavericksmom

I had IDC in 2003 treated with lumpectomy, re-excision, chemo, rads. I tried Tamoxifen for a couple weeks but hated how it made me feel and had other concerns so I quit. My oncologist agreed with me. I was offered an AI because chemo put me into menopause but I refused.

15 1/2 years later I was diagnosed with ILC same breast. I wanted bi-lateral mastectomy and was flatly refused! The reason, they don’t remove healthy breasts at that cancer hospital! They do for BRCA patients even if they never had a cancer diagnosis. I know this because it was in their newsletter!

My sister was just diagnosed with IDC, 7mm, and her breast surgeon offered her a choice, lumpectomy with radiation, mastectomy or bi-lateral mastectomy! Her tumor is much smaller than mine and she was given those choices!

With my sister’s diagnoses that means myself, my mother, and two of my three sisters not to mention cousins on my mother’s side of family, were all diagnosed with breast cancer! My non-cancer sister and I are going for Risk Assessment appointment this summer. We did it in 2004 and do not carry the BRCA genes.

I have suffered a lot, still suffering, from wounds that aren’t healing well from the DIEP reconstruction I was pushed into having. The wounds are due to the severe radiation burns I had in 2003.

I know it’s hind sight now and I can only move forward, but has anyone else been refused a bi-lateral mastectomy? Mentally I can’t seem to let go of the hurt I feel because of this. I feel as if I had no say in my treatment. I’m going back to work next week so hopefully my mind will be distracted by non-cancer things. I’m mad at myself for not being able to let go of this and I am dreading my visit with my BS in July.

Mavericksmom

I'm sorry to have deleted my original post, I thought it would delete the topic too.

I was wondering if anyone else was refused a bilateral mastectomy. I had a recurrence in same breast 15 1/2 years after first diagnosis, and was refused a bilateral mastectomy.

My sister, newly diagnosed was offered lumpectomy with radiation, mastectomy or bilateral mastectomy! Her cancer is half the size of mine and she has IDC. I have ILC.

Sadly I can make peace with my breast cancer diagnosis, but not with the treatment I received. I'm so disappointed in the treatment I received at the cancer hospital I went to, My BS did include me in the decision making and took advantage of my mental state—shock at a recurrence so late no after my first diagnosis—to do what he wanted to do. I'm still dealing with open wounds on my fake breast due to previous radiation burns, 16 weeks post surgery! I dread my next follow up with my breast surgeon, but it will probably be the last. I only want to follow up with my MO. My plastic surgeon passed me off to his PA shortly after my surgery, and I don't see any point in seeing his PA after my wounds heal.....if they ever heal

That's all.

BlueGirlRedState

Mavercksmom - one breast, or bilateral is your choice. A lumpectomy for me was not a choice with the second cancer. My surgeon counseled that there was no MEDICAL reason to remove a healthy breast, but that it was completely my choice, and that she would support that choice. She also said that many women choose a bi-lateral, even if only one breast shows cancer. Years ago another woman told me that her surgeon and other DRs in the clinic tried to discourage her from a bi-lateral, but did not refuse her choice. Talk to the DR why they refuse and request a second opinion. If there is counseling available that is not a surgeon, you might want to talk to a counselor. Check other forums on this website for what other women did, why, how they felt about decision, as well as reconstruction options, including no reconstruction. The decision is very personal and almost unique to each situation. I do not know if the Breast Cancer Bill of Rights covers the choice of surgery. You might even want a different surgeon if this one is refusing you wishes. Sometimes called the Breast Cancer Bill of Rights https://www.cms.gov/CCIIO/Programs-and-Initiatives/Other-Insurance-Protections/whcra_factsheet.html

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Dense lumpy left breast, normal right. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?

Mavericksmom

It is too late for me, but while scientifically correct to find no significant change in survival or outcome by removing a healthy breast, I believe doctors should leave the final choice to the woman.

Most women work outside the home. When breast cancer hits us, we need to consider our health, families and careers!

How many doctors consider a woman’s career when recommending the best surgery? None! I can’t take off more than a day or two until after I retire in a few years. I wanted to give myself the best chance for not getting another recurrence. I wanted one less place for a cancer to develop because if it comes back in the next 2-3 years I can’t take off for surgery unless I could go back to work the next day. I don’t have a desk job so I wonder if the doctor would think that would be possible?

Our whole life is important, and our jobs need to be considered when treatment is offered!