My choice--refusing treatment

You guys who refused radiation and Tamoxifen are so brave. I didn’t hesitate to follow my doctors advice to the letter. Frankly I was afraid not to. My whole BC process was on automatic pilot from start to finish.

I have been fortunate because I’m 8 years out this month. I had IDC, stage 1b, Grade 1. I had 33 radiation treatments and took Tamoxifen for 5 years. Also blessed no unmanageable side effects.

I did have a good medical team. My BS, MO and RO were all compassionate and caring. Actually their medical staff was more so.

There are zillions of doctors out there so had I not had a connection with my doctors I definitely would have found another.

Diane

DrMae: My breast surgeon wanted me to meet with a medical oncologist too even though I wasn't planning to take tamoxifen. She told me that he may not want to follow you if you don't take meds but you should go anyway. So I went. He was a kind person. He DID want to follow me even without taking meds. I thought that was nice. I told him my reasoning as to why I didn't want to take tamoxifen nor do radiation. He supported me in my decision. I have since decided to just continue having manual exams with a dr associate of my breast surgeon and having her follow me as I get ultrasounds every 6 mo for just being vigilent in case anything were to return. I may go back to see him too at some point. But I feel good about my follow up plan going forward.

Just tell your oncologist your wishes....they should support you. Also keep in mind if you don't like this oncologist you can always go to a different one.

Like you, I have tried to make positive changes in my life. My medical oncologist told me that IF my cancer returns it will probably be very slow growing like it is now. So I believe I could catch it early again IF it returns. I am happy with my decision. Everyone has to make their own decision regarding meds and radiation etc and any oncologist should support your choice whatever that is. Blessings as you journey forward!

Hi DrMae:

I don't know of any registry like that at all. No they don't do any studies like that, that I am aware of...maybe because no company would sponsor the study?? But maybe studies don't have to have sponsors I am not sure. I would think someone though would have to pay for these studies?

livelovelaugh:

You may want to specify the persons user name that your responding to so they know to reply to you....just letting you know. Have a great w

Deni, I had bmx in Aug and also said no to an AI. I was on HRT prior to dx and stopped that immediately, had oopherectomy, have low BMI, so not a lot to produce estrogen. I am using Mediterranean diet and exercise as my tx. The online calculators indicate that AI only improves my recurrence risk by 1%. For that little benefit, i decided at 68 that qol is more important. My breast specialist indicated there was no reason for the MO to follow me and if she was needed in future they would simply set me up w her again. I have no regrets about my decision. By not taking an AI, I risk bc recurrence; by taking it I risk a whole host of other issues. For 1%, not worth it for me.

I've also refused the AI's for now. It's been almost a year since surgery, but I have needed this past year to rest emotionally or whatever before going on any drugs. I am 70 and did do the radiation after lumpectomy. My cancer was prognostic 1B and clinical 2A so it's pretty early. However being ILC my tumor was pretty highly estrogen positive. Not taking the AI does cause me a lot of stress. I've been doing so much research on the pro's and con's. The Oncotype test determined my recurrence without the AI would increase around 3%. It was 6% with the AI. However, the Onco people don't know that I also have LCIS. I don't trust all these tests unless they know our full story --- like my LCIS. So I have decided to do a circulating tumor cell test. If we are determined to have CTC's in our blood our chance a recurrence is much greater. It's a prognostic test only -- they can't do anything about CTC's . That test is going to make my decision about going on an AI. I am so frustrated that we don't have individualized treatment. I believe that is the insurance companies fault. Have you noticed how little our insurance pays the doctors. No wonder they don't have time to do anything but provide us with standardized treatment. By the way my fear of the AI is Osteoporosis since I already have Osteopenia.

Even before being diagnosed, I knew that I would never take Chemo or Radiation, if I was ever faces with the options. That made it really easy for me after I was diagnosed. It was a simple "No Thank-you". No tears and next to no fears. It was a shock that I was diagnosed with breast cancer, yes, but my difficult decisions were already made. I'm all for strengthening the immune system. There are so many ways to help do that, with amazing results! It will be 2 years in April. Time has really flown by! I've had MRI's, Ultrasounds, and Mammograms since, all with great results. From here on, I will be doing another MRI in July, and then one every 2 years after that. No more Mammograms for me. They are so uncomfortable and show less than the MRI anyways. It's amazing how I have learned not to sweat the small stuff and also how to avoid unnecessary stress. I'm really loving life!!

Yep, jessie, I completely love that my risk of death is very high over the first 5 years, and then I don't need to worry about it as much. Makes life much easier for me than for those non-tnbc patients.

Maybe we could skip comparing diagnoses for how "bad" one kind is compared to another.

Yogatyme I am so very sorry you've lost your brother. I know how heart broken I would be, sending you love and comfort.

So so sorry about your brother. My thoughts are with you

Yogatyme --- Oh, I'm so sorry. Cancer is horrible. I always thought my parents would die of cancer, but instead they both died from dementia complications. However, I lost my husband when he was just 58 to a horribly painful cancer. You just don't understand it until you or a family member has gone through it.

Sorry for your loss, Yogatyme! I can't imagine losing a sibling that way! Makes me want to fight even harder so that my siblings don't have to go through that.

Darlings,

I just feel like venting and I think this might be the spot. First of all, thank you for posting, I no longer feel alone.

This is my 7th year with breast cancer, I'm 62. Bilateral mastectomy, no reconstruction, no chemo. Last fall I had my first radiation which I believe brought on plural effusion.

Having my chest drained of just over 3000ml I was referred back to an oncologist for a "drain".

The standard of care for me is Ibrance and Arimidex. I'm one of those women who gets a migraine if you mess with my estrogen. 4 generations of women in my family have had menstrual migraines. I'm old, I know my body.

The oncologist answered ZERO questions about the drain. He acted as if he'd never heard of menstrual migraines and that I must have cancerous tumors in my brain causing migraines. Though I only have them now related to anti-hormone cancer treatments, he's ordered an MRI on my brain, Ibrance and a full blood work up.

While I wait on an MRI the plural effusion continues in the form of pulmonary effusion. I'm going to the ER this Saturday to have the fluid drained from my heart and to have a drain placed in my chest. Or maybe I should just wait for the stupid oncologist to get his head out of the "standard of care" box.

Not all of us are "standard".

Thanks for the use of the hall,

cb

Did you have a CTC test? I never had one, but I quit chemo and declined everything else due to QOL. I was 31 @ DX for reference.

I always wondered if maybe I didn't have CTCs

I opted out of radiation and no meds. So far I’m ok. I do have diagnostics every 6 mo tho. For me, it’s important to be watching myself with diagnostics. So I’m having MRI in November. Then in May will probably have ultrasound and maybe mammo too. I am three and half years post surgery