Anyone with an Oncotype score of 61 choose no treatment after surgery?
I was diagnosed with HR+ HER2- Stage 3, Grade 3 breast cancer this past January. I had a unilateral mastectomy and 11 lymph nodes removed in March and my oncotype score came back extremely high at 61. I have chosen to forego the advised chemo, radiation, and numerous AI's recommended.
I am interested in finding anyone on this forum in a very similar situation (extremely high onco score and choice to forgo all treatment after surgery) to connect with. Thank you all.
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Thank you for the clarification. I am so glad you had surgery!!! I can completely understand your hesitancy toward chemo. It aged me but had an impact on downgrading the cancer so I wouldn’t change anything (although I could be proven wrong in the long-term). I am now trying to fix my skin (Botox) and hair (red light therapy). It’s expensive but it’s working. I am also using laser treatment to fix the vascular defects on my chest following radiation. The good news is that new technologies have given interventions to fix side effects from these terrible treatments. As for the hormone therapy for stage 3 BC, I have heard stories on podcast's of breast cancer surgeons for instance who had BC an stopped taking the medications because it caused neuropathy to their hands. They subsequently received a diagnosis of stage 4 and completely regretted their choice to stop hormone therapy. My cancer is very hormone sensitive so I would never dream of stopping. I have been on an AI (letrozole
That binds with the estrogen) for several years now with minimal side effects and plan to continue using it until something better comes along. I also use a CDK 4/6 to stop the cancer cells from dividing. And have zoledronic acid injections to stop bone metastases. All these medications bring my recurrence rate from 70% to 25%. And then there’s the ketogenic diet ….
I’m sorry. I don’t have the clinical trial information. When I search I just read the information and move on. If I were writing a research paper I might take notes and record sources. If you search the literature you can find. My naturopath suggested I take flaxseed ground organic seeds and not flaxseed oil as the latter could be contraindicated. Maybe that’s what they mean …
I was dCis grade 3 single breast. Nothing in left breast. After surgery I was Invasive with oncotype of 49 .. my cancer cells have a DNA type that if left untreated I am sure would have led to triple negative at some point. ( Trust me I do a lot of research worldwide) My doctor who is well seasoned had already suggested 4 chemo rounds. I remember telling my family if they said I needed like 3 rounds maybe I would take that. Radiation was a no for me so I was so happy when they said I did not need radiation but 4 rounds of chemotherapy. I also chose to do chemo since I do not think my body will do well with inhibitors. I have never been so scared in my life.. but guess what.. it has not been bad at all. The only issue I get is when I get neutropenia day 5 otherwise I'm usually back to myself within 2 weeks ready for next one at 3rd week. I have 2 more to go.. I have a rapidly dividing cancer cell and I did the chemo in case there was a straggler that escaped. Yes they are killing both good and bad cells but chemo has come a long way and so many options. Also that injection they give you to make your white, red and platelets is incredible. It does it's job. Grade 3 is rapid dividing cells .. those things are so clever . I AM all about natural stuff but I also believe that once in a while I can look to science to zap what I need zapped. Then I can cleanse and rebuild my body with all the natural things after . I just wanted to ensure I had no regrets in the future. You noted you are your way to health That's awesome and you won't have any issues doing it again if you ever had to take a radical approach to your body and then heal it afterwards once the cancer cells are gone.
That sounds about right from the article I read. Appendix A does mention flaxseed
https://pmc.ncbi.nlm.nih.gov/articles/PMC7848814/
Yes, yogi. You nailed it! Surgery, chemo, radiation, hormone therapy. I am on letrozole which only works 50%. But often people develop a resistance to these AIs. The resistance develops over time - ESR1 and PIC3. Many people with metastasis have these (with a quick glance at the research 10-40%). I tried to get on a clinical trial for a drug that circumvents the ESR1 resistance it is called Imlunestrant (they are recruiting now). There is trials going on in Canada & USA. It is for women who have a high chance of recurrence who have not yet experienced any recurrences. You need to have finished 3 years on an AI already. I was ineligible because I had a recurrence immediately after my mastectomy. But I am holding strong to the ketogenic diet as a cure and management strategy.
Thank you for your post, Peggy.
Yes, I have spent time with individuals dying of cancer and it can be a "harrowing" experience to watch someone you love dearly die in this manner. While I appreciate your emotional experience and do not intend to disrespect or make light of your feelings, this was "your" pain in losing them. I hope the excellent hospice care that they received kept them pain-free at the end of their journey and the enormous suffering you state they felt was only from leaving their loved ones behind.
I also want to correct the statement you made about me being able to overcome my cancer by diet. I follow a specific diet to keep myself as healthy as possible on a day-to-day basis so that I may enjoy my remaining days (however long they may be) in the best of health possible. Do I believe this will make me "cancer free?" I do not know, but it is my best choice for truly enjoying what time I have left.
As requested, I will keep those interested in my prognosis informed with a post from time to time.