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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Perhaps a silly question to ask as we all make our own decisions in life - but why no post mastectomy treatment?
What is your age? Do you feel the treatments will be worse than a reoccurrence of cancer?
Are you in poor health and feel chemo, radiation and AIs will take your life more than a cancer reoccurrence?
Yes, an oncotype score of 61 is high. Out of 11 lymph nodes were any positive?
If you decide to answer my questions, I thank you very much.
Hello @lmessinger1 welcome to connect. This feels like a tough situation to me. Stage 3 is not exactly catching it early, but still highly treatable and not metastatic. Grade 3 means more cancer cells were reproducing at a given time. A score of 61 means you are a high risk for recurrence, and these tests are specifically designed to help guide treatment decisions but they don’t give guarantees, of recurrence or not.
Did your doctor recommend a treatment plan to you? What were the treatments, and why are you thinking of refusing treatment?
Thank you for your interest in my choice.
I will be turning 64 in six weeks and am in very good health. Only one lymph node out of the 11 was deemed positive. After receiving my oncotype score, my oncologist presented me with the following treatment plan:
1) Chemo. Unfortunately, I do not recall the exact drugs or treatment length she suggested, as I was adamant about not putting any "poison" into my healthy body.
2) Radiation.
Six weeks (30 treatments) of daily targeted radiation to the left mastectomy covering an area up to my collarbone. Again, I am a healthy individual with no heart, lung or thyroid issues. The possible risk of damaging those organs with radiation and being left to live with that damage, does not align with my philosophy of a "quality of life."
3) Aromatase Inhibitors.
My oncologist also suggested I begin immunotherapy with not one, but three different AI's for a period of 10 years. While this form of treatment is the least invasive and touted as "well, if the side-effects are too much, you can just stop," I again do not want to do potential damage to my bones (osteoporosis) as this is a known major side-effect.
Here is a little background (maybe more than you want to know) but, I was previously diagnosed with Ulcerative Colitis (an autoimmunine disease with no known cure) when I was 37 years old. Over the next 17 years of my life, while I was being treated with various drugs, and iron and blood transfusions), the disease continued to worsen until it culminated to a "severe" state. (I was on two different immunosuppressant pills and weekly injections of Humera.) At the age of 54, just when I thought I had a gotten a handle on dealing with all the side-effects, I developed Valley Fever (a fungal infection that can be fatal, if not treated) due to my much-lowered immune system. Needless to say, I was taken off all UC meds (to raise my immune system) and put on a six-month daily anti-fungal regime.
During this six-month period, (fearing a severe UC relapse) I was introduced to Peter D'Adamo's "Eat Right For Your Blood Type" book. After reading the science behind his research, I immediately began his form of eating and have never looked back. I never relapsed with UC symptoms during the six months of Valley Fever fungal treatment and to my GI's dismay, NEVER went back on ANY of my UC medications. To this day, I have had no UC symptoms and am in remission. Other than daily turmeric capsules, I am on no prescribed medications.
I have learned that "food" can be your medicine, if you consume the appropriate choices for your blood type. I have faithfully been following this plan for my Type (A+) for nearly 10 years now and my only illness or health concern has been this breast cancer. Could all the meds I took for 17 years for my UC have contributed to my BC? I cannot say for certain but, long term side-effects exist as well as the short term ones with ANY drugs, and I am no longer willing to sacrifice my current quality of life for the possibility of extending it with years of added health concerns.
I hope this answers many questions that you and others may have with my decision, and I thank you for the opportunity to share them with this community.
Thank you, Chris, for your explanation of my particular Stage/Grade of diagnosis. I believe I have covered the answers to your questions in the post immediately before yours. 😉
As always we all get to make our own choices about treatment and we all have different reasons for our choices. I pray that you remain cancer free.
Imessinger1, first thank you very much for detailing your reasoning behind your decision for no follow up mastectomy treatments. Your background was very interesting and I can certainly understand your decision considering your complete medical history. I never heard of the book you read...tying in blood type with food choices and maintaining optimal medical health. It's wonderful you only take turmeric in your medication regimen with apparently good outcomes. My background: I had a bilateral mastectomy in May. I had in-situ in both breasts, areas of atypical ductal hyperplasia, both breasts and 1 (or so we thought until pathology) invasive cancer which turned out to be 1 in each breasts. My breasts were quite "busy". Stage 1 and Stage IIa, grade 2. Out of 12 lymph nodes - 1 was positive. I am 70 with multiple health issues, the most concerning heart disease and small vessel disease in my brain. Concussion in 2019 resulted in ongoing severe migraines to this day. My oncotype score was 14. Chemo (Thank God) was not indicated for me. I honestly felt I would not survive the chemo considering all my co-morbidities. So I hear you loud and clear about chemo. Since I had both breasts removed radiation not indicated for me either. And I would never have it. The chance of damage & scaring to my already damaged heart was too high. And, yes, you are right. Radiation can most certainly do severe damage to our internal organs. Which brings me to the AIs - yes that was recommended to me. But only 1.
I don't understand why you were told you needed 3 - unless b/c you are stage 3(?), grade 3, score 61 - for 10 years. My recommendation was 5 years. Again, you are right, I too am deeply concerned about the s/e of osteoporosis plus the recommendation of calcium supplements are NOT advised with ischemic heart disease which is exactly what I have. But my cardiologist gave the go-ahead for me to take despite the fact I could have a heart attack! So, I was between a rock and a hard place with my decision. Yes, my cancer was considered early stage, which means nothing in the long run for chances of re-occurrence. It can and does happen all the time. I was shocked to learn of my diagnosis...always my health focus was my heart. No breast cancer at all in my family (which is NOT considered a risk factor anymore). When I asked my surgeon "why" she simply said..."because you are a women and you are 70 years old". End of the "why" question. A lifetime of dense breasts with multiple calcifications - these simply went haywire??? Who knows? Not to take the Anastrozole, in my mind, was not an option for me. I felt I had to do everything I could to "help" me not to have a reoccurrence, not only for myself but my family. And this drug was my recommendation. Am I scared of it? Heck, yes! I decided to do everything in my power to prevent osteoporosis...mainly diet, exercise & a small dose of Ca supplement, plus other supplements for bone health. My last DEXA in 2022 was normal. Due for another in September. So I'll see what that looks like.
Absolutely NOTHING is easy on this cancer journey we are all on. Our choices...so very difficult to make. But the bottom line - as you most certainly know and are living - What works for ME? How do I wish to proceed? MY quality of life NOW vs. MY quality of life with cancer treatments down the road? Is it worth it for ME?
Living in the present moment or "doing" all I can to stop a potential cancer rearing its ugly head AGAIN which may take my life? At this stage in our lives we all know there are NO guarantees on anything in life. We can only do the best we can...in whatever decisions we make in our lives that affects every area of our lives.
No question it's obvious you are very happy with your decision regarding your future health & cancer.
I wish you only the very best as you move forward - living your best life.
It's all anyone of us can try to do...
An oncotype score of 25 and over in post menopause means that the cancer tumor will most likely shrink with chemo. Any there is no lymph nodes that are positive there is a 95% chance it has not spread (pretty good!). Also, surgery is 56% of the cure and the most impactful treatment of all. I believe the chances of lymphodima are around 20% and less if you exercise. Radiation has the lowest impact but still helps by minimizing local recurrence by 5-10%. And finally the AI will reduce all recurrences of BC by 50% - major if you are stage 3. I am also stage 3 grade 3 and urge you to at least consider surgery. I had a double reconstruction and it looks amazing (better than before). I can understand not wanting to poison your body with chemo but your oncotype awfully high. Chem aged me and I can understand why you would not want it. Although I had 8 rounds of chemo and don’t regret it as it brought it brought my cancer down from grade 3 to grade 2 in aggressiveness. In fact I had all of the standard interventions but also use functional medicine. I really believe in the metabolic approach to treating cancer with a ketogenic diet. No sugar, no flour (zero grains), high fat. See Thomas Seyfreid the cellular biologist from Boston College. Apparently if you keep your GKI - glucose ketone ratio below 3 the cancer won’t grow because it feeds on sugar. Also see Maggie and Brad Jones on the Jesse Chappus Podcast. I test my blood every day with diabetic monitors that prick the finger to measure blood glucose and ketones. The objective is to keep my glucose low and ketones high by eating the appropriate foods. I also practice fasting. Nutrition and exercise are really empowering (these is clinical trials showing that ground flax seed is as efficacious as tamoxifen for instance). If you absolutely don’t want to do any of the standard treatments at least consider surgery as it will give you the biggest bang for your buck. There was a celebrity on the news recently who skipped all the treatments and is now dead. Best wishes to you.
Thank you for taking the time to share your cancer journey and methods that have worked for you.
To be clear. and so your reply is not misunderstood by others, I want to reiterate that I have had SURGERY (unilateral mastectomy/lymph nodes) to remove cancerous tumors and tissue. My decision is just not to pursue additional treatment.
Do you have links to the flaxseed clinical trials? I was just told by oncology to avoid it because it has phytoestrogens and my recurrent BC is highly hormone dependent. Online info I found its impact on current BC is uncertain. Thanks.
We talk a lot about recurrence, but it’s important to differentiate local recurrence and metastasis. Local recurrence can be detected early, metastasis is usually undetectable until it’s late. Cancer cells can travel through blood stream, so negative lymph node, though considered a good indication that cancer has not spread to other organ, is not a guarantee that metastasis won’t happen. Chemo is a way to kill those rogue cancer cells, and if the cells feed on estrogen, then aromatase inhibitors will starve them to death. Not a guarantee either but there are no other alternatives. That’s my reason behind taking anastrozole, then exemestane, and now Letrozole. Of all three, I tolerate exemestane the best. Sure there are aches and pains, blurry eyes, but to me it’s better than dealing with metastasis which can spread to liver, lungs, brain. This is something that our past member Windyshores expressed concerns with. Nothing we can do about dormant cells, but live ones? I don’t want to have any regret that I haven’t tried to prevent metastasis. Good luck to all of us and thank you all for sharing your opinions and experiences.