My choice--refusing treatment

Thank you for your reply. Yes, I will also be doing diagnostics every 6 months. I wish the two of us much success in this journey

Hi everyone. I opted out of anti hormone therapy from the start. I only had surgery. I'm 51/2 years out! So far so good!

dtad: thank you for letting us know your story. That’s great to know you’re doing well! Very encouraging!! Hope all continues to go well for you

Hi Bessie, Thanks for ur reply. With the new posting u should be able to see my “stats” below. In addition to the oncotype score of 17, I have consulted a naturopath, who found about a half dozen deficiencies in my body, nutrients mostly targeting glucose metabolism & cancer prevention. As a young adult, I was diagnosed with hypoglycemia, but the medical community told me to control it with diet, which worked. However, now I have subtle symptoms, such as borderline A1C & morning nausea. I hope to fix the deficiencies with supplements that enabled extra glucose to feed the cancer cells, in addition to having gone off thEHRT, which was also feeding my ER+ cancer. My naturopath assessed that I should have never been on them due to an appearance of estrogen dominance in my history, but the medical community doesn’t test for it. Behold the blood work confirmed it. So in addition to my relatively low risk according to general medical health hx & tumor pathology, I think I have uncovered more subtle health issues that did put me at risk, which are fixable. It is for this reason that I chose to forego AIs. I understand that with hormonal + cancer, the chance of recurrence never goes down to 0, thus the anxiety, (actually I wonder if I have PTSD). Initially, I was going to do radiation, but learned from this forum (& confirmed by MD) that once I get whole breast radiation, u r then locked into a complete mastectomy (I had a partial one with the segmental lumpectomy, followed by onco-reduction), if it were to reoccur. So my plan is to save the radiation for if I need it later with a lumpectomy. There will be freq monitoring done, & of course, the plan will change based on what happens. Medicine has a tendency to over treat, which is why there is research now going on stating u don’t need this & u don’t need that. Also I believe Big Pharma is involved at some level, which is why I also have trust issues with medicine.

Jpk, your stats are still not visible on your signature line.

I don't have a copy of an Oncotype report for a 17 score, but I do have the TAILORx study, on which the current Oncotype recurrence risks (for node negative) are based.

Here's a chart from the Appendix of the report; I've highlighted a 17 score. I included both the 'aged 50 and under' graph, and the 'over age 50' graph because I don't know how old you are.

What this is saying is that at an Oncotype 17 score, someone who takes endocrine therapy will have a 9-year risk of metastatic recurrence just below 5%. Since endocrine therapy reduces metastatic risk by about 1/3rd, this means that without endocrine therapy, 9-year metastatic risk will be approx. 7%. What could change this, either increasing or decreasing the risk, is if something about the patient or her diagnosis is way off the average, i.e. a tumor that is significantly larger or smaller than average (average tumor size in TAILORx was ~1.75cm), if the grade of the cancer was higher or lower (the average in TAILORx was grade 2), and if the patient is significantly younger than the average (in the '50 and under' cohort) or significantly older than average (in the 'over 50' cohort). The Oncotype report that patients receive don't reflect any of these differences - everyone with a 17 score will receive the same recurrence information - but Oncotype provide to MOs a separate computer model that allows the MO to recalculate the risk by applying these factors (age, tumor size, tumor grade, and whether the patient will be taking an AI or Tamoxifen) against patient's specific Oncotype score. This is the Oncotype RSPC model (Recurrence Score Pathology Clinical).

In any case, unless your diagnosis or age is way off the average, it appears that the extra metastatic risk that you face by not taking endocrine therapy is in the range of 2.5%. For many patients, trying endocrine therapy is worth it for that additional risk reduction benefit, but for other patients it's not.

Jpk, since you said that "The medical team cannot or will not understand my decision" I would suggest that you ask them for their take on the information I provided. I'm pulling it from the TAILORx report; it would be interesting to see what your doctors tell you about how much additional risk you are exposed to by not taking endocrine therapy.

Don't be uncertain, Jpk434! It makes sense to me too, to skip the toxins and work on increasing your body's state of health. Especially in this day and age, it would be scary to wipe out your immune system, when it seems that we may need it to survive Covid19, if contracted.

It does make sense to continue on with diagnostics, Jons_girl. Whether going with traditional treatment or not, we all need the encouragement of positive results to stay on track. Congrats on your three and a half years!! I am two and a half years post-surgery and looking forward to my next 30 years, Lord willing I get to live till 90! lol

Violetkali, you are right, quality of life IS very important and should be included in ones deciding factors.

hello,

I found a lump myself on my left breast. My surgery will be in a few weeks and I’ve decided on a bi lateral mastectomy. Cancer runs rampant on both sides of my family including my sister, mom and grandma. I’m estrogen and pro positive, Her2 negative and have been tested for 84 genes, all negative. The say I caught it early so I am being proactive. I had a benign lump removed 3 years ago on opposite breast. My choice is no treatment but I feel so much pressure from the doctors. I’ve been taking loads of supplements for years, plus my iodine. I just started drinking Chaga mushroom tea daily, Flor essence detox daily, flax oil daily and am considering oxygen drops. I have no idea if it is in my lymph nodes til after surgery. Is anyone else trying to do alternative methods to stay away from the pills and chemo? It’s hard to find suggestions when everyone leans towards the conventional route. I’ll take any advice or direction I can get

Denise...yes I only had a BMX. No other treatment. I lost 30 pounds and try to exercise daily. I also take several supplements. Its been 6 years since my diagnosis. So fa so good! Best of luck to you.

Hi PAKNC, You have been through a lot. Tamoxifen decreased my cholesterol some of the other ones like letrozole will increase it. Did you have a liver function lab done? (CMP)? Before BC I had a fatty liver diagnoses. My triglycerides level started to elevate. My doctor said to reduce carbs, but I was unable to do it until this past October. I went on the Keto diet for 6 weeks and then started a low carb diet. My liver panel finally came back normal. My triglycerides are now within normal limits. I feel much better. I had gain about 20 pounds I needed to lose. Best wishes.

thank you. Trying to read a lot of stories here

Hi dtad, bessie, Monetswaterlillies and all others. I'm 65 years young, so most similar to you dtad, in my diagnosis and choice of no hormonal treatment because of my low risk as best they can tell. But if I was in my 50's or younger, maybe I'd not be so certain. I don't feel my age, was always healthy, but have stepped it up with more exercise and many supplements. I discontinued hormone therapy replacement therapy in May after my diagnosis. I felt it did me favors, even though I was on a low dose. I was on them for 10 yrs. which is not recommended. My heart and bones benefited. ( had above normal bone density, and good heart blood pressure, etc.) , but it may have caused/ contributed to my cancer, dr.s say not necessarily, so who knows? Anyway, I'm now getting hot flashes, hair thinning, most discouraging is high blood pressure and am taking a med for that.

Supplements include mushroom extract, DIM, curcumin, melatonin, and also recently added calcium D glucarate to help increase estrogen elimination from the body. Found these with my own research, and by no means am I a medical professional. I look at the NIH website and Nature.com at medical studies. Sadly, many are never completely finished because more trials and research needs to be done. Everything takes many years. However, I think they don't get as much support/ money from pharma. And if they want to discuss serious side effects as a reason not to approve, it can be said that current approved meds have several. Other men and women on this and other platforms were helpful with natural supplements. I'm currently looking for a cancer specialist/naturopath that can give input, tweak the amounts, etc. This is what I chose, what I feel is best for ME.

Bessie you are so helpful in these threads, and I'd encourage those younger, like waterlillies to consider options by the medical team, combined with your own research ( which needless to say is very time consuming and needs to be highly reputable).

My best and much love to all!

PAKNC Does TAMOX impact glucose ?
Never knew!

Hi Leia, I just had a hysterectomy for endometrial cancer. 3 lymph nodes removed and all tested negative. I am supposed to talk to a radiation oncologist in a couple weeks. I have just found the Budwig diet and have begun the protocol. Was your doctor supportive? I live in Kirkland WA and I am looking for doctors who support alternative therapy.

edge of no return:

I chose adifferent treatment option, only surgery. And I get diagnostics every 6 mo.

I was told by my breast surgeon to do radiation and go on hormone blocker post surgery. Said it would probably return. My surgeon changed her tune when my medical onc dr supported my decision. She said I'd probably be fine. My medical oncologist nurses tho were not kind to me. He ended up just going to teaching and not seeing pts anymore (teaching hospital) and I didn't stay at that office. I have a very supportive medical oncologist at a new office who has great supportive staff. It's amazing how much we have to advocate for ourselves

Looks like we had cancer the same year. Has yours returned? Hoping all goes well for you

XO, XO 💐💐

I hope that you are bearing in mind that metastatic bc is a whole different animal than lower stage bc. Your horse is out of the barn so to speak. I don't think anyone would say you're not trying enough. Despite what you read here, many folks do not have intolerable se’sfrom AI's. A support site is not a true representation. I have had over 10 progression free years on an AI alone which has allowed me to live an almost normal life. I am not suggesting that this is the way for everyone but just hoping you don't shut doors. Comparing your situation to those who don't have MBC is unrealistic IMO.