Topic: My choice--refusing treatment

Oct 20, 2020 09:18PM Jpk434 wrote:

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

Oct 21, 2020 05:45AM dtad wrote:

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!

Oct 22, 2020 10:26PM Jons_girl wrote:

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

Oct 25, 2020 05:01AM Jpk434 wrote:

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.

Oct 25, 2020 07:24AM Beesie wrote:

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.

Nov 15, 2020 10:36AM L-O-R-I wrote:

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.