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Topic: My choice--refusing treatment

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Jan 24, 2017 01:34PM - edited Jan 28, 2017 01:00AM by Monetswaterlillies

Monetswaterlillies wrote:

Hi everyone,

My post won't be too popular but I'm entitled to feel the way I do--to fight cancer or not. Im 50 and recently dx with IDC. Clinical staging is in the works but regardless of the results, I just don't care to treat it. I have my reasons, and would like to talk with others who feel similar feelings.

Thanks so much, everyone.


Dx 1/20/2017, IDC, Right, Grade 1, ER+/PR+, HER2-
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Oct 17, 2020 03:14AM Trishyla wrote:

There's a poster named Pipersdream, I believe, who has chronicled her journey to stage IV after refusing conventional treatment. She posts in the alternative forums. You should check her story out, jpk434. She has a unique perspective.

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Oct 21, 2020 12:18AM 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

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Oct 21, 2020 01:57AM Jons_girl wrote:

jpk434:Thank you! I hope all goes well in your journey and recovery. Have a wonderful week.

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Oct 21, 2020 08:45AM 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!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 21, 2020 10:41AM Beesie wrote:

Jpk,

Many patients are "cured" by surgery alone. So the decision to not have any additional treatment might not be that risky for you. But it really depends on your diagnosis. In a discussion thread like this, people with all sorts of diagnoses post; for some, the decision to take no treatment beyond surgery presents a low risk whereas for others, the risk that metastatic disease might develop is much higher.

To me, the key to feeling better about your choice is not what's happened to someone else who had a different diagnosis than yours, but to understand your level of risk and know that this is well within your personal risk tolerance. What was your diagnosis? And what was your Oncotype score? You indicate you had a low score. While that means that chemo isn't recommended, the score also will indirectly tell you how much risk reduction benefit you would get from endocrine therapy, and what your metastatic risk is without taking these meds. If the benefit from endocrine therapy is small, you can feel much more comfortable with your decision.

Note that I put the word "cured" in quotations because the word is contentious on this site. In reality, because breast cancer can recur more than 20 years after the initial diagnosis, none of us can know that we are cured until we die of something else (hopefully not until decades later), without the breast cancer ever recurring. That said, particularly for early stage patients, many of us consider ourselves cured until proven otherwise.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 23, 2020 01:26AM 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

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Oct 23, 2020 08:55AM dtad wrote:

Thanks so much!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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8 hours ago 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.

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5 hours ago Jons_girl wrote:

jpk434:that’s interesting! Thanks for sharing your journey with us. I chose no hormone blockers and no radiation as well. No radiation for the same reasons, my dr told me mastectomy next time if it returned if I chose radiation. My MO supported both decisions which I am thankful for. Have new MO now. My last MO is not seeing pts just teaching now I believe.

I don’t see your stats below your posting, just so you know.

Have a wonderful week!

Tam

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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5 hours ago 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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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5 hours ago Jons_girl wrote:

Beesie that’s a great point. I had told my MO sorta the same thing....my recurrence rate was low and I sited low amount of studies proving the other sides point of view (take hormone blocker or not). MOdid agree not much out there in the way of proof for stage 1. Probably because it is stage 1. The studies that were out there didn’t scream to me and my husband that I needed them to get a ton lower recurrence rate. So I chose none. But again that’s not to say everyone should do what I did. 😁

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel

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