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Topic: Thinking of refusing chemo with 26 oncotype

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: Mar 8, 2018 10:29AM

pineappleskies wrote:

I'm 35 and my doctors seem to want to be very aggressive with my treatment because I am so young. Up until I received my Oncotype Dx, it seemed like my treatment was going to be lumpectomy and radiation plus tamoxifen for 5 or so years. I accepted this, at least to give it a try and see how I feel. Now I found out my oncotype is 26 and it's right on the border of what my oncologist considers high risk (he says anything over 26 gets chemo).

I am struggling with this. Everything in my intuition from the beginning has told me no chemo, not necessary. But every appt they do the most to scare me with statistics. And my husband wants me to do everything possible to get rid of this, they are scaring him too. I need my closest allies to trust my decisions and believe I will survive as much as I believe it (and I do). But the doubt of this decision sneaks in sometimes. It's a big deal!

Just sort of venting here, and looking for experiences if you're willing to share. Did you refuse chemo? Do you regret it? I am getting 2nd and 3rd opinions, but all my doctors are under the same facility because of my insurance so it is likely they may all recommend the exact same treatment.

My full diagnosis is IDC Grade 2 tumor, 1.3 cm, no node involvement (they removed 3), Stage 1A, ER+ PR+ HER2- w/ oncotype of 26. No BRCA gene mutations.

I take a very holistic approach to every area of my life and am very into alternative medicine, so this feeling of being treated like a walking tumor as opposed to a unique human being really irks me and causes me to lose trust in my doctors, naturally.

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Mar 8, 2018 12:13PM juniper wrote:

A 26 does put you in the murky area. I was your age at diagnosis - but I was diagnosed at a later stage and was HER2++.

The good news is that you don't have to make a quick decision. You can take the time to find the "right" doctor and treatment plan that you feel comfortable with. Go easy on your spouse - he's struggling too.

Dx 7/31/2007, IDC, two nonpalpable tumors, 5cm and 6cm, Stage IV (mets to mediastinal nodes), Grade 3, 18/18nodes, ER+/PR+, HER2+
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Mar 9, 2018 07:47AM Denise-G wrote:

pineappleskies - my recommendation would be to get a second opinion at an NCI Designated Cancer Center that has the team approach.

Listening to one doctor never works for me. Listening to a team of doctors always works for me.


www.denise4health.info my BC Blog with over 200 informative posts - stop by and say hello! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/23/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/27/2011 AC + T (Taxol) Targeted Therapy 2/28/2012 Herceptin (trastuzumab) Hormonal Therapy 10/11/2012 Arimidex (anastrozole)
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Mar 9, 2018 08:27AM - edited Mar 9, 2018 08:29AM by ElaineTherese


You could always ask for a Mammaprint test. Mammaprint tells you whether you are at high or low risk for metastisizing, with no intermediate range.

I said "yes" to chemo. But, I had a large, aggressive tumor (triple positive, Grade 3) so it was a no-brainer for me.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Mar 9, 2018 08:31AM edwards750 wrote:

What did the Oncotype test say your % of recurrence was? Mine was 8%. I didn’t have chemo. My score was 11. I had IDC, Stage 1b, Grade 1. Lumpectomy and 33 radiation treatments and 5 years on Tamoxifen.

I think the fact you are young is contributing to the aggressive approach of treatment plus the 26 score. I understand your husband’s feelings because he is scared too but it is really your choice primarily. Chemo is no walk in the park. I had friends who had it. Everyone is different but they did well with the side effects. They all had aggressive cancers. Had I not had such a low score I withdrew have had to have it.

If your second opinions concur then you have a decision to make and it won’t be easy but it has to be your decision and what you think is best.

Be sure whatever you decide you don’t second guess yourself and don’t look back.


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Mar 9, 2018 09:19AM Georgia1 wrote:

I agree on getting a second opinion, even if you have to pay out of pocket for it. Find an experienced oncologist and make a big list of questions in advance. But ultimately it is your choice: if you can deal with the possibility of a recurrence and another surgery, and you are comfortable with the regular monitoring, I would support you passing on chemo. But it does make radiation and an AI (not Tamoxifen) more important.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 9, 2018 12:09PM edwards750 wrote:

One other thing -There are a number of women on this website who passed on chemo despite their doctor’s recommendations. So far, so good for them. I wondered if my score had come back like your’s what I would have done/or do. It’s easy for others to tell you what you should do but frankly it’s not happening to them - it’s happening to you. I can’t say with absolute certainty that I would have done it. For the record I’m pretty sure my husband would have reacted like yours.

I have a friend who is a nurse at St. Jude. She wanted to have a double MX. Her MO, and coincidentally mine too, advised a lumpectomy. He is all about saving the breast lopsided or not like mine. She took her case to the director of the West Cancer Clinic. He agreed with her decision. Of course they couldn’t make her go one way or the other. My point is she made the final decision.

Some doctors take it personally if you go against their medical advice. Fact is it’s your life not theirs. All they can do is advise you.


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Mar 12, 2018 06:32AM pineappleskies wrote:

Thank you everyone. I am meeting with a few oncologists to see what they have to say. I haven't been given statistics yet as far as what % chemo will improve my survival rate vs. just doing radiation and hormone blocking therapy. I am also trying to get in for an out-of-pocket 2nd opinion at UCLA cancer center. I will post an update once I get more information and make a decision.

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Mar 12, 2018 03:12PM exercise_guru wrote:

I think a strong consideration being so young involves the side effects of chemo. It often shuts down your ovaries. This would impact your sexuality and family planning. Much more to consider than just the oncotype. Look up the SOFT and TEXTA studies.

Personally being so young I think it worth considering a dbl.mastectomy and tamoxifen with no radiation atleast get the information on that. They have significanly improved the procedure and while its not a california hollywood job many women are happy with the results. Many have had nipple sparing successfully which for me was the hardest to face the loss of.

It's a lot to process get a second opinion or a mamaprint. Insist they explain what put you at a 26. For example maybe it was the profile of the tumor or maybe it was your age. This is worth knowing.

Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Mar 13, 2018 07:56AM bluepearl wrote:

That oncotypeDX is probably reflecting your age. The rest of the tumour profile is pretty good. Almost always, young women are advised to get chemotherapy even WITH good prognostic tumours

; there is just something about young women's bodies cancer likes.

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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Mar 13, 2018 09:16AM pineappleskies wrote:

Wow, interesting. I didn't realize OncotypeDX was affected by age, I wonder if that is the case for me since everything else about it seems not really aggressive. Thank you, more questions to ask when I see my oncologists. I've got 2 new oncologists I'm interviewing :) plus an out-of-pocket third opinion at UCLA with a doctor who is well-versed in complementary medicine.

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Mar 13, 2018 11:21AM - edited Mar 13, 2018 11:23AM by bella2013

At age 35, your ovaries are still producing estrogen. When you have an estrogen positive tumor, the tumor thrives on estrogen. A question to ask the oncologists: should you have your ovaries removed? That could be a difficult decision based on your reproduction plans.

I encourage you to think about your future. Don't get lulled into thinking that the cancer isn't that aggressive or that bad. Cancer is cancer and it's devastating. The goal is to be cancer free. I understand not wanting chemo. I explored all other options. I chose a BMX with DIEP Flap reconstruction. The BMX was a simple mastectomy. Since my lymph nodes were clear there would not be any nodes taken with my breasts. My tumor was also IDC. They did not remove any muscle from my chest wall. Having the BMX took radiation and chemo off the table. My Oncotype DX is 14.

I am now trying to come to terms with hormone therapy. I don't want to put toxic substances in my body either. I am still recovering from my surgery and am very comfortable with my decision.

It's good that you are getting additional opinions. I pray that you will have peace with the path that you choose. Let us know how you are doing

Diagnosed at 60 years old. Oncotype Score=14. Dx 12/4/2017, IDC, Left, 4cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/3/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 2/21/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Mar 13, 2018 01:05PM Meow13 wrote:

It comes down to a balance of risks. Chemo does not ensure a cure by any means. You make the decisions, there is no right course of treatmemt.

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Mar 13, 2018 11:55PM farmladync wrote:

I didn't do chemo or radiation after considering all the side effects . My advise is to read all you can about your type of breast cancer . Pray ( if your a spiritual person ) before taking treatments . I don't regret not having the recommended treatments , of course most doctors don't like it when you refuse . It's a personal choice . My husband and family understood my decision .

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Mar 14, 2018 12:18AM moth wrote:

I'm 50 and I was going to FIGHT for chemo if they didn't offer it to me. If I were 35yo I would be throwing everything at it. My oncologist said you get ONE shot to hit it hard at the outset. No guarantees. Chemo might not get it all and it might still prove fatal. We just don't know enough yet about whether it will recur or not.

I actually had a whole stack of papers printed about intermediate scores and how to proceed - turned out not needing them as my onco score was nowhere near intermediate - & as I understood it, the younger you are, the more able to withstand chemo (ie, no serious co-morbidities) the more you should consider doing it unless your onco score was super low.

Bottom line is I'm more scared of recurrence than chemo. It's a hard decision and one that you have to be able to walk away from and not second guess ever again. Best wishes as you navigate this.

Dx at 50; Left, IDC/DCIS 1.7 cm, Stage I, Grade 3, 0/5 nodes, pathology ER+/PR-, HER2-; Oncotype says ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol)
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Mar 14, 2018 02:10AM pineappleskies wrote:

The fertility aspect... My husband and I have been trying to have a baby for 2 years. We've suffered 5 miscarriages (the first 4 were due to a uterine anomaly which I had corrected). The last miscarriage was 2 months before I was diagnosed. We have been told that a gestational surrogate might be the best option for us, even before the cancer diagnosis. We're freezing embryos before I start any treatment. One thing I need to ask about each possible treatment path is if I will be able to carry a child via IVF or if a surrogate will be the only option for our embryos after I complete whatever treatment I choose.

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Mar 14, 2018 03:42AM NancyHB wrote:

Just a quick - but important - clarification: the Oncotype score does not take age into account, it is based solely on tumor orofile

"Be happy for this moment. This moment is your life." - Omar Khayyam Dx 11/22/2011, IDC, Left, 1cm, Grade 2, ER+/PR-, HER2- (FISH) Surgery 12/5/2011 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole-breast: Breast, Lymph nodes Dx 1/27/2016, IDC, Left, 1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/15/2016 Lumpectomy; Lymph node removal: Left Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy: Left; Reconstruction (left): DIEP flap Dx 1/31/2017, IDC, Stage IV, metastasized to bone

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