Anyone over 50 with an onco score of 26 that opted out of chemo

hey everyone. I was blindsided by my oncologist who said that my score of 26 was high and I would need 5 months of chemo even though I was early stage idc with a 2 mm cancer grade 1A. After crying for days I looked at the scoring and realized that I would be going through this for maybe a 10% chance of it not recurring. I decided that the risk were not worth the benefits and opted out. My breast surgeon was not happy she said that your score means 26 women out of 100 will recur and when it does it’s not curable. Now it’s been 5 months since surgery and the oncologist called again today to check to see if I was going to go through this. I just can’t get over the fact that there is not that much benefit and to go through chemo fighting something that might be in your body. Am I crazy? Just wanted to know I wasn’t alone.

I did not see your reply. I’m having a hard time navigating this forum for some reason. I couldn’t find my first post that I replied to. To see if there was more replies. I couldn’t find out how to search for it.

thank you

You can go to the search panel on the left side, and do a "Search by Member Name". Just put in your own screen name and all yours posts will pop up.

Hi Rgmcmanus

I too was blind sided by my MO. I had surgery Dec 13 with a follow up on Jan 7 with my BS he felt he had everything, my margins are clear and so are my lymph nodes. But the cancer panel wants me to do a 12 week chemo regime and a 17 cycle (1 year ) of Trastuzumab. This protocol is preventative in case there is reoccurrence. I’ve decided that benefits are not worth the damage the chemo would cause. I’m so grateful to find you, you are not crazy and you are not alone. I meet my family doc on Jan 22 to inform him I’m not doing the treatment and the MO on Jan 28 to tell the same. I’m not sure what the reaction will be but I believe in my surgeon and the pathology reports.

Thanks for posting

K

Thank you so much Cowgirl I’m trying to read and find as much info as I can about HER2+, my original diagnosis was DCIS stage 0 this was a shock. I will keep reading I really appreciate your feedback

Kjl_hammie99,

Surgeons focus on the breast area. A surgeon's job is to operate in order to remove the cancer from the breast and to minimize the risk of a localized (in the breast area) recurrence.

The Medical Oncologist's job is to look at the pathology of the cancer and assess what other treatments might be required, specifically to reduce the risk of a metastatic recurrence (a distant recurrence in the bones or other organs). Even with clear nodes, it is possible that before the tumor was removed, some cancer cells might have broken off from the primary tumor and slipped through the bloodstream, or even though the nodes (undetected / leaving no trace), and moved into the body. This is the risk that the MO assesses - and something that is outside of the domain of the surgeon. So you can't compare what the surgeon is telling you and what the MO is telling you and assume that one is correct and the other is wrong - these two doctors have different areas of focus and they are telling you two completely different things. They can both be correct.

In another thread, you posted this:

"I met the oncologist today and have Stage 1A, Luminal B ER+, PR-, HER2+ cancer. He wants to do 12 weeks Paclitaxel and 17 cycles of Trastuzumab. He said this is preventative in case there are cells floating around, the side effects are brutal the first being heart damage. He also said 75% of woman with my diagnosis have no further disease in the next 10 years. He wants to do the treatment in case I'm one of the 25% that has reoccurrence. I'm extremely sensitive to medications, I couldn't take the pains meds they gave me after surgery so I took Tylenol and it worked. My fear is I will have terrible side effects to the chemo and it will do nothing in the long run. The onco could not tell me what happened to the 75% who didn't take therapy. If any of you have knowledge or experience I'd love to hear it"

First, the MO did not say that 75% didn't take the therapy. With a diagnosis similar to yours, almost everyone does take the therapy.

What I believe the MO was telling you is that with a diagnosis like yours, with no treatment (other than surgery) 25% of women will experience a metastatic (i.e. distant, in the body) recurrence within 10 years. Your cancer is HER2+ and PR-, and both of those factors are associated with aggressiveness, which means that the risk that some cancer cells might have shed into your body is significant, hence the 25% metastatic recurrence risk.

The good news is that the treatments available for HER2+ breast cancer are among the most effective treatments available. As a result, whereas in the past patients with HER2+ breast cancers had the worst prognosis, today, with these treatments, they have possibly the best prognosis. But having the treatments is key.

I can only imagine that after thinking that you had DCIS, finding out that you have a small but very aggressive HER2+ invasive cancer is a huge shock. But please don't let the shock keep you away from treatments that could very well be live saving. To make your treatment decision, don't just look at the side effects of chemo. That's only half the equation. What you need to understand from your MO is if your risk of a metastatic recurrence is 25% at 10 years with no treatment, what would your metastatic risk be if you follow the treatment regimen that he recommends? Certainly these treatments have side effects and present some health risks, but those risks need to weighed against the benefit that you will get from the treatment, in terms of how much they reduce your metastatic risk.

I hope this makes sense. And good luck with your discussions with your doctors. I hope you get the information you need to make the right decision for your overall health.

Kjl_hammie99 - I have a diagnosis similar to yours. I did the Taxol/Herceptin for 12 weeks and I am now getting Herceptin every 3 weeks. Yes, I had/am having side effects from both of those drugs but they were/are manageable. I had a lumpectomy and radiation therapy also, which you might not have to have with a mastectomy. Please take to heart what Beesie wrote because HER+ is aggressive and there are good and effective treatments for it

Hi. You are not alone. My diagnosis is different but we have some similarities. They told me my chance of recurrence within 10 years with treatment was 18%. Without treatment 25%.

At first I did not think of not doing chemo.

After one round of dose dense AC I called it quits.

It was not an easy or perfect decision.

Rgmcmanus, I am surprised that they did an Oncotype on a 2mm tumor. I had a satellite tumor of 2mm and they couldn't really tell me anything about it since it was so tiny. Also, I am assuming that you are ER+. If so, your chances of recurrence do not really lessen with time. I have found that the closer I get to five years since diagnosis, the more worried I am about recurrence

Rgmcmanus

I hardly post much, except for my thread where my fellow 2017 treatment crew hangs out. However, I just celebrated by three-years cancer-free milestone. I am reflecting on this, and scanned these boards this morning.

Of course, the decision to do chemo is not easy. However, looking for others who have opted out of (or in to) might not be the most relevant input for your decision. You will find people on both sides, with very strong, personal rationales.

I didn't want to do chemo and, as someone else indicated, AC is hard. The first two FACs made me want to quit, but I persisted with the addition of some newer med. I did three months of Taxol and then 4 rounds on FAC. I did it because, although there is always the risk of recurrence, I didn't consider it a total crap shoot. I define risk is something that can be calculated based on empirical data (which is why the oncotype score is useful, for example). Random chance is just that: a crap shoot. My oncotype score risk was very high. So, I did what I felt I needed to do, in order to help me to achieve my goal: staying alive for a long time.

These days, we have data that allows us to understand and assess how much risk we are willing to accept--both for treatment and the potential for side effects.

I was diagnosed at 50. Young-ish (at least in my mind). I want to live a long and good life. I knew that if I had a recurrence, even 10 years or more out, I would regret NOT doing what we know is helpful to prevent it. If I really were prepared to accept moving toward Stage 4 earlier, as a potential consequence for choosing not to do chemo and avoiding all side effects, then perhaps I would have skipped chemo. It is no cakewalk! But, I really couldn't get there, thinking about that possibility.

Someone here said that they skipped chemo, and they have no regrets. That is really what matters most. We all have different levels of risk tolerance. We just need to be sure that we are in a position to say that, come what may, we have no regrets about our own choices. We need to have peace about our choices, down the line.

Three years out, I am back at work, happily teaching and living a nice life. Do I have side effects from chemo? Yes. I am permanently bald, and I didn't expect that. It was hard to deal with but, honestly, like the other poster said, I have no regrets about my choice. My objective was to stay alive and live a good life for as long as possible. I got what I wanted. Permanent baldness was a low risk, so I took it, and I wound up on the wrong side of the curve. It happens. It was not a crap shoot, but a low risk occurrence that became a reality. It happens.

But, again, do I wish that I have never done chemo? Do I have regrets? Nope. So very, very happy to look good and feel good on my third-year "cancer-versary!" Still cancer-free...and feeling good that there is nothing more that I could do to prevent recurrence. It if happens, then it happens. I've done my best and continue to do so.

Think hard about what you would and would not regret, and then make the call about chemo, based on the data about risk and your individual tolerance to accept risk.

Best to you!

Has anyone that opted out of chemo experience a feeling of just being tolerated by their MO and radiologist? I had a MO appointment to follow-up my blood work and AI last week and I couldn't believe the coolness of my doctors reception. She was evasive and just sat with a smile plastered on her face. I changed from Anastrozole to Exemestane in January due to extreme pain and stiffness - headaches and dizziness. Well the Exemestane was the same with additional dizziness and heart palpitations (this was new to me). When I made the request by phone for the AI change (in Dec) her nurse said "they all all the same" about three times. So I asked if I should get back into more yoga/water exercise etc. That was all I could think to do ---improve my muscle tone? She smiled and nodded. I said I didn't want the additional dizziness and heart racing added to the back/hip pain sweating profusely/ and headaches. So back to the anastrozole is all I can think to do. I then asked how ER positive I am because my MS was trying to get me to change my mind and agree to chemo with the argument that I have "very low ER and that would be triple negative". So how effective is the AI? She said the estrogen level in your tumor is not the same as in your body. So I do benefit from AI. She didn't say how much of a benefit.

I do have degenerative disc problems in my neck and spinal stenosis. I'm 5'5 118 and don't appear to be handicapped and look healthy as can be. I also told her that the AI seems to instigate the pre-existing problems. She agreed.

Also my mammo schedule will be yearly 3D starting in September for both breasts. I always had a ultrasound and mammo prior to this breast cancer and told her so. She asked why? I said because I have dense breast. She said your insurance won't pay for that. I told they will cover (I called and checked) w/prior authorization. So I have low paying Obamacare and that seems to be undesirable. End of visit.

Anyone else get this kind of treatment.?? I will appreciate any feedback as I am furious about this.

Rgmcmanus Thanks for responding. I too asked for a RSPC at an earlier appointment and was told they don't use that. They rely on the Onco-DX. So I asked what if the test wasn't available and she had to recommend treatment based on her knowledge as a oncologist what would it be? She never did answer me.

I hope you get answers with the RSPC request --please post when you can. I'm interested in knowing if my MO is just being difficult because of my chemo decision. Also received a cold shoulder from the radiologist.

Thanks for posting!

doubting, you should be able to get a copy of your pathology report(s) to find out more about your tumor, estrogen receptors, etc.. It sounds like you are not on the same page with your MO. If you aren't comfortable with the information, or lack of, may you should get a second opinion. Patients have to make some tough decisions and rely heavily on their medical team to provide the information needed to make the best decisions. Do your due diligence, question until you get answers. Best wishes:).

My score and background are similar to yours. My MO showed me a chart that indicated my 10 year recurrence rate w/AC was 17% and then showed me the portion that my 10 year recurrence rate w/out AC was 15%. For the 2% difference, I elected to not put myself through it. Had I not been provided the comparison, I probably would have elected to do it (based on 17%).