ASCO & EVITI - Evidence Based Care

cb123 · April 2016

(I'd better preface this by saying that I am of the anti-chemo camp and that my opinion is clearly biased. There are some useful links and actual facts to be found here.)

Rather than having an Oncologist prescribe a course of treatment that may be influenced by any number of non patient personal medical factors, Evidence Based Treatment uses the specific patient's profile when choosing a course of action. I love this idea! Prove that I need it and I will take it.

I've been feeling like just so much cattle being pushed through the chute by my Mega Provider's Team. So, how to find the right course of medical action for me without much of the bias that is evident in the medical community?

I found this link, it's for doctors. One of the MOs on my insurance uses this company and it's product. Seems like a good idea to me.

EVITI - Non-biased Evidence-based

The ASCO's first recommendation for my type of cancer is: "Endocrine therapy is preferable to chemotherapy as first-line treatment for patients with ER-positive metastatic breast cancer unless improvement is medically necessary (e.g. immediately life-threatening disease)."

American Society of Clinical Oncology (ASCO)

ASCO Clinical Practice Guidelines

Cancer.net ASCO Recommendation

The MO that I was referred to by my surgeon, within 5 minutes, decided that I should have chemo. When I asked about hormonal treatments he flat out said no, not in my case. But I had already read the ASCO recommendation for "my case" and am well aware that "Hormonal therapy is considered the standard initial treatment for HER2-negative metastatic breast cancer that is also hormone receptor positive. However, chemotherapy may also be given. ASCO's specific recommendations on chemotherapy for metastatic breast cancer are listed below."

" •Generally, chemotherapy should continue until the disease worsens if a patient is not experiencing unmanageable side effects. At some point, chemotherapy may no longer be able to control the cancer's growth. When this happens, patients may choose to stop chemotherapy while continuing to receive palliative care."

There's more and the links I've provided will take you to the recommendations for my situation. They have other options for other situations.

I did a little further research into the MO and the Medical Practice he's associated with and came up with things I don't like about them both. I feel I'm not wrong in not following this doctor's orders for chemo and am fortunately headed to a different MO and a separate Medical Practice for a second opinion.

I also had the initial MO order additional tests that I've never had done, that are 100% pertinent to my situation and that he didn't think to order until I asked him to. I need evidence to get evidence based treatment.

I just refuse to endure chemotherapy continuing until the disease worsens. Not gonna cure me? Not gonna do it.

I'm just putting it out there. This information is useful to me and maybe you'll find something useful to you as well.

Best wishes,

cb

Admins - please move or delete at will if I'm in the wrong area.

Moderators · April 2016

Hi cb123,

Just so that we are all clear -- have you been diagnosed metastatic? Your diagnostic signature line says you've been diagnosed Stage IIIC, and the articles and recommendations you're referencing speak specifically to a Stage IV diagnosis. Just want to make sure we're not missing something before anyone weighs in with their thoughts/advice.

--The Mods

cb123 · April 2016

There is a tumor on one of my vertebrae the test results are not in yet.

Just go ahead and delete.

Moderators · April 2016

Cb, no need to delete, we just wanted to clarify.

We're sorry to hear about the tumor; we're sending all our positive thoughts that the test results come back with good results. Please keep us posted!

--The Mods

dlb823 · April 2016

cb123, I haven't read the links you posted yet, but a single possible metastatic lesion on a vertebrae, while certainly concerning, truly isn't a bad prognosis, as mets go. Also, you will find there are two schools of thought on treating a single met along with a first dx. The first would be to treat aggressively in the hopes that all or most of the bc would be obliterated and anything remaining could be well-controlled by hormonal meds. The second would be to treat only with hormonal meds (which can also be very powerful) from the get-go -- assuming you haven't started chemo yet.

I know it's hard to wrap your head around every possible option -- especially in the beginning, and given what could be a mets dx coming almost immediately on top of your initial dx. But I would strongly urge you to get more than one opinion, preferable including at least one NCI-designated cancer center, where they see the most bc, so will truly have the most experience with cases like yours on which to draw. In the end, the decision will always be yours, but your situation is not the exactly the same as someone dx'd with multiple mets, which is more often the case.

(((Hugs))) and hang in there. You are absolutely doing the best thing by educating yourself as you wait to get more info' and figure this out. Deanna

exbrnxgrl · April 2016

cb123,

Great post by Deanna. My situation is not identical to yours but has some parallels. I am not anti-chemo and would have no problem with it if and when I need it. I have a single met to my upper femur (biopsy confirmed), found shortly after my bmx and a surprise to all. Both my primary mo and second opinion mo, presented the pros and cons for chemo and AI tx. Additionally, rads to the femur was recommended to render it necrotic. My primary mo also provided me with research and studies on oligometastasis . Since I have never been of the more is better school of thought, I chose rads and AI's. That was almost five years ago and I have had no progression. A big difference between us, however, is that my bc is a very lazy grade 1, whereas yours appears to be grade 3. At this point in time, nothing can cure metastatic bc. All chemos, btw, are not the same. Some can be gentler and as individuals we all respond to them differently. For now, the AI's have been great and I am very fortunate, but if chemo is needed down the line and still gives me a decent QOL, I won't think twice. These are choices we all make and regardless of what doctors recommend, the ultimate decision is in our hands.

Tomboy · April 2016

exbrnxgrl, I wish I had been able to talk with you as soon as I was diagnosed. You say things so clearly, and I might have done things a little differently, and not allowed myself to be railroaded so quickly into what I did do.

cb123 · April 2016

Thanks Guys,

So far my research shows that the radiation + hormonal treatment will be more effective than the chemo. Just waiting on tests and results to confirm. There are so many tests still out there. The scariest for the are the blood tests and the MRI scans for spinal and brain mets. 20 cancerous of 27 auxiliary nodes biopsied is horrific to me. Then there's this whole lung thing. If we could just get the results, make the decision, have the treatment...I could go on with my life. I just don't want to begin treatment without all the necessary information. I doubt if someone like Jimmy Carter had to fight with his health care professionals to have a full workup prior to diagnosis and treatment plan.

Thanks again for sharing,

cb

funthing42 · April 2016

cb123

All thru my treatment years 2009-now x4 .

It would be the first time I challenged my Onc. with such anger I felt the need to apologize. The standard of care was followed so I'm good.

Well Im basically disappointed or should I be. I have just had yet another reccurrence in axilla nodes. No BC ever on this side until now.

Anyways they are pushing the standard of care crap again not a cure not a remission but my only option.

Imbrance and latzrole. Tough decisions. I wanted to thank you for posting this . You helped shed some light.

Big Hugs all!

ASCO & EVITI - Evidence Based Care

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