Why Medical Oncologists seem to differ in treatment approaches?
I was diagnosed as stage IV in Jan 2016 ER+/PR+/HER2-. I know treatments have evolved and continue to do so and we are all different. But I am confused to see how those with a similar diagnosis/characteristics as me seem to be on such a variety of treatment routes especially with hormonals. I started on Femara/IBRANCE, then Faslodex and now Affinitor/Aromosin. I see others that start with Faslodex for example and others that seem to go straight onto chemo even though it doesn't appear that they have extensive mets. I know we respond differently but am curious as to why there isn't a current standard of what's best to start with and what follows etc. Does anyone have any insight from their MOs? It seems like you may be on a different protocol depending on who you see.
Comments
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As my MO explained it, their job is part science, part art. In some cases, there are reasons for choosing one over another. In other cases, it may come down to what the MO is familiar with, what they prefer, random other justifications in their minds. Patient age, health, medical and life goals, work status and daily life requirements also factor in. My MO is thoughtful that I work and will typically recommend a chemo course that is a higher dose but more time in between so there is less disruption at work. Because I am relatively young and healthy, I can handle the higher doses. There is no fixed recipe for mets, fortunately and unfortunately.
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dorimak, when I was diagnosed with mbc, I, too, thought there was a set protocol that one followed, that everyone followed. I was surprised that numerous approaches could be used to treat me and the choices were mine, not dictated by the doctor! So I had the same question as you.
What I learned was medical schools in different parts of the country teach different methods of treatment. An oncologist’s approach may depend where they attended medical school, where they interned, where they previously worked and where they currently work
Then on top of that, oncologist may offer treatments based on their years of experience dealing with bc/mbc. You may have heard of some oncologists who behave as tho mbc is an automatic almost instant death sentence for everyone even tho a certain percentage of patients live years with it. Other oncs treat mbc aggressively because they believe that is most successful for longevity living with the disease. Some oncs have never seen longevity with mbc and don't believe it exists; some have seen it and know it is possible and they treat accordingly.
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I have been at MD Anderson since 11/15, and I know that on a couple of occasions, my MO has presented my case to a group (a tumor board?) for input and fresh perspective when the path forward wasn't straightforward. From the beginning, he let me know that there were options and discussed the pros and cons with me. But, I've now run out of standard protocols and am being vetted for a couple of clinical trials and that is an even twistier path!
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Hi everyone...this is exactly why I think its important to at least get a second opinion at a major university teaching hospital. Protocols are not all the same. IMO a small community hospital is just not the place to get one opinion. I also believe that where we are treated is a huge piece of the puzzle. Good luck to all navigating this complicated disease.
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You raise an interesting point and one I've puzzled on too. As a concrete for-instance, over on the Xeloda thread, people start at all kinds of different doses. You'd think there would be a standard dose, but the truth is the "FDA-approved' dose is too high. MOs know this but philosophically vary on what starting dose to use.
I agree with all the points above and would add that some MOs 'keep up' better than others.
There actually are recommendations from the NCCN on which treatments to use for different kinds of MBC. I don't think they specify what order to use them in and I'm too lazy to look it up. So that could be part of it. Sometimes the hospital has a protocol for treatments (mine does for Xeloda dose).
There's also the point that if you are looking at people's profiles, they may have started treatment before Ibrance came on the market! (That's me) Or they had taken Femara before diagnosis so they have to start with something else.
Sometimes the patient gets to decide which treatment next. It depends on your relationship with your MO. Regardless everyone should always ask their MO for their rationale behind what treatment they are recommending. (edited to add "oops that reads as preachy. I didn't mean it that way")
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There are also a few additional variables to consider. One is where we live. Many of the treatments in Canada differ from the US, to a large extent due to drug approvals. For instance, Faslodex is not approved under general health coverage here so it is often only prescribed if the patient has access to extended health (I suspect similar situations arise in the US depending on which health insurer the patient has).
In terms of starting with chemo, an MO may often start with a more aggressive treatment to deal with symptoms. As a example, my MO started me on Taxol as he was hoping it would beat back the plueral effusion. As it turned out, it wasn't particularly effective so we stopped after three treatments.
Beyond this, as JFL indicates, most MOs take into consideration your age and what they consider the options are for the best quality of life. My MO is a firm believer that the best medicine is maintaining as normal a life as possible. To that end, he leans towards treatments that will allow me to continue working full time, saving the more toxic treatments until later.
Pat
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Thank you all for your input. Helpful insight into all the variables. I got my diagnosis about a year after a divorce where our closest friends all couples completely distanced themselves and have no family in town, so I attend my appointments alone. I do ask a lot of questions but probably because of distress I don't take everything in. This is a good sanity check to see that there appears to be some rationale behind different treatment approaches.
It's encouraging to see so many who appear to be hanging in and doing well for a number of years. My original MO from 2001 was close to retirement when I got my IV diagnosis so he referred me to his colleague, a young magna cum laude Harvard educated and former fellow at MD Anderson (something he repeated multiple times in our first visit). When I asked him what inspired him to get into oncology, he told me he liked talking to patients about end of life. Needless to say I moved on to a different practice. I appreciate the wisdom of the women (and men) on this board.
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My MO and I discuss different treatments all the time, usually because something I read sparks my interest. He's taken my case to the tumor board and I've had second (and third) opinions at major hospitals while still be treated at my local hospital by a MO that I know and trust. What it comes down to, for me, is I'm stable and my MO believes in "keeping tools in the tool box" until they are needed. So my treatments have only been hormonals, aside from surgery to remove the met in my brain and GammaKnife radiation to the tumor bed after. I feel good. My scans are NED. February will mark 4 years since my solitary brain met diagnosis.
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Hi Everyone,
This may not relate directly to this thread, but it is a question that has been nagging me for a while. I was dx de novo Stage IV in February 2016. I had mets to liver, spine, ribs, femur and skull. I had radiation immediately and then six months of Taxol along with Herceptin and Perjeta. I currently receive infusions of Herpeta/Perjeta every three weeks and have been on Femara for about two years.So far, so good as I have been stable since September of 2016.
My question is this, how often do your oncs run the CA-15-3 and the Carcinoembryonic antigen (CEA) tumor marker blood tests? I have not had them for one year now. I have scans every six months. I always wonder about the time in-between the scans and whether something should be done in the interim just to make sure everything is OK.
If anyone could share their experience, I would appreciate it. I haven't asked my onc about this. It seems whenever we have a chance to talk I forgot to ask this.
Thanks much,
Nancy
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nowaldron-I have mine done every month CA15-3. I was also de novo to bones. Even when I was stable for 6 months on Letrozole alone I had them done monthly. Just another piece to the puzzle and for me they have been accurate.
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nowaldron - my prior MO ran CA 29-29 every month. Mine ran like a point our two above normal but would go up a point and then down the next month. He said he looked for trends. I switched clinics and this MO says she doesn't put a lot of weight on them although does run CA27-29 along with another that I can't recall every few months usually the month -I'm due a scan. MOs seem to differ in what they do and for patients they don't seem reliable. Mine have never gone up much even though I have active mets and I've seen other patients on these boards that they're a good indicator for them. Also had last MO tell me that they had a patient that suddenly jumped into the thousands. She was a runner and had sprained her ankle and the inflammation caused the spike. Once the sprain healed she was back to normal (and she was a stage iv patient). Moral of the story is sounds like each patient and each MO is unique.
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Goodie16
What eventually worked for your brain mets? Just curious.
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In addition to all of the above, I recently read an article that said single any /or childless people are treated less aggressively, apparently because they have less to live for! I had never thought about it that way and found it to be very alarming.
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HLB, gosh that article you read is very disturbing on so many levels. I do have an adult child but am divorced, but I would like to think that my life has value to my extended family and friends.
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Dorimak I was disturbed too when I read it. Someone shared it on fb. Of course they were being general/statistical, but apparently some look at it like you won't have the support needed to tolerate harsher treatment, might not have as much will to live, stuff like that. I am single and never had kids but to my parents I will always be a kid and they have a much harder time with me having this cancer than I do.
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I think they differ based on their own experiences with patients.
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Yeah, that kind of discrimination against single people and/or ones who do not have children is unethical. I would have to consider the source of the article and personally, I don’t believe it. As doctors are highly educated, they know that all people have vast amounts of worth beyond being a spouse or parent.
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HLB, it could be a chicken and egg syndrome. In other words, it's possible that single people more easily choose not to "do everything" where patients with children do. So it may have to do with patient choices and not oncologist choices.
As an anecdote, my cousin (who had four kids and brain mets) was having intrathecal chemo a week before she died. I promise I'm not going to be doing that.
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HLB, that is a disturbing article! It sounds like the author has some major issues but suspect (or hope!) that not all oncologists view the world like that. That type of bias does exist, sadly - and is a huge pet peeve of mine - but I would hope it is not across the board. I suspect the same people who do not view women as equal to men have biases about marriage and motherhood and would be willing to wager the author is not a woman. I am also curious whether the author devalues single, childless men in the same way or do those men have value in the author's mind in other ways - such as their success at work . . . . On a more positive note, one of my MO's favorite BC patients is single and childless. He has so much respect for her and treats her more like a colleague in some ways than a patient.
When I was younger, at a previous job, my boss would always make statements about how I could work late because I didn't have a family to go home to (unlike the rest of the department).Made me irate. Everyone deserves a life outside of work and everyone deserves a fighting chance (if they want one) with metastatic BC.
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hhfp, I had a solitary brain met. It was removed via craniotomy and the tumor bed was treated with GammaKnife 1 month later. I continue to take my AI.
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