Opinions

[PinkGirl]

When you talk about getting second and third opinions, are you
talking about newly diagnosed people? I've noticed that there are
many, many of us who received basically the same treatments....
AC, a Taxane, a year of Herceptin, radiation and then a medication
for the estrogen receptor +'s. Why would we seek a second opinion if the treatment is somewhat standard? I know there are exceptions but an awful lot of us had quite similar treatments.

I also wonder about the name-dropping of the well known oncologists at places like Dana Farber, Sloan Kettering, John Hopkins, MD Anderson etc. Do these doctors keep everything a secret? Do they share with other "common" oncologists? There are lots of posts about having an oncologist who is considered to be one of the best in some area of the country. It makes me wonder how I ended up getting the same treatments while living amongst the trees, bears and blueberries.

I think there might be a false sense of security that comes from seeing the big-name oncologists. If we all got a year of Herceptin, does it matter if we got it from Dennis Slamon or from Dr. Whoever?

Anyway, I'm a bit confused about the second and third opinions, but I understand wanting to have an oncologist who "feels right".

[Vi Schorpp]

Before I met with my oncologist I knew from my research that I would be on Adriamycin. I had opted for a mastectomy, but my case is a little different than yours because I did not get Herceptin (diagnosed 2003) and did not have radiation.

I feel no matter where you live, you will get a "standard" of care. There are some institutions and doctors doing "cutting edge" research, etc., but the established protocols are in place whether you live near where I live and have University Hospital or Cleveland Clinic to chose from, or a small town elsewhere.

My absolutely biggest decision was whether to have a lumpectomy or mastectomy, even with all the research out there.

You're right, I don't feel I was cheated by not being seen by a well-known oncologist in the national arena, but was reassured that I was being taken care of by one well-known in the Clinic setting.

[Jean]

Hi Pinkgirl,
To respond to your question it depends. It is not always cut and dry. For instance....you have an early stage dx, your tumor is under 1CM...and /or/very small, node status neg. this could spur an onc.
to consider no/chemo (now hopefully ) standard of care
for ALL herceptin positive women herceptin is given, but remember not so long ago this was not the case.

Or, your tumor is 2CM and one surgeon may advise
lumpectomy/while another may advise mastectomy.
While of late the treatments are becoming standard,
but there are still many onc. who use A/C as standard,
when there is TCH to avoid any heart issues.

Just recently (last week) a collegue of mine has a sister who was recently dx. with bc. (she is not her2) but neg.
Her tumor was 2CM with clean margins. The onc. she saw said A/C - at the BCS in Dec. there were many studies on how A/C truly benefits the her2 + patients.
I took her to my onc. for a second opinion just last Thur.
who is first ordering an Oncotype test and if it comes back high, will be using TC chemo.

Also, some onc. maybe involved in a trial that may offer
a better resolve for treatment. It is my opinion that we as women shop hard just for shoes, heck when it comes to our lives....we need to be so careful who we trust our
surgery, treatment and care to.

Jean

[harrie]

PinkGirl, I think getting another opinion is most commonly, but not exclusively, for those receiving new or updated diagnosis and where treatment options are being evaluated and there is not necessarily just one option to consider. Fortunately, with advances in cancer research, there are more options available.
I think espeically with early stage tumors, there are variety of good choices to consider. Many times the decision is based on how aggressive do you want to get without an "overkill". That is when getting another opinion with an expert in your tumor's chemistry becomes vary valuable. It really brings that much more confidence into heading into the treatment of choice.
I have personally come to the belief that in many situations with the management of cancer, it is not always a black and white science but many "good" shades of grey.

[jones7676]

I do not always need another opinion...but sometimes I do. I've went to Northwestern in Chicago which certainly isn't as well known as many of the "big names".....but they have helped me tremondously from time to time. I've also noticed that my oncologist - Dr. Gradisher is one of the consultants for a national periodical. I do my homework and often ask for other opinions when necessary. My oncologist has called him for his opinion before. That is why I like him. He isn't afraid to ask for other's opinions and send down test results etc.

[Becky]

Hi Pink

When I had chemo, Stage 2 women in the northeast USA got 4 AC and then 4 taxol. I had 3 opinions and all were the same. That said, I got to meet 3 oncologists too and got to see who I might like the best. Unfortunately, the one I would like the best was a 60 mile hike versus getting the same chemo locally and making an onc mistake. None-the-less, go on realage.com, cancer is one disease they absolutely advise a second opinion for and I recommend that for surgery, chemo and rads. It is your life - your life and you only get one - Every life threatening disease deserves the second opinion gig. The music's not great but the melody goes on forever.

[Paris]

I think it boils down to what's comfortable for you. I got two opinions regarding chemo; one from my local cancer hospital and the second from leading cancer center. Both had the same recommendation so I went to the local onc. for treatment. That being said, I wound up leaving onc. at the local hospital because he had no answers when it came to the side effects I was experiencing while on chemo and herceptin (turned out to be cardiomyopathy). I went back to onc. at leading cancer center and have been happy ever since.

At least if you get more than one opinion you have a fall back doctor if things don't work out with the first.

[Becky]

Absolutely Paris

It was one of my second opinion oncs at Sloane Kettering that helped me get my late Herceptin. She is always available if I need her even though I switched to a local genius.

[Joan M]

On "name-dropping."

I think there's some confusion.

Sometimes it boils down to whether you have advanced or early stage breast cancer, as it seems that most of the "name-dropping" that goes on here is done by women who have a disease of which there is now no cure.

The average life span of a woman with metastatic breast cancer is 2.5 years the last time I looked, so that gives me about 15 months to live.

Hate to be blunt but it's not a pretty picture.

However, most of the woman with advanced breast cancer on this board have been beating those odds, and I hope to do the same.

To that end, I plan to be hypervigilant, and try to go when possible to the places that see the most cancer patients, do a lot of their own research and have doctors who are top in the field of cancer. So I don't consider it name-dropping when board members mention top doctors and cancer programs but a lot of knowledgeable cancer survivors sharing information with me.

[Louise O'Brien]

Hi Pink Girl...

I think because both of us come from Ontario - and were treated at major regional cancer centers, we come from a place where the treatment is standardized. The fact that we're on OHIP is also a factor. I know too that much of the direction for treatment comes from Canada's leading cancer center, Princess Margaret Hospital in Toronto. And that Herceptin has been a standard for treatment of HER2 positive patients since 2005.

I never minded that standardized approach because of my experience with the way my own treatment changed, depending on recent developments or research.

(I also agree with Joan - that there may be more standardization with early stage treatments.) So while you and I could ask for second opinions, we'd get the same response. I suspect it could be different for later stage patients.

I was orginally scheduled for eight rounds of chemo (forget the combinations) but literally at the last minute this was changed to six rounds of FEC/Taxotere followed by Herceptin. This was as a result of a major study out of San Diego pointing to the success of this protocol and the belief that taxotere was slightly easier to tolerate with less neuropathy.

I was happy to hear there was that much consultation going on across borders and that treatment appeared to respond to the latest research. In fact my oncologist is one of Canada's leading researchers on HER2 and has travelled to the states many times to give papers.

And when I went on taxotere, the nurses showed up with iced mittens for my hands and boots for my feet to ward off neuropathy because "they just started doing this at Princess Margaret and they've had really good results." (I always asked for a second set when the first ones warmed up and I never developed neuropathy in my fingers or toes.)

I wonder if the treatment now is the same as it was nearly two years ago when I began chemo, or if it's shifted once again.

So I never felt that our treatment was dragging behind. My oncologist is now working on a paper on early stage HER2 patients (he says I'm in it as a statistic) but he says it will be a few years before its out.

Good or bad - he told me we're the newbies when it comes to research. There just isn't enough data over a long enough period of time to tell us how we're going to do.

But he said his observations are anecdotal - without anything solid to back it up. Both he and a colleague have noticed that they're not seeing many - if any - early stage HER2 patients returning. In his words, he told a colleague "you know... we're just not seeing them back here."

I know it's anecdotal - but hey - it's good enough for me.

[Ceesun]

Hey Pinkster, You always put things so well. I have had the same thoughts. I pretty much went with my oncologist who follows the approach of the University of Michigan cancer center which has a division at our local hospital. I realize now I could have gotten a 2nd opinion at Karmanos (quite big in Michigan) but my care seemed pretty much defined for me either way.....I wonder about this her2 vaccine some people have had...I wonder if I could qualify for that or is it experimental. Take care, Ceesun

[ElaineM]

This is a problem sometimes. I think it is up to us to keep pushing until we get second and even third opinions. We need to be proactive and assertive. Most of the time docs want to do the "standard" care backed up by some research, but if we read about something else we want to know about it is our right to find a way to get the information we want. It is also our right to refuse the "standard" care, but we must also be willing to take responsibility for our decisions. It is a tough call.

[dlaxague]

Hi Pinkgirl and all,

Great question.

I didn't get a second opinion. I could talk to my smalltown onc, I liked his blunt and quirky style (not all do - it's a personality not competence thing). Plus I was in an NSABP clinical trial so that increased my confidence in my treatment plan (in 2001, it was the standard - A/C then Taxol). The hardest blow for me was not getting the Herceptin in that trial, which a second opinion would not have helped. Winning the California lottery to pay for the Herceptin outside of trial, that might have helped. But then again, I'm still here. Crap shoot!

Still, my first recommendation to almost every woman who asks my opinion is that she does get a second opinion, if possible from a Comprehensive Cancer Center. I don't think that the second opinion will be different in most cases, but in a few it may be, and in those few it may make a difference. Plus, a second opinion gives peace of mind, no matter what the ultimate outcome. It gives the comfort of knowing that a person did the best that they could, at the time they were making these decisions. It minimizes that painful coulda-woulda-shoulda questioning if something happens later.

As for whether a second opinion is more important for primary or mets diagnosis - I have to disagree with those who are saying it's more important for a stage IV diagnosis. I think that it's important for everyone. For those who don't have garden-variety primary diagnoses, that second opinion could make the difference between recurrence or not (life or death).

For a stage IV diagnosis, the "best" plan is often less clear, and the opinions about treatment are likely to be different for opinion 2 right on thru, say, 5. But it never hurts to have as much information as one can gather, before making a decision. For body mets, one style of thinking is that it's probably less about which particular treatment comes first and more a case of having a toolbox-full (of a fairly-finite number of options), and so it makes sense to use the tools in a judicious manner so as to get the longest run possible out of each one of them, beginning with hormonals and Herceptin or Tykerb if applicable. Then there's the other school of hit-mets-hard-initially thought - but that uses up options (and often, bone marrow function) more quickly. It's more a matter of personal style than of a clear "best practice". It does seem to me that brain mets are in a different category and I always strongly encourage women to get at least a 2nd expert opinion before deciding what to do in that instance.

Each time a new study is done, especially when there are subgroups included in the trial design, we come closer to tailoring treatment and getting even better responses - but there's a lot to learn yet

Debbie Laxague

[chrisy]

Hi Pink,
Great question, as usual!

Speaking as someone who's first real interaction with medical oncologists came after a stage IV diagnosis, I'll share my thoughts.

I agree, everyone will probably get the same "standard of care" regardless of who they see. My case was a bit complicated, and I was lucky to have my REALLY GREAT local oncologist refer me to my other REALLY GREAT (and big name) oncologist.

Initially, the value for me was twofold: I got to have a pair of great doctors confirm that, at that time, the best treatment was TCH. This was the proven approach and the standard of care in my situation. So I felt very confident in that "choice". I named the 2 doctors "Dr. cautiously optimistic" and "Dr. hope" because although both doctors recommended the same treatment, Dr. Hope was the first one who actually made me feel hopeful - coming from more of a research perspective - that I might have a lot more time than the statistics would suggest. In fact, my local oncologist(s) rely on this other doctor to do the same - keep them apprised of the early info from the research side.

So, I got a very effective treatment that put me in remission and kept me there for 2 1/2 years. I loved my local oncologist, and still do.

WHEN the cancer recurred, the advantage to me of having a relationship with the "big name" doctor was that I had immediate access (and actually already had an appointment) to some promising clinical trials - first a pairing of Avastin/Tykerb which kept me stable for 8 months, then the DM1 trial. I believe having the 2 oncologists allowed me to be in the "right place at the right time" when I needed it.

I do occasionally "name drop", not to offend or impress anyone, but because I believe that the big name doctors bring a different perspective as they tend to be those who are on the cutting edge of research. They're not necessarly better doctors, their orientation is just different - they are researchers first and clinicians second.

But as for the question "we all get the same standard of care treatment", most of the time that's true. As Joan and Jean have said, it is more critical with advanced stage or more complex situations.

[PinkGirl]

Thank you all for your thoughtful replies. I would have had to leave
the province, country or maybe the continent to get a second opinion
that differed from the first one. I believe now that this would be
much more important if I were stage 4.

I didn't mean "name-dropping" like people were bragging. I was
thinking more of feeling confident if the information came from
a "big name" oncologist rather than your garden variety one when
the information was the same.

I read something somewhere about Dr. Slamon and how many
women want to meet with him and discuss how long they should
stay on Herceptin. Dr. Slamon said that no one knows and that it
was the bio-techs who chose the one year. So sometimes when I
read the posts about the big name cancer centres and big name
oncologists, I remember that there is so much about cancer that
is still a mystery and that even the "big guns" don't have all the
answers.

[chrisy]

Right-O, Pink Girl.

I sure WISH they had more answers...but I guess for now I have to settle for believing they are working very very hard to find them...