Second Opinions

lightsteve · 11-13-2006, 01:55 PM

Greetings:

My wife has stage IV BC. She was initially diagnosed and treated for Stage II in 2003. In June of this year she was diagnosed with mets to lung and bones. Since that time she has been on Taxol and herceptin. She is with the oncologist who did her first round of tx, but I think it would be a good time to have some else review her case.

i am interested in hearing other people's experiences with second opinions. How you decided when to get one (or not to get one), how you selected a doc to do the review, did it have impact on your tx, did it have impact on your relationship with your onc.

As I read materials on this site and elsewhere I believe the onc is doing a good job, but a new perspective won't hurt. I wonder about looking to one of the big name cancer centers, Dana Farber and the NYC hospitals are within reach for us.

Thanks, i look forward to your comments.

Steve

Celeste · 11-13-2006, 02:21 PM

I got a second opinion at MD Anderson in 2002 when I was first diagnosed. My oncologist is great and he arranged for my second opionion which is probably unusual as oncologists go. I have been there on 3 occasions for consultation only ---no treatments there as I wanted to stay at home in Austin. I did have a slight change in my treatment protocol based on MDAnderson docs opinion the first time around. I didn't did not take his recommendation on having a hip replacement for my bone mets. My doctors team here said that was not necessary and I could have a much less radical surgery on hip which would only require a pin and a couple of screws and the recovery was much shorter than with a replacement.

With my reoccurence last year, I asked my doctor to consult via the telephone with my MD Anderson doctor to decide on a course of treatment. Which he did. I really did not want to go there and jump through all their hoops again. I just wanted to get into treatment ASAP.

All in all, I have found you just have to go with your gut instinct. Everybody is different. You and your wife will know what feels right for you.

Hope this helps. Best of luck.
Celeste

PS. FYI _---MD Anderson will no longer do 2nd opinions for new breast cancer patients. If you go there you must commit to having your treatment and become their patient.

Becky · 11-13-2006, 03:16 PM

Dear Steve,

If you are not going to a large teaching or research facility (as the ones you mentioned), it is always a good idea to get a second opinion from them. I went to a well known but local cancer center (where I did end up getting treatment) but went to Sloan Kettering for a second opinion. When there was an opinion difference in the reading of my slides, I sent the slides for a third opinion at Johns Hopkins (their opinion was the same as Sloan Kettering) so that made me feel better.

I conferred with my Sloan Dr. from time to time, especially after the adjuvant results in regard to Herceptin came out in 2005.

What was your wife's first treatment and how many nodes were involved? Is she also ER/PR+?

We are always ready to help here.

Kind regards

Becky

Jade · 11-13-2006, 03:25 PM

My onc, reputed to be one of the best in Canada with international affiliations, sent me to the BC (British Columbia) Cancer Agency, also internationally recognized as a leader in cancer research/treatment, for a second opinion, without a word from me. He is amazing and a true professional. As a result my treatment was modified. It's wise to seek a second (and even third if need be) opinion and if the oncologist was in you or your wife's position I'm sure they would want to do the same. No doctor should take offence with a patient seeking a second opinion.
It's a crazy world we live in - we'll go and get three estimates to fix our roofs or paint our houses, but when it comes to our health we often don't even think to get a second opinion!
It's not easy .... all the best to you and your wife.

Jade

lightsteve · 11-13-2006, 04:05 PM

thanks for the responses. keep them coming!

Re status: ER-, PR-, 1/22 nodes positive (2003) but i guess that was the one that mattered.

saleboat · 11-13-2006, 06:35 PM

Hi Steve,

In my limited experience, most Oncs seem to encourage their patients to get second opinions-- I think that they know that it can bring the patient tremendous peace of mind, and most seem to welcome a fresh take on a patient's situation.

If you'd like to visit Sloan for a second opinion, there is a place called Miracle House which provides housing for patients (all types) that are visiting NYC for second opinions and treatment. You can learn more at http://miraclehouse.org/ I've never been there, but the rooms look nice-- Oprah had some of them redone for her show.

The other thing to consider re: a second opinion is that a big cancer center will likely have trials that aren't otherwise open to your wife. Even if they aren't appropriate at this time, you at least have started a dialogue and will always have the ability to touch base and see what fits as your circumstances change, or as new drugs become available.

I was treated at Sloan, and I did get a second opinion while I was in active treatment. It brought me a lot of peace of mind.

Good luck with everything.

Jen

momdeeco · 11-14-2006, 05:52 AM

I went for a 2nd opinion within the same group of oncologist.(Not recommended to seek opinion within the same group.) I thought I would benifit from Herceptin even though I was Sage I-node neg. Of course, he agreed with my oncologist -no Herceptin for node neg patients. I therefore went to the University of Chicago for a 3rd opinon and she said I would benefit with Herceptin. My oncologist back home agreed to give me Herceptin every 3 weeks for a yr after speaking with the doc from Chicago. I am so glad I went for a 3rd opinoin. Good luck with your decision.
Phil 4:13

Monica · 11-14-2006, 09:56 AM

Hi,
I went to three doctors to garner opinions during my first diagnosis in 2003. One at the NJ Cancer Institute, one at Sloan-Kettering in NYC, and one at a local practice where the oncologists were trained at Sloan-Kettering. All three oncologists gave different recommendations on my course of treatment. I was very frustrated! I learned one very important lesson - doctors are very biased (I don't believe this is conscious) by the their schools of training and the trials that they are currently supporting. That is, NJ cancer institute recommended I enter the herceptin/taxol trial - she was a researcher in that trial; Sloan-Kettering thought I should do the dose-dense trial - Sloan-Kettering initiated that treatment protocol. The other oncologist thought I should go the standard route - he didn't think herceptin would amount to much, but if I had to go on a trial - he suggested I try the dose dense. I think it's important to realize doctors are going to support what they know and understand, and it's critical for patients to research the issues themselves. Because of this board, I knew I wanted herceptin, and my oncologist at NJ Cancer Institute has been great.

Best,
Monica

rinaina · 11-14-2006, 10:25 AM

I received my second opinion from MD Anderson back when I was first diagnosed. It was the same as my oncologist that I use now. I am more at ease having done this. It never hurts to get second or even third opinions.

Joe · 11-14-2006, 11:39 AM

Steve,
Many doctors welcome second opinions.
When Christine was dx'ed in 1990, she had a second, third and forth opinion. Interestingly enough we chose the surgeon on the recommendation of an attorney whos firm defended physicians in malpractice suits. His wife also had bc and he polled his fellow attorneys as to the best available in New Jersey. Dr. Elise Santoro and Dr. Richards Michaelson at St Barnabas Medical Center in Livingston.

Regards
Joe

jessica · 11-14-2006, 01:55 PM

Just wanted to add my 2cents worth...
Most University/Teaching Facilities and the specialized Cancer Centers like MDA or MSK take a true interdisciplinary approach to treatment & patient care. Having ALL of your docs, under one roof, with equal access to films, consult notes, and access to EACH OTHER, without delay in communication, transfer of records, etc. is such a relief & so much less of a burden for patients & their care givers! These types or facilities will also have Tumor Board/Conference where all the different docs involved in your wife's care - clinical onc, surgical onc, radiation onc, etc,meet in joint conference to review the patient's dx, surgical/treatment history & make recommendations based on everyone's input.
I switched from a private Onc practice to a University Cancer Institute-running from one private consult to the next, often before they'd had a chance to talk to one another, trying to bring them up to speed, explain my dx, was SO EXHAUSTING & FRUSTRATING! In contrast, it is so reassuring to walk into a consult w/one doc & hear them say "I just spoke w/Dr...or I just looked at your scans w/the Radiologist..."

Stage IV disease is so complex, and we're all writing the rules as we go. Being at a LARGE facility isn't without it's own set of challenges, but overall, I believe, I KNOW, I'm in better hands.
Good luck to you~
Keep the Faith!

Shell · 11-15-2006, 07:55 AM

I've always gotten a second opinion when faced with something new, including initial diagnosis,and at reoccurrences. My onc is very understanding and knows it is done frequently. I am fortunate to be in Phila with great choices, but I have also consulted at Johns Hopkins, and I would go to other cities should the need arise.

When I wanted to be in a clinical trial not offiered in Phila or NJ or Del, I arranged to go to Hershey, where I was treated for 1 1/2 years - I'd send my onc my MRI reports, and I went in to see him once when we looking at potential progression, and he was happy to see me and examine me and discuss options with me.

I am now back treating with him again, and we have a great relationship.

Good luck. It does help to get a set of your records, office notes, etc as you go along, so it is not so overwhelming at the last minute. I keep a master set, and just make copies from there.

Regards,
Shell