Selecting Your Cancer Medical Team – Priceless

Quite often I get emails asking my opinion about Oncologists or Surgeons.  Even though the patient has a gut feeling the doctor “isn’t the match for me” or “there’s just something I can’t put my finger on” or “I want someone who gives me more hope,” the patient still feels hesitant to look elsewhere or get a second opinion.   After cancer diagnosis, your head is reeling, your life is turned upside down, but remember, your doctor works for you!!  You, or your insurance carrier, are paying him or her for their services!

The  advice I give is this:  Go to the best doctors now or at the very least, get a second opinion from the best.  Your treatment should be the latest and the best.  Your life depends upon it whether you are Stage 0 or Stage 4. If you do not, you may end up there anyway but in much more dire circumstances. There are fabulous Oncologists and Surgeons in small towns and small hospitals as well as in the largest and best cancer hospitals.  The important part is to FIND THEM!

For example, it is in your best interest to find a BREAST surgeon if you have Breast Cancer, not a General Surgeon to do a Mastectomy or Lumpectomy.  Survival rates are higher when a Breast Surgeon does your surgery.   Johns Hopkins Cancer Center explains the reason for this far better than I can:

http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/breast_surgical_oncology/

The benefit of some of the large top cancer hospitals is that most of them use a team approach.  At the cancer center where I received treatment, University of Michigan,  and at most large cancer centers, there is a Multidisciplinary Tumor Board that meets and discusses every single patient that walks through the door diagnosed with cancer.  Not just ONE CANCER EXPERT  makes the decision, but at least TWENTY-FOUR CANCER EXPERTS collectively decide a patient’s course of treatment.  When I knew that many experts were charting my course of treatment, the burden was off my shoulders!  My trust level increased tremendously.

Perhaps a woman is Stage 1 and is on the fence about whether she should receive Chemotherapy.  Having dozens of cancer experts weigh in is invaluable not only because she will have the right treatment for her, but later she will not have regrets.   My sister’s close friend, Cheryl, was a woman like this.  She initially  she was Stage 1, but then had a few nodes involved, which moved her to Stage 2.  However, her local hospital said because she was in her 60s no Chemotherapy was necessary.  Cheryl has worked in the medical field her entire life and did not trust that opinion for her.  She flew to Houston to M. D. Anderson, the Number One cancer center in the USA, to get a second opinion.  Two of Cheryl’s three children’s lives were saved at M. D. Anderson as both had rare cancers in their 20s when they were given little to no hope locally.  Her past experience taught Cheryl to get to the best right away!  M. D. Anderson recommended Chemotherapy which Cheryl did.  Cheryl has no regrets as she knows she got the best care for her.

Not all of us can travel to M. D. Anderson.  But certainly it could not hurt to travel a few hours or a day’s drive to get a second opinion that could save your life.  Often cancer patients give more time to researching for a new car than they do for an Oncologist and Surgeon.  Please do not be that patient!

At larger cancer centers,  Oncologists only deal with their particular expertise of cancer.  A Breast Oncologist only deals with cancers of the breast and their next patient is not a prostate cancer patient.  Also, Clinical Trials are also more readily available at many of the larger cancer centers.  This is especially important because once again, it may save your life.

We all know cancer is expensive, even if you have the best insurance.  Often people hesitate to go to major hospitals because they question whether their insurance is accepted.  The benefit of large cancer hospitals is they have a lot of clout and will fight for your insurance carrier to cover you at their facility.  Initially, I was rejected by my insurance company and was told my major cancer center was Out of Network.  But with the weight of a big cancer hospital behind me, they were the ones who talked with my insurance company.  Next thing I knew my insurance company  changed their mind to In Network and covered all of my treatment.

Here is a list of the 2012-13 Top Oncology Hospitals in the USA by U.S .News and World Report which is well-respected.  If you live outside of the USA, do your research in your country!  It is so important!

http://health.usnews.com/best-hospitals/rankings/cancer

A woman recently wrote this sad plea on a Breast Cancer Discussion Board one month before her death.

“I am looking for a treatment center that someone can give me personal recommendations for that facility. I am in (her location) and do not have the confidence in my oncologist after a couple of  incidences. My recurrence to stage IV was within the past month. I have had one treatment of Doxil. We are having trouble getting my platelets up so I can have treatments but my gut feeling is to go somewhere else or I will die.”

I had communicated with this woman in the past.  An awful thing had happened to her when she was GIVEN THE TOTALLY WRONG CHEMO DRUG at one of her infusions.  Obviously, that should not happen.  Within a year after treatment, she progressed to Stage IV.  This woman’s instincts were correct.  She did die and quickly.  When the wrong chemo drug was administered to her in her Oncologist’s office, she gave the Oncologist the benefit of the doubt.  Perhaps this story could have  a different outcome.

Please follow your instincts when it comes to your Medical Team.  And it never hurts to have that second or third opinion.

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6 comments

  1. This is a great post, very helpful for anyone newly diagnosed. As a breast cancer survivor, I echo your sentiments about finding the best care you possibly can in your area, you’re absolutely right, there are a lot of good oncologists and breast cancer specialists in pretty much every regional hospital with the prevalence of cancer in our current society. AND, I echo your reco to get a breast surgeon, not a GP. Thanks for sharing this with others.

  2. I started my journey in breast cancer at Virginia Mason Medical Center in downtown Seattle. They have a team approach to cancer treatment, wherein every specialists meets with the patient on the same day to talk about what the plan of attack will be. We also had an appointment with Seattle Cancer Care Alliance scheduled for about three weeks later, which was the soonest I could get in to see the experts there. I was anxious for information, so I continued on with everything Virginia Mason planned until I could get to SCCA. We had all of the diagnostics – PET scan, bone scan, further biopsies of one of my lymph nodes – done at Virginia Mason. They moved swiftly and with determination. I went forward with the initial consult with the Virginia Mason team. We met first with the medical oncologist, who described my tumor as no more than two centimeters, based on the initial report from the pathology team. She got a little more health history from me, and we were talking a lumpectomy, and a Stage 2a diagnosis. Great. Everyone’s happy. But my husband and I are still worried because my tumor doesn’t FEEL like it’s only 2 centimeters. It feels like it’s the size of a grapefruit. But we wait to see what everyone else says after they examine me. After we meet with the medical oncologist, the whole team meets to talk about the scans and the additional information gleaned out of the preliminary consultation with the oncologist. She met with the other specialists – the surgeon, the radiation oncologist, and another pathologist. Then the radiation oncologist comes in and the story changes. My tumor is WAY larger than 2 centimeters, they can’t tell me how big until they take it out. This means mastectomy. This is devastating to me. I’m so focused on losing my breast I can’t even think about why the story changed between meeting with the medical oncologist, and meeting with the radiation oncologist. But my husband, the calm one at this point, sees broken process. Why did the radiation oncologist talk to me about tumor size, stage 2, and lumpectomy, before the whole team gathered to look at all of my data? Why did we get into specifics at all before they all came to a consensus? The surgeon told us they had to have a second pathologist look at my films, and that statement tells me that they could see the 2cm written in the report was obviously inaccurate, especially after the other doctors examined me.

    We got to the right answer in the end, and no one lied to me, but that “bait and switch” experience was one of the deciding factors in my following through with the Seattle Cancer Care consultation. And I’ve never regretted that decision. Virginia Mason moved quickly getting all of the tests and diagnostics done in about two weeks flat, and handed them off quickly when SCCA requested them. We were able to walk in to Seattle Cancer Care with a LOT more information than anyone would have expected at an initial consultation. The whole medical team was visibly impressed with how quickly Virginia Mason got things done for me once my cancer was diagnosed. However, we noticed a difference immediately in SCCA’s process and communication. You meet with a resident first, who gathers a health history and other general data, before the medical team meets to discuss your case, and before anyone tells you any specifics.
    As soon as I met with the surgeon at SCCA, I knew I was moving my surgery and care to them. I liked the breast surgeon at Virginia Mason. But I LOVED my breast cancer surgeon at SCCA. She was completely frank and honest with me about what I was facing (still a mastectomy) and she let me grieve about my poor breast. But then she started describing all the choices for the type of mastectomy, choices that I was discouraged from considering at Virginia Mason.
    My course of treatment turned out to be the same as the one described by Virginia Mason. But I felt more in control of my treatment, and more involved, at SCCA. When I didn’t get along with my first medical oncologist – SCCA listened. They listened, they told me “You’re absolutely right” and they found the perfect medical oncologist match for me
    So, yes, please, get a second (or even third) opinion. You are worth it! Find the doctor that listens to you, who is aligned with your goals. Fighting cancer is hard enough. You don’t need to fight your medical team, too. They should be on YOUR team, supporting you.

    • Hi Tina, I was so happy to read your comments – NOT because you have to go through BC, but because you were a perfect
      example of finding the RIGHT MATCH FOR YOU as far as your medical team goes! The other hospital was okay, just not
      the BEST for you!
      I appreciate your good tips that you wrote about! Myself and so many others will appreciate it! Keep healing!

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