Chapter 6. Second Opinions – Part II – Discovering Treatment Options And The Right Oncologist For You.

Treatment Options

The other extremely important reason for a second opinion is to determine if there might be new treatment plans of which your oncologist may be unaware.  Put another way, is your oncologist offering you the latest and greatest in treatment options?  If not you may have to bring him or her up to speed or find a new oncologist.

Tried and true, but is it right for you?  My first oncologist, who I let go following my third visit, told me on more than one occasion that the cancer treatment he would recommend was, “tried and true.”  This recommendation was made shortly after he told me there was a 90% chance I would be dead in less than five years because there were no successful treatments for Mantle Cell Lymphoma.

You may ask yourself, what is a tried and true treatment?  To my way of thinking, a tried and true therapy is one that has been used for years with predictable results.  Tried and true treatments have loads of data about how the cancer cells and tumors are typically affected by the treatment, and the side-effects are generally known and fairly controllable.  In some cases that tried and true methodology is the right one, in others it may just be plain wrong, resulting in a recurrence of the cancer in a far less treatable form.  In the case of my cancer, Mantle Cell Lymphoma, the tried and true chemotherapy would have the desired effect on the tumors, but within a year or two, the cancer would return and this time the tried and true would be far less effective, or perhaps completely ineffective in knocking out the cancer.

I’ve had the opportunity to discuss the generally accepted standards of cancer treatment with a number of oncologists in the years I’ve battled my lymphoma.  Eventually, I became aware of certain general practices used by some oncologists, practices that continue to trouble me.  It seems that some oncologists continue to recommend and utilize tried and true treatments even in cases where more effective, newer therapies are available.  These oncologists may even be aware of these improved treatments but prefer not to use them because they lack the confidence or perhaps the knowledge of how to administer the treatment and how to prevent or reduce potential side-effects.  I doubt that any of us would be too happy to find that the best treatment available for our cancer wasn’t discussed or recommended to us by our oncologist, simply because he wasn’t comfortable administering the treatment.

This timidity toward new therapies may well have its roots in the college or university at which the oncologist studied.  As a student, a particular therapy or therapies may have been used for a wide range of cancers with good results.   After graduation that newly minted doctor will likely take his knowledge of those therapies and use them exactly the same way in his practice as he did at the university.

On its face, that’s exactly how I, and probably you as well, would like our oncologists to provide treatment to us: the standard treatment, administered in the standard way.  The growing problem with this tried and true technique is that over the last few years cancer treatments and cancer drugs have undergone a startling transformation.  Individualized treatment plans for patients are quickly becoming the norm across the country and around the world, with spectacular improvements in outcomes for many types of cancer.  If you’re like me, while you may be pleased that you’re receiving the standard treatment administered in the standard way, your delightful mood will quickly fade to black if you learn that a better treatment is available and you’re not getting it.

The Latest And Greatest

While the odds are long that you’ll find that “latest and greatest” treatment within the confines of your health group, seeking a second opinion outside the group will probably cost you some amount of money.  But its small change if you find an emerging therapy that prolongs your life and improves your overall health.  That’s exactly why I recommend seeking out the opinion of a recognized specialist in your type of cancer, even if it means you’ll be looking beyond your health group.  Even if you have a great oncologist, the chances he’ll be familiar with the latest treatments in every case is slim.

Advancements in the treatment of cancer once moved at a snail’s pace; today those advancements are coming at lightning speed!  New therapies are being approved for use nearly every month or so, making it almost impossible for even the best general oncologist to be fully apprised of the latest treatments for each of the many cancers he encounters in his practice.  For example, since 2013, I’ve been involved in a vaccine study being conducted at Stanford University Hospital where I was injected with a vaccine created using my own treated cancer cells.  This is just one of many developments that uses a patient’s immune system to destroy the tumors and cancer cells.  For some leukemia patients, a pill is now all that’s necessary to control their cancer. More and more cancer patients are able to maintain their cancers, rather than face the certain death that awaited them just a few short years ago.

A son of friends of ours was diagnosed with a type of non-Hodgkins lymphoma several years ago.  Over time, the son’s illness advanced to the point where his oncologist felt it was time to start a standard chemotherapy regimen to wipe out as much of the cancer as possible.  This young man has a number of health challenges in addition to his lymphoma and within twenty-four hours of receiving his first round of chemo drugs he was in the hospital in serious condition.  Eventually, he was stabilized and returned home.  His next round of chemotherapy had similar results even though the quantity of the drugs was reduced.  Once again, he returned home, with the idea of additional chemotherapy all but abandoned.  Over the next months, as his cancer advanced, the cancer-swollen lymph nodes in his neck became clearly visible.  His oncologist, one of the top oncologists on the island, suggested to the parents and their son that perhaps a new treatment, requiring only two pills each morning, might stop the cancer.  A few days later he began taking the pills and within a few weeks his swollen lymph nodes completely disappeared.  As of this writing, our friend’s son is doing extremely well; his lymphoma completely under control.

Personal Advocacy

So, perhaps this begs the question, how do you know you’re receiving the most advanced treatment?  No matter how conscientious and dedicated your doctor is, there are just so many hours in the day; she or he but a single person.  That’s where you, your invited friends and family can be of great assistance to your oncologist, to yourself and your fellow cancer patients.  It’s called personal advocacy and it’s extremely important that you and yours begin early to make sure your health remains the primary concern of your doctor.

Each of us battling an illness of a serious nature, like cancer, needs advocates.  These advocates can be enlisted from your group of invitees but they can also come from a wider group whose members are likely not on your invited list.  This includes, but is not limited to, your primary care physician, oncologist, or pharmacist.  You can also ask your religious advisor to be your advocate.  As far as I’m concerned, the longer your list of advocates is, the better off you’ll be.

Regardless of how extensive your list of advocates may be, the number one advocate on your list must be you.  You’ve got to be willing to put yourself out there to guarantee the best care available.  Of course, it’s always nice to have your partner, pastor, personal physician, or other support by your side as you consider the following questions, make decisions that will positively affect your health, and be with you as a support when discussing your treatment with the doctor.

  • Do you have the best oncologist within your health care group caring for patients with your type of cancer? If not, you must advocate for yourself, demanding in a calm and polite manner, your desire to be treated by the expert in your type of cancer within the group. Don’t just take “No” for an answer when requesting a change of doctor. This is your life we’re taking about.
  • Do you like and trust your oncologist? This may seem like a silly question, but in reality it’s exceedingly important. You’re going to spend a lot of time with your oncologist in the ensuing years, it’s important that you like him or her. Even more significant is trust. You’ve got to believe your chosen doctor is doing his or her best for you each and every step of the way.   If you have any doubts about your doctor, request a change. Make the change early, don’t let your misgivings drag on until a medical crisis occurs, making the change much more difficult. This is your life we’re taking about.By my third visit to my first oncologist I realized I needed to make a change. He was promoting a treatment plan that I was neither ready to begin or sure I wanted. After our visit Bobbie and I discussed making a change and we both agreed it was for the best. I called my primary care doctor and asked that she recommend another oncologist. A week later, I received a call from the oncology department with an appointment date to see our new doctor. It was that simple. Nearly five years later, I continue to be very happy with my decision.
  • Are you and your oncologist on the same page in regard to your wishes? Does he or she really listen to what level of care you’re hoping to obtain. At the time I was diagnosed, no treatments yet existed that offered the possibility of extending my life beyond a couple of years. Of course, there were no guarantees as to how my body would react to the chemotherapy, which with my cancer is quite potent. At the time, possible treatments were being investigated, so we decided that waiting and watching was the correct way to proceed. We approached our oncologist and asked if he would be amenable to our, “Wait and watch” plan. He answered, “Yes,” and the rest is history!Think of your oncologist as your partner, because that’s exactly what he or she is, a partner in extending your life. Bobbie and I found the perfect partner in Dr. Chan. He acted as our advisor as my illness advanced, interpreted medical tests, cheerlead during the good times, and listened during the bad times. It’s very likely your oncologist will become that for you as your journey continues.
  • Do you have a rare cancer? If you do, you may need to request that you be treated by a recognized expert in your cancer. With some health care plans, it may be necessary to discuss this desire with your assigned oncologist. He may decide to write a referral requesting treatment outside the program or he may want to contact the expert himself and work with him or her to provide the care and treatment in which you’re interested. When my wife discovered the vaccine study being conducted at Stanford University Hospital, while performing one of her regular internet searches, we discussed our possible involvement with our oncologist who was excited to work with us. In our situation, the study included a chemotherapy regimen that has never been used by the oncology department at our hospital and had only recently been adopted by Stanford. Dr. Chan contacted the doctors at Stanford and they put together a plan that would allow me to stay on the island while I received my six rounds of chemotherapy.
  • How much do you know about your cancer? Becoming well-versed in your type of cancer is a must. You can research it online and become familiar with sites that will keep you up to date on the latest investigative studies. Among the sites that will provide you with a wealth of information are: The American Cancer Society: www.cancer.org; The National Cancer Institute: www.cancer.gov; and the National Institute of Health: www.nih.gov, where you’ll find a list of every federally funded clinical trial accepting participants.
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  • Do you have a personal advocate? My wife Bobbie, has been and continues to be my greatest advocate. My health has been our number one concern and topic of discussion since the day I was diagnosed. I’m quite confident that you’ll find a similar advocacy from your partner as well. If you live alone, a group of your closest friends will also provide you with that much needed advocacy. I’ve written an entire section on advocacy called, “You Need Advocates”, in the chapter entitled, “Earthbound Angels.” Please refer to that chapter for much more information on organizations specifically created to help you deal with your cancer diagnosis.
  • Are you comfortable asking questions? Another important aspect of getting the right care at the right time is to ask questions. Each time we meet with our oncologist we have a list of questions to which we are seeking answers; you should too. We always ask Dr. Chan to go over my blood test results and discuss any areas of concern. After a CT scan or PET scan we’ll meet with him and discuss the result of the test in detail. My rule of thumb is to make sure I’m comfortable with my care before the meeting ends. We may ask some of the same questions month after month, but from my point of view this is my life we’re talking about. It’s your life as well, ask away.

Let’s review the importance of second opinions, which I don’t believe requires a second opinion.  Sorry, I just couldn’t pass that up!

  • A second opinion can give you an opportunity to have your cancer diagnosis reexamined by an expert in your type of cancer.
  • A second opinion should include not only the type of cancer but the staging of the cancer as well.
  • Many people get an all clear one year only to end up with stage four cancer the next. A second opinion after an all clear will provide you with peace of mind.
  • A second opinion will give you a chance to discuss treatment alternatives with the expert providing the second opinion.
  • If your cancer is considered rare, it’s best to seek an opinion from a recognized leader in your type of cancer. This will likely cost you some amount of money, but what value to you place on your life?
  • If you like and trust your oncologist that’s wonderful. If you don’t, it’s time to find a new one. Don’t worry about upsetting the oncologist, it’s your life we’re talking about.
  • Personal Advocacy is extremely important in assisting you in obtaining the right oncologist, one who will provide you with the treatments you desire. This is your right to make sure you receive the treatments you want.
  • We’ve examined the reasons why it’s important that you have some knowledge of your illness and the treatment options available to you. There are many sources that can provide you with the knowledge you seek.
  • Lastly, make sure you ask any questions you may have about test results or upcoming treatments.

Next week: Inviting your family and friends.

 

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