When you are diagnosed with cancer it is very traumatic. You will ask yourself, “What do I do now? Where should I go? What should I do next?” The unknown is very frightening at first and affects everyone you care about. You will experience sad/horrible days and that is normal. After those first few depressing days, pick yourself up and say, “OK, how do I move forward to manage or beat this disease!” In the following sections are elements that I believe will help you tremendously in your journey/battle.
It is very important to understand that every single patient is unique! Be careful of what I call “standard treatment” or “standard of care” and put more emphasis on “personalized treatment.” Two people with the same disease undergoing the same treatment can have widely different outcomes. The DNA makeup is different for every person. Finding the right treatment for your specific DNA is extremely important. (more on this topic in the “Precision Medicine” tab)
I strongly feel that each person should take their health situation into their own hands. You should listen to all advice given, but then you (and your loved ones) should make the decision on what the next move should be. Please do not make health decisions based exclusively on one doctor’s opinion, or one family member, or one friend, or me. Take all the input from everyone, but again, you make the calls going forward. This is what I refer to as “taking control of your health situation.”
Recommendations for doctor visit:
- Do not be afraid to ask questions!!
- Make a list of questions prior to appointment
- Bring someone with you
- The patient will have difficulty focusing because they are still suffering from the shock of the cancer diagnosis
- Take your time, do not feel rushed
- Remember you are the customer and the doctor is the provider
- Recording the meeting with a cell phone app is the BEST option, or bring pen/paper as a second choice. Recording is very acceptable for the majority of doctors.
- Recording gives you the ability to review the appointment discussion. Trust me, you will be talking about what was said and it may be different from what the doctor said or how the person you brought understood it. Appointments can be somewhat short and intense. Recording allows you time to review what was said and research terms and options on your own time. This could generate more questions for the next visit.
- Let the doctor know you are recording “only for your personal use” for things you may have missed or want to review again later.
Your Diagnosis: What you should do first!
- Get your “Personal DNA Information” The tab on the menu item “Precision Medicine”: Tissue and Liquid Biopsies (DNA) describes how to do this. These tests will get the Personal/Precision treatment plan that is best for you. If your doctor does not agree with these tests, either demand it or go to another doctor/institution. This is how important this step is especially for stage III and IV patients. It really bothers me that most institutions start their patients on chemotherapy before even looking for the targeted therapy results from both a liquid biopsy and tissue biopsy test. This is not in your best interest with the advancements of cancer treatments today. You should have these tests done ASAP before starting a treatment plan. The results of these test can drastically alter the treatment plan. If there are no targeted therapies for your DNA profile from the liquid biopsy or tissue biopsy, then the last resort should be the standard procedure. DO NOT just start chemo because the doctor said so. Start with the personalized treatment first and then the standard treatment as a last resort.
- Request a PET/CT scan for Staging and identifying metastases or spread of the disease (detail below on “Staging of Cancer” section). Most institutions will only do a basic CAT scan, also called CT scan, with and without contrast dye because it is cheaper and does not need prior insurance approval as in a PET/CT scan (which could take 7-10 days for approval).CT scans looks for nodules or tumors that are big enough to show up on a CT scan and often times things are missed by the radiologist. A PET/CT scan can go down to the cellular level showing cancer activity and growth on suspect areas, which a CT alone cannot do. CT scan shows shape and size while PET/CT shows activity or growth of the cancer by highlighting them to light up on the scan. Keep in mind the CT scan IS included in the PET/CT scan. The PET/CT scan is superior at accurately defining the stage (which means to see if the cancer has spread to anywhere else in your body). If your doctor says we always do CT’s, do not accept that. Ask the doctor why not a PET/CT? It is by far a better diagnostic tool, not only for detecting cancer to levels that a CT alone cannot do, but also the best way to see if your treatment plan is working.
- PET/CT scan should be done before treatment starts AND then again after treatment is done (usually 1-3 months after treatment is complete). These results of the second PET/CT scan will tell you how the chosen treatment option is working. Is the cancer receding? Is the cancer growing? Has it spread to other areas in the body? Do not start another round of treatment until you know the results of the first round of treatment. Based on the results, you can choose the next step in the treatment plan. Should I stay the course? Should I look at other treatment options? Should I look for a second set of eyes or a second opinion at another institution? Just doing a CT alone can not answer these question as well as adding a PET/CT. It is critical you get the best care possible and sometimes that takes challenging your doctor. The pictures below show the differences between the CT alone and a PET/CT. There are normal / acceptable highlighted areas in the PET/CT, but highlights in non-normal areas detects where the cancer is active, which a CT alone or the doctor cannot pick up.
- Know the Stage of Your Cancer
Typically, there are 4 stages of cancer: stage 1 being localized and up to stage 4 where it has metastasized (or spread) to other places in your body. Your doctor should tell you your cancer stage up front, and it is critical to find out ASAP. Here is a link to a website that describes all stages in more detail. Stages of Cancer. There are some slight variations in staging terminology at different institutions.
- Get a second opinion before you start treatment:
- This can be a life and death situation and you need more than one set of eyes and one doctor’s opinion on what treatment plan is best for you. A good doctor will always welcome a second and/or third opinion. If they do not, you are seeing the wrong doctor. In my experience, this is a critical point. I do understand this is a very vulnerable time for you and your loved ones. But remember, you are not offending the doctor. You are only doing what is in your best interest in battling this disease. For you and your family’s sake, be strong and do the right thing for your situation. Think of the analogy of a major home project, such as landscaping or painting your house. Do you go with the first estimate, or do you get 2 or 3 estimates? Now your cancer and treatment options are much more serious than a home project. There are so many differences between doctors and institutions. A second opinion is imperative to compare and contrast the next move. The first two institutions I went to said there is nothing I can do, the cancer is too far advanced. They used the standard approach and gave me 3-6 months to live. They were wrong in not taking a personalized approach. The THIRD institution did a personalized approach with precision tests and I am here 15+ years later.
- If you have already started treatment and are already on chemo because that is what the oncologist decided, you can still request for additional information with a precision medicine (genetic/genomic) test listed on the menu tab above “Precision Medicine” for any specific mutations you may have. You can always change to a better treatment plan for your specific body/case. You are unique, always do what is in your best interest, not the standard of care philosophy at some institutions.
- Go to top ranked Cancer Institutions if you can. The two top-ranked cancer centers in the U.S. are MD Anderson in Houston, Texas and Memorial Sloan Kettering (MSK) in New York City. (They’ve held the top rankings for 20 years!) Another great institution in the top 10 is Dana-Farber Cancer Institute in Boston, MA. These are the top institutions for cancer if you can get there.
- There are many other very good cancer hospitals. Anything in the top 10 or 15 ratings of cancer hospitals is very good. Here is a link to the US News site which has been rating cancer hospitals for years.
- Look for the best cancer hospitals near you. Do a Google search for the top 10 cancer hospitals in your area. For example, if you live in San Francisco, CA what are the top ten cancer institutions closest to you? If you live in Miami, FL what are the top ten closest to you? Find out which doctors specialize in your type of cancer. Then make an appointment with one of the best cancer hospitals in your area. Bring all the scans and reports you have accumulated so far.
Many institutions are now doing Telemedicine second opinions. These remote second opinions are very beneficial to get but you must get your data/information to them ahead of time for a doctor’s evaluation. This is why I mentioned to keep a copy all of your medical information, such as blood work, scans, doctors notes and whatever else you may have
Be careful, the internet is full of misinformation related to cancer and cancer treatments. So try to stay on credible sites listed here. Most of the bad sites are looking for your money by offering promises of false cures, use fake statistics, and try to take advantage of your emotions with these false claims. These sites and the medications they sell usually do not have FDA approval and could even be dangerous to your health, as well as extremely expensive. Please try to avoid them and get info from the legitimate sites listed above.
Important: I would ignore statistics on survival rates. Most all are very outdated, and with the technology of today they are not accurate. You are unique, and technology and treatment options available to you are far better today. This is about your personal battle to exceed all the old statistics and continue to live a high quality of life. The physician who gave my original diagnosis told me, “There have not been any advances in lung cancer treatment in the last 20 years!” He also was offended by my choice to get a third opinion. I’m sure you can see how absolutely wrong he was!