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. One possible reason is that the DNA makeup is different in every person. Finding the right treatment for your specific DNA is extremely important. (More on this topic below in the “Precision Medicine ” section)
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 your next move should be. You should not make your 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.”
Be ready. Before you visit the doctor, write down your questions ahead of time. Bring this list with you to your appointment. It is always good to bring someone along with you to listen to what the doctor is saying! This could be a family member, relative, or a friend. Many times the patient will have difficulty focusing because they are still suffering from the shock of their lives with the cancer diagnosis. This is more than they can handle by themselves.
Updated (8-26-2019) It’s always good to bring a pen and paper, or even a recording device (such as a cell phone with a voice recorder app) when meeting with your doctor. I would let the doctor know you are recording “only for your personal use” for things you may have missed or want to review again. Recording is the best option, where you can listen to the conversation again later. I cannot express how important this is for your situation. It takes time to understand everything said. It is very difficult to take notes and listen at the same time. Trust me, after you leave the doctor’s office you will question and talk about what was said in the office. Notes really help out, but a recording is best. You could also record phone calls with your doctor. I have done both and it helps out tremendously. You may have heard words or terms you have not heard before … or options you are not familiar with. Recording gives you the ability to research terms and options on your own and not be under pressure in your conversations with the doctor. When you do this, it will generate more questions for you next doctor’s visit.
Always have the doctor explain anything you are not familiar with. It is OK to go slow and make sure you understand everything. Remember you are the customer and the doctor is the provider. If you can, try to keep a journal of what is happening during every visit. Also, for every test you have — blood work, scans, etc., make sure you keep a copy of the results for yourself. This is very valuable to indicate trends, as well as information for other doctors for a second and/or third opinion.
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?” It is very depressing and frightening at first for you and everyone you care about. You are going to experience the sad/horrible days, and that is normal. But 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.
Your Diagnosis: What you should do first!
Updated (1-24-2020) This section is constantly evolving to keep up with technology and the latest medical advancements. The best way to get started is to get your “Personal Information” about your cancer. The steps below describe how to do this. Also, remember the comments on the intro page. These steps cover the majority of cancers, but not all certain unique cancers.
- Request a PET/CT scan for Staging and the extent of the disease (detail below on “Staging of Cancer” section). Most institution will only do a CT scan because it is cheaper and they do not need to get prior approval as in a PET/CT scan (which could take 7-10 days). CT scans are not as detailed as PET/CT scans. CT looks for nodules that are big enough to show up on a CT scan. PET/CT scan can go down to the cellular level showing cancer activity on suspect areas, which a CT alone cannot do. Keep in mind the CT scan IS included in the PET/CT scan. The two scans are are combined to give the best detail of your cancer. The PET/CT scan is much better to accurately define staging (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. A PET/CT scan should be done before treatment starts … and then again after treatment is done (usually 2-3 weeks after treatment is complete). These results of the second PET/CT scan will tell you how this treatment option is working. Is the cancer receding? Is the cancer growing? Has it spread to other areas in the body?, etc.. Based on your results, you can then make the best decisions for your case (more info under the “Precision Medicine” section below). 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 doing a PET/CT. It is critical you get the best care possible and sometimes that takes challenging your doctor.
- If your cancer is at stage III or IV, always request a Precision Medicine test like a DNA analysis from a LIQUID AND TISSUE BIOPSY. (explained below in the “Precision Medicine” section). This test will get you the Personal/Precision treatment plan that is best for you. If your doctor does not agree with this test, either demand it, or go to another doctor/institution. This is how important this step is 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 such a bad decision with the advancements of cancer treatments today. This is an old school practice where they may treat you as a number, and they do their standard procedures with no risk to them. If there are no targeted therapies for your DNA from the liquid biopsy or tissue biopsy, then the last resort is their 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.
- Based on your precision medicine test results, you will get the best treatment options available for your specific DNA results. This works for many, many cancer patients.
- It is always good to get a second and/or third opinion. This can be a life and death situation and you need more than one set of eyes and one doctors 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 your first 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. Again, a good doctor will always welcome a second opinion. 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 14+ years later.
If you are already on chemo because that is what your oncologist said, you can still request for additional information with a precision medicine (genetic/genomic) test listed below for 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.
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.
Updated (12-3-2019) Precision Medicine: Tissue and Liquid Biopsies (DNA)
The “standard treatment” is to do only a Tissue Biopsy to check if the biopsy is cancerous with no genetic/genomic analysis (DNA) done. For Stages 1 and 2 this may be all you need. However, for stages 3 and 4 you need to add the “Precision Medicine” tests of both Tissue and Liquid biopsies looking at your DNA!
Updated (12-3-2019) A Liquid Biopsy test (genetic/genomic testing) is a simple two-vial blood test. One of the companies that provides this test is Guardant Health. To view a video link for a good explanation/graphical representation on how and why liquid biopsies are critical for your diagnoses, please Click here. They are a great company to work with. This is a relatively expensive test but Guardant either covers the full costs with your insurance, or you could pay a small percentage of the fee. Definitely worth it.
This DNA information is critical to move forward with your treatment. Guardant Health is capable of identifying roughly 73 different DNA mutations/cancer genes and also determines if you have any specific mutation (like EGFR, BRCA1, BRCA2, etc.). Then it will recommend every approved treatment option for your specific case … this is called “personalized treatment.”
Foundation One is another great company known for this type of genetic/genomic testing, using both Tissue and Liquid DNA analysis. Check out this site also. Many times people get confused on “genetic” and “genomic” testing. Here is the difference (from Foundation One site) – Genetic testing detects hereditary (inherited from parents) alterations in DNA, while Genomic testing detects acquired (over the course of a lifetime) alterations in DNA. Acquired alterations (Genomic) are responsible for the majority of cancers and may impact tumor growth, spread, and response to therapy.
New (12-17-2019) Foundation One – You can now order a test on-line, Click here to visit on-line request.
Modified (7-18-2019) Foundation One also has a great Assistance Program to help cover costs, if necessary.
NEW! (8-5-2019) Tempus is a another leader in Data-Driven precision medicine for both Tissue and Liquid DNA analysis. From their site: Tempus is a technology company that is making precision medicine a reality by gathering and analyzing clinical and molecular data at scale. Through the power of artificial intelligence, we believe all patients will eventually be on their own personalized therapeutic path, enabling longer and healthier lives. More information for patients Click Here .
NEW! (4-29-2019) MSK Article on Liquid Biopsy NEW! (10-19-2018) MSK-IMPACT Another genetic/genomic test looks for mutations in 468 genes. –From the MSK site: MSK-IMPACT is much more inclusive and can be used on any solid tumor regardless of its origin, potentially offering better treatment options for thousands of patients in the form of precision oncology. However the test is currently available for MSK patients only.
Remember, many institutions today only do a tissue biopsy, and do not do genetic/genomic testing. Please make sure this testing is done! If they do not, or refuse to do a genetic/genomic test, then look for another oncologist who will. Some institutions may do a this type test of the tissue sample, but in 2019 it won’t be as accurate as doing both tissue and liquid biopsies. This test is the newest advancement in medical technology and not all institutions will suggest this test for you yet.
There are times when you can have cancer with no identified mutations. However, you should still do the liquid biopsy test to know whether you have a specific mutation. The list of identified mutations is growing as we speak. Also get help reading the output report. There may be no approved FDA options at this time, but they also list clinical trials that are using soon to be approved treatment options. This will drive the best treatment plans for your specific case. In one case I know, the soon-to-be-approved immunotherapy drug in a clinical trial was used in saving the life of a cancer patient.
In my specific case, I had the EGFR mutation and was given an oral medication specifically designed to stop the cancer growth. It worked, and I am gratefully here 14+ years later. These new precision medicine techniques are the way of the future enabling longer and healthier lives.
Had I not known about my specific DNA mutation, the standard chemo and radiation treatments would not have saved my life … and I would not be here today. This is not a cure, but something that can extend your life until someday we can possibly find even better treatment options for your cancer. There are many treatment advances on the horizon and/or in clinical trials that will definitely extend lives … and hopefully either contain the cancer, or eliminate the cancer completely. You want to hang around as long as possible for these options to present themselves to you …and enjoy life along the way!
Go to top-rated cancer institutions for second opinions 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.
NEW! (1-2-2020) Special note: some institutions are doing telephone and on-line second opinions, such as Dana-Farber, for example. This is sometimes referred to as remote second opinions — if you can get your data/information to them ahead of time for a doctor evaluation. Click here to visit Second Opinion site at Dana-Farber site.
You don’t have to travel to get good care
Many people I talk to do not have the financial resources to go to any of those three locations. My advice then is to put your specific city into 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.
Updated! (07-17-2019) I previously had Hope Lodge. as location that provides free hotel stays for Cancer patients. As I tried to use it for myself, I found out there were some restrictions for people like me that are not going for treatment, but for consultation. So it is not as good as I thought for all cancer patients. I will leave the link for others who may meet the treatment requirements.
Currently, there are more than 30 Hope Lodge locations throughout the United States and Puerto Rico. From Hope Lodge site: Each Hope Lodge offers cancer patients and their caregivers a free place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows guests to focus on getting better. Hope Lodge provides a nurturing, home-like environment where guests can retreat to private rooms or connect with others.
Some cancer institutions are tops on a specific cancer field.
There are many other great intuitions that are the best in the country for specific types of cancers … again, if you have the means to get there. For example, if you had a glioblastoma (brain tumor), Dana-Farber Cancer Institute in Boston, MA, in my opinion, is tops in that specific field. The same is true for some other specific cancers where a tremendous amount of time and research goes into a specific cancer. It is extremely beneficial to do the research to help your specific case.
Be careful where you search on the Internet
There are many bad sites on the internet related to cancer and cancer treatments. Most are looking for your money by offering promises of false cures, use fake statistics, and more, 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 below.
Ignore statistics on survival rates
Most all survival statistics 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 … and these will continue to advance. 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 me 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!
Information specific to your cancer: I recommend going only to legitimate cancer sites i.e.; National Institute of Health, American Cancer Society, MD Anderson, Memorial Sloan Kettering, Dana-Farber, to name a few.
Updated (2-7-2020) What causes Cancer? 9 Risk factors to know about: Dana-Farber Cancer Institute, 2019 Article