What To Do
Don't Panic
First and foremost-Don’t panic! Literally sit and take several deep breathes and remember YOU HAVE TIME to figure this out! Many of us at the time of diagnosis immediately shift into crisis mode. This is a normal and logical response. However, you need to remain clear headed as you make decisions about your doctor selection, treatment options and immediate future. If you have never relied on others for support or assistance of any kind, now would be the time to reconsider that position. Gather friends and family and discuss your situation. You may need rides to the doctor, help with meals and housework or just moral support. It’s very important to ALWAYS have someone with you at doctor appointments. Studies show that we only hear about one quarter to one half of what is really discussed at visits. Having that extra set of ears is really important. Start building a strong support team right from the get-go.
Must Do's
Doctor selection
Doctor selection is high on the list of priorities. Make sure your mind-set is in line with the Oncologist you select. If you are fairly young, active and otherwise healthy you certainly do not want to have an oncologist that is doom and gloom and happy so take a more passive approach to treatment. Recognizing what your priorities are is key to moving forward. There are folks out there that feel they have had long, happy and fulfilling lives and choose to take a less aggressive approach, while some of us feel we are not by any stretch done with this life and want to take a very aggressive stance moving forward. This is an important distinction to make and only you can make it. At this juncture you must realize that this is a time when everything is “ALL ABOUT YOU”. That is an uncomfortable position for many of us but you must become the priority in order to succeed. You have the absolute right to get a second opinion, see another oncologist and seek out someone whose personality meshes with yours.
Think Outside of the Local Box
Think outside the “local” box. Remember that this is a RARE cancer. Most oncologists in your town will have never treated anyone with Thymic Carcinoma in their career! You really need to bring out the “big guns”. Go to the largest comprehensive cancer center you can. If it means traveling several hours or staying overnight, then do it!! Find a way!! That’s when you call that old friend or cousin and say “I need a place to stay for a night or two”. Most of the large centers have hotel discounts or houses that you can rent a room for very little, kind of like a Ronald McDonald house for adults. Remember-the big fish are in the big ponds and when you are fishing for a cure you want to reel in a big one!! Otherwise, encourage your local oncologist to confer with someone at a larger center regarding treatment protocols etc.
Things to Consider
Next, Once you have set up that initial appointment, there are things to keep in mind that may help you down the road. You will have to have a biopsy if you haven’t already. Even if you have had one you should consider a second one in order to send the tissue for genomic testing. This will help immensely if you should choose to enter a clinical trial down the road. The cell markers found by analyzing the tumor tissue will point the doctors in the right direction saving time and energy by finding the right trial or treatment early in the game. The tissue sample should then be sent to Foundation One Medicine in Boston. (However, some of the big cancer centers now have this service available. Memorial Sloan Kettering in New York and MD Anderson in Texas both offer this service). That being said, most insurance companies do not cover this yet. So it will be an out-of-pocket expense of at least $4000.00. Four thousand dollars that could save your life! So if you can make it happen it is well worth it. In coming months to years it is possible that this will become a covered test for many insurance companies because it narrows down the actual treatment for each patient. The mutations your tumor has are like a fingerprint for your cancer, directing doctors to the right treatment, even now. Looking down the road, most patients will have this testing to develop specific and individualized treatment plans that might include a combination of medications. We are just not quite there yet.
Internet - Truths/Non-Truths
A word about the internet: Many of you will be told “don’t get on the internet”. This advice is a fair statement considering all the quackery that is out there. Certainly you should familiarize yourself with the details of this disease, but do it in a knowledgeable way. Do NOT believe that there are herbal remedies or juju from the jungle that will cure cancer and that Big Pharma is just keeping all this info secret so they can make money! These companies will do nothing more than take a chunk out of your wallet and prey on your vulnerability. Are there supplements being explored for ADJUNCTIVE cancer therapy? Absolutely! Curcumin and Cannabis oil are a couple but these are not THE treatment or THE cure. So stick with main stream treatments if you are comfortable doing so. When you read articles regarding Thymic Carcinoma, make sure they are scholarly articles published by reputable institutions presented in medical publications. Look at the size of the test group, the age and health of the individuals (inclusion criteria) and then look at outcomes. Even more importantly, make sure the information is up to date. Statistics from even 2012 are outdated. So much has changed in treatment of our cancer in a short period of time. So, old statistics are just that. Old. While we are on this subject remember that you are NOT a statistic!! You are an individual with Thymic Carcinoma and as such you will get individual results! Your cancer does not know how to follow the “mean” etc. So stay positive and know that there ARE excellent responses to treatment out there and you could very well be one of them.
Surround Yourself with Positive People
Surround yourself with positive people and take it one day at a time. Form a team of people who you can trust and rely on. A small core of folks that are reliable, positive and helpful. They will be your go-to crew when traveling, going to treatments, maintaining the home front etc. No matter how independent you think you are, we all benefit from having a friend or family member with us during stressful times even if only for moral support. This is the time when you should be focused on your care, treatment and recovery.
Understand your treatment options. Once you have an actual diagnosis of Thymic carcinoma (vs Thymoma) you will need to know what stage it is. If it has not metastasized (moved to a distant site) and is still confined just to the Thymus itself it is stage I and is likely amenable to surgery. This is also true of stage II invasion. However, once beyond these early stages the strategies for treatment change a bit. Common first line treatment is chemo/radiation with or without surgery. That is to be determined by you and your doctor. The most common chemo regimen is cisplatin/taxotere combination. The treatments are usually limited to 4 treatments although recommendations vary based on your current physical condition and your discussion with your oncologist. Below is a chart to better understand the staging of this tumor. The further down the chart, the less likely surgery will be an option.