What To Do When Diagnosed
First and foremost, don’t panic!
The information that was just given to you is life-changing, but you are not alone. Take some deep breathes and remember that you have time and now the resources and support to figure it 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. For some just the thought of having to rely or turn to others for support or assistance of any kind is a next experience and not an easy one. However, from here on out a big part of your journey will involve countless other individuals personally and professionally and it will be your greatest asset in this fight.
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 discussed at visits. Having that extra set of ears is really important. Start building a strong support team right from the get-go.
Questions to Ask your Doctors
When you meet with your doctor or other members of your health care team, you will hear a lot of information. It can help to think ahead of time about things you want to know and to take a list of questions with you to your appointments.
Here are a collection of questions to ask your doctor/oncologist during various phases of your journey. Provided by the National Cancer Institute
Doctor Selection
Doctor selection is high on the list of priorities. Make sure your mindset and outlook on treatment are in line with the Oncologist you select. Whether you are ready to battle this diagnosis head on with a strong treatment that you know your body can handle, or due to your age or physical condition need a more passive, less aggressive approach it is important to make sure you and your doctor are on the same page.
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.
Build your Team of Healthcare Providers
It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world. Whatever it is, the way you tell your story online can make all the difference.
Each member of the care provider team can be an invaluable resource. Not every practice will have all these participants, but it’s good to know who is who.
The “expert” on you and your cancer treatment.
Oncologist
Radiation Oncologist
Surgeon
Doctors in training with a particular specialty
Medical school graduate that is still completing their training.
Nurse Practitioners or Physicians Assistant
Trained healthcare providers that work under supervision of the doctor.
They can help navigate the somewhat complex treatment plan, arranging appointments, relaying messages to the team, providing support and taking care of paperwork like short term disability and Family Medical Leave Act (FMLA).
Psychologist
Psychiatrist
Licensed Clinical Social Worker
Family Therapist
Professionals who diagnose mental health conditions and provide treatment. Most have at least a master’s degree or more-advanced education, training and credentials. Be sure that the professional you choose is licensed to provide mental health services. Licensing and services depend on the provider’s training, specialty area and state law.
From boosting your overall sense of well-being to managing your pain Holistic Practitioners can help you on your cancer journey. However it is important to remember herbal medicines currently have no proven scientific benefits but can help cope and relieve symptoms and side-effects from treatment.
Think Outside of the Local Box
Remember that this is a very RARE cancer. Most oncologists in your city or state may have never treated anyone with Thymic Carcinoma in their career! You really need to bring out the “big guns”. Seek out treatment at the largest comprehensive cancer center you can. If it means traveling several hours or staying overnight, then do it! Many of the large centers even have hotel discounts or houses where you can receive discounted rates. Otherwise, encourage your local oncologist to confer with someone at a larger center regarding treatment protocols, etc.
If you find yourself having to travel several hours for treatment please look into our Patient Assistance Program to see if you qualify for financial aid.
Somethings to Consider - Getting a Second Biopsy
Once you have set up your initial appointment, there are things to keep in mind that may help you down the road.
You will likely need 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. Four thousand dollars that could save your life! So if you can make it happen, it is well worth it. In coming months or 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.
Understand your Treatment Options
Once you have an official 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 to the Thymus itself, it is considered 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.
The Power of Positivity
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.
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 the 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”. So stay positive and know that many patients have had EXCELLENT responses to treatment, and you could very well be one of them.
Information on the Internet - Be Knowledgable
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 information available out there and its varying degree of validity. Certainly, you should familiarize yourself with the details of this disease, but do it in a knowledgeable way. Below are a few important things to be aware of when searching the internet for information regarding Thymic Carcinoma.
While herbal practices can provide relief for some symptoms we don’t recommend that it be used as a replacement for chemotherapy and immunotherapy treatments. For example, there are supplements being explored for adjunctive cancer therapy – curcumin (found in turmeric) and cannabis to name a few. While these plant-based remedies have healing properties and can alleviate symptoms they should be used in conjunction with mainstream treatments and not as your only form of treatment.
When browsing and reading articles regarding Thymic Carcinoma, make sure that they are coming from scholarly sources, published by reputable institutions and presented in medical publications. Be sure to look at the size of the test groups, the age, and health conditions (inclusion criteria) of the individuals in the studies, and then look at outcomes.
Even more importantly, make sure the information is up to date. Given the pace at which information changes, statistics from 2012 are considered to be out of date. Much has changed in the treatment of Thymic Carcinoma in a relatively short period of time.
Always remember, as you are going through this information, 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”. So stay positive and know that many patients have had excellent responses to treatment and you could very well be one of them.