Three Words No one Ever Wants to Hear
YOU HAVE CANCER! Three Words that no one ever wants to hear ! My own personal journey began on October 26, 2023 when I was diagnosed with a left lung nodule, incidentally on a chest xray that an urgent care doctor ordered for a persistent five week cough. Since then I’ve had a Chest CT, a visit with a pulmonologist, a lung biopsy, Pulmonary Function testing. I also have a PET/CT Scan, meeting with a thoracic surgeon and a radiation oncologist scheduled over the next few days. Once those appointments take place, I’ll have the information I need to make an informed decision about the best treatment protocol. I do not feel the urgent need to get a second opinion as this cancer is early stage, slow growing and curable. I’m probably going to do the surgical option as it’s my nature to get in, remove the problem and be done with it. I HAVE CANCER!
As we all know, cancer is a devastating disease. It is not only devastating to the patient, but it devastates everyone who cares about the patient. Once you have been diagnosed with cancer, your life is never the same. Every ache, every pain, every bump and every lump makes you worry that your cancer is spreading or coming back if you have already completed your treatment. Regardless of what type of cancer you are diagnosed with, all persons with cancer share the same anxieties and fears. Everyone wants to be seen by the best doctors. Everyone wants to be treated with the best treatment available. Everyone wants to live.
When diagnosed with cancer, it is not uncommon for the first reaction to be one of fear of suffering a slow and lingering death. Then the panic sets in. Waiting to get an appointment with the oncologist or surgeon. Waiting to have tests scheduled. Waiting to get the test results. Waiting to see yet another specialist. Waiting for the results of further testing. The waiting causes tremendous anxiety and panic as the uncertainty of your future lies in the hands of total strangers. You wait and you panic and you feel like each day you are not being treated, you are that much closer to dying. Your life revolves around your next check up, blood test or diagnostic procedure. When well-intentioned people ask you how you are doing, you know that you are only as good as your last scan or blood test.
A few weeks worth of waiting will not effect your overall treatment outcome unless you have a very aggressive form of cancer. It is more important to find the right doctor for your type of cancer. A doctor whom you trust and feel comfortable with. You will have no choice but to put your fate into the hands of that cancer specialist (oncologist). That doctor will determine the best form of treatment for your cancer which will include surgery, chemotherapy (drug therapy) and/or radiation therapy. You may be treated with one or a combination of these three treatment modalities.
Once a person is diagnosed with cancer, things start happening really quickly with the oncologist calling most of the shots. You may find that you have absolutely no control or involvement in the early decisions being made. Once you get over the initial shock of the diagnosis, you will be able to take back some of that control. Be an active participant in the decision-making about your care. You can do this by asking lots of questions and doing lots of research.
While you must have faith in your doctors, you can also make sure that you are informed about the type of cancer you have. Research your cancer on the internet, while being aware that some internet sites are not as reliable as others. Become internet savvy and research the community blogs that are out there for your specific type of cancer. There are folks out there sharing their own stories- their triumphs and losses- and information and treatments that have helped them which you can share with your own health care team. Be aware that sometimes too much information from too many sources can actually increase anxiety. You will have to sort through the information you obtain. Be sure to discuss your findings with your doctor.
Bring a notebook and pen with you to every health care visit. Write down your questions before the visit the so you don't forget to ask them. Ask for clarification when you don't understand the answers. Ask how to spell the terminology used by your health care team. Ask the team members to talk in language that you can understand. Ask them to provide a sketch or drawing where appropriate, especially if you are a visual learner. Write down the answers when necessary.
Bring an advocate with you to every appointment. When you are stressed out it is often times hard to concentrate or recall conversations. You may also not ask the important questions. Your advocate will help remind you of the discussion and ask the questions that need to be asked. It is helpful to have the same advocate with you for each visit so they will be familiar with your illness and the prescribed treatment.
Seek out a 2nd opinion if you feel compelled to do so. Patients do this all the time and it will not jeopardize your relationship with the primary doctor. Most insurance companies will gladly pay for a 2nd opinion. You will feel more in control of the situation if you get the 2nd opinion and it will also give you a sense of security assuming that both doctors agree on the diagnosis and treatment modality. You can become confused if you get two different opinions from 2 (or more) different doctors. At that point you may want to do some more research on your own to determine the best course of action to take. While you may be compelled to criss-cross the globe going from doctor to doctor for a cure, this is not to your advantage. It will be too exhausting, too expensive and too emotionally draining. At some point, you will have to put your trust in one doctor. Just make sure that the doctor you pick has a passion for your life.
Be sure to let loved ones and friends support you in this journey. They can help you physically, emotionally and spiritually. Do not shut them out. You will need them now more than ever. Don't be ashamed to ask for help. Tell people what you need and how they can help you. Reach out to others who have had the same cancer for support. Your local American Cancer Society can connect you with these support groups. You cannot do this on your own. I created a personal CaringBridge.org website for myself in order to share my journey with family and friends. In turn, they will be able to send me loving and supportive responses.
There are many places where you can go for information, resources and assistance. Some of these reliable sources include:
The American Cancer Society at 1-800-227-2345. www.cancer.org
Cancer Care @ 1-800 -813-HOPE (4673). www.cancercare.org
Cancer Spiritual Support. www.mystronghold.org
Cancer Information Service @ 1-800-4-CANCER (226237)
Advanced Cancer Treatment @ 1-888-447-7357. www.issels.com
CaringBridge at www.CaringBridge.org
St Jude's Hospital for childhood cancers. www.stjude.org