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A diagnosis of cancer can be devastating - suddenly time stands still while anxiety and fear take hold.
The important news is that you or your caregiver can be your best advocate and ally in your treatment journey. If you want to be an active participant in your care, here are some tips to consider as you begin to process your situation:
- Get a notebook and a folder - before a doctor’s visit, write down important questions and any symptoms or changes in symptoms. Ask them what you may experience during and after treatment. During the visit or immediately after, take notes while the information is fresh in your mind. This will be a helpful reference as the information can be overwhelming. Most doctors don’t mind being recorded and it’s the easiest way to have an accurate record of what was discussed.
- Keep a copy of scans and reports - ask your doctor for a copy of all reports (you will probably need to get a copy of actual scans at the imaging center) and add it to your folder. These will be important should you seek a second opinion/consultation or request financial help.
- Identify someone (yourself or a loved one/friend) who will be the keeper of knowledge - this individual can research your situation and gain a sense of the right questions to ask. Ideally, this is an individual who can be objective, take time to gain an understanding of your situation, and accompany you to appointments. (cancergrace.org, cancer.gov, and cancer.net are great starting points as online resources for trusted information).
- Imaging and (if appropriate) genetic testing - make sure your doctor orders all the imaging and testing necessary to fully assess the situation before any surgery or treatment is scheduled.
- Seek out an NCI-designated cancer center - to increase your chances for the best outcome possible, seek out care from specialists with expertise in your particular cancer. If you are in the US, strongly consider seeking care at a cancer center designated by the National Cancer Institute. If you are not in the vicinity of an NCI-designated cancer center, consider getting a second opinion from an NCI-designated cancer center (see the next tip below).
- Consider a second opinion - any reputable cancer surgeon or oncologist will understand the reassurance that can be gained from a second professional opinion (in-person or virtually). There may be some decisions that need to be made and you are entitled to take the time to get all of the information possible to make the most informed decisions that are right for you. Ideally, this should be done once you have a diagnosis and before you initiate surgery or treatment. Two heads are better than one.
- Consider clinical trials - There are many promising clinical trials and there may be one that’s a good fit. Oncologists atImage
NCI-designated cancer centers have excellent connections to what offerings are available. Here is a series of videos on understanding clinical trials. Series 1 and Series 2
- Specialist, specialist, specialist - ideally, any surgeries should be conducted by a surgeon that specializes in that particular type of surgery to a lesser degree treatments should be delivered or prescribed by oncologists who specialize in your particular cancer. It is worth acknowledging that this may be somewhat dependent on where you live. If there isn’t a local specialist a virtual consultation (2nd opinion) with a specialist will help you identify your best treatment options and most often these treatments can be taken at a local center.
- Keep track of your visits and appointments - don’t assume that your doctor or cancer center is on top of every single patient. While they try their best, details can slip through the cracks. If you recall that your doctor said that you should be seen in 3 months, be sure to follow up to ensure that appointment gets scheduled. If you have a scan scheduled make sure you have a follow-up appointment as close as possible to the anticipated report date. This will keep you from waiting too long for results. Some places do this on the same day while others take 2 or 3 days to process.
- Have a support system - for some this can be an online community like GRACE. Having a forum where questions can be asked and concerns voiced amongst others who are going through similar situations can be amazingly helpful and a source of comfort. Local patient support groups or patient advocacy groups can be a great resource as well. For others, a support system might simply be a spouse, family, or friends.
- The importance of self-care - please take care of yourself. Eat well and take walks to help process your situation and to get to know yourself and what you need during this time - some people diagnosed with cancer need to be surrounded by loved ones while others may need private or quiet time. Let your loved ones know what you need from them. As much as you might wish this was the case, they are not mind-readers and really appreciate any guidance on how best to support you.
- Use your cancer center for support - The support from everyone at the cancer center is invaluable. They work with people in cancer treatment every day. From the nurses and techs to those at the front desk. they may have answers that your oncologist doesn’t. Every cancer center should have a social worker who can help with getting financial help or working with insurance companies for approvals for treatments and procedures. Here is a link to financial resources.
May you find comfort and support in your journey and know that you are not alone.
*This article was written by Nancy Sladicka Ph.D. and edited by Janine Thompson, GRACE Online Forums Moderator.
Nancy has a background in molecular biology and over 20 years of experience in medical education and healthcare communications. She has been a member of the GRACE Board of Directors for over 10 years and currently is the President of US Operations at Nucleus Global. We thank Nancy and Janine for their time and expertise, and continuing to help the GRACE community!
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