After a cancer diagnosis, it’s standard to feel a whole array of emotions: confusion, shock, and that the whole occasion is a surreal and overwhelming experience. Often, it’s coupled with an overload of information – cancer jargon, medical terms, hospital maps, and treatment plans. Part of remedying this is knowing how to communicate with your healthcare team.
You can start feeling or behaving off-kilt, but it’s all a subconscious effort to gain control over your situation. For some, this may pass and for others it can ebb and flow – from feeling like you’ve got things covered to feeling like everything about your life is beyond reach. This back and forth and sinking feelings are normal. Cancer is by far more than a physical struggle. By learning, informing yourself, being transparent, and taking control, you care for your mental health, a crucial aspect when embarking on this new experience.
During and after cancer, it’s important to understand that you are still in the driver’s seat of your life, even if you don’t know where to go or what to do next. That’s why you’ve got your healthcare team – there to guide, support, and help you make the right turns. We’ve outlined a few major areas to bring up and tips to remind you how to make communicating with your cancer care team easier and in so doing, reinstitute a sense of control and improve your mental health.
What we’ll cover in this article:
Ask everything about your cancer treatment plan
Talk to your healthcare team about side effects
Be transparent about your values and dreams
Find clinical trials and present them
Practical tips for your appointment with your doctor
Ask everything about your cancer treatment plan to your healthcare team
Whether you’re at the beginning of your experience with cancer or living life after cancer and going to checkups, it’s important to feel fully informed and be in the know about your cancer, stage, treatment plan, and side effects, among other things.
At the beginning, ask your doctor to write down the name of your cancer, the stage, and the recommended treatment option. You’re usually bombarded with information and this will help you remember the key pieces and do your own research.
Usually, your doctor will recommend a specific treatment plan. Ask about it, why they think it’s the best option, the duration, the desired outcome, what the side effects will be, and anything else that comes to mind. Then, ask about alternative options. Do the same here – ask everything. A doctor may recommend a particular treatment plan to treat the cancer in your body, but knowing about the options can empower you to question it if you feel it’s not the right fit for you. What’s the best possible approach for your unique self– physically, emotionally, and psychologically?
Talk to your healthcare team about the side effects of cancer or cancer treatment
Side effects of cancer or cancer treatment aren’t only about what you will physically experience during treatment. Inform yourself also of the way in which it will affect other areas of your life – your relationship, your comfort at the workplace, sex life, or mental health. If you’re going to a checkup during or after cancer, make sure to ask about potential side effects that you could have at this point in your treatment or life after treatment. For example, is it normal to feel nauseous or tired during this time? If not, when can I expect it to come? Or, if you’re feeling pain after surgery, ask more about that pain to know if what you may feel is to be expected or is something worth checking on.
Gaining detailed information can be overwhelming so take it in your stride, but informing yourself as much as possible can give you the tools you need to anticipate what’s to come – physically, mentally, emotionally, and psychologically. Being prepared is a key way to manage your mental health, even if the unforeseen occurs (more here on fear of the unknown and how to cope).
Keep your doctor or healthcare team updated so they can continually ease the effects. For information on how to manage side effects, check out this article.
Be transparent about your values, dreams, and wishes
Going through cancer is unique for every person, depending on your life stage, your age, gender, home-base, stage of cancer, and unique situation in life. Just because you have cancer doesn’t mean that your dreams dissipate and your wishes are no longer valid. Cancer is a part of life, not your identity or something you become. You are not a patient. You are a person experiencing cancer.
Plus, cancer treatment is progressing at pace right now – about two thirds of everyone who goes through cancer in the U.S., lives past treatment and into complete remission. By keeping your values close to heart and hope at hand, you summon the internal strength to push through when cancer sucks and you just don’t want to have anything to do with it anymore.
Remember what it is you want for your life and share with your doctor. Even if you don’t have a grand vision or plan (remember, many people who don’t go through cancer also don’t have grand visions or plans either), think about what it is that brings you joy that you want to experience more of. Or, when and if you want to summon the energy, get curious about how you want to rebuild areas of your life during and after this experience.
For example, do you want kids in the future but know that hormonal therapy may affect your fertility? Share that. Learn about the treatment. See what can be done.
Find clinical trials and present them to your doctor
Cancer treatment is constantly improving and at a fast pace, thanks to clinical trials. It is unreasonable to assume that your doctor has the time and capacity to treat many people going through cancer, keep up with every single new clinical trial out there, and know if it’s an exact fit for you.
To begin with, ask your healthcare team about what clinical trials could be a match for you. This will make them aware that you’re interested and give them the heads up to look to see what’s out there.
If your cancer care team don’t take lead on this, take matters into your own hands (and take lead on it yourself, regardless of if they recommend something just so you know what’s out there!). Do the research yourself – there are clinical trials in all phases of research and development and for all stages of treatment. There are clinical trials for treatment or after it, for physical or mental effects, or ones to improve different therapies by, for example, better understanding side effects experienced after cancer treatment.
You can find clinical trials suitable for you in the War On Cancer app. Answer a few eligibility questions and share the trials you’re interested in and may be a fit for with your doctor who can look into it further with you.
Not only can this be a literal life-saver (if, for example, you have a cancer form that is currently incurable by standard cancer treatments), but is a phenomenal way of participating in the progress of cancer care for everyone now and to come. Consult your doctor if you find anything of interest, and ask for a second opinion.
Practical tips for your appointment with your doctor
- Remember that no question is a stupid question. Seriously, small or big. Your healthcare team is there to help you, and you can only help yourself if you know everything you want and need to know, and can prepare for what is to come – short-term and long-term.
- Express your worries to your healthcare provider. Whether they be about side effects, the financials, how the drugs may affect your mood, your mental health state, etc. By being transparent with your doctor, they can also better adjust your experience, understand what it is you need and prioritize, even if it’s not directly correlated to the physical treatment of going through cancer. They have been through this before with others – no worry or fear is new to them. (Speaking of which, if you want to connect with others who know what it’s like to go through cancer and learn from them, download the War On Cancer app).
- Write down all of your questions before coming and then take notes or ask if it’s okay for you to record the conversation with your doctor. It’s normal not to be able to remember everything, whether that be because of feeling stressed or effects from cancer treatment (chemo fog, anyone?).
- Bring along a loved one to the appointment. Sometimes before checkups, nerves can get the better of us. They can help you take notes, listen, and support you. If you can’t bring anyone along, call them when you’re there and they can listen in and help you remember anything you may want to ask or write down information.
- Explain that you want to be fully informed and be proactive in the decisions that are made throughout your cancer experience. By knowing that you value taking lead, they’ll be more likely to share with you. If necessary, explain to your cancer care team how to share news or updates in a way that is helpful for your mental health, and inform them of a loved one that you’d like them to share information with too.