What Questions Should You Ask When Cancer Treatment Ends?

7

The successful end of cancer treatment is a welcome milestone for any patient, but it’s also the beginning of an important new chapter.

SOG_7048_12-2-2Here are some questions to ask your care team at the end of treatment to help you live well beyond cancer:

  • Can I get a treatment summary and survivorship care plan? A treatment summary will usually include your cancer diagnosis and describe the medical care that you received. A survivorship care plan will describe follow-up screenings you might need, as well as preventive measures to help prevent future health problems. It may also offer tips for managing physical and mental health. Both of these documents can be helpful when you return to your primary care physician for regular checkups.
  • Are there potential long-term side effects I should be aware of? Learn whether your cancer or treatments put you at an increased risk for certain health risks – or even for developing other types of cancer. For example, did you receive chemotherapy or radiation that may increase your risk of heart or lung problems? Or, did you take any medications that may affect bone density and increase the risk of developing osteoporosis? Ask about symptoms to watch for and what to do if you notice them.
  • How often should I see my primary care physician for follow-up care? Learn which tests and screenings you may need, and how often you’ll need them. It’s also a good idea to ask about specific survivorship programs or services your cancer center offers.
  • Where can I get help with issues related to emotional health, such as depression, anxiety, or fear of recurrence? Your care team should be able to refer you to the appropriate experts for follow-up care. You can also ask about any support groups that might be right for you.
  • Who can help me with potential physical problems, such as pain, fatigue, weight changes, or lymphedema? Getting over the effects of cancer treatment can take time, but it’s important to address any physical issues you’re experiencing with your physician.

For more tips on living well after cancer, review our information sheets for cancer survivors, or see a survivorship expert in the Adult Survivorship Program at Dana-Farber/Brigham and Women’s Cancer Center. You can also attend one of several free educational sessions for adult cancer survivors.

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7 thoughts on “What Questions Should You Ask When Cancer Treatment Ends?

  1. Cancer would be unfortunate but luckily there are treatment options. Thank you for this list of questions to be asked once treatment is over. It would be beneficial to be aware of long-term side effects. Another thing to consider would be visiting the doctor as frequently as possible to stay on top of things. http://wyocancer.com/external-beam-radiation-therapy/

  2. Having been through this more than i’d like to admit, i must say that i these responses from the staff don’t respond to the concerns of the patient folks above. I never do these blogs but since i felt some anger for the fellow patients above who didn’t get heard, i am going ahead. I don’t like hurting people’s feelings, but your responses come across like pablum (not very useful)…can’t you let the survivors write these? Many of us have had to go elsewhere besides Dana Farber to receive post cancer care that is meaningful. Maybe a hospital just isn’t a place to get this kind of care. My experience is that docs don’t support the Zakim center or approaches to recovery; not even to talk about say something as important as physical therapy–though if you ask for it they will write prescriptions (so ask and go where they know how to treat cancer patients!). I really don’t understand what the problem is..I know the docs mean well–the ones i’ve had just don’t seem to believe in this stuff. i tell anyone to start with a physiatrist who can do things like trigger-point therapy for backs that are clenched up and tight and/or refer you to the right people that can help with your particular recovery needs. When i asked my former oncologist about exercise…she told me to get a trainer. I did and he just messed things up more. One needs real help from people who understand what we went through (perhaps you can give them lists of where to refer?) –how the surgery affected our bodies–and what is needed for recovery–that is what a plan needs to include–plus more than websites for people with such great concerns raised above. I ended up on a journey all my own. … The problem is that it is expensive to do this. If you let patients guide this more and got docs to buy into this as very important, got them to work with the Zakim staff and learn how to make referrals for particular needs (instead of being embarrassed to even talk about it) , then the bells and whistles that you offer could become actual therapy for recovery. Good luck to the staff on making headway in our shockingly fragmented health care system. With gratitude for your efforts and in hopes that these thoughts –made harsher than i would like by your responses–can be helpful in some way. It is meant with that intention. My best to all.

    • Dear Jane —

      Thank you for your feedback and for sharing your experience with our readers. We agree that sharing information directly from survivors is helpful, and encourage you or anyone else to share information in the comments or submit a guest post to our blog via insight_blog@dfci.harvard.edu. We have many, many posts from current patients and survivors that we share on Insight and always welcome more. While many of our staff are also survivors, we know that every cancer patient’s journey is different, and depending on many factors, each journey has different post-active-treatment needs. The Zakim Center can be an excellent resource. We are also actively working to create more online interactive opportunities for patients to find out more information from providers and from other survivors.

      If you or other readers are interested, we recently held a Google+ Hangout with several patients and caregivers about the process of transitioning off treatment. A recording of the hangout is available here: https://www.youtube.com/watch?v=lX51Yx2rVWk

      We will continue to work to offer as many opportunities as possible to offer both information, and a place for survivors to share their stories.

      Thank you again for your comment and for reading Insight.

  3. I also have multiple myeloma diagnosed 2013 had my bone marrow transplant November 2014 there is no such thing as end of cancer treatment for me but I’m also learning that I need much more support as far as finding out about disability Medicare Medicaid because I’m only 52 I was working full time and now I cannot keep my hours so I cannot keep my insurance through my company nor can I afford the $500 plus a month to cobra it where do you get help and information on things like that

  4. I am sorry, I disagree. Its not the end of treatment, its the end of active cancer treatment. And there is a different. A patient should never be told that ‘this is all the treatment you get’. They also need more than what you describe above. Patients need to know why there are no more active treatment options. They also need to know what they should keep an eye out for, they need to understand the risk factors, the level of concern that is required for their cancer and much much more. I have gone through this twice now. The first time I was told by my doctor that was it, follow up with someone else. It left me very unhappy for a very long time. The second time I decided I was in charge and made sure I was on top of everything and wasn’t going to be traumatized by the end of treatment again. There is so much more that should be here that is not even mentioned. I would be happy to discuss this in more detail if you want. I am not a medical professional in any way. I am merely someone who has been diagnosed with cancer twice.

    • Dear Caroline —

      Thank you for sharing your experience and insight. No one knows better about what to ask than someone who has been there twice, and you make great points about important information and questions patients should go over with their doctor and care team.

      As we mentioned above, making sure you have a survivorship care plan is crucial to keep both you and your doctors informed about about risk factors and other health concerns for the future. More information on what should be included in the survivorship care plan, including important questions to ask and information sheets, is available on our Adult Survivorship Program website. If you would like to share more, you are welcome to email insight@dfci.harvard.edu. Thank you again for sharing with our readers.

  5. I am sorry, I disagree. Its not the end of treatment, its the end of active cancer treatment. And there is a different. A patient should never be told that ‘this is all the treatment you get’. They also need more than what you describe above. Patients need to know why there are no more active treatment options. They also need to know what they should keep an eye out for, they need to understand the risk factors, the level of concern that is required for their cancer and much much more. I have gone through this twice now. The first time I was told by my doctor that was it, follow up with someone else. It left me very unhappy for a very long time. The second time I decided I was in charge and made sure I was on top of everything and wasn’t going to be traumatized by the end of treatment again. There is so much more that should be here that is not even mentioned. I would be happy to discuss this in more detail if you want. I am not a medical professional in any way. I am merely someone who has been diagnosed with cancer twice.

    1. Dear Caroline —

      Thank you for sharing your experience and insight. No one knows better about what to ask than someone who has been there twice, and you make great points about important information and questions patients should go over with their doctor and care team.

      As we mentioned above, making sure you have a survivorship care plan is crucial to keep both you and your doctors informed about about risk factors and other health concerns for the future. More information on what should be included in the survivorship care plan, including important questions to ask and information sheets, is available on our Adult Survivorship Program website. If you would like to share more, you are welcome to email insight@dfci.harvard.edu. Thank you again for sharing with our readers.

  6. I also have multiple myeloma diagnosed 2013 had my bone marrow transplant November 2014 there is no such thing as end of cancer treatment for me but I’m also learning that I need much more support as far as finding out about disability Medicare Medicaid because I’m only 52 I was working full time and now I cannot keep my hours so I cannot keep my insurance through my company nor can I afford the $500 plus a month to cobra it where do you get help and information on things like that

  7. Having been through this more than i’d like to admit, i must say that i these responses from the staff don’t respond to the concerns of the patient folks above. I never do these blogs but since i felt some anger for the fellow patients above who didn’t get heard, i am going ahead. I don’t like hurting people’s feelings, but your responses come across like pablum (not very useful)…can’t you let the survivors write these? Many of us have had to go elsewhere besides Dana Farber to receive post cancer care that is meaningful. Maybe a hospital just isn’t a place to get this kind of care. My experience is that docs don’t support the Zakim center or approaches to recovery; not even to talk about say something as important as physical therapy–though if you ask for it they will write prescriptions (so ask and go where they know how to treat cancer patients!). I really don’t understand what the problem is..I know the docs mean well–the ones i’ve had just don’t seem to believe in this stuff. i tell anyone to start with a physiatrist who can do things like trigger-point therapy for backs that are clenched up and tight and/or refer you to the right people that can help with your particular recovery needs. When i asked my former oncologist about exercise…she told me to get a trainer. I did and he just messed things up more. One needs real help from people who understand what we went through (perhaps you can give them lists of where to refer?) –how the surgery affected our bodies–and what is needed for recovery–that is what a plan needs to include–plus more than websites for people with such great concerns raised above. I ended up on a journey all my own. … The problem is that it is expensive to do this. If you let patients guide this more and got docs to buy into this as very important, got them to work with the Zakim staff and learn how to make referrals for particular needs (instead of being embarrassed to even talk about it) , then the bells and whistles that you offer could become actual therapy for recovery. Good luck to the staff on making headway in our shockingly fragmented health care system. With gratitude for your efforts and in hopes that these thoughts –made harsher than i would like by your responses–can be helpful in some way. It is meant with that intention. My best to all.

    1. Dear Jane —

      Thank you for your feedback and for sharing your experience with our readers. We agree that sharing information directly from survivors is helpful, and encourage you or anyone else to share information in the comments or submit a guest post to our blog via insight_blog@dfci.harvard.edu. We have many, many posts from current patients and survivors that we share on Insight and always welcome more. While many of our staff are also survivors, we know that every cancer patient’s journey is different, and depending on many factors, each journey has different post-active-treatment needs. The Zakim Center can be an excellent resource. We are also actively working to create more online interactive opportunities for patients to find out more information from providers and from other survivors.

      If you or other readers are interested, we recently held a Google+ Hangout with several patients and caregivers about the process of transitioning off treatment. A recording of the hangout is available here: https://www.youtube.com/watch?v=lX51Yx2rVWk

      We will continue to work to offer as many opportunities as possible to offer both information, and a place for survivors to share their stories.

      Thank you again for your comment and for reading Insight.

  8. Cancer would be unfortunate but luckily there are treatment options. Thank you for this list of questions to be asked once treatment is over. It would be beneficial to be aware of long-term side effects. Another thing to consider would be visiting the doctor as frequently as possible to stay on top of things. http://wyocancer.com/external-beam-radiation-therapy/

Comments are closed.

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