• Create Your own Survivorship Care Plan

    Asked by LiveWithCancer on Wednesday, August 15, 2018

    Create Your own Survivorship Care Plan

    There is a way you can fairly easily create your own survivorship care program. Go to OncoLink and follow the prompts: https://oncolife.oncolink.org/form/oncolife_v11/

    11 Answers from the Community

    11 answers
    • GregP_WN's Avatar
      GregP_WN

      We also have a couple of blog posts on our blog page with ideas and instructions on how to move into survivorship and create a plan. go to www.whatnext.com/blog and scroll through the articles.

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      This is an awesome site where you answer about 5 minutes worth of radio-button questions and it spits out an incredible report that takes into account your diagnoses, chemo treatments, radiation, and surgeries ... and potential long-term side effects and ways to address them. You never enter your name or anything so there are no privacy issues that I can see. (I did give my email address so it could be mailed to me, but later I found a way to download the full report straight from the site.)

      In no way am I ready for a survivorship care plan since I am still in active treatment, but I went through the process just to see what was generated and I was very, very impressed. I learned about it on another of the Texas Oncology Foundation Webinars.

      It is WAY worth the time to check it out for anyone who is finished or finishing with treatments. Patients are encouraged to print it and take with them when they see their oncologist so that changes can be made as needed for that specific patient.

      about 1 month ago
    • Lauraandmary's Avatar
      Lauraandmary

      This is an excellent site!

      about 1 month ago
    • geekling's Avatar
      geekling

      I thought this might be a good site too until I dug for information. It gave me a number to follow up with aftercare but the radiation center had no clue, did not deal with aftercare but did give me another phone number which also was a radiation center which referred me to a nutritionist and a gastro. Not exactly what I expected.

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Well, I am so sorry you don't like it, Geek, though it is no surprise that you don't.

      It gives a great Survivorship Care Plan that you are then instructed to take to your oncologist. You and your oncologist are to discuss the contents, make any changes needed for you individually, and go from there. It will meet the needs of many here. Obviously, it is not appropriate for everyone.

      But, thanks for taking a look. I'm sorry it didn't meet your needs.

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      In case anyone looks at this and is confused based on what @Geek wrote, I thought I would give more information about the site which creates the Survivorship Care Plan for you.

      First of all, realize that no personal information is requested at all. I like that about it.

      Now, here is the "About" section of the overall OncoLink site:

      "About OncoLink
      OncoLink was the first cancer information website on the Internet, started in 1994, and remains one of the largest. This award-winning site is maintained by a group of oncology healthcare professionals who understand the need of patients, caregivers and healthcare professionals. OncoLink’s content is continually updated and ranges from treatment and disease information for a newly diagnosed patient, support through the side effects of treatment, and into survivorship.

      OncoLink provides tools and educational materials to support the practice of busy practitioners, including on treatment education, psychosocial support and survivorship care plans. These create a one-stop shop for patient education, enabling more impactful patient interactions, improving patient-provider communication and satisfaction. In addition, these tools can enable practices to meet regulatory requirements. Our content is available for syndication and co-branding to meet your patient education needs.

      Our primary goal is to support patients, caregivers and practitioners through education. This can empower patients to make educated treatment decisions, be active participants in their care, and be their own advocate. We provide up-to-date cancer information, free of charge. We hope our passion for this goal shows in the resources you find on OncoLink."

      When I looked at the Board of Directors, it is mainly comprised of MDs. I trust most doctors, appreciate their giving back to their patients, and liked seeing that they back this site.

      `**~*~*~*~*~*~*~*~*~*~*~*~*~~**~~**~~**~~**~~**~~**~~**~~*~*~*~*~*~*~*~*~*~*~*~*~`**

      When you consider only the Survivorship Care Plan, I think it is good to realize that it is a program developed by Penn Medicine.

      There is an amazing amount of information on the site. I don't know what @Geek saw and is referencing, but this site has a fabulous reputation and is a great resource. Naturally, no one has to use it if they don't want to, but please don't be dissuaded from making your own decision about the site by what @Geek wrote.

      about 1 month ago
    • geekling's Avatar
      geekling

      Gee freaking whiz, LWC.

      I said it did not have luck with a center it reccommended. I am not bent out of shape because a link isnt perfect. The site sent me to a center which had no idea of its existence and was unable to handle after effects of treatment. Dont shoot the messenger

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Geek, You are a piece of work. I'm not bent out of shape at all. I want people to not rely on your negative post (no surprise since anything I write is followed up with something negative from you ... but maybe not everyone knows that).

      "I thought it might be a good site, too, until...." --- that says you found it lacking. I really don't even know why you bothered to look at it at all. You've been cancer-free for so many years that a survivorship plan would be a little out of place, it seems to me. Usually, people get them just as they transition out of ongoing care.

      Whatever. Glad to know you're not bent out of shape. That's a really good thing.

      I didn't even get my gun out.

      about 1 month ago
    • geekling's Avatar
      geekling

      https://www.oncolink.org/clinics/search?zip=&distance=10&state=FL

      This is what the link gave me for Floriduh survivorship clinics. I phoned the South Florida Radiation Oncology SFRO Survivorship Clinic as suggested because they are within a day's drive. They had no idea what oncolink was or a survivorship plan. They gave me a number to another center which gave me a number of a dietician.

      Enough said on the matter or no?

      about 1 month ago
    • Paperpusher's Avatar
      Paperpusher

      I will do this for hubby. He was not given any type of survivorship plan. He's asking questions about what his chances are. He was told at the outset that his chances were 25% of achieving remission. He's more than 3 years post treatment and stable. He's had friends whose cancers have been "cured" but returned after 10 years or more. He wants to know if that's going to happen to him and what the percentages are. All I can tell him is his cancer is high grade and aggressive and I don't know and neither do the doctors. Maybe this will provide some info for me if not for him. Thank you for posting LWC!

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Congratulations to your hubby, @Paperpusher!! He is definitely one of the fortunate ones to be in remission. I have a friend who had extensive sclc. She had just come out of treatment when I was diagnosed, I think. She is still going strong. She's had a couple of scares, but they have turned out to be nothing (or, not cancer). She's doing fantastic. I hope your husband has the same results.

      I don't know if this report gives the likelihood of recurrence (I honestly haven't read mine closely). But, it definitely does tell about possible side effects that might pop up from your treatments after you are no longer under constant care by the oncologist.

      Since I am still in care, I just did the report to see what it took to get one and basically what was included. It was easy and free, why not?! :)

      But I was thinking earlier that it might be good for EVERYONE to do, in treatment or not, because we have had a lot of discussions here about people not being told of all of the possible side effects from their treatment. I think this plan covers a lot of the more common side effects. It might be good for people to know, even while in treatment. If they are too concerning, they might want to change treatment plans or something. Just a thought I had after doing little more than glancing through my own plan...

      I hope it will help answer some questions for you and your husband, Paperpusher!

      about 1 month ago

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