• Survivorship Care Plans - Geek, this is for you

    Asked by LiveWithCancer on Sunday, August 19, 2018

    Survivorship Care Plans - Geek, this is for you

    Rather than hijack Suan50's question that has absolutely nothing to do with Survivorship Care Plans ... we'll try AGAIN to explain what they are in a separate post. Please see the comments, Geek, where I have attempted, one more time, to tell you what a Survivorship Care Plan is.

    23 Answers from the Community

    23 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      Many oncologists give patients transitioning out of active cancer care a Survivorship Care Plan. Unfortunately, based on what I've seen and read, a lot of centers do NOT provide such a document and some patients really wish they had one.

      The site I listed provides a way that patients can develop their own Survivorship Care Plan, then take it to their doctor so that it can be discussed and revised to be truly patient-specific. When I went through the links for the survivorship care program, a program developed by Penn Med and highly respected, I didn't get a bunch of links, I got a Survivorship Care Program, just like the program said I would. It was a detailed, 12-page document generated based on answers to a few questions about my treatment.

      https://oncolife.oncolink.org/form/oncolife_v11/

      Geek, if you had followed the instructions and answered a few questions, you would have gotten such a plan and then you would know just what at least one example of a Survivorship Care Program is.

      The plan I generated from the site doesn't give any weird phone numbers to places that don't know anything about Survivorship Care Plans. Mine goes through the list of treatments I have had, documents what some of the common side effects are with those treatments and what to do about them should they occur, and gives a "healthy living" plan for life after cancer.

      Considering it is free and done for you after answering just a few questions, I personally think it is an awesome plan. Everyone will be different. But, you have to be unique and unlucky to get radiation center phone numbers and stuff like that. If you follow the directions and get the plan, you won't come away with phone numbers or any places recommended. The plan is for you to use with your doctor.

      According to OncoLink, all of the information provided in the generated plan comes from medical literature, established practice guidelines or the recommendations of experts in the survivorship field. Naturally, until you work with your own doctors, it won't be as specific as some might want or need it to be. It is, in my opinion, an easy way to get to a great start.

      Now, Geek, since you seem to be so confused about what a Survivorship Care Plan even is, let's see if we can find a definition for you. Maybe one or more of these definitions will be clear enough that you'll understand what a plan is and isn't.

      Here is ASCO's definition:

      ASCO offers a form called a Survivorship Care Plan. It contains important information about the given treatment, the need for future check-ups and cancer tests, the potential long-term late effects of the treatment you received, and ideas for improving your health. None of these forms is intended to provide a complete medical record. And, no single treatment or survivorship care plan is appropriate for all patients due to the complexity of cancer care.

      And, here's the definition given by the National Cancer Institute:

      A detailed plan given to a patient after treatment ends, that contains a summary of the patient’s treatment, along with recommendations for follow-up care. In cancer, the plan is based on the type of cancer and the treatment the patient received. A survivorship care plan may include schedules for physical exams and medical tests to see if the cancer has come back or spread to other parts of the body. Getting follow-up care also helps check for health problems that may occur months or years after treatment ends, including other types of cancer. A survivorship care plan may also include information to help meet the emotional, social, legal, and financial needs of the patient. It may include referrals to specialists and recommendations for a healthy lifestyle, such as changes in diet and exercise and quitting smoking. Also called follow-up care plan.

      The American Cancer Society has a lot of information on the Plans:

      In 2006 the Institute of Medicine issued a report recommending that every cancer patient receive an individualized survivorship care plan that includes guidelines for monitoring and maintaining their health. In response to that report, many groups have now developed various types of "care plans" to help improve the quality of care of survivors as they move beyond their cancer treatment.
      https://www.cancer.org/treatment/survivorship-during-and-after-treatment/survivorship-care-plans.html

      Finally, most people who have been out of cancer treatment for many years probably do not now need a Cancer Support Plan, but anyone can generate one to see if it has valuable information in it or not.

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Here are links to a couple of WhatNext blogs about Survivorship Plans:

      https://www.whatnext.com/blog/posts/creating-a-survivorship-plan-for-life-after-cancer/?utm_source=facebook&utm_medium=organic&utm_campaign=[survivorship]

      https://www.whatnext.com/blog/posts/5-things-to-know-about-survivorship/?utm_source=facebook&utm_medium=organic&utm_campaign=[survivorshipblog]

      3 months ago
    • Lauraandmary's Avatar
      Lauraandmary

      LiveWithCancer,
      We found the survivorship care plan to be comprehensive and VERY good.
      As I have written in a previous thread, we asked for a survivorship care plan at the completion of Mom's treatment. Her physician punted the request to the nurse navigator, who stated the medical center did not provide survivorship care plans to Medicare patients due to reimbursement issues. WTF?!
      I brought her the templates from several sites (not the Penn Med site), and asked again; "surely, you can come up with some sort of guidance as we move forward?". Six months later, we rec'd an envelope left at the registration desk with very generic information.
      The Penn Med site care plans are awesome and include much more information than we rec'd. Many of the health issues outlined did occur. I wish we had rec'd information in order to anticipate and perhaps take action to offset some of the expected complications.
      Post-treatment was a long and arduous journey and I feel we were treated like whiners, complainers and ignored. In fact, most of these issues were listed in the care plan by Penn Med.
      Mom is coming up on her 5-years survivorship anniversary; I still found this site to be VERY helpful.

      3 months ago
    • geekling's Avatar
      geekling

      Here is what I got from your last link:

      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?

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @Lauraandmary, thank you!!!

      I am glad to hear that your mom is coming up on her 5-year survivorship anniversary!!! I hope her side effects are not too debilitating.

      I am very glad that the site worked well for you!!

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Geek, you are so hard--headed. Some of us talk about Survivorship Plans and you are going on and on and on ad nauseam about something completely different than the plan. So weird.

      But, thanks for the information on where you found the links you didn't like. Maybe you should let Oncolink know that they are disappointing you (like all medical professionals and programs do) and that you suggest they check all of their links. The fact that they give links to radiation oncology centers in a state ... presumably all, but I haven't the time or desire to check, does not translate to Survivorship plans in the least. We are talking apples. You are arguing noodles.

      3 months ago
    • BoiseB's Avatar
      BoiseB

      Since I am in a Medical System that includes other branches of medicine if I were staying in Boise I would never be transitioned out of cancer care. When I had this fall the Brain Injury people consulted with the oncology people to understand how best to treat my head injury,
      My oncologist told me that stage IV cancers must have yearly check-ups.
      One might say stage IV is not a death sentence but it is a life sentence

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I think so, @BoiseB! People ask me how long I have to keep having treatments. My response is,"Until they quit working or I die."

      I asked my doctor about taking a break - 6 years of never-ending treatments gets old - he said I could, but he could make no promises about the results if I did. So, I'm still getting treatments.

      I really liked how the OncoLink Survivorship Care Plan tells you, based on your specific treatments, some of the potential side effects that might come up, even after finishing treatments. I have only glanced at the one I did for me, but I will ultimately take the time to actually read what side effects might arise from my various treatments. Even though I am still in treatment, I think having that knowledge will be beneficial.

      3 months ago
    • BoiseB's Avatar
      BoiseB

      I never realized how complicated making a move to another state was so complicated. But my PCP is actually working on a transfer plan it is almost a survivorship plan. All my records willbe transfered to my new primary care

      3 months ago
    • geekling's Avatar
      geekling

      I simply dont understand. All it says is to see a doctor. Apparently no professional in my area is into survivorship.

      I have no "potential" side effects. I have side effects which have become after effects. To repeat, had the creepy radiologist been truthful, you would not see me blogging here. I would be either dead or well and you would not ever have run into me at all and I would be one of those invisible statistics who breathe despite your beliefsm

      Why not say you will continue treatment until you are well?

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @BoiseB, I think leaving my care team would be the hardest thing I would face if I were to move to another place. I love the place where I go, along with every doctor I have encountered there. I am glad that your PCP is helping you like he/she is. That won't make it easy, but should make it easier.

      Is it October when you are moving?

      3 months ago
    • GregP_WN's Avatar
      GregP_WN

      The program from Penn State is an excellent resource. I went through the questions and it layed out basically what Vandy has been doing for me. It's an interesting tool, and I've not seen one like it anywhere else.

      3 months ago
    • BoiseB's Avatar
      BoiseB

      October is the target the passes start to get nasty after Halloween. I don't want to have my son drive a U-Haul over the passes in a blizzard

      3 months ago
    • macfightsback's Avatar
      macfightsback

      A friend who is a prostate cancer survivor and a MD told me about I Thrive Plan online site. You fill out a questionnaire and they give you a long list of goals you can choose to work on. You choose what order you want to do.them. You can do one or two goals at a time, 5 days to work on each one, each day you get helpful info to help you meet the goal. It costs around $9 a month. First month is free. I just joined last week because I felt overwhelmed with all the survivorship tips from numerous sources. They say and I agree we go from survivors to thrivers. I love that! One of the founders is an Ovarian Cancer survivor/thriver. Hope this helps.

      3 months ago
    • macfightsback's Avatar
      macfightsback

      Additional comment:. The I Thrive Plan is centered on healthy living and reducing risk of reoccurence. It does not talk about long term side effects of cancer/cancer treatment. That should come from your oncologist I would hope because each one would need to be individualized according to your personal situation and needs. My long term side effects are ringing in my ears and numbness in the lower half of my left foot. No solution needed. I am cancer free and am working to become more healthy.

      3 months ago
    • meyati's Avatar
      meyati

      The Penn State plan-- I just filled it out- has different options for different types of cancers and patient stages of treatment---.

      I am disappointed that, while it did ask about several ear/nose/throat problems, that it did not recommend an ENT. I saw my oncology radiologist almost every day during treatment. I had an appointment twice a week before treatment started, and one every two weeks for the first few months after treatment ended. Through the 5 years, I've seen my ENT much more than that.

      I entered that about the ENT as feedback. When a head/throat patient does enter yes about having several ear problems- and then nose-mouth problems-they should be asked if they have an ENT on their team.

      I wasn't given any links to anybody. If I took this in my first year-- it would not have helped me very much, but then their feedback to me might have been different.

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I agree, meyati, that an ENT would seem like a logical team member!! I'm disappointed that it wasn't more helpful. I wonder if it depends on the kind of cancer as to how thorough, etc. it is? Mine, which I still have only scrolled through and not actually read carefully, seemed to be full of a lot of great information to have, even now, with me still in treatment. (It would alert me, I think, to various issues that might crop up that maybe I haven't thought of or haven't attributed to my treatment or cancer.)

      3 months ago
    • meyati's Avatar
      meyati

      Well--i put rare head cancer-bone--hearing problems, sinus problems, eye problems. I told them that I was disappointed that it didn't ask about balance problems-which is fairly common after head radiation. I do not expect them to know the specific of any rare cancer-especially one that is considered really rare----But I keep saying that medical staff should be aware of the side effects of head radiation--I told them that too.

      The recommendation was for an oncologist and primary care-yet head radiation affects dietary needs-which i get through the radiation center and my Gastroenterologist;

      My ear-balance-sinus needs my ENT-big time-and my health would have been horrible without him- I might have lost lots more of my hearing or had to have ear shunts without him because of RADIATION SIDE EFFECTS.

      I just find it horrible and incomplete advice to help the survivorship for a head radiation patient-no matter what type of cancer the patient has. At the end- they asked if I would show the plan to my oncologist-- One option was---incomplete plan- and I marked that.

      Also I pointed out that head radiation patients often have trouble maintaining weight- and some have a sudden onset of wasting/failure to thrive. I actually met a man with the same type of cancer that was wasting-this was in a group meeting- and they took him off for a kale diet-he died the following month- died from starvation. This can happen to anyone that has head radiation for any type of head cancer-- Rare cancer has nothing to do with it.

      3 months ago
    • BoiseB's Avatar
      BoiseB

      Thanks for the links LWC. I am finding them helpful in making the move. I am wondering if anyone here has made a major move

      3 months ago
    • meyati's Avatar
      meyati

      Greg had a link for cancers-rare. I contacted that. The gateway had a FB questionnaire, and I filled it out- not only was my rare cancer aggressive, but the lab confirmed that it was spread through the scalpel--surgery spread it and enlarged the cancer site. I received an answer---Oh, that's horrible. I almost got sick to my stomach thinking about that. -and I never heard from them again.

      It starts in a pore at the bottom of the hair follicle- and sits there--If a person gets it taken out- there isn't anymore problems. If it's ignored-somehow it spreads from pore to pore-like a Chinese Checkerboard. They are there under the skin like a time bomb. Mine looked like a small cyst-zit for over 28 years. It starts drilling in the bone- it releases an acid that increases the pain, and that activates the surrounding cancers. It drills through the bone and eats out tissue like PacMan, until it hits something vital like the heart or brainstem.

      Spread by the scalpel immediately activates and spreads the tumors under each pore. In 4 days, I had about 6 tumors in pores pop up and look like marbles under my skin. After surgery, and when starting radiation, all of my upper lip, the inside and outside of my right nostril was covered, and my right cheek were covered with these tumors. That's what I told that FB link---These experts either got sick to their stomach or didn't believe me.

      About a year later- the lab confirmed that it was scientifically proved to be truly spread by the scalpel, and that if mine had been removed 2 years earlier that it would not have spread. They also documented the unusual presentation---looked like a cyst or zit.

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Wow, meyati. There are soooooooooooo many things that can (and do) go wrong with our very miraculous bodies. Your experience is scary. I was reading what you wrote above and thinking about every little bump on my face, especially near my nose, and praying it is nothing!!

      I think I'd rather have lung cancer that is common. Deadly, but at least they have seen it and know what they're dealing with. (I'd rather have none of the above, truth be told!)

      3 months ago
    • meyati's Avatar
      meyati

      After my experience- I don't understand how anybody with an internal cancer gets diagnosed at all. Mine was in front of them each time I took a breathe, and almost nobody even got curious. The few times that I was referred- it didn't do any good.

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I can't like your post, @meyati! That's just so sad. We hear WAY too many stories from people whose cancer wasn't diagnosed until a lot later. I was so, so lucky. I don't know how long my lung cancer had been around, but the little knot that my new PCP felt that set the ball into motion for the diagnosis had just come up very recently. I had totally forgotten about it so if she hadn't been thorough and astute, I would likely not be here today.

      3 months ago

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