• What kind of survivorship plans did your facility or Oncologist give you? Anything? I am surprised by the number of places that don't give

    Asked by GregP_WN on Wednesday, January 27, 2016

    What kind of survivorship plans did your facility or Oncologist give you? Anything? I am surprised by the number of places that don't give

    any advice or help with adjusting into life after cancer.

    56 Answers from the Community

    56 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      I have had two oncologists at two separate facilities. I haven't gotten a Survivorship Plan at either place.

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Neither of the facilities I go to provides any formal survivorship plan. However, the LCSW at my radiation facility (which also hosts my support groups) is available for counseling, including years after treatment, on an as-needed basis and at no cost. The facility also offers programs. Last year I participated in a six-week Healthy Living course there.

      about 4 years ago
    • coco5253's Avatar
      coco5253

      I was told to go out and live my life and try not to worry. There are support groups online for rural patients like me. I find this site and my books specific to after care are my staple.

      about 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      None. I was simply released to the world. (Run, world! Run!!!)

      about 4 years ago
    • geekling's Avatar
      geekling

      None

      about 4 years ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Have not received a survivorship plan from my doctor as of yet, I still see him every three months for checkups. He did refer me for a national study called The Lives Study. This study consists of a binder notebook containing information on general health, mental health, nutrition, activity, and newsletters,as well as counseling phone calls for the enhanced survival of ovarian cancer survivors. I have been in the study for almost two years .
      I fill out a questionnaire every six months pertaining to my lifestyle and they also check my weight and waist circumference every six months. I am not part of the control group of ladies who are in this study. The control group keeps daily diaries of their intake and lifestyle. After my two year participation,I will receive periodic checkup calls from the study for the rest of my life.

      about 4 years ago
    • BoiseB's Avatar
      BoiseB

      I don't know if my medical facility will give me a survivorship plan. They don't want to turn me loose:) I am their favorite lab rat. LOL :) Of course that second aggressive cancer is still out there and the first cancer is stage IV.

      about 4 years ago
    • CASSIEME1's Avatar
      CASSIEME1

      NONE

      about 4 years ago
    • vcollier's Avatar
      vcollier

      What is a survivorship plan?

      about 4 years ago
    • SandiA's Avatar
      SandiA

      I was going to ask the same thing

      about 4 years ago
    • Ejourneys' Avatar
    • coco5253's Avatar
      coco5253

      i really like the cure today article Ejourneys. thank you!!

      about 4 years ago
    • Carool's Avatar
      Carool

      Memorial Sloan-Kettering has many post-treatment groups, each targeted to survivors of various forms of cancer (or for lymphedema, or caregivers, etc.). Sixteen years ago, I met my three b.c. survivor friends at a post-treatment, women-only group that MSK offered (all groups are free of charge, and non-MSK patients can attend, I think). We four friends still meet for brunch every two months.

      about 4 years ago
    • vcollier's Avatar
      vcollier

      Thank you, Ejourneys. I believe MD Anderson has the types of groups mentioned but I live too far away to take part in them. Rural communities have many benefits but access to this type of benefit is not usually one of them.

      about 4 years ago
    • IKickedIt's Avatar
      IKickedIt

      None and I am seriously considering pursuing this because while treating and curing the cancer is obviously first and foremost, there is minimal support for survivors. Or we have to go digging for it, which is how I found this site several years ago. My oncologist followed my medical needs very closely, but let's face it, we aren't the same as we were before cancer. But what do we need, what would we have found helpful? I would like to pursue survivorship advocacy...I'd love to hear your ideas.

      about 4 years ago
    • Janetspringer's Avatar
      Janetspringer

      The only places that pushed survivorship were the hospital and rehabilitation hospital. I was not ready at the time. I was still in shock over all going on. I know I need it and keep thinking I will get with MD Anderson social worker. Haven't yet.

      about 4 years ago
    • beachbum5817's Avatar
      beachbum5817

      I don't know if they really gave me a plan, but they did go over all of the tests that I should keep up with, like a colonoscopy and dexa scan. Of course, they told me how important it is to keep all of my follow-up appointments. I still see my oncologist every 3 months and have moved on to yearly appointments with my breast surgeon and radiologist.

      about 4 years ago
    • cam32505's Avatar
      cam32505

      Never even mentioned at my cancer center. I guess that's up to us to figure out how we want to live the rest of our lives.

      about 4 years ago
    • meyati's Avatar
      meyati

      Excuse me, but what is a Suvivorship Plan?

      about 4 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      My cancer center never offered me any survivorship plans; they just keep me coming back for 3 month check ups. It's almostlike they did everything they could for me, but now it is all up tome; however, I have no direction, no idea how best to ensure the cancer doesn't come back. If only there were more survivorship plans offered; problem is it's pretty much you get out of active treatment and are told maybe not in words but in actions (or lack there of) "Good luck, and don't let the cancer come back." HUGS and God bless.

      about 4 years ago
    • BoiseB's Avatar
      BoiseB

      Child of God, perhaps your cancer center will give you a survivorship program when they let you go. Have you discussed possible parole :) I frankly think that my two death sentences were just commuted to life sentences :)

      about 4 years ago
    • lindi143's Avatar
      lindi143

      WE got nothng either they have not been much help we have had to find stuff on our own I have learned more from this site that from them i have never heard of a survivor plan but we could use one my husband is over the treat ment but the mental is really hard he is terrified all the time.

      about 4 years ago
    • meyati's Avatar
      meyati

      Albuquerque-What an FFing laugh!!! It's OK for Breast Cancer and nothing else. My network started a Cancer Health Center-counseling, yoga, pool, cognitive, physical, occupational, speech therapies. It was weight lifting, cancer zumba, dietitions, etc. It sent out a Dog and Pony show. They made fun of people that said they didn't mediatate, but pray. They couldn't understand that a head radiation patient can't bend the head down. They made fun of me because my face got all wierd from trying to do that, so I left with them acting like 13 year olds. I went once a week for 6 weeks, thinking that it needed time to click. They never asked anything about our health, and they did a partial health assessment that left me dragging a leg from a hip injury. I think this group is on "MEET-UPS", but a person must bring in their medical records and go through interviews, if it is this group. Nurse Navigator said that I don't have a real cancer, and she made 3 appointments on the same day @ 3 different clinics in the same hour. The clinics were in different parts of town. If this is through UNMH-no parking-and it's dangerous there at night. I won't go on, but it's PUBLISH or PERISH.

      People in NM are famous for saying that what isn't is. Like the UNMH professor that came up with skin grafts, grafting the skin of black rats onto white rats. Doctors and researchers came from all over the world. One European visitor used the restroom, and didn't get his hands dry-this was in the 1980s- the black ink on the rat came off in the wet hands. Life here isn't any different now than it was then. This is a place where kids are kidnapped from the UNMH Cancer Children's Ward, which is considered quite high by all of the cancer associations. The nurses keep blowing the whistle, because kids are given the wrong chemos, wrong doses.

      We have good doctors here. We have good nurses here, but we have more than our share of c(rap) and pretenders. The pay is low, so we get people that can't hold a job in other states. They go to a weekend cancer certification at the University of New Mexico and bill themselves as cancer experts.

      Just be grateful that you haven't been injured. To keep kids at UNMH, the state passed a law that a child can't change doctors or the hospital if the child has a life threatening condition, so people take wigs, etc and kidnap their kids. Don't ever hospitalize your kid in NM. You give up all rights to your child. Some cities have it arranged that a child will be air lifted to Denver, CO, Phoenix, AZ, or Odessa-Midland, Texas, even though Denver, Phoenix, and Midland are much farther away than UNMH. We had a school shooting 2 years ago in the South of the state-all of the kids were air evacuated to Odessa-Midland.

      about 4 years ago
    • meyati's Avatar
      meyati

      The latest kidnapping from the children's cancer ward was this past Christmas Season.

      about 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      I never thought of this 'til Greg mentioned it.Because no where or no one gave me a plan for anything.I've always been on my own on everything I went through ,except for my Lord and saviour.He has kept me alive for some reason.That's all I have is Jesus to depend on. ♥

      about 4 years ago
    • cbr2's Avatar
      cbr2

      Wow. I am amazed and disheartened by the responses to this question as there is no doubt that cancer is LIFE ALTERING in so many ways and none of us make it through this journey unscathed. My husband (stage 4 NSCLC) is almost done with 3rd round treatment and hopefully heading into remission (based upon the latest CT scan and MRI). The Cancer Center that we use has a Center for Survivorship that offers lots of on-going support such as counseling, nutrition and integrative services such as massage, reiki, acupuncture etc. They also offer something they call the STAR program which is a nationally certified program (I think is stands for Survivorship Training and Rehabilitation). I did not realize that we were so lucky to have these services. We have been told that we will be provided with a Survivorship Plan and access to on-going support when we complete treatment. It might be worth while for people to ask about STAR certification at the facility they are using.

      about 4 years ago
    • HeidiJo's Avatar
      HeidiJo

      No, I was not given a survivorship plan, and as a result, I thought everything would go back to "normal" I could not have been more wrong. I was very hard on myself because I was not bouncing back so quickly, emotionally and mentally. I hope that oncology centers take note of this.

      about 4 years ago
    • lindi143's Avatar
      lindi143

      Heidijo YOu said it my husband is having so much trouble as he thought it would all be over when the chemo was done but the process of getting over chemo is as bad as chemo. He cant feel his feet, he is so discouraged and scared will it come back no one has said you are probably ok except me I think this is an area that needs work,we are floundering Im online looking for help.The best resource for us has been this site through the whole process.

      about 4 years ago
    • Carool's Avatar
      Carool

      You know, after I read these responses, I realized that my concept of "survivorship plans" didn't include doctors' ideas of how to stay healthy. My doctors at MSKCC said nothing about that. Of course, I know to not have much alcohol; never smoke (I never did); stay out of the sun or wear sunscreen; and keep all doctor appointments, tests, etc.

      about 4 years ago
    • meyati's Avatar
      meyati

      My doctors have talked to me and told me what to expect at every step of the way. Mostly they tell the staff that they had better not ever tell a patient it wasn't a real cancer, if the patient complains about a nurse navigator or counselor, to not tell the patient that they need the NN or nurse navigator-whatever. They tell the staff not to bother me, not to lecture me.

      about 4 years ago
    • SurvivorCoach's Avatar
      SurvivorCoach

      Survivorship care plans are becoming mandatory, at this point, by 2017 for all those completing treatment at NCI designated Comprehensive Cancer Treatment Centers according to the amended 2012 Commission on Cancer Guidelines. It was supposed to be January of 2015 for all patients completing treatment, however, because of issues around cost/time as well as a standardized template or approach, they altered the guidelines.

      As a cancer survivorship coach (and according to scientific studies as well), I see how survivors thrive when they have a plan. Even the small percentage of people receiving plans now, however, are finding they tend to be highly medically focused with very few resources for addressing quality of life issues and, what I call, the collateral damage of cancer - relationships, career, family, finances, physical energy, self-confidence, body image, infertility, and more. Care plans need to be for the whole person, not just a list of what happened medically and what follow up medical care is needed...and we need care plans not just for those finishing treatment, but for those who are struggling while in treatment, or those with chronic or metastatic disease as well.

      To that end, the organization I'm working for has sponsored the creation of an online experience that combines coaching with a 7 phase journey to address stress and overwhelm and create strategies for increasing wellbeing in all areas, build supportive relationships, and more. We have a free beta trial going on now anyone can apply for - no cost - www.wellbeydondthis.com Or if you just have more questions about survivorship care plans, how to get your medical provider on board with creating one for you, do let me know. Happy to educate and give some tips.

      about 4 years ago
    • NNN's Avatar
      NNN

      They offer me an appointment with the hospital nutritionist and to attend unlimited yoga classes in their survivorship center and all that free of charge. I'm on their email list and receive invitations for any courses held by their Doctors on different subjects related to breast cancer.

      about 4 years ago
    • meyati's Avatar
      meyati

      That's why my center started the Healthplex to meet the future guidelines, but with nincompoops working here, it's pretty much like putting lipstick on a pig that's in a muddy sty. When you are insulted, physically injured--Don't know the slightest basic of anything besides breast cancer-pigs with lipstick.

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Following up on what @cbr2 said, here's info on STAR:
      http://starprogramoncologyrehab.com/

      They have a list of locations. (The closest STAR facility to me is about 200 miles away.)

      about 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      No, I've never heard of a "survivorship plan" or even the word "survivorship." I'm treated at an NCI-Designated Comprehensive Cancer Center. However, I do have regular monitoring appointments for my breast cancer and my second primary of GIST, so have never been released.

      I'm comfortable with that, as I know if I felt bad they are available for me to call.

      about 4 years ago
    • lindi143's Avatar
      lindi143

      Survivorcoach the page will not come up.

      about 4 years ago
    • SpunkyS's Avatar
      SpunkyS

      I was given a plan at my last check up which was 5 months after completing my second series of chemo. When I asked after my first set I was told I was not in remission so didn't qualify. Now one is given as one completes treatment even if recurrence is possible. My plan is a summary of my diagnosis, interventions including surgery and specific chemo, my response to them. It also listed options for self care and support group follow up. My "bleah" on it is that I was not asked for input. The next time I have a follow up appt. I will discuss this with the patient navigator.

      about 4 years ago
    • meyati's Avatar
      meyati

      Barbara is correct that we have follow -ups, so we are still patients. What exactly does release mean in the STAR program? not that I need to worry, NM doesn't have any.

      about 4 years ago
    • BoiseB's Avatar
      BoiseB

      I am wondering if because I am treated at Medical Center with a cancer division not a Cancer Center: the rest of the divisions Internal Medicine, Neurology etc. are the survivor plan.

      about 4 years ago
    • Bug's Avatar
      Bug

      None. There was a counselor at the radiation facility that you could talk to. He was free of charge. I did speak to him once (or twice?) and he was helpful. I don't remember how I found out about him, though - if I was told about him or I asked if there was someone I could speak to. During a later check up, my oncologist referred me to a counselor who is affiliated with my medical group and free of charge. I think I can see her as long as needed - I hope. She has been wonderful to talk to.

      Ejourneys - thank you very much for all of the links.

      about 4 years ago
    • meyati's Avatar
      meyati

      Well, my net work has cancer centers in them, but it has heart, GI, etc. Like I said, according to STAR-there isn't any accredited center in NM, but the HealthPlex claims to be accreditated. I think that there are too many cooks in the kitchen when it comes to accredation.

      I've been told that I'm not the only cancer patient that refuses to go there, because of injury, a bad protocol. I just know what happened to me for sure. I don't expect them to know everything about head-throat cancer, but they should know that it can be bad to tilt the head down, and that we have a great risk of starving to death-and many of us are put on whole milk, egg, and beef diets. That's when I go whining to my oncologists-----the diet

      about 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      I'm confused. The only reason I said I'm treated at a NCI-designated Comprehensive Cancer Center was because "Survivorcoach" stated that the new Guidelines for were for NCI-designated Comprehensive Cancer Centers. (Yes, that is different from having an Oncology Division.)

      I'm not in remission for my second primary, but I do have an appointment in two weeks, so I'll let y'all know if survivorship is mentioned.

      If it's a whole person care plan, I think most of the WhatNext group is aware enough to tell our doctors if we're depressed, etc., and get extra help if needed. It's nice if they're trying to keep patients from falling through the cracks.

      about 4 years ago
    • meyati's Avatar
      meyati

      Let us know, Barbara. Here the HealthPlex is a separate location, and they are trying to scoop up cancer patients from the competition. Part of the problem is that the NIH sends grant money through different accrediting organizations, so a facility can be approved by the government through one accrediting association, but not listed by a different accreditation group. That's why I'm talking about 2 many cooks in the kitchen, and pigs with lipstick.

      about 4 years ago
    • Kebohs' Avatar
      Kebohs

      None really, just go out there and live...don't smoke, which I have not done in 12 years...and watch your alcohol..don't overdo it. Get regular check ups. That's it.

      about 4 years ago
    • Lauraandmary's Avatar
      Lauraandmary

      Asked for a survivorship care plan at the end of therapy. Were informed that "we don't do them for Medicare patients as they are too time-consuming and we don't get reimbursed". Helped them out with several outlines, finally rec'd a very nonspecific, generic "treatment plan" that was left at the secretary's desk 6 months later.

      about 4 years ago
    • BoiseB's Avatar
      BoiseB

      Laura Medicare was a real pain for me they wouldn't ok tests and some treatment. A plan bought my Medicare plan this plan is associated with my Medical Center but some independent providers are also in the plan they all love it. You might look into some of these plans.

      about 4 years ago
    • meyati's Avatar
      meyati

      lauraand Mary-I have a Medicare Advatage Plan.-I think that's what Boise is talking about. If you get an Advantage Plan, you get better care, and the AP advocates for you. Check them out. Even as rough as NM is, my plan and the cancer center provides the therapy-they want brownie points and a leg up in the cancer industry. The monthly premium rate is $0-that's right zero dollars. Go online and look for medicare Advantage Plans in your state. Personally, I'm glad for my cancer treatment, I know that I don't sound like it, but I'm glad.

      about 4 years ago
    • kalindria's Avatar
      kalindria

      I received booklets on survivorship clinics, groups, etc. but WhatNext seems to be filling most of those needs. Mostly, I try to get back in shape and back to living. Between naps, that is!

      Also a lot of the groups are kind of far away and I just don't feel the need to sit around with a bunch of people whining about our bad luck. I'd rather focus on now, living, enjoying life and moving forward!

      about 4 years ago
    • ghorselady's Avatar
      ghorselady

      At what point does one qualify for a survivorship plan? I had surgery only, a year ago. I have checkups every three months. So far, so good. Am I a survivor yet? No one has ever mentioned a plan. And this is at Henry Ford Hospital in Detroit, a very large health system.

      about 4 years ago
    • meyati's Avatar
      meyati

      Excellent, Kalindria-----on point- hit the nail on the head--

      about 4 years ago
    • Firefighter's Avatar
      Firefighter

      None other than..do whatever you feel like doing as long as you want. But if you feel tired then stop and have a rest.

      about 4 years ago
    • meyati's Avatar
      meyati

      ghorselady--sometimes survivorship plans with centers are just smoke and mirrors so the cancer clinics can get more grant and federal money. I was injured by the staff of one. There are so many accredation agencies that it's not funny. Your doctor may have patients that had bad experiences with the survirorship staff. Around here, it seems that people, that can't hold down a job or get a job, go to a university seminar for about 10-20 hours and get cancer certified. It's sort of like putting lip stick on a pig. I complained, and my oncologists found other patients that were hurt or injured by the same people. While my oncologists can't say it's a bad place. They don't say anything about it to patients or list it as a resource.

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      I know each group is different, but none of the support groups I attend fits the definition of "whining." We share resources and learn from each other's experiences, much as we do here. Speakers at my BC support group have included doctors, prostheses specialists, ACS outreach, and more. We actually do a lot of laughing. We support members undergoing scanxiety. We recommend or caution against particular doctors and share what we've researched. People have brought each other food, given each other rides to treatment, and raised funds for our local foundation that helps cancer patients in need.

      The facilitator of my partner's MS support group is a retired nurse with MS. She had started that group after attending a different group that fit the "whining" definition, and she wanted no part of it. The group she started is still going strong eight years later, while the "whining" group is no more.

      This is all by way of saying that I wouldn't write all support groups off because of one that might be a downer. My experiences have been positive and helpful.

      about 4 years ago
    • Paperpusher's Avatar
      Paperpusher

      The only things my husband was offered during or post treatment was chair massage, a meditation class and an art class. He's not the joining type so he didn't take advantage. I saw the LCSW twice but got the feeling that she was not there for the patient's family. His onc told him what someone else mentioned-to go out and do whatever he wanted to do now. It sounded like do it while you can. He's almost a year post treatment and is still so tired and easily short of breath that he doesn't feel like doing much.

      about 4 years ago
    • meyati's Avatar
      meyati

      Most of the support groups here are whining and disruptive- I will add judgmenta -we get speakers- maybe I didn't give the group enough of a chance.

      about 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      The only support group I've been to was for fibromyalgia, and it was very helpful and lots of fun. After a speaker and discussion, we all went out to eat at Applebees's and got to be very good friends. We understood each other's limitations as friends (feeling bad sometimes) and had an e-mail group and kept in touch. (before Facebook)

      about 4 years ago

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