Survival Specialist - tell me about it

Hanging_in_there

I was at a talk by a doctor who attended the San Antonio Breast Cancer Symposium in Dec. 2017. She said all accredited cancer centers are supposed to have a survival specialist, which is to help the patient live beyond cancer.

This may be a new specialty, but I'm hoping some of you have one.

My MO said their facility doesn't have one. I'm going to have to do this stuff for myself. For those of you who have a survival specialist, can you tell me in what ways that person helps you?

Thank You

MexicoHeather

Moffitt has one now, and they contacted me 10 months out of surgery via phone. Unfortunately, the plan was done based on my file by a caseworker, and my surgeon was not that jazzed about it. ( My survival talk was like this -- Surgeon: So everything is back to normal, right? Me : Ummm..working on it...just trying not to burst out in tears.) I had to ask for a copy of the plan. There was nothing really wrong with it, but dang! It was really basic and didn't have much on the aftermath of going through a year of treatments.

So I found the lymphatic- aware massage therapist at Moffitt and go to her every other month. Then I decided I would go to a bc get together, but not one held in a hospital. Breastcancer.org had a local group that was supportive and meets 2-3 times a year. I got an annual zoo pass for Exercise and Animal Therapy. I bought a rebounding mini trampoline. So, I am just making it up. I have side effects and I am not working. My church has been supportive. The doctors don't like to see me cry.

Hanging_in_there

Mexico Heather,

I'm going to have to make it up too. A physician who is taking yoga with me at a cancer support center is a retired doctor. She said she is her own survival specialist. But one thing she has is everything that was done to her and the dates. I am going to get my medical record since Oct 2016 when I was diagnosed. I think this is important. I don't remember what tests I took when.

Keep hanging in there. Where did you find a local Breastcancer.org support group? I guess it must be on BC.org, but I've never seen it.

Anonymous

We have a survivorship program at my hospital. There were a couple of group sessions where we received our survivorship plan which was mainly the expected schedule of appointments. We also received what-to-expect reading materials on physical and emotional recovery, returning to work, etc. With my permission, they gave a summary of my treatment to my PCP. They offer training to PCPs on what to monitor in cancer patients based on treatments received.

I was able to meet with one of the doctors twice because I had a lot of sciatic pain. She renewed my pain meds and gave me a plan to increase my dosage. My MO ordered a bone scan because of my meeting with her (all clear). She really helped jump start my recovery by convincing me to increase the pain meds. While my MO is focused on watching for cancer, she focused on my recovery. I am off of all pain meds now with no sciatic pain.

The program will help patients get any after-treatment care needed. I was already being seen by the lymphedema clinic. There are also psychosocial programs and a pain clinic for cancer patients. My hospital is huge.

Outside of the hospital, there's a cancer wellness centre that offers classes to current patients up until a year after active treatment ends. I would go for massages and yoga. They had cooking and creative arts classes as well. I really enjoyed going there.

There's a Community Connections area on this site. You could see if there's a group in your area. Hope you find one.

Hanging_in_there

Thank you Serenity,

I'm going to print this out and start doing it. We do have a support place for cancer survivors and patients. I've been taking 'gentle yoga' and just started taking 'pink ribbon pilates'. I also go to "Inner Peace and Healing", which is awesome, part meditation, part spiritual. They just had a talk on what oncologists learned at the San Antonio Yearly Breast Cancer Symposium.

I'm going to show it to whomever is in charge of the oncology department. I'm going to seek out a new oncologist who is more proactive and probably a new PCP who knows about treating cancer survivors.

VLH

My oncologist had me meet with her PA at the end of treatment. At the time, I was so beaten down by living alone while going through five months of chemo that I threw the reading material in the giant pile of lab tests and insurance paperwork. I confess that I haven't looked at it yet and I'm almost 11 months out from my last chemo treatment.

A lot of what was shared in person was common sense stuff, like recommending the Mediterranean diet; get regular exercise; see the oncologist every 3 months initially, then every 6 months, etc. The PA also provided some resources, like support groups (BC.org is mine because I can participate when convenient) and a free exercise class that's too far away to work for me. Your results may vary. ;-)

Lyn

gb2115

I'm not aware of my cancer center having anything like that, but it sounds nice. I was given a survivorship care plan, but it didn't really give me any sense of encouragement for the future.

jo6359

Usually major hospitals especially teaching hospitals have oncology social workers. These social workers provide info on support groups, programs available for bc patients and caregivers, financial assistance, provide counseling and even run interference with your doctors( if needed). I've never heard of a survival therapist. I am very impressed with the oncology social worker at Mount Sinai Medical Center in Miami Beach Florida.

MexicoHeather

The forum is called, "Get Togethers".