Survivorship Plan

[daggiesmom]

I was reading the Suvivorship issue of Cure magazine recently and saw an article about survivorship plans.

I was curious how many of us have actually been given a step by step plan after completing all the therapy to treat the cancer. Has your oncologist actually sat down and recomended going to a nutritionist, specific exercise programs, vitamin plans, specific smoking cessation plan of action, if needed, psychological counseling to combat the "survivor fears" which can hit at any time.

I'd be curious to know how many of us have had this SPECIFIC overview with their doctor? And would you feel "better taken care of" if you did have a specific plan outlined for you. Step by step in writing. Of course, we must all advocate for ourselves and at dr. visit times we need to "talk it up" but shouldn't the overall picture automatically include this follow up? Has anyone actually been given this kind of follow up? What experiences have we had?

Any thoughts?

Joanie

[Donna G]

No, not after completing therapy. The only "plan" was when I should have a CT or lab work for a couple of years.

I do believe you really could use a plan. Going through months of chemo, radiation, surgery really deconditions you. Some of us don't eat as well as we would or could ordinarily.

Donna G

[Connie B]

Well, 11+ years ago, I don't think my Onc doc REALLY thought I would live more then maybe 2 years, let alone offer a Survivorship Plan. They didn't offer anything back when I did my treatments.

My Surgeon, my Pulmonolgist, and my Internist Doc, all told me I would be okay and live a long life, but asking them today if they thought I would live this long they all say I am a "miracle"

One thing I would like to see is studies being done on Long Term LC Survivors that have completed Chemo, Radiation, & Surgery. There are some long term side effects to all those treatments. (oops sorry I got off track here)

To answer your question/questions, I have to say NO I wasn't offered anything other then followup checkups every three months for three years, then every six months for 2 years then yearly after that for CT's and Chest X-rays and blood work, that was it for me!

It'll be interesting what other LC Survivors have to say on this one.

[dcorey33]

All I got was "Well your cured. I shouldn't have to see you again."

I have kind of gotten through this by faith, my DH & family, & friends I have left. I would love to have gotten something more.

I never knew there was such a thing......

dani

[cindi o'h]

No survivor plan. Just demands for payment. (not kidding either)

Out the door...

I saw an article written by a pathologist at Mayo. I will see if I can scrounge it up. It was extremely long and interesting (to me).

Here we are surviving this bugger! Oh if only there were more of us, huh?

Cindi o'h

[Frank Lamb]

I was offered thru the VA system for to see nutrionist,smoke cessation,help for depression,and several others.None of these were needed in my case but they were made available.To my knowledge you don't need to have cancer these are available anyway.

[Kasey]

Nothing offered to me either, unless you count the local onc telling me that it WILL come back ! Does that count for anything????

Now that there ARE LC survivors hanging around longer than anyone once thought, maybe we need to make noise about this issue as well as funding. I know some days I struggle with a number of issues that I could use some help with.

Thanks for bringing this up, Joanie!

Kasey

[Geri]

At my last onc visit in January he told me that I would need "at least yearly CTs from now on" I assumed that this meant forever!

He's a firm believer in Lovenox helping with the survival rates of sclc so I've been told that this is a "forever" thing - my poor bruised belly shudders at the thought!!

I think he's as amazed as everyone else that I'm still here, but with the LC record I guess he's probably thrilled when someone makes it this long. He did tell me what the risks of a new cancer showing up are, but I'm also at risk for being run down by the beer truck every time I leave home so I'm not worrying too much about that.

Nothing else has been mentioned but when I see him in January I'll ask him what there is available - not sure that I want/need anything from the cancer center at this point but it's worth checking out.

I guess my only survival "plan" at this point is waking up every day.

Geri

[chloesmom]

I wasn't offered any type of survivorship plan, except an outline of the schedule of tests, office visits, etc.

I will say, however, that every medical person that I see quizzes me extensively on each visit about what I'm doing in terms of nutrition, supplements, exercise, lifestyle, etc., and I think if they heard anything that they disagreed with, they would let me know and try to steer me in the direction they thought was better for me.

I also think that if I were to ask, they would all give me appropriate suggestions.

Seems to me that this is a new frontier for the cancer care community. Now that they are getting us healthy again, and we are surviving all this with better quality of life and living longer than ever before, they need to manage all the aftercare issues, such as long term side effects of treatment, nutrition, exercise, healthy lifestyles, etc.

Maybe the information we give them on what we're doing, what supplements we're taking, what we're eating, and how we are living in general will be the cornerstone of the survivorship programs they will offer in the future.

Look at how things have changed in recent years in survivorship of heart surgery. They used to tell people to go home and just rest, don't overdo. Now they're telling people to exercise, be active, and do anything but DON'T just go home and rest.

Cindy

[carolhg]

I was told to come in for my scans and bloodwork. That was it. I would have liked some information on anything that I can do to help prevent recurrence and help with 'survivor fears' and 'hyper-vigilance'.

Carol

[Tom K]

I am still getting used to the idea that I am going to live longer than the stats said I would. But every day, I wonder if today will be day the reoccurrence surfaces. My doctor and I did discuss the follow up protocols in terms of scans and frequency and what symptoms I should report to him etc. But there were no discussions about nutrition or the anxiety issues that come with survivorship.

[blaze100]

Hi Joanie, I remember asking my lung doc what was the plan if it came back....and he just said that it depended on where it came back, and that we would cross that bridge then. My onc gave me a handout on which veggies to eat. I had counseling at the hospital once or twice a week during treatment.

You know the cardiac rehab program is much better. Three times a week we had a class about what to eat, purpose of various drugs and the side effects, what heart symptoms to watch for, what to do if certain symptoms come up, and how the heart works, etc. Then we all went to the exercise room where we learned how to work out and most importantly what level of exertion is best. That lasted for 18 weeks.

The charge was about $120 per day.

I think there is a "market" for cardiac follow-up because it is covered by medicare. I don't think "cancer prevention" programs are covered by medicare. Let's face it, medicare payments drive these things.

Barb

[blaze100]

This is the episode #24 video of Dr. Ramsey of Seattle's Fred Hutchinson cancer clinic. They are starting a "Cancer Prevention Clinic" which would seem a natural follow-up for survivors.

http://www.yourcancertoday.com/webstrea ... Type=flash

Barb

[Maryanne]

No Joanie, Joel was just told the usual, CT every 3 months. That was it.

They do have a nutritionist at the facility who talks about nutrition at the time of treatment but after treatment, no.

Maryanne

[Nushka]

The day I was released from my oncologist I asked about "what next". Is there anything I can do to stay healthy?

He replied that I should don't smoke,do eat a balanced diet and be happy. I asked about follow up scans etc and he said that my PCP should handle that now and that if anything else came up to get back with him. I asked about the chances of it coming back and he said I had about a 1% higher chance of a new tumor because I had shown that I was cancer prone but that this cancer was gone.

I still wish I could have just one more CT/PET and brain MRI. It has been since last dec since I had all of it...a few test in between but not an all over deal.

Nina