Linking you to resources and support in the lung cancer community!
Survivorship Plan article in CURE magazine
I was just reading this months Cure magazine and came across an article on a man and his trials about knowing what his plan should be for his future survivorship,
We get so wrapped up in beating this cancer and being our own advocates while in active treatment. Trying to figure out if the medico's opinions and such about treatment are the way to go. Do we try alternatives, surgery, chemo, radiation and so on ? You can get burnout after a while.
I know after I had finished treatment and was just left swinging in the breeze as far as a long term plan went, I just didn't know what to do. The medical professionals all tell you what they think about the way to cure you is but after then what?
The only advice I received was during treatment from my primary care physician who said that as time goes by we as patients have to be aware of the effects of some of the treatments we have had. Like not only recurrences of the original cancer but secondary cancers that might come from say radiation treatments and other procedures like x-rays, ct scans, pet scans, chemo drugs just about anything they do for us. I don't want to sound like a doom slayer but we all have a right to know what comes next and they should be able to tell us what we should be looking for. What professionals do we need to keep seeing and which ones don't we really need to.
As we all know and have to think about now is cost of health care. How much do we need to spend? Or maybe how much does it cost to have unnecessary tests and procedures. I know I want all the tests I need but not the ones that we don't have a reason to have. So the doctors don't have to worry about malpractice rates go up. I mean did any of us think that cancer was going to get us? It is always the other guy right? I do want to be safe but give me a plan to follow.
As this article says some of the major cancer centers are now starting to see the need for survivor plans and they have set up groups to gather information together for survivors. More and more of us are surviving thank God and living beyond the five year mark. This is a needed aspect of care we need. Briing it up the next time you are in for an office visit to the oncologist or your primary care and see if they have any info.
On a final note Cure magazine is an excellant source of info and its free to anyone going through or who has been through cancer treatment. You can go to www.curetoday.com and subscribe. More knowledge is a wonderful thing.
God bless and good luck to us all,
John
Views: 83
Replies to This Discussion
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Permalink Reply by DavidatpMOD on
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Thanks for the post John. I read that acticle also and am very interested in finding out more about the issues we face after remission/cure. After going through chemo and radiation we are definately at increased risk of other types of cancer getting us. At my current point in my battle with the "C" word, I am 80% likely to not get a recurance of my former cancer but am much more likely to get another form. It's an interesting and somewhat alarming subject. Good luck, God bless and keep the faith...
David
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Permalink Reply by Carolyn on -
Hi John,
Thank you for telling us about the magazine. I just signed up for it. There is so much I don't know. I am really glad I found this site. I am learning and keep on learning. My daughter had a double mysectomy 3 years ago, I had lung surgery last Dec. I feel she is much more informed about things then me. In fact I know she is. Thank you for this information.
God bless
Carolyn
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Permalink Reply by Eshively on -
The lung cancer I have now (NSCLC adenocarcinoma) is most likely the result of radiation treatment I received for Hodgkin's Disease back in 1974, I'm told. They can't give me radiation now, because I received so much back then. I am getting casplatin and navelbine. I'm about to turn 62, so I will consider myself blessed if I live some more years and spend time with my first grandchild, who is due in January.
Eric
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Permalink Reply by bronie2MOD on -
Great, great info John..just to let you know and others here, that here on long Island, suffolk county in particular, there are several programs up and runnng addressing the transition from diagnosis to survivorship inclusive of the many issues you've described. I would suggest to all that if these are NOT in place in your areas of healing communities, putting them into practice would be a goal..let me know if I can be of any help w/this..it would be my great pleasure..Tonie (AKA bronie)
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Permalink Reply by John H MOD on -
Hi everyone,
David, it is something we all need to know about. Good luck with your battle and God bless.
Carolyn, I'm glad you found us too. There is strength in numbers. I 'm really happy to hear your are gaining some much needed info from us. It is nice to know you aren't alone in the fight. God bless and good luck.
Eshively, Congrats on soon to be a grandma. This is exactly why we need to know what to look for and where it cause problems. I'm sure you have quite a few years to go and the new grandbaby is one good motivator to stick around for. God bless and good luck.
Tonie, so good to hear that the word is starting to get out. I am out of the loop so to speak because it has been so long since I was in treatment. I'm not complaining mind you but my life would have been a lot less anxiety filled if I had had more knowledge in the beginning. We go on as always and keep putting one foot in front of the other. God bless and good luck my friend,
John
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Permalink Reply by Carolyn on
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Hey John,
I am a great grandma again. yea She is beautiful and everyone is fine. Thank God. I talked to her in the hospital and told her I would have to stay around so we could get to know each other. Don;'t know what I would do without my grand babies.
I go to lung dr. today, not breathing to well during day time. On oxygen at night.
Don't know if I will have to do oxygen day or just inhalers.
Take care, and God bless
Carolyn
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Permalink Reply by gerry on
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I too live in Suffolk county and finished treatment at the end of May. I would much like to get info regarding survivorship programs. You feel all alone at times, not have a long term treatment perspective. And only those that have walked in your shoes can know how you are feeling. Thanks. Gerry
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Permalink Reply by bronie2MOD on
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Gerry, hello neighbor! Well in answer to your question, UH @Stony Brook has a cancer center that is in the process of developing such programs; they've been in receipt of a number of grants. In addition, the hospital offers a lung cancer group, in place now. I would suggest you contact Stony Brook's Help Line @ 631 444-6000 for more information. Good luck with this part of your journey! Best... Tonie
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