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Follow Up Care after Cancer Treatment


KatieB

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1.What is follow-up cancer care, and why is it important?

Follow-up cancer care involves regular medical checkups that include a review of a patient’s medical history and a physical exam. Follow-up care may include imaging procedures (methods of producing pictures of areas inside the body), endoscopy (the use of a thin, lighted tube to examine the inside of the body), blood work, and other lab tests.

Follow-up care is important because it helps to identify changes in health. The purpose of follow-up care is to check for recurrence (the return of cancer in the primary site) or metastasis (the spread of cancer to another part of the body). Follow-up care visits are also important to help in the prevention or early detection of other types of cancer, address ongoing problems due to cancer or its treatment, and check for physical and psychosocial effects that may develop months to years after treatment ends.

All cancer survivors should have follow-up care.

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What is the most stressful thing to you, the survivor, about follow up care? Is it scanxiety or the actual process of getting the scans (if you are not in a comprehensive cancer center) or is it the stress that's placed on your families? Please share!

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The only stressful part to me is the scanxiety itself. The CT scan (which I have done at our local hospital) itself doesn't bother me. The rest of the follow-up care I'm thankful for. My family doctor is so thorough with me that I always feel that if anything else was wrong with me he would find it. I trust him immensely.

Paulette

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They really make it as easy as it can be. I get a little anxious but not like at first. During the PET/CT procedure, I drink those awful (milkshakes), get the shot, and wait. I usually turn off the light and sleep. After the PET part, when they pump in the contrast is when I have an issue. When that guy with the accent from who knows where says breathe, hold it and so on, It's hard while I'm trying not to vomit. It just gags me. Every time I get the CT, I ask them to slow down the pumper. They do, but I still wanna puke. Last time they saw 3 enlarged nodes that they scheduled for biopsy. I admit that made me real anxious. It turned out benign. Biopsies, scans, all the tests are just part of life now. I have learned to accept all this as my new way to be. Oh well....

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I'm kind of feeling like Alan. I don't get sick from the contrast, but I don't like it. For some reason I feel anxious as it is coursing through my body. Feels so strange to be able to feel it as it moves through it. And it makes me think I have to pee. LOL.

As we discussed at the conference in Washington, D.C. We are living with cancer. Whether we are NED or dealing with it, we live with it because of the detailed doctor's attention, extra tests, etc. It is what it is!

Judy in MI

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I get really stressed over my annual visit to my lung surgeon that includes the scan or chest xray. This has been going on for years with me, and while it certainly has lessened over time, it has never gone away.

Cindy

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I really don't stress much over scans. In my mind, they are the verification that I'm still cancer free. I would stress more if I went too long without getting one.

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As previously mentioned by me,the UK does not by routine use CT scans as a follow up.The medical practioners here frown on these tests,I know, as a reassurance to myself I had one done privately,at a cost I think of £500,given the feedback by letter accompanied by a CD of my pics,I presented them to both my GP and Oncologists to ask for their interpretation,frankly they were most annoyed with me,I felt like a bit of a traitor-is their aftercare not good enough, type of feeling came accross.Two items mentioned,1,there is no evidence to support any increase in survivor rates using regular CT scans over a six monthly follow up X-Ray,2.The use of frequent CT scans in the USA are a device to generate money rather than an aid to better patient care.I am only relating their opinion and not my own.Therefore scan anxiety is not an issue here.We do have our six monthly X-ray follow up for five years though following dx,then for some,this can cause a bit of worry.I knew I had an X-ray appointment sometime late March this year,so I dug out my "filed" appointment card on the 29th of March only to read it was on the 28th of March,I did phone to apologise,this did go down like a lead balloon,there are so many people here who fail to keep appointments,I can understand staffs frustrations with the public.They said they would re-schedule me,so far I have heard nothing,just presume they will just move me to my next six monthly?.I just feel so well,I am unconcerned about re-occurrance,well today anyway.

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It is waiting for the scans/xray results that stress me out. I am a little better now. I used to be relieved when I got the results and that relief only lasted about one week and then I would be scared all over again waiting for the next scan and those results.

Carol

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Eric, lots of doctors here cite those studies and don't consider follow up scans worthwhile, too. The studies showed that patients who got recurrences of slow growing cancer survived years anyway, and the poor treatments that were available for lung cancer didn't help aggressive cancers that recurred. But those are old studies, and treatments are slowly improving.

The older studies that were done to test doing annual CT scans on high risk patients (smokers and ex-smokers) before cancer showed the same results, for the same reasons. But the newest study done has shown the opposite, that earlier detection from scans has helped survival.

As treatments continue to get better, study results are likely to get even better. I expect that the next study done on follow up scans will show the same thing, and doctors in other countries will change their standards, and accept follow up scans as standard treatment.

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Thanks Bud,

Your comments have planted a seed that I may finance another CT scan myself.Interestingly,my oncologist commented on the quality of my privately done CT.She said CT scans are pics of slices through your body,the number of slices as they increase,give a more accurate image of whats in the body,the privately done CT scan that I paid for,were made up of far fewer slices when compared to what would be routine in a NHS hospital.Maybe that was designed to undermine futher the idea of going private again?

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Hi,

Eric, I have to say this.....when I asked for a CT scan 4 years ago, my doctor refused to allow it since I had no symptoms. He agreed to an X-ray. The X-ray showed no evidence of disease.

I demanded a CT scan because of my family history. He agreed reluctantly. It showed I had stage IIB lung cancer. Thankfully it was caught early stage, but if I had not insisted on it, I would not be here today.

Judy in MI

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I agree with Judy. Noone knows our bodies like we do. Good for you for insisting. That's what I did in the beginning and I was right, they were wrong. By the way, has anyone looked at Proton Therapy? Google it if you haven't, It's old technology being touted again. Very interesting.

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