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Your lung cancer experience doesn't end as the door closes behind you when you leave the clinic. Most likely, normalcy will creep up on you in the months that follow. Some lung cancer survivors are surprised to find that the end of treatment brings a variety of new concerns and plans. A contradictory mixture of feelings, a changed relationship with the oncologist, perhaps a renewed immersion in ones job, a reassessment of long-range plans, a different physical self-temporarily or permanently-and different behaviors on the part of friends and loved ones all may come about.
This chapter will discuss the emotional and practical aspects of the end of treatment. We will share with you what others have found difficult, surprising, or exhilarating. First, we will outline the physical and medical aspects related to facing ahead at the end of treatment, followed by the emotional aspects, and finishing with the social and professional aspects of adjusting after treatment ends.

In some cases, of course, these concerns overlap. For example, its difficult not to have an emotional reaction to either upsetting or loving things that happen in the workplace, to ambiguous test results, or to the realization that you might require oxygen support, for instance, for many months.

Kathleen Houlihan, a survivor of NSCLC, tells about her anticipation of a happier future:
It's wonderful to be home. When we first got to the Cancer Treatment Center seven weeks ago, I didn't want to leave the building. I felt safe in there, and I couldn't imagine going home. But the last week or two, as I got better and better; I started looking forward to leaving. Now I'm thrilled to be home, with our friends, our "animules," and our kitchen, where I can make all my health foods and power drinks. There's no place like it.

The chest x-ray I had before I left showed the tumor has shrunk down to about the size of a lemon, after starting out looking to me like a tennis ball. And the doctors say it will continue to shrink over the next four to six weeks. I guess there will always be something there, but presumably all the cancer cells will be dead, and what remains will be basically scar tissue. The pulmonologist said the radiation should kill 98-99.9 percent of the cancer cells, and the chemo I'll have over the next five months is intended to kill off the rest. So everything looks good at this point.

Since there is a high recurrence rate for lung cancer, they want me to retum for checkups every three months for three years after I finish the chemo. Then every six months for two more years, and then once a year after that. I believe the checkups will all include MRI, CT scans, and bone scans. Thank goodness for insurance!

We're just trying to get the house back in shape and get back into a routine. Actually, my husband Holt is doing most of the work around here. I'm just trying to take care of myself, and he helps me with that, too. But I'm feeling better every day. It's great to be through with the radiation. It really was tiring. Now I'm napping just once a day. Today I didn't nap at all, but I think I'll go to bed early.

Medical monitoring
Fifteen or twenty years ago, doctors and patients had few choices for verifying that cancer had gone away and was staying away. Now there are blood tests and imaging tools that allow a view-often just a glimpse-of what's going on inside one's body.
These testing tools are both a blessing and a curse. It's true that now we can follow the progression and regression of tumors much more clearly. There are, however, instances of both false positives and false negatives from imaging studies that can only be evaluated accurately within the framework provided by additional testing or a second biopsy.

Follow-up tests
All patients treated for lung cancer need follow-up surveillance for recurrent disease or the development of second cancers. As you finish your treatment, your doctor will discuss when to return for follow-up visits. Ask your doctor about the type and timing of these tests, which vary, depending on individual factors, such as the type of lung cancer you had and what organs were affected. Follow-up visits most likely will include a physical examination, a discussion period for you and your doctor to share concerns, and a series of tests to confirm that you are disease-free.
Kathleen Houlihan describes her follow-up testing and the continued support she's receiving from health professionals:
During my follow-up visit last week I had my port "accessed" and blood drawn at the infusion center that night, followed by a chest x-ray and CT scan and appointment with the radiation oncologist Wednesday morning. My left shoulder is just now getting stiff from the radiation I had all those months ago, but stretching exercises and massage should correct the problem.
Then we saw my main doctor; the medical oncologist who went over the films. The tumor has shrunk a lot even since last October! Great news. Looks like there's very little of it remaining. And the CEA tumor marker is still well in the normal range at 1.7. Couldn't be better! We also saw my pulmonologist, who agreed I was doing well, but who reminded me I'm at high risk for a recurrence, as well as for another primary lung cancer. That's the reason for frequent checkups, including the bronchoscopy he did the following morning, after which he said my bronchi looked "clean as a whistle!" After the bronchoscopy Friday morning, we had lunch and then I rested, recoveringfrom the light anesthesia, while my husband Holt ran errands and loaded the car.

On Thursday afternoon, I saw my naturopathic doctor and reviewed my diet and supplements and the various tests we're going to do now to see if I need any detox or whatever. That was followed by a visit to the physical therapist for my shoulder.
I forgot to mention the nutrition class Thursday morning, given by
Dr. Patrick Quillan, author of the book "Beating Cancer with Nutrition. " Dr. Quillan developed the nutrition program in Tulsa and appears in the weekly nutrition class about once a month.
Sometimes tests and imaging studies are delayed until a few months after the end of treatment because radiotherapy and many anticancer agents continue to have a tumor-killing effect for several months after they're used. Thereafter, imaging studies, x-rays, bronchoscopy, or blood tests may be repeated every three months for a number of years, then every six months for a number of years, then once a year for a number of years, then every few years. These tests might also be performed after surgery, but before radiotherapy, and so on, to assess which treatments are working and to aid in changing the treatment plan, if need be.

A male survivor of lung cancer describes his testing and the long-term effects of his treatment:
I get a CT scan every three months. Last two scans have shown me in remission. I'm still dealing with shortness of breath and fatigue.

Kathleen describes some new tests she feels she was fortunate to have:
We're back from the trip to Tulsa for my checkup. I had a newfangled procedure called a NeoTect scan instead of a CT scan this time. My pulmonologist, who ordered this scan, says it's a "poor person's PET scan." It is supposed to detect malignant lung masses, but apparently it also detects inflammation. My scan detected "something" at the original tumor site and in the mediastinum, the area between the lungs. So what is it, malignancy or inflammation? Because I'm doing so well, with no other symptoms, and because the areas in question are within the field that was radiated, my pulmonologist and my medical oncologist both think that the scan is showing inflammation from the radiation treatment last year.
I guess the only other diagnostic procedure that could address this question would be a PET scan, which is very expensive and apparently not indicated at this point. So we'll just wait and see. I'll have all the scans (CT of chest and abdomen, bone, and brain) at my next threemonth checkup in October; and we'll see what they show. Hopefully they will all be clear. My tumor marker (CEA) was even lower than it has been, at 1.2 (normal is less than 3), which is more reason to think the scan was not showing any malignancy, so I'm not too worried about it. It would have been nice if the scan had been clear; though.
Kathleen had also read about another test, which her insurance covers, which she took for peace of mind:

Today we got the best news we've had in a year and a half-the results of my latest cancer test came back normal! It's called the AMAS test, for Anti-Malignin Antibody in Serum (htrp.z/www.amascancertest.com). The claim is that all cancer cells produce the malignin antigen, and this test measures antibodies to that antigen in the blood, thereby detecting cancer up to eighteen months sooner than any imaging studies. So my local doctor (a friend of ours) drew blood on Tuesday, and my husband Holt worked it up in his office (let it sit for a half hour to coagulate, then let it sit for an hour in the fridge, then spin it down in the centrifuge, then pack it in dry ice) to send via FedEx to the lab in Boston that is the only place that does the test.
The test was developed by Dr. and Dr. Bogoch, who also did all the research on it, and it's their lab that does the test. I read about it in several books on alterative approaches to cancer. I guess the test is not widely known or accepted because it is proprietary and only done at that one lab. But the research looks good to me and, more importantly, to Holt, my husband, the doctor. It's supposed to be 99 percent accurate. And mine came back normal! We take that to mean that I don't have any malignin antigens in my blood, which should mean I don't have any cancer cells in my body.

If all this is correct (please, God), I think this test is more meaningful than CT scans, brain MRIs, and the like. Just because they don't detect any cancer doesn't mean that it's not there in as-yet undetectable amounts. It seems that this Simple $135 test (which my insurance covers, as does Medicare), plus FedEx shipping, should be able to replace all those other costly, uncomfortable, radiation-laden tests that are used every few months for monitoring cancer patients. I guess I don't have quite enough confidence in the AMAS test yet to abandon all those others, but I sure like it (with these results) as a supplementary measure.

It's possible to have questionable liver lesions appear on imaging studies after certain chemotherapies, or to have suspicious lung spots appear after irradiation of the chest. These phenomena can mimic relapse or spread of disease (metastasis), but PET scanning or biopsy may prove that these are not disease.
Many oncologists who treat lung cancer consider five years of cancer-free survival to be the equivalent of a cure.
Regardless of the schedule of your follow-up visits, new or returning symptoms must be taken seriously and reported to your doctor immediately. Never assume that your doctor will think that you're worrying too much. It's always better to err by communicating too much instead of too little when it comes to aftercare.