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I too was contacted by a social worker who handed me a sheaf of paper with--often--outdated phone numbers and public assitance offices where you either can't get through on the phone or have to wait for months to get services. And I can afford my own services.
I'm just disappointed, I guess based on my own expectations which are based on my general reading in the subject area, that there would be some emotional support, and some mention of how I might benefit from a better diet or an exercise program. I have done these things on my own, but I don't think these things are yet a part of most followup processes, unless I'm wrong about that.
It's like when my mother, before she died, had surgury for a bowel obstruction and her first solid meal in the hospital included a pork chop. I was livid.
My point is, I suspect it's still the case that the standard processes have not caught up with what one could characterize as a better treatmeant, or wholistic treatment.
If you are not happy with the outcome then find another doctor or clinic. You are responsible for your own health.
SD4020 - I think you're misreading the OP. He's asking about long term, holistic follow up care beyond the blood work, scan, exam routine of the oncologist. The question is completely irrelevant to type of cancer or treatment.
I had to fight to get more complimentary support (ie. not just standard follow-up office visits, blood work, and scans). There was a distinct difference between the attitude toward that kind of long term care when I got second opinions at one of the best cancer hospitals in the country, versus the treatment I received at the smaller hospital where I got chemo (but still very highly regarded - just overshadowed by many local Boston hospitals).
My cancer center had a nutritionist and a (very overworked, part time) psychiatrist on staff. I would seriously recommend looking into the same at your center. The "empty" feeling that probably prompted this thread is really normal - you get used to the constant motion of surgery, treatment, and regular visits with your onc and suddenly you're done and now won't see your onc for another month (or more!). It's actually very common for cancer patients to get depressed following treatment, so it's important that you take care of yourself. Unfortunately, these elements are often out of the oncologist's purview - their main job is getting you well. You have to ask rather than expect it to be coordinated for you. It *should* be more coordinated for you since you are I'm sure already overwhelmed, but it's a call you're going to have to make for yourself.
SD4020 - I think you're misreading the OP. He's asking about long term, holistic follow up care beyond the blood work, scan, exam routine of the oncologist. The question is completely irrelevant to type of cancer or treatment.
I had to fight to get more complimentary support (ie. not just standard follow-up office visits, blood work, and scans). There was a distinct difference between the attitude toward that kind of long term care when I got second opinions at one of the best cancer hospitals in the country, versus the treatment I received at the smaller hospital where I got chemo (but still very highly regarded - just overshadowed by many local Boston hospitals).
My cancer center had a nutritionist and a (very overworked, part time) psychiatrist on staff. I would seriously recommend looking into the same at your center. The "empty" feeling that probably prompted this thread is really normal - you get used to the constant motion of surgery, treatment, and regular visits with your onc and suddenly you're done and now won't see your onc for another month (or more!). It's actually very common for cancer patients to get depressed following treatment, so it's important that you take care of yourself. Unfortunately, these elements are often out of the oncologist's purview - their main job is getting you well. You have to ask rather than expect it to be coordinated for you. It *should* be more coordinated for you since you are I'm sure already overwhelmed, but it's a call you're going to have to make for yourself.
I have told people here and elsewhere you are your own advocate when it comes to your health.
SD4020 - I think you're misreading the OP. He's asking about long term, holistic follow up care beyond the blood work, scan, exam routine of the oncologist. The question is completely irrelevant to type of cancer or treatment.
I had to fight to get more complimentary support (ie. not just standard follow-up office visits, blood work, and scans). There was a distinct difference between the attitude toward that kind of long term care when I got second opinions at one of the best cancer hospitals in the country, versus the treatment I received at the smaller hospital where I got chemo (but still very highly regarded - just overshadowed by many local Boston hospitals).
My cancer center had a nutritionist and a (very overworked, part time) psychiatrist on staff. I would seriously recommend looking into the same at your center. The "empty" feeling that probably prompted this thread is really normal - you get used to the constant motion of surgery, treatment, and regular visits with your onc and suddenly you're done and now won't see your onc for another month (or more!). It's actually very common for cancer patients to get depressed following treatment, so it's important that you take care of yourself. Unfortunately, these elements are often out of the oncologist's purview - their main job is getting you well. You have to ask rather than expect it to be coordinated for you. It *should* be more coordinated for you since you are I'm sure already overwhelmed, but it's a call you're going to have to make for yourself.
Yeah; I think that outcomes would be more positive if wholistic treatments were included, as a matter of course. I think they are generally not, though in Houston or other places, things may be different. Probably the trend is going to be more wholistic care, but it's such a shame, IMHO, that this is not happening now.
I saw on tv where in one center, massage is given ordinarily, as a part of treatment. I don't personally like massage -- it creeps me out, for some reason -- but it would be nice to have access to other treatments. Here, the head of the pyschology department was called to visit with me while I was taking a chemo treatment, and she was an older lady (my age or somewhat less old), who stumbled around verbally and clearly had some unrecognized--by her--short term memory issues. She offered an appointment with the staff therapists, who are college PhD students. I went twice, but it was not helpful and we ended up talking about her issues! The yoga, the one woman here who offers that, was kind enough to come to my house, but she had no idea what I was or wasn't capable of at the time, and actually hurt me. She was an eccentric with very little training, to be frank.
So here, at least, there is not the sort of services that I was expecting, I guess is my point.
I'm going to play devil's advocate here. I know following a good diet and exercising is good for you. But I think it does depend on the kind of cancer. For some types of cancer, like breast cancer, which I have, being a healthy weight is proven to reduce diagnosis. But for other types of cancer, there is no link between diet/exercise and cancer that has been found, so perhaps it is possible this is why it was not recommended to you?
I don't need to hear from my oncologist that I should lose weight or eat better. I know I should - what American does not know this?
As for emotional support, most cancer centers do offer support groups and a social worker. I think that is great. For me though, I want medical care from my cancer center. I have friends and family for emotional support, and I found an online support group that has been a godsend. I agree with the above poster that pointed out, we need to advocate for ourselves, instead of relying on our doctors to do everything for us.
My cancer center offers multiple support groups, yoga classes, a masseuse, a registered dietician, and a licensed clinical social worker who is an oncology specialist. All are readily available to me, but I don't use any of them. So m.e.bradshaw, maybe you need to come to my cancer center.
I'm going to play devil's advocate here. I know following a good diet and exercising is good for you. But I think it does depend on the kind of cancer. For some types of cancer, like breast cancer, which I have, being a healthy weight is proven to reduce diagnosis. But for other types of cancer, there is no link between diet/exercise and cancer that has been found, so perhaps it is possible this is why it was not recommended to you?
I don't need to hear from my oncologist that I should lose weight or eat better. I know I should - what American does not know this?
As for emotional support, most cancer centers do offer support groups and a social worker. I think that is great. For me though, I want medical care from my cancer center. I have friends and family for emotional support, and I found an online support group that has been a godsend. I agree with the above poster that pointed out, we need to advocate for ourselves, instead of relying on our doctors to do everything for us.
My cancer center offers multiple support groups, yoga classes, a masseuse, a registered dietician, and a licensed clinical social worker who is an oncology specialist. All are readily available to me, but I don't use any of them. So m.e.bradshaw, maybe you need to come to my cancer center.
I think the bolded is the key part. You have friends and family - I believe that SD is married. I don't presume to speak for the OP, but in my case, I didn't have either while going through treatment. My family and most of my friends checked out, and since I was diagnosed 6 months after graduating from college, my friends were spread out all over the world. None were local.
I needed a LOT more support from my cancer treatment staff than the average person who had friends and family accompanying them to appointments, driving them around, taking care of them emotionally, logistically, and financially. If you don't have a support network, it doesn't matter who you are or how old you are - you need a lot more help.
And I'll be quite honest - I laugh when people tell me to be an advocate for my own health. I fought for 5 years for a diagnosis - and was stage IV by the time I got it. I don't have TIME to be an advocate in between working full time, trying to recover, getting the 10-12 hours of sleep I now need, and trying to stave off bill collectors. I am depressed, exhausted, and need a hand to hold. And honestly, if my medical center did not have people doing this and making sure I scheduled appointments, then I likely would not have even been back for a checkup in the past year since entering remission.
I wonder if I'm alone in this: I recently had surgery for cancer, and I think the surgery was probably brilliant, and worked, and the chemo afterwards was probably called for, though it really did some damage to my immune system. But I was disappointed to find out that there was no follow-up care whatsoever, aside from periodic doctor's visits: no recommendations, in other words, for diet, exercise, emotional support.
Is this normal? Or is it that I'm just in some little backwoods community (backwards, as well), which does not offer the full compliment of support which is offered elsewhere?
What services do you feel you should have had that you did not receive?
Did you ask about diet, exercise, and emotional support?
Is there some reason to think you should be on a special diet or avoid exercise? Did you ask?
Being treated for cancer is stressful. The psychologist you talked to was not helpful. Ask the doctor who treated your cancer to refer you to the best psychiatrist he knows.
Did you talk to your doctor about your concerns?
Edited to add: services like massage or yoga are not really there to treat the disease. Some people find it does help with the stress. But you cannot just sit on your tush and wait for someone to help you if no one knows you need help.
It's like when my mother, before she died, had surgury for a bowel obstruction and her first solid meal in the hospital included a pork chop. I was livid.
My point is, I suspect it's still the case that the standard processes have not caught up with what one could characterize as a better treatmeant, or wholistic treatment.
I had surgery for a bowel obstruction. After a few days I felt good enough to eat an entire pig! You say "first solid meal." If it was the day after the operation, probably not a good idea. Several days later and the patient is doing well, the pork chop might be just what the patient needs.
What do you mean by "better treatment"?
The holistic approach may be better for the psyche but probably does not influence the success of the cancer treatment a whole lot.
I had surgery for a bowel obstruction. After a few days I felt good enough to eat an entire pig! You say "first solid meal." If it was the day after the operation, probably not a good idea. Several days later and the patient is doing well, the pork chop might be just what the patient needs.
What do you mean by "better treatment"?
The holistic approach may be better for the psyche but probably does not influence the success of the cancer treatment a whole lot.
In a prospective trial there were 264 breast cancer patients, stage I and randomised to two different follow-up programmes- PG (physician group) and NG (nurse group). The trial period was 5 years. The women in the two intervention groups did not differ in anxiety and depression, their satisfaction with care, their experienced accessibility to the medical centre or their medical outcome as measured by recurrence or death. The analyses were done from different lists representing costs at three hospitals in Sweden according to the principles of a cost minimization study.
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You are responsible for your own health.
