How do we find a good, relevant doctor for long-term survivors?

royrada

Long-term survivors with significant adverse effects of cancer treatment are an increasingly large population. However, no specialty addresses this problem and patients are often misunderstood. How do you find you caregivers? I moved to Orlando last month having had excellent caregivers elsewhere but have not been able to find anyone in Orlando. I was treated for head-neck cancer 20 years ago with 70 grays of radiation and am now dying from the radiation adverse effects. My preferred method for trying to find a good, relevant doctor is to do a search of the medical literature for papers published on my radiation adverse effects by people in my geographic area (PubMed makes such a search easy to implement). That literature search method has failed me in this case. I also visited the largest cancer institutes in the city and talked with numerous staff about pointers to caregivers without success; in short the oncologists treat cancer and are usually uninterested when the patient is cancer-free and is many years post-treatment, although the patient's problems are due to the cancer treatment.  I've had some email exchanges with faculty in Orlando and in my previous states, but they point me to the major cancer centers which are 100+ miles from my home (Moffett in Tampa, Shands in Gainesville, or Univ Miami).  In my previous states my care came from faculty at medical schools and that would be my preference again, but the only medical school in the Orlando area is inadequate. My next thought was to go to the online patient population online. I was once active first in the ACOR neck cancer group and then the ACOR long-term survivor group, but those groups are no longer active at ACOR. I phoned the American Cancer Society, but the phone answerers were not able to help.  What do you suggest a person do to find good, relevant care?

royrada

May I ask another question on my own topic, although no one else has replied? When I started on this cancer survivor journey 20 years ago I was 51 years old, but should I consider now geriatric care? Radiation for many cells changed the genetic material enough to have the cell malfunction but not die. The most compelling explanation that I've read for my case of radiation to the neck is that the radiation damaged the inner cell wall of the capillaries leading them to leak fibrin into the capillary and thus ultimately completely occlude the capillary. That leads to death of the organs served by the capillaries, such as the nerves passing through the neck, and thus causes a wide range of significant secondary damage. Could this be considered accelerated degeneration or aging? Why not see a doctor whose patient population suffers primarily from degeneration, namely the geriatric population? Maybe gerontologists are primarily thinking of exhausted heart muscle, degenerated joints, and ischemic brains, but would they understand a patient dying of cancer treatment? Other than oncologists who are too busy with treating cancer itself, what other specialty addresses what ails a person like me? Would you suggest instead 'Hospice and Palliative Medicine', 'Clinical Genetics', or 'Rehabilitation Medicine'?

Abby76

If you ever find the answer let us know. I have the same feelings you do. Who can explain my health issues due to the cancer treatment.

I think patients are just dropped after cancer has been treated.

royrada

Thanks for the reply. I had an answer in Denver, Colorado in the form of Dr Linda Overholser whose specialty was childhood cancer survivors but was willing to be my primary care dcotor though mine was not a childhood cancer. In Orlando, Florida, I now see a gerontologist as my primary care doctor. The University of Colorado Health Center had a major cancer center and was, for instance, able to provide me a cardio-oncologist who specialized in adverse effects of cancer treatment to the heart. I have seen a cardiologist in Orlando but the person did not want to deal with adverse effects of cancer treatment. The challenges to care for long-term adverse effects of cancer include our relative small numbers and the many, diverse body systems affected by the cancer treatment.

Abby76

With all the harm chemo and radiation can cause, it makes me wonder why they now believe after surgery and no sign of cancer you should have more radiation and chemo in case there are small amounts of cancer which is left that no one can see. If I am correct, I think this only is good for about 5% of cancer patients after surgery. Another thing I am very upset about is that the oncologist gave me no information on what the chemo and radiation could do. If I had known, I would have played wait and see if it comes back. Instead I tried to play it safe and lost a lot of my health. Never again. Thankfully I am in the 70's group and I would rather give up than fight the side affects knowing it's to hard to find help.

royrada

When you say, "Thankfully I am in the 70's group and I would rather give up than fight the side affects knowing it's to hard to find help", do you mean that your age is between 70 and 79 and do you mean that because of old age and the difficulty of getting care that you 'give up' rather than fight? Does 'give up' mean to seek no medical care? When I tell a doctor that I don't want treatment, the doctor offers me a referral to palliative care.

Abby76

It means I am in th age group of the 70's. I don't think old age has played a part in getting care from chemo and radiation. I don't think the care is there. Yes I know I can get a referral to pallative care or even hospice if it comes to that. When I say I won't seek medical care it means medical care to try and get rid of the cancer. Not medical care for comfort or a cold or something. Perhaps I am not being totally fair. I know if you have something real serious going on the Drs. will pay attention. But if your suffering from something such a fatigue, numbness and stuff like that forget it.