Long Term Follow Up?
I was reading an abstract from Endocrinologist today, written by physicians from MD Anderson, about the importance of long term follow up in differentiated thyroid cancers (a rare form of thyroid cancer). The abstract discussed several cases that had recurrence after 10 years of NED (no evidence of disease).
It said “Factors known to influence risk of recurrence (age at diagnosis, initial tumor size, local invasion, metastatic disease at presentation, extent of initial surgery, and radioiodine treatment) were assessed in our patients. In each case, failure to continue close follow up led to delays in diagnosis of disease recurrence.” The point here is that early detection of recurrence could increase a person’s ability to survive.
Another article that I read today was discussing the mental mindset of the cancer clinician; where the primary emphasis of their practice is to detect and treat. Long term follow up has not been a priority. It was long believed that if you survived your cancer for over 5 years, you were ‘cured’. Statistical data was only kept for 5 years. I am not sure who came up with this time limit, but they obviously did not treat rare cancers.
In the rare cancer world, it is not uncommon to have a cancer that is indolent (slow growing) and resident in your body for many years prior to initial detection. And, the same can happen with recurrence or metastasis. I have been advocating for rare cancer patients for 8 years now and I find this to be true for several cell types.
Let me bring this back into my own personal experience. When I was diagnosed, I had an excellent medical oncologist who told me that he honestly did not know anything about my cancer, and could not spend time doing research on it. He needed to spend his research time on cancers that would help the most number of patients. But, he told me that he would read any research papers that I brought to him.
We had a wonderful relationship, based on open and honest communication. And, I felt that I was getting good care. He told me that I would need to be followed by him, or someone else, for the rest of my life; because of the slow growth factor of my cancer and the unknowns left from the lack of long term follow up data.
I had to move. I have seen 3 oncologist over the last 6 years in my new area. Two of them blatantly lied to me during my followup appointment. They both said that they had treated many, many women with my cancer. One said he had treated over 50 (and he was a young man). I highly doubt that, since in the year 1995, there were only 33 cases of my cancer diagnosed in the entire United States. I never went back to either. For me, honesty is mandatory in a doctor.
The last one, I have stayed with for 3 years. On my first visit to his office, I saw him. Last year, I was supposed to see him, but I saw the nurse practitioner. She had absolutely zero information on my type of cancer. The only follow up test she order was a blood test (my cancer cannot be detected this way!). She didn’t have a clue on what tests were approprate for my follow up. I just called to make this year’s follow-up appointment and was told that I would need to see her again. The office girls at this practice have been told that only new patients can see the oncologists.
I have kept data on quite a few women with my cancer over the last 8 years. Although metastasis is uncommon; in the women who had it happen, it did not show up until their 7th to 8th year. So, I take this 8th year of NED seriously and I want to see a doctor, not a nurse practitioner. I want appropriate follow up procedures ordered. But, I can’t. Who is responsible for this, I don’t know, and I don’t care.
Statistical data on many rare cancers is far too small to come up with any conclusive info on recurrence and metastasis. In my humble opinion, all rare cancer patients should be followed up ‘over the long haul’. If for nothing more than the pure study of that rare disease.
The most common body site for my cancer to return is the lungs. So, I went to my primary care physician and asked him to order a CT lung scan, with contrast. He did and I am awaiting the results. I will not go back to that medical oncologist. Maybe they don’t take my cancer seriously, but I do. I know that I might have a fighting chance against it if it is rediagnosed at an early stage. I would like to give myself the ‘best chance’ of staying alive long enough to enjoy my grandkids!
One last note: Thank You! to the doctors at MD Anderson for taking the time and effort to take a long term view of rare cancers. You get the Hero award of the week.
Take Care, Sharon www.rare-cancer.org