I've been without an oncologist for about three weeks now.
That's right, I do not have a specialist who is assigned to assist me in my treatment for cancer at Group Health. My former oncologist left GH abruptly at the end of March. At the time of his departure, I spoke with a friend of mine, L, who is a gynecological surgeon at Virginia Mason. She suggested because of the relationship between Group Health and Virginia Mason, that I ask to be referred to a VM oncologist for treatment. She recommended Dr. O. So I took her recommendation to heart and emailed the head of oncology at GH. He was on vacation and I received an 'out of office' response directing any questions in his absence to Dr. F. So I forwarded my email to Dr. F. He wrote me back and said that Dr. O at VM was an esophageal oncologist, not a lung cancer specialist, and thus I could not be referred to him. Fair enough.
I waited several days for the head of oncology to return and then emailed him, mentioning my correspondence with Dr. F, and requesting a referral to Dr. M at Seattle Cancer Care Alliance because he WAS a lung cancer specialist. Head of oncology responded that in order to get a referral, I had to get the approval of the business office. Ok.
Next day I called the business office of Group Health and was told that I needed the referral to come from my attending physician. Ok.
I emailed my primary care physician, requesting the referral, and received a response that I needed to get oncology to make the referral.
Once again, I emailed the head of oncology requesting the referral. Head of oncology emailed back that I needed to get the referral from the business office.
Does anyone see a problem here?
So. I decided to email Dr. G, VP for Group Health. Here is the text of my email to him:
Dear Dr. G,
I am writing to you because I don't know where to turn at this point.
As you may recall, I am a friend and former patient of C. She sent me to you late last year when issues with my lung cancer care at Group Health came up, and you were of great assistance to me at the time.
I now have another issue and am turning once again to you for help.
My treating oncologist, Dr. N, has left Group Health. I was only recently made aware of his permanent departure. L M, a friend and a gynecological surgeon at Virginia Mason suggested that I request Virginia Mason oncologist, Dr. O, be put in charge of my care. I raised this issue with Dr. F last week in an email, because Dr. C was out of the office, and Dr. F responded that Dr. O was not a lung cancer specialist but rather dealt with esophageal cancers. So I wrote to Dr. C and asked if I could be referred to Dr. RM at Seattle Cancer Care Alliance, as he was a lung cancer specialist. Dr. C responded that this was an issue I would have to take up with GH's business office. So I called Group Health's business office and was told that a referral had to come from my GP. So I emailed Dr. Mc and requested that a referral to Dr. M be made, and I was told that I had to get such a referral from the oncology department. So again, I wrote to Dr. C and requested a referral. I then received an email from Dr. C that I had to get approval from the business office.
So we have come full circle. And I am no closer to knowing whether I can have my case referred to Dr. M or not. Frankly, I am feeling abandoned by the health care folks at Group Health, yet again. If I have gone to every single place I have been referred to and no one has given me an answer. If the answer is no, then just say so. But it seems to me that if a referral were made by oncology, that would suffice for the business office when the bills came in. At least that's how it works at Regence, where I have a friend who works in the administration there.
I am currently not under the care of any oncologist and I would like for that state of limbo to end. Dr. C seems to think that the oncology department at Group Health is sufficient to treat my lung cancer, but I have some issues with that. For example, there has been no genetic testing of my tumors as Dr. M recommended when I had my second opinion consult with him in October, 2009. And last week I read in Cure magazine that genetic testing should be employed right off the bat, when devising treatment for lung cancer. I am currently on Tarceva as a second line treatment since the first line chemotherapy was revealed to have failed in a December ct scan. The Tarceva was shrinking or holding the tumors' sizes steady per the ct scan in Feb. But my prescription of Tarceva was sort of dumb luck in that there had been no testing of the tumors for the EGFR mutation. I would think that an oncologist familiar with lung cancer and the most recent protocols for treatment would know how critical genetic testing was to successful treatment, and would have suggested this at the outset of my treatment.
So, Dr. G, who at Group Health should I direct my questions to concerning a referral to Dr. M for treatment of my lung cancer?
That email was sent April 7. The next morning, I received the following from Dr. G:
Thank you for taking the time to write. First, please know I am sending you gentle thoughts as you struggle with your cancer. I am sorry that you are feeling abandoned and will work on trying to resolve this for you today.
That was hopeful, I thought.
So I waited. And waited. And waited. Finally on April 14, I sent the following to Dr. G:
Dear Dr. G,
I realize that these things can take time, but time is relative, particularly when one is suffering from stage III/IV lung cancer. You did mention last Thursday that you were trying to resolve it that day.
I look forward to hearing from you.
I have heard nothing from Dr. G.
However, on April 14, I did receive in the mail a form letter, probably addressed to all of Dr. N's former patients that informed me that I needed to get a treating oncologist and that all the Seattle oncologists were pretty booked up with patients. Therefore Dr. C, the head of oncology, was recommending that I sign up with a Dr. G, who is a great oncologist, except she is based in Tacoma, although she was moving to Seattle sometime--as soon as they found a replacement for her in Tacoma.
I just feel so special.