After spending a day and a half on the phone with my oncologist’s office, UCLA and my insurance provider, I have decided the following: I will skip the Herceptin treatment this week (since my oncologist refuses to allow it, and since I can no longer spend my time and energy – of which I have little – on fighting with him any longer). I will then resume Herceptin next week – after surgery – with or without my oncologist’s permission.
UCLA called my oncologist to try to convince him to allow me to have Herceptin administered this week. As was expected, he did not budge. In fact, he did not take their call and instead his physician’s assistant took the call on his behalf. UCLA called me back and explained that they got no where with my oncologist.They asked his PA to get him on the phone, he was “unavailable”, so they asked her to ask him to consider their explanation of why I should stay on Herceptin . . . but, he said no to approving a Herceptin treatment for this week.
So, UCLA said that while it would not be their course of treatment to have me skip a dose, they said that skipping one week was not going to be harmful and that I could resume the week after surgery. They apparently were able to convince my oncologist to “consider” allowing me to resume Herceptin the week after surgery.
Personally, I believe that is just his getting UCLA, and me, to go away – and then he can tell me after surgery that he doesn’t feel I should resume Herceptin at that time. I know where he is going with this, such arrogance. He is a control freak that is for sure. He doesn’t feel it appropriate to follow what the word’s leading expert on Herceptin treatment advises. Nope, he is apparently smarter than the scientists who developed and have researched and tested this drug since 1991.
Here is what I have since figured out. The whole reason I am even having this fight about getting Herceptin the week before surgery is because at my treatment center they do not distinguish in their appointment records between a Herceptin Treatment and a chemotherapy treatment. Instead, each appointment is just listed as a “treatment” or, TX. On Thursday of last week, my nurse looked at my appointments and said “I don’t think you are supposed to come back in for more treatment”. I told her that it was my understanding that I was to come back. She then asked my oncologist if I should be coming in for another treatment the Thursday before surgery and he said no, that we would not know about continuing with more Chemo until after surgery.
(Although, if you have read my prior posting about additional chemo, UCLA does not administer additional chemo after surgery. Instead, I will continue Herceptin for a one year treatment (this would mean my last would be on April 2nd, 2010). Or, if there is still cancer after the pathology comes in from surgery, then they might decide to keep me on Herceptin longer than a year – but in no case would they have me go through additional chemo).
So, this whole thing is about my oncologist canceling what he thought was a chemotherapy round and not Herceptin. Now, I believe, so that he can not be wrong, he is trying to justify my not having a Herceptin treatment by claiming I have a risk of a heart problem – even though no one else agrees with him.
But, I can not keep focusing on this any longer. So my plan is to skip this week’s Herceptin treatment – since UCLA says it is safe to skip one and since the only way to not skip it would be to spend more than half a day, and thousands of dollars to get it done. Then I will “trust” that my oncologist was being honest when he said he would “consider allowing me to have the Herceptin the week after surgery.” And, if he denies that, then I WILL go up to UCLA to have a single dose (not the three week dose) of Herceptin and hope that my oncologist will approve the dose for the following week (that would be the second week after surgery). This is really all so ridiculous. My oncologist has gone from 1) having no problem with my continuing the Herceptin prior to and immediately following surgery to 2) changing his mind and canceling the treatment and then claiming that, no, he knew he was canceling Herceptin and that he did not think it was chemo he was canceling and that he wants me to delay resuming Herceptin until 4 weeks or more after surgery to 3) still no Herceptin the week of surgery, but probably two weeks after surgery if I feel better to 4) he will “consider” allowing me to resume Herceptin the week after surgery.
All of this just further underscores that he does not have a clue. It is all about covering his own butt and has nothing to do with me, the patient or what kind of care I am getting.
So, I will skip one Herceptin treatment and that is it.
And, I will get the heck out of dodge as soon as I am able to do so. But, given my choice of reconstruction surgeon – I don’t know if I can switch anytime soon because I need to work with her for some time. She will start the reconstruction on Friday, but I will need to see her for some time to have it completed. I will write another post on this later. She is really skilled and quite sought after as one of the leading reconstructive surgeons. Obviously, my main focus is on getting rid of my cancer. But, there doesn’t seem to be much doubt about that happening. I am supposed to survive this and be cured. I just want to have the best treatment available on all fronts. I feel that I do have that with the surgeons I have chosen. But, I do not feel that way (obviously) about my oncologist.
I will be filing a grievance with my insurance about my care. But, I will do it after surgery and after I have recovered. Or, maybe I will try to work on it today. I don’t know. I hate to spend more time on the negative, it not good for me.
I am going to go to Hoag today to get a jump start on my pre-op testing which was scheduled for tomorrow morning. But, since my cardiologist has scheduled a treadmill stress test for tomorrow, I am going to try to get some of the pre-op testing that my surgeons requested, out of the way today. Well, enough about this negative garbage . . . here are some pictures from yesterday’s family gathering for my Dad’s 80th birthday.
Please continue your prayers . . . I deeply appreciate it.