Oncologist said no, now what?

1 Aug

My oncologist said no to my request that I not go off of Herceptin. I had consulted with UCLA (where Herceptin was developed) and they told me that I should not be off of Herceptin for any period of time until I was done with treatment. But, my oncologist disagrees. Yesterday I demanded that he give me a medical reason for his decision to not follow UCLA’s protocol. His reason was that Herceptin poses a heart risk.

I have been on Herceptin since April 2nd. The heart risk is 1%. I have had two echocardiograms which have both come back as normal (a baseline before treatment and another two months into treatment which shows my heart function to be normal). I have had chest pains off and on throughout treatment. But, have not had chest pains in a month.

The 1% heart risk was shown in studies that involved women of all ages, all levels of health (including women with existing heart problems, high blood pressure etc.). They have done no study on 44 year old healthy women with no underlying heart problems to see if the risk to the heart from Herceptin is lower than on percent. But, the presumption would be (I would think) that my risk would be even lower than one percent.

I spent most of the day arguing with my oncologist’s physician’s assistant. Then she would take my argument back to my doctor, he would tell her what to tell me, then I would dispute that, and then she would go back to him, back to me, back to him and so forth – that was my entire day. He can’t even pick up the phone and speak with me directly.

She just kept telling me that with the risk that Herceptin could damage my heart that my oncologist would not allow me to continue it until one month after surgery – or longer – depending upon how long it took me to recover. His feeling is that there is an increased heart risk with surgery (the strain of surgery on the heart coupled with being on Herceptin). But, it is such a low risk. I told her – “look, we KNOW that I have cancer. We KNOW that it is aggressive. And, we KNOW that Herceptin is extremely effective in killing my cancer. So, rather than allow a possible, remote risk keep us from preventing a KNOWN risk (that of my cancer growing at a rapid rate if it is allowed to go unchecked by the very drug designed to kill it) I would rather follow what UCLA would do”. It seems foolish to do otherwise.”

And, I told her that he can’t have it both ways – two days ago I asked him to order a more comprehensive heart test (one that shows more of the heart function than an echocardiogram). He refused on the basis that I do not seem to have a heart problem. His exact words were that my heart function was normal and that he did not think that Herceptin was posing a problem for me.  Now, he cites a concern over Herceptin affecting my heart as a basis for not following protocol and taking me off of Herceptin. I have checked – this is generally only done in patients who are elderly or who have an existing heart problem.

I got nowhere yesterday. And, the poor PA, she was practically in tears at the end of the day. I felt bad for her, but it is her doctor that has put her in this position. She agreed that if it were her – in my shoes – that she would have the same concerns.

So now I am waiting to hear back from UCLA to see if they can fit me in (at my own cost – which could be at a significant cost) for a Herceptin treatment next week. Or, to find out from Dr. Hurvitz if it is wise to skip a treatment.

I can’t believe I am having this fight with my oncologist. He is so arrogant. First of all, he made his decision without ever consulting the appropriate protocol (this was clear from the way he answered me in the first place: “Hmm, well, I guess . . . “). Not once did he ever point to a reason or basis for his guessing.

And, the PA yesterday kept telling me about “this one patient who had trouble . . . ”

To which I told her I did not want or need to hear about anecdotal situations. That I wanted my medical treatment based upon studies and current protocols. UCLA is one of the top breast cancer centers in the world. They developed the drug Herceptin and know best how it works and how and when to administer it. Yet my bafoon of an oncologist is so arrogant that he thinks he should supplant his opinion over UCLA’s well documented, studied and proven protocols. I am livid about this. The fact that I have to spend my time arguing over something like this is so frustrating.

I am putting it aside for the weekend (although UCLA may get back to me via email over the weekend – the nurse practictioner that I spoke to at the end of the day said she would see if she could get an answer from Dr. Hurvitz about my getting in for treatment next week – she said she might hear back over the weekend and that she would let me know via email – amazing). So maybe I will get some good news before Monday. But, either way, she said she would get back to me no later than Monday. Time is kind of the essence here.

In my reading today, I have learned that there are Herceptin resistant HER2 cancers. They do not know why some HER2+ tumors are resistent to Herceptin. But, they are developing new drugs that show promise and may be available in one to three years. I am wondering (from my little bit of back ground in microbiology) if, like strains of bacteria can become resistant to antibiotics, that HER2+ tumors can become resistant. This is what concerns me about the time off of Herceptin – if I am off of it for five weeks, will this give any remaining cancer an opportunity to continue to grow – unchecked by the Herceptin – and worse yet, will this unchecked cancer have the potential to become Herceptin resistant? I am not trying to borrow trouble here, but, the reason I can survive this cancer IS because of Herceptin. Without it the recurrence and mortality rate of this cancer is very high. Not good. Herceptin increases survival by leaps and bounds.

I do not know if the Herceptin is working on my cancer – I can only presume that it is because the cancer has defnitely decreased significantly during treatment. But, it is not known yet how much cancer is remaining (if any) and I don’t know if that is due only to the chemotherapy or to a combinatino of both. The only way I will know is to be on Herceptin and be monitored. In all likelihood the Herceptin is working and will work. But, I do not want to be off of it for any appreciable time.

Well, that is enough on that for now. I will write more when I know more. Please say prayers for me on this. I really appreciate it.

L.

2 Responses to “Oncologist said no, now what?”

  1. Sally August 2, 2009 at 4:35 PM #

    Oh, my God! Such arrogant stupidity! I hope the medical community hears of this and re-educates him on the ethics of patient-doctor relations and communication and simple respect.
    I am so very sorry that you ever had to meet up with the likes of him. And especially have to deal with him about treatment that may have such a significant health risk. I love you, Lisa, and want only the best for you like you deserve. I’m praying for you.
    Love and hugs, Aunt Sally

  2. cancerfree2b August 3, 2009 at 2:00 AM #

    He is so frustratingly arrogant. This is the guy who looked right at me and told me that I had only had two chemos when in fact I had been through four chemo rounds. He argued with me about it and kept telling me I was wrong. I have never seen someone who is more sure of himself when he is in fact incorrect.

    It may very well be that given my history of chest pains that it would be wise to skip the treatment prior to my surgery. But, I do not think it is wise to skip for such a long period of time. And, worse, I can’t trust this guy at all because he doesn’t know what is going on with me.

    My plan is to get a stress test tomorrow (if I can get that done) and to have the pre-op EKG tomorrow as well so that I can prove to him (hopefully) that I do not have a heart problem.

    It will work out somehow. I am also calling first thing in the am to get a case manager with my insurance company, maybe they can override his decision.

    Thank you for your prayers Aunt Sally. I love you too.
    Lisa

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