NCC Appointment Set

I picked up the documents I needed from my oncologist at Kyorin to apply for an appointment at the National Cancer Center across from the fish market in Tsukiji. I faxed the cover letter, my doctor's request, my request (with contact information) and a brief history of my case written by my doctor on Tuesday afternoon.

I got a fax today informing me that I should be at the NCC by 10 a.m. on October 25th and that the doctor I had requested (breast and lung specialist who takes care of my downstairs neighbor) would be seeing me. My neighbor wants to go with me, so I took the fax downstairs to show her. She was pleased that I got an appointment so soon.

She looked a little confused when she saw the examining room number on the fax. "That's not Dr. F.'s room." So she called the center and got Dr. F., a very important and busy man, on the phone and asked him if he had me in his schedule. It turns out that he'll be away that morning but colleague, Dr. Y, will check me out. He asked her to give me the phone and apologized directly to me about the misinformation in my fax and told me to be sure to tell his colleague that Dr. F would be on my case thereafter.

My neighbor was happy about it and is hoping that I'll have a second appointment that coincides with her November 7th check-up so we can go together and then have lunch in Tsukiji with three other stage IV survivors from her treatment days (many years ago) when we're finished at the hospital.

I checked the NCC website and downloaded the first time visitor forms so I can fill them out and take them with me to save a little time at the reception desk. I also checked their policy on second opinion consultations. They charge about 100 dollars for the service which isn't covered by the public health insurance. I see that my doctor at Kyorin deliberately left out the words "Second Opinion" on his paperwork so it looks like he's referring me to the NCC for treatment and my consultation will cost about 5 dollars. I do have a November appointment at Kyorin, but if I decide I can get better treatment at the NCC, then I can call and cancel my Kyorin appointment.

In reading over the history, I was surprised to see that my cancer is HER2+++ which means that it makes too much of a protein called HER2 and that infusions of Herceptin (trastuzumab) might be effective in shrinking the cancer and keeping it away. I asked last year about whether or not I might benefit from Herceptin. The reply was that it wasn't applicable in my case. I took this to mean that I was HER2 negative so I didn't research further.

It turns out that Herceptin has only been approved for stage IV use and I was only stage III when I asked. I should have asked "Am I HER2 positive?" so I could have tried to get into a clinical trial back then. I'll be sure to ask questions in as many ways possible from now on.

I wrote to (e-mail) Chugai Pharmaceuticals (the Japanese supplier of Herceptin) yesterday with details of my case and asked if they had any applicable trials. I got a sincere but regretful reply this morning. They have a trial going on for possible use in stomach cancer and two trials for the effectiveness of treating early stage breast cancer with a year, in one study, or two years, in another study, immediately after breast surgery. The man did write encouragingly that Herceptin has become available for treatment of stage IV HER+++ patients and that I should speak with my doctor and go for a second or third opinion until I find the right therapy for my case, whether it be Herceptin or not.

The reason I'm looking for trials is that I really think Herceptin may be just what I need, but from what I've read on the internet, it costs about 60,000 dollars a year after the national insurance deduction and some women take it for one or two years while other woman expect to take it for the rest of their lives. Also, with my luck, I'd get a placebo in the trial, so I'd really love to find a trial like " Comparison of Effectiveness of Herceptin with or without Aromatase Inhibitors" where I'd be sure to get the good stuff. I will ask the NCC doctor about the possibilities and also try to meet a social case worker to find out how to qualify for a little (or a lot) of assistance.

Of course if the prognosis will improve only slightly with the drug, it may not be worth it. Women in a survivors group with similar cases even older than mine say that they're continuing with hormonal therapy and regular CT scans to monitor the progress or, hopefully, lack there of, of the cancer like what my Kyorin doctor is considering. I have to start writing down a list of questions for my NCC appointment. Let me know if you have any that you think I should ask.

I'm thinking along the lines of:

1. Do I need a lung biopsy?
2. Would more chemotherapy eradicate the lung metastasis like it did for the lymph metastasis?
3. What is my prognosis if I have more chemo? If I have Herceptin? If I have chemo and Herceptin? If I wait and watch with torimifene only?
4. Wouldn't it be better to surgically remove my ovaries instead of stopping them with regular Zoladex injections?
5. It's possible that I have Factor V Leiden (another protein thing!), a genetic tendancy toward blood clotting problems. Can you test me for this and how might this effect cancer treatments? (Kyorin never followed up on this request.)
6. Is stage IV breast cancer in a lung treatable with proton beam therapy (only offered in about 3 places in Japan, all connected with the NCC and it seems that it offered to a select group of lung cancer patients)? If so, how much does it cost and how soon can I get it?
7. How often should I get CT scans (with iodine contrast), bone scans, MRI, other tests.
8. Are there any clinical trials that would help me get the medications without putting my yet to be born grandchildren into debt?

The goal is to live long enough to worry about knee replacements and Alzheimer's so I can forget all about cancer and dance (thus the new knees) on the sidewalk like my great aunt Millie. She knew what a good time was!

And now I'll give up looking for the spell checker on this page (I don't know where it goes sometimes or if there ever was one) and correct any major bloopers later.


Ingrid said...

Hi Kathy,

Below are links to newspaper articles about a womans fight against a medical aid to get them to approve treatment for her. Apparently using herceptin early could slow the growth of cancerous cells and halve the risk of breast cancer coming back. It also blocks the action of the HER-2 protein.

I believe the only reason that it is not prescribed earlier is due to the cost. There are some side effects which I read about, but cannot recall right now. It could have been something to do with the heart, but that is something I am sure you will be able to find out.




Here is a case in the UK


Ingrid (ingemushi from MIJ)