Catia Bitching Cancer

Guardate le foto della camminata di 5 Kilometri che abbiamo fatto io e Sandro il 4 febbraio:

E qui una foto di Bruce, che ovviamente ha corso la 5 K:

…is tomorrow. I’ll get there armed with anti-anxiety medicines, a sandwich, my prayer shawl (not a shawl to pray but a shawl knitted praying), and my amulets (friends’ gifts, cards, and outward symbols of love and support). The red liquid doesn’t scare me!

Domani ho il secondo ciclo di chemio. Ci andro’ armata di farmaci anti-ansia, un panino, il mio morbido scialle (che un’amica ha fatto a maglia recitando preghiere per me) e i miei amuleti (i regali delle mie amiche, le cartoline di appoggio e affetto ecc.). Il liquido rosso mi fa un baffo!

After I wrote my Kaiser defense blog, my friend Marg wrote me an email. I paste it right below with her permission.

Catia,

Just read your blog. I’m so glad your getting the OncotypeDX test.
It sounds like a great idea.

I also have heard many comments from people who assume Kaiser isn’t as good as their own PPO, but I have to say in defense of Kaiser, since everything they do is “in-house” as far as laboratory testing, radiology, mammography, et cetera, their doctors have far more autonomy to order tests and other procedures than PPO doctors who have to submit for approval before they can order outside tests for their patients.

Another matter that I’m aware of is PPO doctors basically being paid on a per-patient or capitated basis for their services. When they have to refer their patients out, they get less money from their pool of money. In other words, it puts the doctor in a conflicted relationship with their own patient. The more they refer out, the less money remains in their practice. So is it likely that they’re going to make all of the necessary referrals?

One more thing. In my experience, with my history now, my doctors order extra tests for me at the drop of a hat. I haven’t had the feeling that they’ve tried to cut corners at all.

Hope this helps,

Marg

That would be me! And here’s why.
The first oncologist ended up suggesting chemo, like I had expected. Not only so, he recommended the most standard chemo treatment in the US, which is not so good for the type of tumor I had, according to the research. So I went in for a second opinion. Upon Francesca’s advice I was determined to ask for an Oncotype dx test on my tumor. DETERMINED! Well, I wasn’t happy with the second opinion either. The new oncologist was equally determined to give me chemo, this time though a much more aggressive treatment called TAC, which has been proven to be more effective on node positive tumors. However, since I am node negative and since TAC is highly toxic, it seemed to me overkill (they are going to poison me to avoid me dying of cancer???). Francesca was especially shocked at this when I told her! I told the oncologist I had to think about it, that if she was ok with me having a less toxic treatment I would take my time to decide. But I also asked her to put in an order for Oncotype dx. Next I emailed to the head of the European Oncology Institute in Milan, who replied almost instantaneously from his Blackberry! Though he wouldn’t give me a medical opinion via internet, he wrote “I share your perplexities”. Then he referred me to an oncologist at the Dana Farber Cancer Center in Boston. So I wrote to him too. He also was cautious about giving a consult via email, but he offered me “limited assistance”. The first thing he wanted to know was the result of the Oncotype.

So when last Wednesday I went to see a nurse for a “chemo teaching” session, I asked her about the test. She talked with the pathologist, who categorically refused to send in my tumor slides for the test. At that point, I lost it and started bawling. I told her how unhappy I was with doctors Kaiser in this situation, how much of a number I felt, that both the oncologists I had seen had not looked at the characteristics of my tumor individually, that the radiation oncologist had even scared my husband (he told him that relapse rates for my tumor were 40%, when at most it’s 25%), that I had done research and contacted specialists all over the world and they were perplexed at the therapy my doctors recommended…etc. etc.

To make a long story short: she brought my case to their oncology team, who came up with the same therapy as the second oncologist (bummer!), but she also scheduled an appointment for me to see the “breast cancer multidisciplinary board” composed of specialists and surgeons from three different research institutions (Kaiser, USC, and City of Hope), who cooperate together on certain cases. They’ll see me on Dec 27th. I have chemo scheduled for Jan 3rd, for the moment and a consult with a 3rd (or would it be the 5th?) oncologist Jan 9th . The nurse said to postpone the chemo until I talk to the oncologist, but if I have to do chemo I’d rather start on Jan 3rd and change oncologist later. Either oncologist will follow the multidisciplinary board’s advice as far as treatment, anyways (I hope so!).

Anybody wants a fight with me?? 🙂

Again I’ve been sluggish at writing: I’ve been torturing myself over decisions to make regarding treatment. Then I’ve done a lot of what I do when I work on my research: I read a lot, researched a lot, found out a lot, then kept looking even after I realized that the more I went ahead the more I was reading the same stuff over and over again, no new things. That’s what I do with the dissertation, I keep second-guessing myself and never trust that I’ve learned enough. But tomorrow I’m seeing a medical oncologist, so that forced me to stop (not before having printed article over article about cancer treatment). In a nutshell, last week I went to see a radiation oncologist who told me that, because of the small 1mm. margin around one of the non-invasive tumors, he was suggesting radiation therapy. Since radiation is generally done after chemo, if chemo is necessary, he called up the medical oncologist I am going to see for the first time tomorrow, and asked him if he was going to recommend chemo (in that case, he would hold off radiation treatment until after chemo). Well, the oncologist said yes. I asked him for a special test (Oncotype DX), which supposedly predicts with more accuracy the likelihood of recurrence and the efficacy of chemo, but he said that though he could order it done if it could help me make my own decision, his mind was already made up. So I got confused…how come two different sets of good doctors (i.e. Francesca and Romeo vs. American radiation and medical oncologists) suggest such different courses? Francesca and the radiation oncologist in the US both told me that my case could get 10 doctors to suggest 10 different treatments, but that doesn’t make my decision any easier! It’s not even that easy to explain.

According to Francesca, because my cancer is hormone receptive, all I need is an aggressive hormonal approach, that is administration of the usual Tamoxifen + another drug that essentially suppresses the ovaries (thus blocs the production of estrogen – i.e., puts me in menopause). Moreover, she thinks that a 1mm. margin is not ideal but it is not crappy either and, if further surgery is not possible, then the margin is good enough, no need for radiation. For very complicated reasons, the surgeon absolutely excluded further excision to get a better margin, and the radiation oncologist does not agree with Francesca’s assessment. I’m going to ask for a second opinion on this one.

Regarding chemo, I asked around on the web, on cancer mailing lists, on websites, I emailed the National Cancer Institute. Then I looked for the guidelines of the National Comprehensive Cancer Network, which in summary do not support RT (radiation therapy) with a 1 mm. or larger margin; but do support chemo for the type and stage of tumor I had. The oncology community in the US essentially doesn’t quite trust studies that have suggested the equivalence (in terms of decreasing the probability of recurrence and/or death) of ovarian suppression and chemotherapy if used together with Tamoxifen. On the contrary, European oncologists have more confidence in those studies and are more likely to spare patients chemotherapy (with all its short and long-term side effects and risks). So, what do I choose? And if I choose to do chemo, which chemo do I choose? The type that is more toxic but more effective (and by how much?) or the type that is less toxic but also less effective?

My instinctual reaction was to take the bull by the horns. That’s the way I am, it’s sort of personality-guided. I am never subtle. And if I want to rationalize my decision, I can say that I have to go with what both European and US oncologists agree upon: that Tamoxifen and chemo increase my chances of disease-free survival. Plus I also sort-of-cheated and went on a website that technically is only for MDs, signed up as “other” and reviewed my case with their web-based tool. Some chemo regimes (the more toxic) increase my chances of being disease-free for the next 10 years by over 13% (and that is without Tamoxifen! 18% with!). That’s not peanuts! Less impressive gains can be seen in mortality rates, but already my ten-year prognosis is over 90% survival chances, even without any further treatment (though really to be precise these stats are for unicentric disease. I don’t think that similar stats exist for multicentric disease…at least I haven’t been able to find them). My prognosis is quite good then. So why do I feel so lousy?

Recorded Nov 4 2006. Click Here to Listen

The surgeries are over, both surgeons reporting that the surgeries went well. Catia was out of recovery and in her own room by 2:10pm, but groggy. We visited at about 4pm and she was in great spirits (a strong will, a measure of relief and good meds, I suspect) but still a bit groggy.

Keep the love coming!!!

Oh yeah, and vote on Tuesday.

posted by Mark

…interesting exchange Toni and Alan. You guys never fail to amuse me!

…un grosso benvenuti sul mio blog! Cerchero’ di scrivere molto di piu’ in italiano d’ora in poi…proprio per voi. Vi abbraccio forte!!!