Catia Bitching Cancer

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?

I saw him today for my two-week checkup. I dressed all nicely: tight Guess jeans, tight aqua cashmere sweater, stiletto boots, day makeup. Of course, I was chest-lopsided, but Bruce said I pay too much attention to the breasts. He thought I was sexy and, had it not been Dr. McDorky I was seeing, he might have thought jelous thoughts. And of course, my thoughts for Dr. McDorky do not involve passionate kisses or sexual breast-fondling. But I do love him. Because, after all, he is human. He is such a sweetheart, in his own dorky way. So he was pleasantly surprised that my scar is healing so fast and he’s happy with my healing progress in general. I asked him whether the surgeon’s decision to not re-excise to obtain wider margins had anything to do with aesthetic reasons (in other words, whether he influenced the decision, based on possible aesthetic consequences). He reassured me he had nothing to do with it: his opinion is that first I have to take care of the cancer, take out as much skin and tissue as it is necessary, then he’s going to work with what is left to give me the best aesthetic results, given the circumstances. He told me not to let aesthetic consideration influence my decision either (not that I needed telling, but it was nice to hear that from a plastic surgeon). Of course, being Dr. McDorky, he explained all the possible procedures to get more skin and tissue to the side of the mastectomy, should further sugery be needed. But I won’t go there. He also told me that, should I need radiation, he won’t have to remove the implant, as it is all made of plastic parts. He’ll try to avoid further cosmetic surgery as much as possible. Another nice thing to hear from a surgeon!
Anyway, after we had talked for a while, he said I was ready to be pumped up. So he got out a big syringe, a small needle and went to get some saline solution. I am happy to say that I was able to take in 90cc of saline solution, as opposed to the 60cc he was planning to inject. I could probably take some more, but why making it more painful than necessary? Right now I feel some pressure from the added volume, but no pain. Moreover, with a sports bra on, one can barely notice that I am lopsided. My left breast is about half the size of the right one, but since sports bras squeeze the breast a little, and the implanted one is hard and cannot be squeezed, I look almost normal. I can’t wait to see what Bruce says!
Dr. McDorky is also planning ahead to recreate a nipple out of some extra skin left over from the surgery. And finally, cherry on the cake, he gave me the ok to resume exercizing, as much as I want. He just cautioned me to listen to my body and not do anything that’s hurting me above the ordinary. And he remembered that he has to talk to me in terms of grams and cc, not ounces or pounds! Oh yeah, I love him! How could I not?

Yesterday I saw my surgeon who explained what she had done and told me about the pathology report on my cancer. I had always wondered how much a breast weighs…mine weighed 335 grams (almost 12 ounces) on the pathologist scale. Not too shabby, eh? Anyway, as expected I had (notice the use of the past tense) multicentric disease (that is tumors located in multiple sites of my breast). The largest tumor was 2 cm. at its widest, there was no infiltration of the lympatic or vascular systems, thus it was a stage T1c (early stage). Yuppie! The bad news is that there were noninvasive carcinomas throughout (as we had suspected) and for one of them the surgeon could not excise as much healthy tissue around it as she would have liked (so the margin, as it is called, was only 1 mm. wide, where she would have preferred to have it at 1 cm.). Bottom line: the surgeon referred me to both a radiation oncologist and a medical oncologist, as she thought I’d need both radiation and chemo (plus hormone therapy, as my cancer tested positive to hormone receptors…another good thing). Francesca instead told me that the therapy in Europe would probably be limited to hormone therapy…so there is a good chance that I won’t need either chemo or radiation. If I have to do radiation it will mean that I will probably have to have another surgery to replace the implant, as it will likely be damaged by radiation…but I’ll wait to see what the oncologists say.

I heard people with disabilities comment on how “temporarily abled people” (among whom I used to count myself) often avoid looking at them. The disabled seem to not like that a bit. As a formerly abled I wondered how to look at the disabled without appearing to be staring or condescending; or how to not look at them without appearing to denying their presence and dignity. I am finally getting a taste of what the disabled feel like. For the first few days I was only in touch with my friends who were simply great: I could even show some of them the scar and they seemed not too shocked. But a few days ago, someone I know saw me for the first time after surgery and boy was it evident she was trying to avoid looking at my chest! She was trying to be upbeat about it, to cheer me up, to tell me that I had nothing to worry about, but it was clear as crystal that the absence of breast bothered her. I guess for her it meant I was now no longer ‘like anybody else’, a ‘normal’ person. I was a sick person, someone to be pitied. Of course, I don’t feel that way about myself at all. Inside I am the same person as before, and the absence of a breast does not change who I am. But people do see me differently, as somehow less than… So the other day I decided to put on a new t-shirt that Cynthia, Kristi, and Kristin gave me at the goodbye-boob party. It says ‘Please ignore my gorgeous tits’ right across the chest. Just because I have cancer it doesn’t mean I lost my sense of humor, and every time I put that t-shirt people will know!
I had gone to the doctor’s office that day to have a nurse help me milk my drainage tube. For the past 10 days, I have been going around with a plastic tube inserted under my skin making a curve from the sternum, up my chest, then coming out on my left side, below my armpit, and ending in a little plastic bottle. Every now and then, the tube gets clogged with a blood clot, and I have to unclog it. The technique for unclogging the tube is called ‘milking’ because, as my father observed, it is very similar to milking a cow. You use a disinfectant wipe to slide your fingers along the tube and help the drainage liquid (a mixture of blood and some other clear body fluid) go through the tube and into the bottle. I have had to monitor the flow and empty the bottle two to three times a day for the past ten days. Needless to say, I was ecstatic today to see Dr. McDorky who finally took the tube out! It was not without pain, but it lasted a short time. More painful was the insertion of a big long needle attached to a huge syringe, to drain some fluid that had formed (not unusual) on my side, where the implant valve is located. But he told me I am healing well, everything is normal. I still can’t use my arm and I have to get plenty of rest, no exercise for another week, but I am doing fine! Tomorrow I’ll see the surgeon and get the histological report.

First post after surgery, here it is. I was in a way dreading it. Where should I start? The last thing I remember before waking up in the hospital room without my left boob is Dr. McDorky marking my breasts with a felt-tip pen and telling me I was lopsided. I was oh so happy that it was slightly cold in that room, so that my breasts were all perky, but he plainly said it didn’t matter a bit. That’s what I get for choosing McDorky over Cute Plastic Surgeon, I thought! But I got the nurse giggling over my fake boob-glasses and various boob paraphernalia that Bruce later had to take back with him. I got a lot of comfort from the presence of all my friends through the gifts and cards I brought with me to the pre-op room.

When I woke up in my room, I looked down to check through the bandage and all I saw was a mini cleavage that gave me a measure of relief. Then friends came over to see how I was and laugh at and with my groggy self. Kristin and Cynthia even gave me a foot and hand massage. S-P-O-I-L-E-D, that’s my name!

Saturday, early afternoon, Gary came to visit too, and insisted that cleavage doesn’t matter, but he’s a man beside a priest, so what does he know? Dr. McDorky came while Gary was there, and he sent everybody out. My parents attempted without success to convince Sandro to help them communicate, but Sandro was occupied with his GameBoy and continued to ignore the adults around him. But he didn’t ignore mamma: he moved into my bed as soon as he arrived in my room, and though he never let go of his GameBoy, we were just content to lie next to each other. He’s been so wonderful ever since. He even saw my wound and matter-of-factly admired it. He did ask me whether the drainage tube hurt, but he didn’t seem phased from the 10-in. red scar across what used to be my left boob.

As for me, I watched myself in the mirror as soon as I came home that day, after Dr. McDorky gave me the go (and after giving me post-op instructions laced with what he thought were humorous details). I won’t hide it: it’s nasty! It runs across my chest for about 10 inches, starting 2 inches left of the sternum curvying its way through to my left underarm. Then I have the scar from the biopsy and lower on my side a 2-3 in. scar where the valve from the expandable implant is sitting temporarily until the breast is inflated to the proper size. For someone who had only two small scars over all her body for her entire life and never was put under until 2 weeks ago, that was quite a change. But I am getting used to it, and Sandro’s reaction helped a lot. But more about that later…

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

L’operazione e’ fissata dunque per il 3 novembre, alle otto di mattina. Dovrebbe durare circa 3 ore, una per la mastectomia, due per inserire l’impianto che sara’ poi riempito di soluzione salina poco a poco (dopo che la ferita si sara’ rimarginata).

Ho anche saputo che i linfonodi sentinella sono risultati negativi, niente cancro li’!!! Il che significa che mi faranno solo una mastectomia semplice, non radicale, probabilmente.

This appointment scheduling thing is becoming comical. Yesterday I received a reminder call for an appointment that I didn’t know I had, and no reminder call for an appointment I did know about.

Today I saw another plastic surgeon for a second opinion (the appointment I knew about). I will call this second doctor McDorky. The first plastic surgeon I saw last week is also known as Cute Plastic Surgeon (despite Serena’s opinion to the contrary). McDorky doesn’t really look at me when he speaks, he mumbles rather than talk, he doesn’t allow for a lot of room to ask questions, but offers very exhaustive (and exhausting) explanations, has his own sense of humor but doesn’t laugh with you. Serena was looking at me in desperation, yawning and yearning for a Pocket Coffee (for those of you who have never had one, they are chocolates filled with espresso Y-U-M-M-Y!). One also wonders how he can be the famous plastic surgeon all the nurses have been praising and have food stains on his pants. But he has very well cared for hands, obviously, pink and soft, and well manicured. Cute Plastic Surgeon too has nicely kept hands. I wonder if that’s a plastic surgeon feature trait.

Basically, apart from a technical difference on what kind of implants the two prefer, they both suggested the same for me, except that McDorky’s attitude is much less positive. He refuses to give best case scenarios. He doesn’t exactly give worst case scenarios either, but he is very meticulous at telling you failure percentage rates, infection rates, complication rates, etc. Not exactly the most uplifting visit I’ve had so far. But, I think, it’s great that he’ll be present on Nov. 3rd: I get the cute and sparkly doctor, with the boring but experienced doctor there to supervise.

But no, turns out I don’t have that right either. The second appointment (which I didn’t know of) is with Cute Plastic Surgeon, for what I think is a pre-op visit. But instead he insists that, since he’s leaving for a month, I’d better be operated by McDorky, so that the same doctor that operates also does the follow up (filling up the implant with saline solution to start stretching the skin, check the healing, etc). He assures me he’s not dumping me. I sort of pout and tell him that I undestand I am a difficult patient. He denies. He says he can still see me, if I want to, when he comes back, especially for follow up and symmetry fixings etc., but that I am better off being operated by the one who’s going to be there for the month immediately after the surgery. I wonder if I am going to see Cute Plastic Surgeon again. Bruce don’t mind me: isn’t it better to wake up and see a cute face looking at you and touching what is left of your breast, than to stare half awake at an overweight, food stained, geek? Serena says McDorky looks like the typical grind, who in high school and college does little else but study, and is a genius at what he does. I hope so.

November 3rd, 8am is my surgery. If the right breast is ok, the operation will last about 3 hours. I should have a simple mastectomy, then an expandable implant put in.

Oh and one piece of good news: I overheard the two surgeons talk and McDorky later confirmed that the lymphnodes tested negative to cancer. I screamed in delight!!!