Post-Op Appointment

I had my post-op appointment with Dr. L today, and she was amazing, which allayed my fears that she was going to turn into my orthopedist (i.e., super nice but not so super competent). I had a list of questions that I've been jotting down over the last 10 days, but fortunately the regular course of the conversation answered all of them for me, without me having to pull out my notebook and go through the items point-by-point (though I did check at the end, just to make sure). It was a very useful and information-packed 30 minutes, so without further ado, here are the highlights:

• The pain and numbness I'm still having is normal, and should resolve within a few weeks. I've heard that one before, lol, but I am encouraged by the fact that it has gotten significantly better within the past few days. Dr. L said there is no excessive swelling, and that I need to stretch my arm ( = lifting it above my head). This will actually help the pain. I haven't been doing this because it hurts to do it, but apparently this is one of those suck up the pain to make it get better type of deals.
• She also listened to my lungs for me, because I was coughing so much, haha. Apparently they are fine, and this horrid cough is just the usual crud that causes horrid coughs. 
• She went over the pathology report with us. As it turns out, the pathologist went back and re-did a few slides after the initial report, and one of the margins is actually positive for ductal carcinoma in situ. This isn't good, but it's also not a catastrophe since it is 'just' DCIS ( = not invasive... yet), and she had already told me that she wanted to go back in anyway. It just worries me a little that the DCIS is so extensive, and that it really didn't show up on the mammogram, which in my paranoid mind has me thinking it could be all over the place. 
• I asked how she was going to know how much tissue to take out the second time around. She said it was a good question, and admitted that you can't really know for sure. Most people want to err on the side of too much vs. too little, but there is also a certain point at which you might as well just have a mastectomy. So... 
• She was very reassuring that there is a very good prognosis for lumpectomy + radiation, just as good as for a mastectomy. 
• Then we had an interesting conversation about radiation. I've never really understood, on a molecular level, how cancer can be caused and treated by the same thing; how one can receive radiation to kill cancerous cells without causing cancer in healthy cells. And I still don't really understand. Dr. L did say that previous radiation treatments ultimately ended up causing cancer in many patients 10-20 years later, The worst thing is 'a little' radiation, but that 'therapeutic doses' of radiation that are now given are very effective. 
• As far as the timing for surgery #2 goes, she said she would prefer to wait not only for the results of the oncotype, but also until we had met with and decided on an oncologist, and had decided on a definitive plan of action with an oncologist's input. 
• My husband actually arranged three appointments with oncologists next week: one on Monday, one on Tuesday, and one on Wednesday. The one on Monday is with a different oncologist in town, Dr. M. (Unfortunately, there are only two cancer centers in town, so he is sort of the end of the line for in-town providers.) The one on Tuesday is with Dr. U, and I had tentatively planned to cancel that one if I liked Dr. M better than Dr. U. The one on Wednesday is up at University Hospital. 
• However, Dr. L suggested waiting until the results of the oncotype were in because the oncologist would want them before making a definitive recommendation. So, those appointments will need to be rescheduled. Thank goodness I have a personal secretary (i.e., my husband) and I have the summer off, more or less.
• Although all signs point to NOT having to do chemo, it's not a done deal. She said the results of the oncotype change the suggested treatment 50% of the time  - though usually for the better. She said there are some types of cancer for which chemo will actually do absolutely nothing as far as recurrence, and there are some types of cancer for which chemo will reduce the risk of recurrence significantly. The tricky part is the middle ground, and weighing the hellishness of chemo versus the potential benefits in these 'intermediate' cases is when you need a really good oncologist.
• She said there was another test, MammaPrint, that also assesses the risk of recurrence, and some oncologists prefer to use it over the oncotype dx, because it comes back as either yes (do chemo) or no (don't do chemo), and some oncologists are uncomfortable with ambiguity. However, I'm more uncomfortable with an oncologist who is uncomfortable with ambiguity than I am with ambiguity myself. I understand statistics, and the fact that most things aren't black and white. 
• As if she read my mind, Dr. L said she was sure I'd be fine in understanding the numbers, because 'You are smart, and understand numbers' (LOL, I'm not sure how she came to that conclusion after one meeting; hopefully it's not just because I am Asian), but that you had to be careful in interpreting/understanding the results of the oncotype. For example, the results of the oncotype might suggest that chemotherapy will reduce the risk of recurrence by 20%. That sounds significant, but if the risk of recurrence is only 10% to begin with, that only takes you from 10% to 8%. Of course, a reduction in risk is a reduction in risk, but there are side effects to chemo, and if the risk of recurrence is small to begin with, you should consider that. 
• Because I'm a science nerd, and Dr. L thinks I am Smart, haha, I asked her what exactly the oncotype was testing - receptors, mutations, or... ? She said the oncotype dx analyzed 21 different genes with various roles in cancer, and was actually based on a really neat prospective/retrospective study - one in which old tumors were analyzed after the fact. And because they were analyzed 10-20 years later, the researchers knew the outcome of the people from whom the tumors were removed, and could therefore make very powerful correlations between the tumor characteristics and the outcome. So basically it is the best tool we have nowadays. 
• It was really cool to be able to have a 'high level' conversation like this with a doctor. I understand that medicine is part art and part science, the same way that teaching science is part art and part science (and, at my level, more art than science). However, I believe that cancer is a malady that will be cured by biochemistry and molecular biology, more than art, and by doctors who understand science. The most important thing to me in a provider for cancer is that they can talk science, and statistics, with me. 
• As we have been shopping around for oncologists, I decided that I would ask Dr. L for her personal recommendation for an oncologist. I know this gets into sticky territory, as some doctors won't give definitive recommendations, especially for doctors outside of their own practice. But you figure it's worth asking, right? My PCP told me that if it were his wife with breast cancer, he would make sure she saw Dr. L, and since his recommendation turned out to be fabulous, I decided I wanted Dr. L's recommendation.
• Fortunately, at some point, our conversation had a very neat segue into If it were you, who would you choose as your oncologist? territory. Dr. L was actually very open about who she would choose, and highly recommended Dr. M, which made me feel very good. I had been a little concerned because the other doctor who came highly recommended (in the same practice as Dr. M) was booked through June, so I sort of had this feeling that Dr. M was second best. Or third best, or fourth best... (The problem with awesome doctors is that they are usually booked, so you have to wonder about one with open availability.) However, Dr. L said Dr. M was very compassionate, smart, and science and statistics-oriented, and felt he would be a really good fit for us. She actually semi recommended him over Dr. Who Is Booked Through June, which was sort of a relief. (She didn't exactly say this, but she implied it.) She said Dr. Who Is Booked Through June was more on the aggressive side than Dr. M. I mean, aggressive is okay, but aggressive without evidence that aggressive is helpful is another thing, and Dr. L seemed to understand that while I definitely want to be aggressive, I don't want to be aggressive just for the sake of being aggressive (i.e., I'm not one of the Give me chemo no matter what type of people, and probably not even Give me chemo if it reduces my chance of recurrence from 10% to 8% type of people). So hopefully he is just less popular because he is a man who deals with breast cancer, which is sort of like a male OB/GYN. 
• However, Dr. L also said no matter what, it was a good idea to go to University Hospital for a consultation, and was happy we had set that appointment up. At one point, she said she was glad that we seemed to have the 'med onc' part of this under control. 
• On a side note, I stalked Dr. M on Internet and he is an MD/PhD, with degrees from an Ivy League school, which as an academic immediately made me feel good. Nonetheless, it makes me feel much better that he has an endorsement from the medical community as well as obviously being 'smart.' 
• Interestingly, as we talked a bit more, I asked Dr. L what chemotherapy might involve - i.e., what drugs - just so I can Google them and prepare myself, ya know? She said chemo was usually pretty standard and there were basically three different drugs, though given my case, Dr. M might opt out of the one with the most horrid side effects. I'm not sure what the 'horrid' side effects are, but I decided that was a conversation I should have with the oncologist vs. Dr. L. 
• Call me vain, but I really don't want to lose my hair. To me, that's the most horrid side effect of chemo, even more than constant nausea - throwing up, diarrhea, whatever. I feel like I can deal with the other side effects, but I really don't want my hair to fall out. There, I said it. 
• Even though Dr. L (UNFORTUNATELY) won't be in charge of my long-term care, she did discuss options with me, including tamoxifen and shut-down of my ovaries - whether it be chemical vs. surgical. 
• She said that she felt most oncologists would be okay with me taking tamoxifen if I also stayed on blood thinners, given that a side effect of tamixofen is increased risk for blood clots.
• But, that might be 5-10 years, which is a long. freaking. time.
• I mentioned that I was fairly certain I didn't have a clotting disorder, and asked if it would be possible for me to have my blood clot re-evaluated. She said that unfortunately, regardless of prior history, the single best predictor for blood clot formation, was a previous blood clot. So basically I'll be high risk for blood clot formation for the. rest. of. my. freaking. life. (Have I cursed my orthopedist recently?) 
• Aside from tamoxifen, the other options for hormonal treatment (e.g., aromatase inhibtors) are for post-menopausal women. Apparently some women can't tolerate these, so Dr. L suggested that if I went that route, it would be better to test the medications before doing something permanent, like having my ovaries surgically removed. She also said that the ovaries can be shut down medically through a shot, which basically makes you go through menopause in, like, a few days, which is Not Fun. So basically being on tamoxifen and Xarelto for 10 years is pretty much the most appealing option at this point, which is pretty freaking depressing, though not a shock. I feel like I sort of already knew this, though it was different hearing it from Dr. L than from Dr. Gloom and Doom (Dr. U). 
• IF I do chemo, the order of events is surgery, chemo, then radiation. Radiation is a given. Pretty much. I mean, obviously no one can MAKE me do it, but basically I won't find a board certified doctor who will tell me it's not a good idea. 

The GOOD NEWS is: 

• Going on vacation is absolutely doable, according to Dr. L. I realize that vacation is small in the you are going to live vs. you are going to die scheme of things. However, I'm also a numbers person. If starting treatment at end of June/beginning of July vs. middle of July/end of July means a 0.001% or 0.01% or even 0.1% or 1% reduction in the chance of recurrence of my cancer, I'm all for the vacation. 
• However, Dr. L actually said that she didn't think there was much, if any, significance in when I started Part 2 of my treatment, as long as it was within three months post surgery #2. 
• I figured a person who deals with cancer patients might not have a lot of patience for patients (haha) who were trying to plan their life around vacations; however, she understood. My life has already been turned upside down, or at least sideways. Vacation is important. Maybe now more than ever. 
• She was willing to work with us as far as us still being able to take our vacation. Furthermore, she was willing to work with us as far as her own vacation plans went. 
• She said that she was going on vacation June 19th-30th, and given that we were hoping to leave June 27th, it was possible to aim for surgery #2 before she left. She was a little uncomfortable waiting until after we got back, theoretically on July 11th, and therefore agreed to 'make time' on June 17th for the 're-excision.' So June 17th it is. This should give us time to get the oncotype results and consult with an oncologist, and also give me enough recovery time to be able to travel on June 27th, even with a chemo port. 
• She said surgery #2 should not be nearly as bad as the first one, given that the lymph node biopsy is the worst part, and she won't do that the second time around. 

Overall, it was an action-packed appointment, with a lot of information. Most of it was not new, but somehow it was still a lot to take in. When I first got into the room, the MA had me change into a robe (I love that they have real, cloth robes that they heat up for you - none of the ridiculous, scratchy, paper robes!); however, I never actually sat up on the examining table, just because I didn't feel like it. And Dr. L never asked me to sit up on the table, she just sat down across from me and even did her physical exam while I was sitting there in the regular old chair. At one point during our conversation, she actually moved next to me and put her arm around me, though in retrospect I feel sort of bad because I'm pretty sure I just sat there like a stone statue, which is nothing personal, just my normal reaction to people touching me. LOL. However, before she left, I did thank her profusely for calling me on Friday night, so hopefully she knows I don't hate her for having to be the bearer of bad news.