Wined and Dined

A common complaint you hear from people is that they feel like their surgeons aren't nearly as attentive to them post-surgery as they were pre-surgery. The surgeons tell them how great and how life-changing the surgery will be, then afterwards, when the patients are disappointed with the results, they are like, 'Oh, oops, a lot of times it doesn't work! Read the fine print!' In other words, people feel wined and dined, then discarded. Of course, there are always two sides to every story, just sayin'. This seems to be a not-rare (even if not super common) thing in orthopedics; I'm sure we all know someone who had a semi-elective surgery for an orthopedic condition that didn't really do anything. (I say semi-elective because as someone who suffers from a painful orthopedic condition, I understand that just because something won't kill you, it's not really 'elective' if you want to give yourself a chance of continuing to live a normal life.)

Although I have little experience with plastic surgeons, they seem like they might be a wine you and dine you group of individuals. I've always been wary of plastic surgeons, although I now realize that many of them do much more noble things than just cosmetic surgeries. Many of them reconstruct people's faces after horrific accidents, many treat patients with severe burns, and many treat cancer patients. Technically, breast reconstruction after a mastectomy is an elective surgery, even though is far from the same thing as an elective breast augmentation, IMO.

I'm starting to worry that I've been wined and dined by Dr. T. I mean, I don't feel purposely deceived or anything. This wouldn't be logical considering it was just dumb luck that got me face time with Dr. T in the first place, and he had about 15 minutes to review my case before I saw him. It's just that maybe he has one of those magnetic personalities that makes a person a successful winer and diner, one that sucks people in immediately, whether intentional or not. Being in academia, I'm constantly told that students decide within the first five minutes of the first class whether or not they like you. Or is it two minutes? Or 30 seconds? Whatever. It's not a long time. But the point is, despite the fact that I'm sure someone got a doctorate in education for figuring this out, there is probably some truth to it. LOL.

Needless to say, as time passes and my anxiety levels rise, I'm feeling less love toward Dr. T, and more distrust. I don't know if this is rational or not; hopefully not. I sent him an angst-y e-mail on Friday about what, if anything, I needed to do to arrange to see this hematologist colleague of his, and to be fair, he did e-mail me back on Saturday morning to let me know that they would call me. And to be fair, they did call me today. And they told me the first appointment they had was August 27th. Ummm, okay, that's... not helpful. But apparently Dr. T just submitted a referral for a 'routine consult.' So basically I threw a hissy fit and told the woman I had breast cancer and was scheduled for a mastectomy August 26th, and got myself an appointment on August 10th. But still, I'm feeling somewhat annoyed and wary that Dr. T is the one who is making me see this guy - and it can't be just any hematologist, but it has to be this supposedly Top Anticoagulant Hematologist - but yet I'm the one having to throw a hissy fit to get an early enough appointment. We seem to moving at the pace of an elective cosmetic surgery, not a patient has cancer and had one positive margin after the first surgery, and three positive margins a month later, so we need to GET THIS SHIT OUT OF HER ASAP surgery. Yes, the reconstruction is elective, but the mastectomy is mandatory. So either way, the breast has to be amputated on August 26th, and the surgeons themselves are the ones telling me that if I'm going to do reconstruction, I'll be much better off doing it at the time of the mastectomy. As Dr. L would say, argggg and poop.

I'm also a little disconcerted about this late date considering I really cannot do any appointments August 12-18, and what if this guy wants to do more tests? Like... is he magically going to look at me and tell me I'm either okay or not okay? Or have he and Dr. T already decided I'm NOT okay to do this surgery, and Dr. T doesn't want to tell me, so he is making his colleague tell me? (This is what I fear the most.) What exactly am I supposed to be discussing with this guy? A little guidance might be nice. As Dr. Evil would say:

confoundedinterest.wordpress.com

At any rate, I've decided to be proactive, because for me, planning helps alleviate stress. If I really do have a clotting disorder, I want to know sooner rather than later. Definitely not just a few days before surgery, at which point I have no idea what I'd do. If Dr. T feels like it is a real possibility that I can't do this type of reconstruction, I want to know NOW. Even if it's just something like a 10 or 20% chance, I want to know. I at least want to know what he is thinking, even if it is bad. I am okay with bad, as long as it's not out of the blue and completely unexpected. So I called Dr. A, my PCP, today and requested to have my blood tested for clotting disorders. We actually talked about this a while ago, before I knew I had cancer, just because this is something you should know about even if you don't have cancer. I couldn't do it while I was taking Xarelto, though, and I think he said I needed to be off Xarelto for a month before we could do the test? Anyway, I've been off Xarelto for over a month, and figure this is one thing I can take care of immediately, with my PCP. After some ado, I got an appointment to go in on Wednesday for a blood draw. 

I also e-mailed Dr. L over the weekend about whether it would really be possible for her to do routine post-mastectomy care for me, and what, if anything, I would need to do to arrange for this to happen. I haven't heard back from her, so I guess we will see if she is a winer and diner, too! All in all, I'm feeling extremely angst-y and somewhat disillusioned. I guess one thing that's becoming really clear right now is that this is going to be an adventure until the bitter end. Maybe I'll talk to my PCP about the anti-anxiety meds after all.

Three Strong Opinions

After allowing myself a day of shock and self-pity, I'm now in full-blown information-gathering mode about the smartest way to proceed. Unfortunately, I am coming to grips with the idea that where I am emotionally might not match up with what makes the most sense, and I need to be open to all options. That said, I've been gathering opinions from message boards, friends, medical professionals, stray dogs, etc. LOL.

Opinion #1

In this post, I wrote about a woman I worked with in grad school with whom I remain friendly ( = Facebook friends, though I think I am pickier about my FB friends than some). This woman had breast cancer in her early 20s and again a few years ago, this last time opting for a bilateral mastectomy. This latest turn of events motivated me to write to her and ask for some of her thoughts. She replied:

So sorry you are going through all of this. So the first time I had lumpectomy, radiation and chemo. The second time I had extensive DCIS and Pagets, which is in the nipple. I opted for the double mastectomy because they said the odds of developing it in the other breast was very high.  Like you, the DCIS did not show up on the scans. After the mastectomy they found significant changes in the non-affected breast that wasn't cancer, but what they call pre-cancer. Apparently it almost always develops into cancer eventually. 

So, for me, I'm really glad I chose the double mastectomy. [The] emotional trauma associated with cancer also influenced my decision last time. Really didn't want to go through it again in the future. Also radiation causes permanent issues, so I'd avoid that if you can. The reconstruction isn't perfect, but I can totally live with it. Big decision either way. Please let me know what you decide and how you are doing. Try to relax and enjoy your vacation.

In the interest of educating myself, I asked her what issues she had with radiation, and was somewhat horrified by her response. Just like with lumpectomy and mastectomy, it seems like the serious side effects of radiation are often not given enough attention. She replied:

Radiation causes permanent changes to your tissues.  Lots of scar tissue, decreases blood flow to the area, etc. I've been in and out of PT for years dealing with range of motion issues in my arm and scar tissue from the radiation messing up movement in my ribs and neck. The big thing though, is once you've had radiation, you're not a candidate for traditional reconstruction in the future should you need it. That's why they took muscle, fat and blood vessels from my abdomen to create a new breast. My circulation to the area was shot and the tissue too damaged to handle an implant.  I'm just telling you because I had no idea that radiation can create long term issues, and I wish someone had informed me. I'm not going to lie, the mastectomy wasn't fun, but it would have been much easier without the whole abdominal reconstruction surgery at the same time.

Not a lot of gray in that opinion.

Opinion #2

Knowing that I was meeting with a radiation oncologist this morning, I was actually super stressed about how negative I was feeling about radiation, and went to the appointment armed with a bunch of questions: Will there be long-term effects to my tissues? Possible damage to my lungs and heart? WHAT IF I do need reconstruction sometime in the future? How much has radiation improved in the past 10-15 years?

For the four hours that I slept, I had nightmares about radiation therapy, until our smoke alarm went off around 4 AM for no apparent reason. I couldn't go back to sleep after that, so I was feeling very groggy and shell-shocked at my 8 AM appointment.

Of course, the appointment started off with an informational video about how safe and effective radiation therapy is, and was full of a bunch of smiling people and really good-looking MDs, techs, and physicists. LOL. Then we met with Dr. J, the radiation oncologist, and I immediately liked her. She had come highly recommended from radiation oncologists at University Hospital, as well as from a colleague who had breast cancer about 10 years ago, and as with Dr. L, I was not disappointed.

She started off going through my history with me at length, then did a physical exam. And then... I put my clothes back on, and she came back into the room with a heated blanket for me, because I was freezing during the physical exam. We had a frank discussion. Looking back, when she started the discussion, I should have known it wasn't good. But at the time I was all lah-dee-dah, I love this woman happy.

Then she told me that she could not in all honesty recommend anything but a mastectomy for me at this point. She was very matter-of-fact about it, but also very compassionate. She said this was a surprising result; there was not any reason to question my choice to have a lumpectomy in the first place, and not even any reason to even think the re-excision wouldn't be successful. It is just one of those unlucky things. All signs pointed toward the direction I had chosen being a good choice, but unfortunately it didn't turn out that way.

I asked her what she thought about the possibility of the 'benign-appearing' calcifications in my right breast being DCIS, and she said that there was no real reason to think they were. She understood my thinking, but said those were thoughts based on fear and emotion, and there was nothing with a medical or scientific basis that should lead me to think that. She said that she was personally not a supporter of doing mastectomies on healthy breasts, and knew that Dr. L wasn't, either; in fact, they both agreed that too many mastectomies were performed these days. Yet she made it clear that was her recommendation for me. Not a bilateral mastectomy, but a mastectomy on my left breast.

She wouldn't even talk about radiation therapy with me, since I would most likely not need radiation with a mastectomy.

Not a lot of gray in that opinion.

It's too bad, because I really liked her.

Opinion #3

After my appointment, I raced up to work for an interview, then headed off to my appointment with Dr. M. I was surprised at how broad-based Dr. J's knowledge was, and was pleasantly surprised by her ability to talk with me in-depth about so many non-radiation-oncology related aspects of my cancer. I mean, duh, she is an MD, of course, but I've met physical therapists who only deal with hands who can't even give you insight into, like, shoulder pain. And my orthopedist refused to even try to talk to me about the side effects of Xarelto I was experiencing. My goal was to head off on vacation with advice from a medical professional to help me form rational thoughts, and Dr. J satisfied this need. I wasn't quite sure if I really needed to see Dr. M, but I kept the appointment since they had been so great to work me in, and I figured another opinion wouldn't be bad.

Dr. M was wonderful; we really click. I feel like he really 'gets' me, and that we are a lot alike in that he is very intense, but yet somehow very easy to talk to. I am quite an intense, Type A person, but I think I'm pretty easy to talk to, especially if I'm with another person who is easy to talk to. I told him I just really wanted to talk to someone before I headed off for vacation, so I could start to form a rational plan. He said it was unfortunate that Dr. L was on vacation, then attempted to call her on his cell phone on my behalf. LOL. When it went straight to voice mail, he declared in a frustrated voice, 'She's not answering! I don't know if she is out of the country or what!' It was sort of cute, actually. I assured him that I understood. As much as I really wish I could talk to her, I get it. I mean, REALLY. I get it.

Dr. M started off being somewhat wishy-washy, going on about how this was a big decision, very personal, blah blah blah. Finally I asked him point blank what he would do if he were a woman. LOL. He said he could not pretend to be a woman, but... If it were my wife... I would tell her to have a mastectomy. No question. Absolutely no question. But then he said that was a personal opinion, not a medical or scientific one; since I had asked him a Very Personal Question, he thought it was fair to give me a Very Personal Answer. He was actually fairly emotional when he said this, to the point that I was worried I had crossed a forbidden line between doctor and patient. Then he said that as an Ashkenazi Jew, and someone who lived and breathed cancer every day, he had a certain paranoia about cancer that I might not have. He then added that he thought it was important for me to understand how his background might differ from my own (do I not look like an Ashkenazi Jew?!) in weighing how much his Very Personal Opinion meant to me and my own Very Personal Situation, which I appreciated. I don't ask medical professionals for their opinions lightly. Honestly, I don't even ask friends or colleagues for their opinions lightly, especially not when it's something like cancer. If we are talking about the best place to get a hair cut, yeah, whatever. But if I'm asking you for your thoughts on radiation oncologists or chemotherapy or mastectomies, it's because I respect you a great deal. All in all, it was a very philosophical conversation, which brings me full circle to what I was saying earlier. This guy gets me.

He did agree with Dr. J, though; he saw no need for a bilateral mastectomy, unless I was concerned about the cosmetic outcome. He also said that as you age, your real breast changes, whereas your fake one does not, so some women like to have them match up right away, and especially while they are young and insurance will pay for it. He said some women find such differences in their breasts as time goes on that they opt for surgery on the natural breast to try to match the fake breast, which can be difficult. Then he added, 'I hope you don't think I'm being superficial talking about cosmetic outcomes; I understand that it is important.' He went on to say that as a man, sometimes women didn't understand that he understood, and that as a man, maybe he couldn't ever fully understand the importance of breasts, but hoped that I understood that he really did understand, or was at least trying. Or something like that. LOL.

In the end, there was not a lot of gray in his opinion, even if it was a Very Personal Opinion.

Then he apologized and said he really needed to keep moving, and since he had already spent 25 minutes with me for a 15 minute appointment, I felt bad. However, he walked me out to the front, assuring me that whatever hormonal treatments he would be in charge of for me 'will be nothing compared to what you are going through right now.'

So now I have three strong opinions, none of which point me toward the path I was hoping for, nor expecting a few days ago. Nonetheless, there is comfort in strong opinions. I at least have clarity on what is likely the best and most logical route, so now I just need to work toward accepting it.

Pathology Report

My husband took the kids to a music festival, where they will camp out for the weekend. I don't camp even when I'm not recovering from surgery, but it was nice to have a legitimate excuse not to go. Somehow the I don't camp and you can't make me excuse seems to wear off after a while.

Anyway, I was settling into a quiet evening of alone-ness, trying to figure out what type of food I could possibly keep down, when my cell phone rang. I didn't recognize the number, but I answered it, and it was Dr. L. calling me with the pathology report. At 6:30 PM on a Friday evening. (Did I mention that I love this woman?)

As soon as I realized it was her, my heart started pounding and I immediately started trying to read her voice for any signs of good news/bad news. I couldn't get a good read, though, either because she is a seasoned pro, or because she was delivering a mix of good news and bad news. Fortunately, she delivered the bad news first, which is the way I like it. 

The bad news is that the pathology report shows that were extensive regions of ductal carcinoma in situ (DCIS), more than expected. (I'm not even sure any DCIS was expected.) DCIS is sort of a weird beast; it's not invasive, but it can become invasive, and it is a definite risk factor for the development of invasive tumors in the future. And since I HAVE an invasive tumor, we know I am prone to developing invasive tumors, so basically DCIS is not something to fuck around with. 

Dr. L explained that the tumor of invasive ductal carcinoma was 1.3 cm in diameter, which is almost exactly as expected, based on the many measurements I had done through many different scanning processes. However, the area including DCIS was 4.5 cm. And while she did think that she got all of it out, the margins were not what she would want - only 0.5 mm. Apparently that's a small margin. She explained that any margin was technically a 'clean' margin, but... she would feel more comfortable if we got a little more. Which means she wants to go back in and do another surgery and take more tissue out. UGH!! She said that if I were 60, she would be perfectly okay with a 0.5 mm margin, but since I'm only 40 and obviously 'high risk' due to the fact that I HAVE an invasive carcinoma, she thought it would be safer to go back in and take a little more out. Did I already say UGH?! On a side note, it's hard for me to believe that she took out over 4.5 cm of tissue and my breast hasn't, like, collapsed in on itself or something. (For the record - in case you are wondering, lol - I don't have particularly large breasts.)

But, that is the bad news, and in the large scheme of bad news, it isn't too bad. Honestly, I think I'm dreading the f-ing shots in the stomach more than the surgery itself. Have I cursed my orthopedist recently?

The GOOD NEWS - and I know you've been dying to hear this :) - is that she took out seven lymph nodes, and they were all free of cancer. (!!!) This, more than anything, is what I was hoping for. This means it is unlikely that I will have to do chemotherapy, which is... awesome. That's the thing I want the most - not to have to do chemo. I will need to do radiation therapy, and that's not a walk in the park, either, but I really, really don't want to have to do chemo.

I'm not completely off the hook yet, though. Dr. L thought that we should send the tumor off to get an oncotype, which basically predicts the probability of a tumor coming back, as well as how likely I am to respond to radiation and/or chemotherapy. She said this would give us more information as far as treatment goes, then added jokingly 'unless you just really want to do chemo.' HA HA! I assured her I did not, to which she replied, 'Yeah, I didn't think so!' 

I asked her what the timeline was for the second surgery and she didn't really give a definitive answer. It's sort of STAT and sort of not. She said it would be helpful to have the results of the oncotype at the time of surgery, because if chemo were recommended, she would insert a port during the surgery. (Ugh, I do NOT want to think about this!) In the end, we decided to discuss everything in more depth at my post-surgery appointment on May 28th. 

Overall, it is not the absolute best news, but it is very good news, probably as good as it gets these days. Because the cancer has not spread to any lymph nodes, at least that we can tell, it is considered Stage IA, which is the best thing you can have with an invasive cancer. The tumor grade, which is different from the stage, and essentially determines how aggressive the cancer is, is a G2, on a scale of 4. This is a slight downgrade from the original biopsy that stated the tumor was 'well differentiated' (which would be G1), but the good news is that hopefully it doesn't matter, because it is OUT OF ME. As far as I'm concerned, it can keep on growing in the jar if it wants to. LOL. 

On a final note - I was going to write about this in my last entry, but then Dr. L called - I/we (we being my husband and I) decided to shop around for medical oncologists. My parents kept the kids the Saturday before my surgery so my husband and I could have a nice dinner together. It's amazing what type of conversation can occur in the absence of children. Ha. We both agreed that we weren't crazy about Dr. U, and even though we have no idea what an oncologist 'should' be like, we felt like something was missing. I hope Dr. L hasn't spoiled us to a point where no doctor will ever meet our standards now, but we figure we have to try. This is life or death, after all. And that's worth a shopping trip, in my opinion.