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Conveyor belt medicine March 4, 2014

Posted by Judy in Musings.
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Back in December, when this whole cancer process began, I was warned of a phenomenon called “conveyor belt medicine”. The patient is mammogrammed in the morning, biopsied in the early afternoon, diagnosed in the late afternoon and surgery is scheduled for the next day. I thought for sure someone was telling me a tall tale! No way could there really be a place that pushed you through as if you were on a conveyor belt. I’m here to tell you, those places do exist. As a matter of fact, I’m at one of them right now: Mayo Clinic. Now, I know there are many of you who have said so many positive things about Mayo and you are probably ready to throw rotten tomatoes at me right about now. I guess I’m okay with that, but before you start chucking vegetables at me, just hear me out.

When you look at the brochure for the Breast Clinic, they very clearly present this conveyor belt model. You arrive to the belt, give them your records, and then merrily hop on. Your first stop is with a general breast doctor, a homeroom teacher, if you will. They take a history, get all of the details, and then decide who you need to see after that. Sometimes it’s a science or math teacher, sometimes a reading teacher. Along the way, you may hop off of the belt to get another test or you might experience a little detour, but you hop back on and are shuttled on down the line. The homeroom teacher keeps popping up to see how things are going and to help coordinate visits and tests. The goal is that at the end of 5-7 days, you’ll have a treatment plan with the surgery either scheduled or already performed. Their claim is that surgeries can often be scheduled for the following day. There are advantages to this system: 1) the dreaded wait time for test results is dramatically decreased and 2) you get to see many specialists in a short amount of time. The biggest disadvantage is that you have no time to think and it’s very easy to get railroaded into something. By now, you know that I don’t like to be rushed or railroaded into much of anything, especially not major healthcare decisions.

To sum up my experience here thus far: it’s definitely a conveyor belt system where all of the people involved are convinced that you need to take action right away and that said action will be taken at Mayo. All of the people I’m met have been lovely and competent and they all would certainly provide great care. I’m not, however convinced that they would provide care superior to that which I have already received. And to be honest, I’ve been annoyed at the “Oh, you’re at a better place now, you will get better care, there won’t be any mistakes here” attitude. While I do think that the radiologists in my hometown were off their game, I also think that my surgeon and medical oncologist have been totally on top of their game and are equally as skilled as folks here. Evenso, I’m glad that we have had this experience as I’ve learned a few key pieces of info which have made the journey worthwhile. I have two more appointments tomorrow before I make my final decision, but I wanted to catch you up before things drop into warp speed.

The first doctor I met was positively fantastic. Within the first 2 minutes, I knew she was a good match for us. Her sense of humor was great and she was able to handle DH’s unique sarcasm without missing a beat. Not only that, she understood and didn’t downplay my interest in preserving my vocal cords. As it turns out, she took voice lessons for 12 years and even auditioned for the Met years ago. Once she knew that vocal preservation was at the top of my value system, she made sure to lead with that information whenever she talked to any other doctor about my case. “Hi, this is Dr. X and I’m sitting here with a lovely woman who is a classically trained singer. She also has breast cancer and I’d like to have her talk to you about X.” I’m quite certain that any other doctor would not have placed so much importance on my voice. She really has gone to bat for me in that department, and for that, I am so very thankful. This worked out in my favor today when trying to get in to talk to an anesthesiologist. If you recall, the local doctors were rather slippery and I never was able to get a satisfactory response out of them regarding how to preserve my vocal cords. It seemed that the same was going to happen here, but my homeroom teacher went to bat for me. She gave her opening speech and asked if I could have a consultation today.

Anesthesia: Can’t this discussion happen the day of the surgery?
Dr. X: Well, she has some extra questions and concerns regarding vocal preservation.
Anesthesia: I think we can deal with this the day of the surgery.
Dr. X: Okay. What happens if she is told of the risks and benefits on the day of, isn’t happy with what she hears, and then cancels the surgery?
Anesthesia: *sigh* Okay, I guess she should have a consult.

Thank you, Dr. X!

The anesthesia consult ended up being the single most informative appointment thus far. The doctor was very personable, which, as I understand it, is not the norm for anesthesiologists. He took my interest in vocal preservation seriously rather than dismissing it like the local doctors had. During our conversation, I learned three things:
1) The risks of an LMA: possible aspiration of stomach contents which could result in pneumonia since the airway is not totally sealed off.
2a) How intubation works: a tube is place between the cords and a bulb is inflated below the cords to completely seal off the airway.
2b) In order to place less pressure on the cords, the anesthesiologist can choose a tube one size down from what he might normally use without compromising safety or effectiveness.
3) A way to totally avoid general anesthesia is to do a paravertebral block where the nerves that enervate a particular area of the body are numbed so that surgery can be performed.

All three of these tidbits were thoroughly explained with pictures and diagram and then he gave his recommendation for which method he thought would be the best. (Intubation with a slightly smaller tube.) I left the consultation feeling like I had three good options for vocal preservation. In addition, the visit would be documented in my chart, so other anesthesiologists would see the outcome and I’d be flagged as a classical singer. As a result of this visit, I am seriously considering having the next surgery performed here.

And now you are probably wondering what surgery I’m talking about, so I should back up a bit. I brought copies of all of my records here and rather than running new tests, they reviewed my older tests. The Mayo pathologists looked at the slides of the tumors. The Mayo radiologists looked at all of the scans. The pathology all turned out basically the same. The scans, however, told a slightly different story. (Keep in mind that this is the MRI that was done back in December, long before the surgery.) This is the MRI that showed nothing new, according to the local radiologist. The Mayo radiologist saw a .6 cm something at 11 o’clock and a .8 cm something at 12:30. It’s possible that these somethings are benign, or that it was an over-exposure of the background. The upshot of the matter is that whatever they are, they need to come out. At this point, so much tissue has been removed that taking more tissue out is going to render me deformo boob. Not only that, the surgeon I met with today recommended a unilateral mastectomy because I have multiple tumors, I’m young, and the tumors are lobular (aka, sneaky boogers). We had a long and sometimes confusing discussion with the surgeon today in which she recommended a mastectomy as well as a complete lymph node dissection (removal of the lymph nodes), and we discussed the merits of a double mastectomy. I also talked about the vocal cord issue, which she totally blew off. Fortunately, she’s not the one that would be managing that part of the surgery!

Anyway, so I’m currently deciding between a single and double and am leaning more towards double to reduce the chance of recurrence and because with a double, I don’t have to get a prosthetic. (Well, I guess I wouldn’t HAVE to get one with a single mastectomy, I could just rock the uniboob. That would be weird, though.) The one drawback to doing the surgery at Mayo is that I would feel like I was breaking up with my local surgeon. I’ve been very happy with the care he has provided me and I’d feel like I was ditching him for another surgeon that wasn’t necessarily better, when in reality, I’d be ditching the local anesthesiologists and the surgeon would be an innocent bystander casualty. Maybe I can convince him to come up here and be a guest surgeon. That happens on TV shows all the time, so it must be realistic, right? 😉

So getting back to the key pieces of info I’ve learned thus far. The first was regarding anesthesia options. The second piece of info totally threw me for a loop. You may recall that during the CT scan, they “discovered” a fibroid. I say “discovered” because I already knew about this. As such, I declined to have an ultrasound. After talking with the first doctor, we decided to do the ultrasound because the fibroid seemed to not have shrunk at all since pregnancy and because my uterus was enlarged. I got the ultrasound and half an hour later, I was reviewing the results with the homeroom doctor. Yes, the fibroid is still there, but there’s something else: a cyst on my ovary. Yep, you can go ahead and scream now, I’ll give you a minute.

I was prepared to deal with another tumor in either breast or even several more tumors. I was not prepared to deal with a cyst on my ovary. The cyst is small, round and the edges are well-differentiated, which is good. The concerning part is that the cyst is vascularlized, meaning it has its own vascular system. This could be no biggie, or it could signal a malignancy. Blech!

I had a CA-125 test done. This is a test used to measure the spread of disease for ovarian cancer. It’s not a particularly good way to find the cancer because the levels can be pretty low, even when cancer is actually present. But, it’s a good place to start if there is a suspicion. I was able to get in the following day to talk to a gynecological surgeon (aren’t all gynecologists surgeons?). I spent the night before imagining that she would tell me that I had ovarian cancer.

I did not sleep well.

Fortunately, the test came back within a normal range. That doesn’t mean that it’s not malignant, but it also isn’t clearly benign. Consequently, I get to have the cyst monitored for several months, during which time I’ll have an ultrasound and a CA-125 test done every 6 weeks or so. The doctor wanted me to get another test called an OVA-1. This is a more accurate test and gives more information, but it’s expensive and only one lab in the country does the test. Of course, this lab is out of network for me. Hence, I opted to hold off on the test for the time being, especially since the gynecologist felt it was more important to first deal with the breast cancer. So, the cyst will get to hang out for a while, or maybe it will reabsorb and disappear by the next ultrasound. Either way, I’m setting it on the back burner for the next month or two.

The final appointment to tell you about was with the geneticist. We really were hoping to speak to someone who demonstrated more competence than the first geneticist, who made the bewildering statement “I don’t do statistics.” Happily, this geneticist was more with it. The fact that I’m BRCA negative means just that: I’m BRCA negative. It doesn’t, however, mean that there isn’t some sort of hereditary component. It could very well be that there are several genes that are causing so much breast cancer to show up in my family. At this point, though, there just isn’t enough information about how multiple genes interact to be able to say, “Yes, you have this mutation and it means this.” BRCA genes are the only breast cancer gene with clear implications at the moment. He gave us the option to do further multiple panel testing for other genes. Since the result wouldn’t inform the treatment plan, and the insurance company likely would not pay for the $4000 test, we opted to not undergo the testing at this time. In a few years, once there is more information, we might revisit the option.

So there you have it. All in all, it has been a good and interesting experience. Certain aspects have left a bitter taste in my mouth (“We’re the best! Pick us! Pick us!”), but there have been quite a few positives (Very personable and knowledgeable doctors who are willing to spend copious amounts of time with you. Everyone has spent a minimum of half an hour with us, with most spending over an hour. That was nice.) I’m anxious to see what that radiation oncologist has to say tomorrow. I’m really hoping she’ll say that the positive margin on my chest wall will not necessitate radiation. Keeping my fingers crossed about that one. I’m also curious to know what the medical oncologist will have to say regarding whether chemo will be necessary and if so, what type. Once we’ve met with those two, we should be ready to make the final surgical and treatment decisions. I know I’m definitely tired of mulling things around in my brain and am ready to just pick something and move on!

Stay tuned for the final decision!

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Comments»

1. Marian - March 4, 2014

Fingers and toes are crossed! Love you!

2. Mary - March 4, 2014

:Young Lady, you are in our prayers and in our very best of all wishes for the right decisions and actions to go forward. As always we love you. You are one special person.

3. Mary Cleveland - March 5, 2014

Praying for you!
Don’t feel bad about breaking up with your surgeon. I feel like we have way to much patient loyalty, when really, we’re paying for a service and we need to get the best service possible. If that means you have to break up with a qualified surgeon to get the correct and careful care to keep your voice intact, then that’s fine and you don’t need to feel at all bad. 🙂


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