Blessings and Hopes

I enjoy reading, and in the past, I've underestimated the amount of reading  that I'll accomplish on a trip such as this one. For this trip, I brought two really long books, hoping it would be enough, and I actually haven't touched either one of them. Instead, my reading time consists of consulting Dr. Google about mastectomies and various reconstruction options, and reading various blogs I've stumbled upon. So many people have told me that they are happy I've been able to take this trip and 'get away' from everything. But the truth is there is no getting away from this. Not only does this disease, like any other, live inside me, but also... it is me. The cells that are doing this to me are my own. I have only myself to blame for this, which sucks. LOL.

There is so much I want to write right now, about the decisions that lie ahead, and the research I've done about the decisions that lie ahead, but all of that will reveal itself in due time. What is on my mind right now is something bigger than this, something upon which I believe my future well-being depends perhaps more than anything else, and that is my mental well-being.

There are many aspects to mental well-being, which is probably why mental illness, despite many amazing advances in medicine, remains poorly understood. Science and medicine have provided anti-anxiety medications, anti-depressants, and hormonal therapies, but these are only part of the puzzle. The rest of it, it seems, is up to individuals to solve for themselves.

I know right now that my future depends on me developing a positive state of mind, and I believe a large part of that will depend upon me tending to my spiritual self. I do not mean this with any sort of expectation that positive thinking or more praying will cure my cancer or any of that sort of nonsense. If you know me in real life, you probably know I am not an overly positive person, and that I am not religious. And even if you know me only by Internet, you probably know this. Heck, even if you're brand new here, I'm sure it's not hard to figure out that I'm not an overly positive person, and posts like this don't make it hard to figure out that not only am I not religious, I am also downright irreverent.

As someone who is happily not religious, it is nonetheless an interesting observation for me that many people who experience extreme circumstances or deal with intense medical problems, such as breast cancer, lean heavily on their religious beliefs to get them through. Even while directly engaged in a staring contest with death, these people believe it is God's will that they should die an agonizing death at too early an age, leaving behind widowers and young children who will never know their mother.

I get it, I really do. And I honestly wish I could believe the same; everything would be so much easier if I could give my life up to God. However, after decades of reflection, I can say with certainty that I do not and never will believe in a God who is looking out for me. I never have and never will believe in a divine reason for everything that happens. Of course all things happen for a reason, but sometimes that reason is that you just got extremely lucky, and sometimes that reason is that life is unfair, and you are just the wrong person in the wrong place at the wrong time. A few years ago, a dear friend and her three daughters were killed in a horrific and practically unheard of freak accident, and nothing will ever convince me there could be a reason for this other than bad, horrible, terrible, ridiculously unfair luck. I do not believe in a God who grants miracles on a case-by-case personal basis. I do believe in miracles, however. Miracles are simply statistical improbabilities, not impossibilities. If there is a 0.01% chance that a person can be cured of something, it would be considered a miracle if she were. But 0.01% means that one person out of 10,000 can be cured. Someone has to be that one person; otherwise the chances would be 0%. So by definition, multiple miracles happen every day. Sometimes people get lucky and are the right person in the right place at the right time and are the recipient of a miracle. But I do not believe in a God who would grant one person a miracle and deny another. I never have and never will.

It might surprise you to know that despite all of this, I am a spiritual person. I know many religious people consider the self-description of 'not religious but spiritual' to be a cop-out, but I believe that I have lived my life with as strong of a moral compass as even my most devoutly religious friends, and that if I could have a sit-down dinner with Jesus, we would see eye-to-eye on many, many issues. That said, I believe that as I move forward toward my 'new normal,' an important component of my mental well-being is to be sure I am grounded spiritually. Undoubtedly, I've neglected this part of my life too much in the past, and this is my wake-up call. All things happen for a reason, after all. ;-)

Since I spent a lot of time writing about what I don't believe, I will now try to focus on what I do believe.

• I believe in a higher power, one that is greater than myself and my family, and all of humanity. I believe this power allows things to happen that we, as humans, cannot explain, whether good or bad. 
• I believe humans can achieve eternal life by living in a way that others will want live - by saying things others will remember, by doing things others will want to do, by sharing things they've learned throughout their own lives that others will continue to share. I believe this is how one's spirit continues to live. 
• Biologically, I am certain of immortality, because all living things from bacteria to fungi to plants to animals are made of the same molecules, and when we cease to function on an organismal level, our molecules are recycled and go on to create more life. We can appear in unlimited forms in unlimited numbers of lives for as long as Earth continues to exist. The carbon in our bodies may eventually turn into coal, being burned for energy, let off as carbon dioxide, taken into a plant, turned into sugar, and eventually incorporated into the creature that eats that plant. Or maybe we will take a more direct route, being decomposed by bacteria and fungi, who will use some of us for themselves, and return the rest of us to the soil, to find new life in a different form. I find great comfort in understanding the cycle of life, and am thankful for all the creatures who lived before me whose molecules create the cells that create me.
• I believe in the power of prayer. I know the word 'pray' has a lot of implications, but for lack of a better term, I will say that I pray regularly. I am not certain to whom I am praying - some of it is to that ambiguous higher power I described earlier, the one that doesn't watch out for people individually. Regardless, there is relief in talking to someone who will listen and revealing my most desperate hopes, however improbable. I believe that prayer, and collective prayer, can make a difference. I don't believe prayer can cure someone of an incurable disease, but I do believe it can give a person the strength to walk through that disease with dignity, and to give her immortality because of that dignity, and the wisdom that dignity allowed her to pass onto others. 

Growing up, my family used to pray before every meal. The prayer always began with thanking God for the food we were about to receive, and for all of our blessings. I can't remember if there were ever specific requests that followed, because by the time I was in high school, the prayer had definitely devolved into Thank-you-god-for-the-food-we-are-about-to-receieve-and-for-all-our-blessings-amen. For me, prayer has always been as much about giving thanks for what I do have - my blessings - as it has been for asking for what I do not have - my hopes.

So many of you who know me and know I'm not religious have been so kind in sending me your love and good thoughts, but I want you to know that I am okay with prayer. If you are a praying type, I would be honored to be in your prayers. If you are not a praying type, the love and good thoughts are awesome as well. I hope that by sharing what I've written above, you will realize this is not an OMG I have cancer, I better start believing in God and asking people to pray for me type of revelation. I do not believe in Heaven, so this is not a last-ditch effort to secure my entrance through the pearly gates, should things turn south. Likewise, I do not believe in Hell, so I am not afraid of burning in Hell. I am and always have been thankful for my friends who accept me as I am, cynical and irreverent, and hope that the diversity in the friends I have is a testament to the strength of the higher power I believe in. It is one that brings people together, not divides.

I'm going to start a new tradition here, one that I hope will help me remain spiritually intact as I face the difficult days ahead. I'm going to start praying here. These prayers will always be two-fold; the first part will always be my gratitude, my blessings. This type of prayer is what I was reared with - thankfulness for what I do have. I've also been reading the American Girl book series about Kaya, a Native American girl, with my daughter, and I can't help but notice that before every meal, or every hunt, or every major event, they all pray. They pray with thanks for the food they have, for the animal that gave its life so they could have food, to the earth that gave them that animal, to whatever. I'd like to start a regular tradition of thanking the powers that be for what I have. At the same time, I am also going to outline my hopes for the future, and be so bold as to ask those who pray to pray for me.

So here are my inaugural prayers. They are necessarily limited to the past few weeks of my life; if I go back any farther, I'd have to write a book.

Blessings

• I'm thankful for the wonderful care I've been receiving. The doctors I have seen have all been top-notch. I am so grateful to Drs. J and M for guiding me toward the 'right' decision the week before I left, and to Dr. L for communicating with me by e-mail while I've been on vacation.
• I'm thankful for my husband's amazing support, and for my kids, who are of course my main motivation for knowing I need to get through this with my spirit intact, and ultimately, beat this. 
• I'm thankful for being able to take this trip after all. Some amazing things have happened friendship-wise on this trip that have lifted my spirit immensely. For one, we became much closer to some friends from home, who spent part of the time down here with us. (The story on how is came to be is here.) We had such a good time with them.
• We also became friends with another family staying in the condo across the pool from us. They have a daughter our daughter's age, and the girls were like two peas in a pod from day one. Both my husband and I really enjoyed the parents, and they also had older children who were lovely. By the end of two weeks, it was almost as if they were old friends. The irony is that they are a very religious family; in fact, the father is actually a minister. It's as if God knew I needed a friend down here to put some joy in my heart, and sent me Kay. Oh wait, I don't believe in that type of thing. ;-) Regardless, it was truly a blessing - an amazing, amazing blessing for which I am so grateful. 

Hopes

• I pray for the wisdom to make the 'right' choices about some tough decisions that lie ahead, that fear and emotions won't cloud my judgment about the best medical treatment.
• I pray my loneliness through all of this will subside. In all of the blogs that I've been reading, so many people have written about what a lonely experience this is. They are right; it is lonely in a way that is very hard to describe. Losing friends and becoming estranged from family is not uncommon. I pray that I will be able to keep my friends throughout all of this, and I know that some of this depends on me. I pray that I will be able to behave in a way that will not drive people away from me. I also pray that people will be understanding of my shortcomings and continue to walk with me through this hell. I pray that I can make things right with my parents and brothers. As desperate as it may sound, I pray you will all stay with me, even if I have pathetic and undignified moments.
• I pray that I can find a way to manage my anxiety, and start sleeping again. 
• I pray for safe travels home, especially considering I will be doing it on zero hours of sleep.

Ever since I started to deal with my horrendous hip pain over a year ago, I've come to appreciate the many blogs out there, which show the more personal side to dealing with particular conditions. In fact, it is others' blogs that inspired me to start this blog while recovering from hip surgery. Never ever in a million years would I have guessed this would end up being a blog about cancer, but yet here we are. I've often felt that I should start a new blog, or rename this one, or at least take on a new Internet identity that captures my plight a little better than '39 and Hip,' but at the same time, I have to think this is a good reminder that there are many dimensions to a person's life, and sometimes they are so intertwined it is futile to try to deal with just one at a time. Life is messy, like a tangled ball of yarn. But this is good, all of the strings being intertwined. One string may be pulling us down, but we can grab hold of another that may help buoy us. And if that one doesn't help, we can keep reaching until we find one that does. We are never dangling from a single string upon which our entire life depends. There are multiple routes out of our dark times; we just have to find the combinations, the right balance, to keep ourselves afloat. I pray that I have it within me to do this.

Consultation at University Hospital

I'll start off by saying that today was a good day.

I went up to University Hospital for a 'consultation,' which my husband set up, based on a few e-mails I forwarded to him, and I had NO IDEA what to expect. Overall, the appointment was not extremely informative, but at the same time extremely helpful in that it was NOT informative.

Let me explain. 

Basically the medical oncologist we met with told me the exact same thing Dr. M told me, which is good, because I really liked Dr. M, and wanted to be able to trust that he was current in his knowledge, and that I could get good care close to home. At the same time, so much of what Dr. M told me was that there was a lot of uncertainty, and that the path for my treatment would have to be based on gut feelings and not data, which is difficult to swallow, especially as a science-oriented person. Of course, I saw Dr. M before I had the results of my oncotype, so there was even more uncertainty, but apparently even with the oncotype results, there is no clear-cut recommendation. 

I guess part of me was sort of thinking that because I was going to University Hospital, the folks up there would be able to enlighten me on all of the latest information and treatments, and they did, but what they told me wasn't any different than everything I've been told all along. All the doctors I had seen prior to this had cited the same studies, and given me the same ambiguous recommendations. This is strangely disappointing, and yet a huge relief all at once. I'm relieved that the care I've felt good about is in line with what is supposedly The Best Care available, yet disappointed that The Best Care available doesn't provide more definitive answers. I suppose you can't have it both ways.

The medical oncologist I saw today, Dr. E, was extremely thorough in all of his explanations. even more than Dr. M. This, of course, appealed to my husband, who also works in a medical field, and loves to talk about the nitty gritty details of clinical trials. However, the clinical trials that Dr. E cited were the same ones Dr. M had talked about, as apparently there are only two major studies available that are really relevant to my situation. The funny thing is that Dr. E spoke to us as if he knew that we knew exactly what he was talking about. If I weren't a cell and molecular biologist with numerous consultations with Dr. Google, I wouldn't have had any idea what he was talking about. I'm not sure if it's just dumb luck or if he read my file really closely before the meeting, because he definitely talked to me in a way that could have easily been a few levels above my head. 

The major points he made with confidence were:

1. He agreed with Dr. M that I did not need to take Xarelto anymore (YAY!!), that post-surgical DVT was different than 'unprovoked' DVT, especially since it was the result of hip surgery, which carries a higher risk of DVT than other types of surgery. However, he did say that because I now have a history of DVT, I am at increased risk for blood clotting. It isn't the same risk as unprovoked DVT, but it is still a risk factor that we should consider.  
2. He concurred that I would not really benefit from chemo. He said that he would absolutely not recommend a 'full' chemo, but might consider a 'light,' 'TC chemo,' which I believe is what both Dr. L and Dr. M alluded to at some point. 'Light' chemo MIGHT reduce my risk of recurrence by 1-2%, based on some data. However, those data were based on women with higher risk cancer than mine. OTOH, in most cases, those were older women, and just like Dr. M said, we had to add in additional risk because of my age, which brought us back to the 1-2% range. However, when you consider the side effects, some of which can be serious (e.g., leukemia), he didn't feel like it was worth it from a risk vs. benefit point of view.

Honestly, chemo was pretty much off the table in my mind, and I'm not sure what I would have done if he had recommended it. After a while, I told him I really didn't want to do chemo, and didn't need convincing that I didn't need it, and to my surprise, he seemed sort of relieved and said that many of the women he dealt with approached cancer with a no-holds-barred attitude, and wanted to do every treatment possible no matter what, so he liked to be thorough in his explanation of risk vs. benefit, which I appreciate. 

He did say that cancer at 40 is different than cancer at 60, just as Dr. M had said. And it's not just because at 40, you will likely live for more years than you will at 60; the cancer itself is different, for reasons researchers are trying to understand. He said that recent pregnancy was being investigated as a risk factor, along with ovarian function (which is obviously related to the former). His gut feeling was that it had to do with younger women having better ovarian function, and was therefore somewhat of a proponent of ovarian suppression.  

So we talked about ovarian suppression, whether it be by disabling my ovaries medically, through monthly shots, or by surgical removal. This, just so that I could take a class of drugs for post-menopausal women called aromatase inhibitors (AIs) Just as Dr. M and Dr. U said, ovarian suppression + AI was, in some cases, more effective than just tamoxifen. In some cases. Dr. E went on to explain that the results of the study that this was based on were difficult to interpret because there were two groups in the study: those who had not done chemo, and those who had done chemo. For those who had not done chemo, there was no significant benefit to ovarian suppression vs. tamoxifen. In fact, both groups in the non-chemo group fared very well. It was for the group who had done chemo, which likely suggests a more aggressive and later-stage cancer, that the ovarian suppression + AI was extremely beneficial, reducing the risk of recurrence by 35-40%. At that point, I was wondering why ovarian suppression would be at all beneficial, and as if he had read my mind, he said that the real problem is that there were very few 40-year-olds who fit my particular profile in the study. (Ahhh, that difficult situation of being the 'n of 1' as one of my professors used to call it.) 

I've since done some consulting with Dr. Google, and found an article that summarizes one of the studies he was talking about. I love this quote from the article, which basically sums up the difficulty of my particular situation: 

For me, if I go back to my practice on Monday, and I see a woman under 35 with a hormone sensitive breast cancer, I will now know what to advise that woman. Also, when I see the woman who is 48 and has a small, nonaggressive breast cancer, I will feel more comfortable that she can do very well with tamoxifen alone.

As Dr. E pointed out, I'm exactly in the middle. 

Goldilocks. 

Dr. E also made a few other interesting points that had not come up before: 

1. The oncotype DX assumes that you will take tamoxifen for at least five years. If you don't, the results mean nothing. In other words, the entire test is based on the incidences of recurrence in women who took tamoxifen post-surgery. Even if your oncotype DX is a zero, that means NOTHING if you don't undergo anti-hormone therapy.
2. While he agreed that I did not need to be on Xarelto anymore, he said there were not any definitive data that taking aspirin while on tamoxifen would help. Estrogen-driven blood clotting cannot necessarily be negated by aspirin? Or something? 

In the end, he recommended ovarian suppression plus an aromatase inhibitor, but with hesitation. He said this was based on two things: my prior history of DVT, and my age. Without the DVT, he would be fine with tamoxifen. If I were slightly older, he would be fine with tamoxifen. But... I'm in no-woman's territory. And I get the feeling he wanted to err on the side of aggression. 

I think I'm opposite most women. 8% versus 6-7%, with margins of error of 1-3%, doesn't make a treatment seem that significant to me, especially when you consider the side effects. OTOH, I am done having kids and am not particularly attached to my ovaries or menstrual cycles. At the same time, I dread the effects of menopause in the same way I dreaded having a mammogram. The mammogram turned out to be not a big deal at all - nothing like having your boob slammed in a car door, which is the comparison I had heard via some e-mail meme pre-Facebook. If menopause is not as big a deal as it is made out to be in the same way that a mammogram was not as big a deal as it is made out to be, then maybe I'd be okay with it. It's definitely food for thought. 

After Dr. E's visit, he said that a radiation oncologist was planning to see us. He also said that we could consult with their surgeon if we wanted, but he was confident she would not say anything different than my surgeon, that everyone agreed that re-excision for positive margins for DCIS was what anyone would recommend. So we declined the meeting with the surgeon but agreed to the meeting with the radiation oncologist, which was actually very informative, since I have yet to see a radiation oncologist. 

We actually met with both the chief resident and a radiation oncologist, who informed us that the chief resident was graduating tomorrow, so she was going to let her do all of the talking. Both of them were super duper awesome, which is actually unfortunate, since it would be completely impractical for me to have an out-of-town radiation oncologist. However, they provided very good information about what to expect from radiation therapy. A lot of this centered around side effects, some of which were somewhat alarming. These included things I already knew, such as fatigue and pain, but also increased risk of rib fractures, scarring on my lungs, and heart problems. I sort of rolled my eyes about the rib fracture, seeing as how I apparently already fractured my rib without knowing it, and both of them knew exactly what I was talking about, which means they really read my record carefully, which is fairly impressive.

Oh yeah, and a rare side effect of radiation therapy is... cancer. Radiation-induced cancer. This brought me to the point that I've always pondered - how radiation can both cure and cause cancer. The radiation oncologist did a nice job of explaining how cancerous cells had damaged checkpoints and therefore were killed by radiation, whereas normal cells can repair themselves, even with therapeutic doses of radiation. She went on to say it was true that some cells did not respond to radiation, but this was very rare, then added that if I was opposed to radiation, I should consider a mastectomy. LOL. I assured her that as a science-y person, I believed data, I had just never heard a great explanation for how radiation worked without causing healthy cells to become cancerous, but that her explanation was the best I had heard. She assured me that the data showed there was a 1-2% chance of developing cancer as a result of radiation therapy, which is basically the same chance of developing DVT post hip surgery. I wonder if I should believe that my bad luck has already been exhausted or whether I just have bad luck in general. Ha. 

Anyway, apparently doing radiation over the course of four weeks as opposed to six is The New Thing. They said they do four-week treatments at the medical school, but warned me that some places still consider six weeks to be standard, and that I might want to consider questioning this if it came up. Then the radiation oncologist added that, to be fair, there weren't actually any data for women in my age range, which I'm starting to realize is the norm. However, there were plenty of data to suggest that four weeks of radiation in other age ranges were just as effective as six weeks, and there were no data to suggest that this should be different for women in my age range. So basically this was good information to know if I wanted to advocate for myself for a four-week vs. six-week course (which would actually be nice). A four-week course of radiation delivers the same dose overall, just in a shorter time frame. It is three weeks of radiation to the entire breast followed by one week just in the spot where the tumor was. In a six-week course, it is five weeks to the entire breast and one week to the spot where the tumor was.

Since they implied I should try to get a 'good' and 'current' doctor, I asked for a recommendation for a radiation oncologist in town, and was happy that the doctor they suggested was one that had been recommended by a colleague. I like it when doctors have multiple references, especially after they emphasized the importance of making sure the radiation treatments would stay away from my heart (especially since you're only 40!). Somehow, although radiation has always been a part of the treatment plan, I haven't met with a radiation oncologist. Setting up an appointment is on my 'to do' list for tomorrow. 

Ultimately, I'm glad that I went. It was good for peace of mind, but I am fairly sure I want to stick with Dr. M. I had a sleepless night last night, despite taking part of an Ambien, partly because that is the norm for me, but also because I wasn't sure what I would do if I got radically different advice today. Although Dr. E explained everything in a slightly different way than Dr. M, it really didn't change the overall jist. Maybe I'm biased toward Dr. M at this point because I'm not sure how I feel about ovarian suppression, and I want a doctor who understands that, and Dr. M definitely does. Of course, I don't want to choose a route that is stupid from a statistical standpoint, and after visiting with Dr. E, I'm confident that opting for tamoxifen might be slightly riskier, but is by no means reckless. At any rate, now that I have this additional information, I feel like I can go forward in a more informed and confident fashion. 

I always feel sort of weird 'shopping around' for opinions, but apparently they are very used to this at University Hospital, and treated it very much like a second opinion from the start. I feel comfort in knowing that I can always go back for another second opinion if I feel like I need it. I think the tricky thing about my cancer is that it is both straight-forward and not straight-forward at the same time. It is straight-forward in that it is early stage, not in my lymph nodes, hormone-sensitive, and not super aggressive. This means that after radiation therapy, whatever treatment route I choose, it is unlikely to have a drastic effect on the outcome. Even if I had an oncologist who said I should do nothing, or no oncologist at all, I'd still have a much greater chance than not of no recurrence in 5-10 years. As Dr. M said, there is an 80% chance that everything I do with him will be a complete waste of time. OTOH, it is perhaps possible that I could greatly reduce my chance of recurrence with other therapies; those chances are just unknown. A 10% to 8% chance doesn't seem huge to me, but a 10% to 5% chance does. Unfortunately, as both Dr. M and Dr. E concur, I'm the one who has to decide. Doctors can give me data and talk about clinical trials with me, but ultimately, it comes down to what I want to do.

As Dr. E told me, my case is ambiguous enough that I could shop around for oncologist after oncologist, and a few would probably recommend chemo, a few would recommend tamoxifen only, a few would recommend ovarian suppression + AI, and a few might be okay with lumpectomy + radiation only. And none of them would be negligent, in his opinion. This is both comforting and alarming at the same time. I can make a choice, and no one will question it. 

At the same time, I feel like it's a pretty big choice.

Meeting with Medical Oncologist #2

I had a meeting with Dr. M, medical oncologist #2, this morning. I liked him a lot better than Dr. U, and so did my husband. So, for now, he's a keeper. The thing is that he really didn't say anything very different than Dr. U, but I felt more comfortable and at ease with him, like he was someone I could talk to very easily. He was also funny. Not in a HAHA YOU ARE SOOOOO FUNNY! slapstick kind of way, but in a subtle way, which I can relate to. Aaaaand, he was a huge nerd, which I have to admit I sort of love. He actually asked me right off the bat what I did as far as work, and was excited that I teach biology so that he could talk 'higher level science' with me. And his dad worked his whole life for the same company my husband works for, so he 'gets' us. That said, he explained everything very thoroughly, and doodled as he explained everything.

As predicted, he said we would have to wait for the results of the oncotype before deciding on chemo vs. no chemo. However, he did a broad overview of all of the options, and said that as far as cancer goes, there are four basic questions and answers he likes to cover with patients, even if they seem overly simple. These questions are:

1. What type of cancer is it?

2. Where is the cancer?

While most people have heard of Stage I, II, III, and IV, the way the stage is determined is by the TNM system, where T is for tumor size, N is for lymph nodes, and M is for metastasis. 

3. What treatment should we do?

For breast cancer, there are of course two surgical options: mastectomy or lumpectomy. Since I opted for lumpectomy, or 'breast preservation surgery,' I will almost definitely benefit from radiation therapy. We briefly discussed that I would need a radiation oncologist, and the fact that there were only a few in town; however, Dr. M said the radiation would be very straight-forward, and any of the radiation oncologists or facilities would be just fine.

Along with radiation, some sort of anti-hormone therapy is pretty much a given as well. Since I am pre-menopausal, the only real option is tamoxifen. Dr. M explained that tamoxifen was a type of drug called a SERM, or Selective Estrogen Receptor Modulator. A lot of people think it is an estrogen blocker, and it is, but only in breast tissue. Because there are different estrogen receptors in various parts of the body, tamoxifen actually increases the effects of estrogen in other parts of the body such as the bones and uterus, which makes me sort of nervous considering my uterus was 'suspicious' on my PET scan. (I feel a hysterectomy in my future.) He also added that the way estrogen works is that it binds to estrogen receptors, which once activated serve as transcription factors; in other words, estrogen exerts its effects by changing gene expression. (I could tell he was really excited to tell me this, since he knew I would understand. And of course, I came home and immediately Googled estrogen receptors to learn more. For example: http://physrev.physiology.org/content/87/3/905.)

We then had a discussion about my DVT and the fact that one side effect of tamoxifen is increased risk for blood clotting. Surprisingly, once I explained the development of my DVT, Dr. M said he would not have a problem with me being on tamoxifen and a prophylactic dose of daily aspirin. He said that post-surgical DVT was a 'reversible risk factor' and not the same as DVT out of the blue. However, he would defer to my primary care physician. This is good news, though, because I was sort of imagining either being on Xarelto for the rest of my life, or getting forced into having my ovaries removed before I was ready because I would not be able to take tamoxifen. I know this situation merits further consideration and probably some follow-up tests (e.g., a fourth leg ultrasound), but I am just as willing to trust Dr. M as I am my PCP, seeing as how Dr. M is board certified in hematology.

Speaking of ovaries, Dr. M did say that in two major studies, a certain subset of women who were pre-menopausal, but opted to have their ovaries either removed or medically shut down, fared better than pre-menopausal women on tamoxifen. However, he didn't seem nearly as anxious to kill my ovaries as Dr. U. He also asked if we were done having kids, and when we said yes, he asked whether we were SURE, because that was an important consideration. I find it interesting he is the first doctor to bring this up. I never really considered the importance of doctors discussing this with me, because I knew that I was done having kids, plus, I am 40... which is young to have breast cancer but old to be having kids. So that was our discussion about anti-hormone therapy.

Dr. M said we didn't need to discuss targeted therapy, because for breast cancer this would mean Herceptin for a HER2 positive tumor, but my tumor is HER2 negative.

Of course, chemotherapy is the big question mark, and obviously depends on the oncotype (more on this below).

4. What is the prognosis?

Very generally speaking, there is about an 80% chance that in 10 years I'll be alive and cancer-free, assuming, of course, that nothing else kills me (like this damn cough). The chance of recurrence is around 20%, and radiation will reduce that by around 50%, down to about 10%. The weird thing is that 80% sounds very high, but so does 20%. As I tell my class when we do genetics problems, a 25% chance of something happening sounds a lot higher when it is your child and a deadly disease you are talking about. I guess the same goes for when it is you and it is breast cancer.

Dr. M explained the stats by saying, 'There is an 80% chance that all of the time you spend with me and that everything we do will be an unnecessary waste of time.' LOL. He compared it to a measles vaccination, asking me if I had been vaccinated against the measles. I said yes, and he asked if the vaccination had worked. I replied that so far it seemed to have worked, seeing as how I've never had measles. Then he said, 'Either the vaccine worked, or you've never been exposed to the measles, and the vaccine was just a waste of time.' He then went on to say that the whole basis behind the anti-vaxxer movement was risk vs. chance of exposure: some parents don't want to subject their kids to potential toxins to protect them against something they have very little chance of being exposed to. Then he eyed us questioningly and said, 'Perhaps that's you...?' I shook my head vigorously and assured him that wasn't us. Then he replied, with relief in his voice, 'Okay, just checking! We are in State With A Lot Of Crunchy Types, after all.' The point is that with radiation, it's likely we could bring the odds of no recurrence up to 90%, which is significant. The question is what, if anything, we want to do with that final 10%.

Dr. M had his MA check on the the oncotype results. Apparently the lab had just received the sample and said the results would likely be available by Friday, June 5th. However, he explained in general terms that the results would be numerical, which I knew, thanks to my new favorite web site breastcancer.org. A low-risk score is under 18, whereas a high-risk score is over 32. He repeated what Dr. L had said, that it was the in-between part that is hard, because there are no data to guide treatment decisions in this range. It's literally a crap shoot; in this range, things have to be decided based on gut feelings, and that is not easy. Then he added jokingly, 'With my luck, you'll probably come out in between.' LOL. His luck? What about my luck? According to my orthopedist, there is a 1% chance of developing DVT post hip arthroscopy, yet I managed! Though admittedly, I'd be much happier with an in-between score than a high score regardless of how difficult the ambiguity might be.

Dr. M did go on to say that although the cancer did not appear to be a super aggressive type, we had to be somewhat careful. He said that there was a big and statistically relevant difference between pre-menopausal vs. post-menopausal cancers. They behave differently. Pre-menopausal cancer is more aggressive, for reasons that are not well understood. Not only is the cancer more likely to recur, but it is also more likely to metastasize, meaning there is a risk it won't come back in my breast, but rather, in my uterus or bones or liver. So yearly mammograms (which I swear I will do from now on) won't necessarily cut it. For cancer at 40, you should add one degree of severity. This was actually sort of sobering news, so I didn't ask for more specifics. Come to think of it, Dr. M was sort of more gloom and doom than Dr. U, but somehow, despite the fact that he did not sugar coat anything, he managed to not make it sound awful. At least, I didn't leave feeling like I wanted to slit my wrists (though I sort of do now, haha).

Finally, I asked him what his thoughts were on working while receiving chemo and/or radiation therapy, simply because the nature of my job would require me to give a significant amount of notice (not from a legal standpoint, but from a conscientious professional standpoint). He said it really depended; if you break rocks for a living, it's going to be harder than if you sit at a desk all day. He asked what I did, then added, 'I mean, I know you teach, but what is your day like?' I said when I wasn't teaching, I was usually sitting at my desk. He asked me how many courses I taught per semester, and when I told him four, his jaw dropped. This made me like him. Only people who have actually taught a college course before get that four courses is a lot. Yes, I have flexibility, but it's not like I sit around all day twiddling my thumbs. Apparently he taught a college course one time, and said it was a lot of work - 'too much for me.' LOL. Anyway, he said it really depended, and he couldn't make that call, but he always supported his patients' decisions - if they needed documentation for medical leave or whatever, he would provide it. He also said that the drug he had in mind for chemo, if I did chemo, would make my hair fall out (boo :( ) but was not as brutal as other drugs in terms of side effects like fatigue and nausea. It would hypothetically be possible to work through it, if I wanted to/needed to. However, I've pretty much decided that if I have to do chemo, I am not going to subject myself to the toxicity of my work environment - with my super stressful colleagues/students and hundreds of sick people all around me - while I am already having to go through hell. It's bad enough I have a permanent limp, and now I'm supposed to teach with no hair? WTF? LOL. Radiation is different, however, and I have read mixed things about working through radiation therapy. While I do have a strong desire for things to stay as normal as possible, and not let cancer take over my life, I also need to be realistic about the fact that this is going to take a toll on me, especially considering my ridiculously low stress threshold.

The whole appointment took about an hour from start to finish, including a quick physical exam. Dr. M sort of made me laugh by asking me if it was okay if he checked my breasts - as if I am going to see a doctor for breast cancer that I won't allow to see or touch my breasts. As we were leaving, he asked if I wanted something for my cough, and I said YES!!! so he gave me a prescription for the heavy-duty cough medicine that knocks you out, so I'm hopeful I might be able to get some sleep tonight. The people at the pharmacy probably thought I was going way overboard seeing an oncologist for a cough. LOL.

All in all, it was a good appointment, though not highly informative, but at least that was expected. I left with a much better impression of Dr. M than Dr. U, so that is a relief. It's hard to know what to expect from an oncologist; like so much of this experience, you only know when you like or don't like something once you've encountered it. Do you want someone to smile when they deliver bad news, or act all gloomy, or show no emotion at all? It's hard to say. You just know it's right when it is right. And so far, it feels right.