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).
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.
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.
Ok.....agreed that 20% DOES sound high. Damn!
ReplyDeleteHowever it sounds like you can lower that 20% and deal with it and DAMN I LOVE dr m after reading this! What a thorough visit and thoughtful care he provided. So glad you got to see him. Hoping hard for 18 or lower on Friday....
Yeah, 20%... WTF? A glass 20% empty, haha. I did sort of love Dr. M, and I cannot quite figure out why, but I figure I'll just go with it until he gives me a reason to think otherwise. :)
DeleteHe sounds like a good Dr. and it's important to have someone you trust. If you do have to have Chemo and your hair falls out I'm sure you'll still look super beautiful. I'll come out and help you chose some cute hats. :) If you want to keep teaching maybe you could do one oneline course. My former boss worked through 4 years of on and off chemo (she obviousy had a desk job). But she said the day of and the day after chemo were the worst. But she was able to stick to a 3 days a week schedule. Now she was one tough lady... but so are you. I'm not saying you should, only that if you want to I think you'll be able to. But you should not feel at all bad about wanting to take all your spare energy and focus it on your family. :) Anyway, thanks for the update. I have a few things to google now. :)
ReplyDeleteAs I recall, your former boss's story does not have a happy ending, hence the former. :( LOL. Anyway, unfortunately, we had to submit our fall teaching schedules, like, a year ago, and there is not an online class in the schedule. I might be able to rearrange my schedule a little bit, though (like last fall - deja vu all over again).
DeleteYeah, obviously my boss’ cancer was totally different but the drugs are similar. But I gather people also have a huge spectrum of different reactions to the drugs. So you never know. I think priority number one is to not add unnecessary stress to your life.
DeleteYeah, ideally, I'd like to see how therapy goes, but I think the tricky part with my job is that I can't just be like, 'Oh, I'm feeling pretty lousy after all; I don't think I can work for a few weeks.' I mean, I can (and of course people have had medical emergencies before), but it creates a very difficult situation.
DeleteSo glad that you had good feelings about Dr. M! It sounds like he has a good plan and that things are proceeding as well as can be expected. Let us know about the oncotype-- fingers are crossed for the best news possible!
ReplyDeleteAlso... Trying to understand... radiation will reduce chance of recurrence to 10%, right? What about tamoxifen/other anti-hormone therapy or shutting down ovaries, or even mastectomy? Would those reduce that 10% as well, or is it less understood what their effect would be? Just curious.
And a positive anecdote in case chemo enters the plan: obviously chemo and radiation affect everyone differently, but a very good friend of mine was diagnosed with breast cancer about a year and a half ago, and I believe it was invasive ductal carcinoma as well. She went through chemo from March to early August and did absolutely fantastic on it. She was able to continue working and only missed a small amount of work for the treatments, and the biggest side effect for her was just a bit of tiredness in the first 12 weeks and some nausea in the last 6 or so weeks (due to a tougher drug). All in all, from diagnosis to finishing the radiation treatments, I think it was about 7 months. Blah blah blah, I know everyone has a friend/family member with cancer story, and I know every case is different, but all of this is to say that it's possible for chemo to not be the worst thing ever, and that's what I'll be hoping for for you if it enters the picture.
So... I finally have an answer to this question of recurrence. Based on averages, it appears that tamoxifen would bring the risk of recurrence down to around 8% and ovarian suppression to 6-7%ish. But there are a lot of assumptions involved in this (subject of a future post).
Delete