rolling the dice
September 15, 2024 9:36 PM Subscribe
Chemo versus different adjuvant therapy? See below.
Nobody here is my doctor, et cetera.
I was surgically treated for early-stage cancer. Clean margins, no indications of spreading. My oncologist looked at the various tests they did on the cancer, and said a pill would be enough to prevent distant recurrence. For the sake of being thorough, I went to another oncologist for a second opinion. I expected a similar one as the first doctor gave me. Instead, he said the first oncologist had underestimated the severity of my case. He recommended immediate chemotherapy, dismissing the pill recommended by the first oncologist as riskier than chemotherapy. To be clear, doing nothing would carry much more risk than either of these options.
I was distraught. This is not a matter of being told no chemo before surgery, only for surgery to show that the disease was more advanced than initially thought. This was a recommendation for a different, much harsher treatment, by a doctor previously uninvolved with my case.
The idea of chemo terrifies me, especially as it appears to be recommended here as the safest possible prophylactic measure, rather than as treatment for already-verifiably-present-by-test disease. The doctor downplayed the effects of chemo, saying people feel "a little under the weather" with the regimen he recommended for me, but that they could still go to work and function. I went home and researched the drugs. He didn't mention the steroids or anti-nausea drugs they use in conjunction with the drugs, and he glossed over the hair loss, chemo brain, neuropathy, thrush, puking, extreme fatigue, and other side effects that people experience. Not everyone, since it's different for everyone, but it doesn't sound minor.
I went home and studied the reports the two doctors based their decisions on. It seems that my cancer falls in almost exactly in between a measure of"probably will never come back" and "Yes, tomorrow, prepare your will." In looking at how these tests are measured and taking into account factors like family history, I could see valid arguments for both courses of treatment, and I can undertstand the logic of how these doctors reached their conclusions. It's not that I feel either opinion is wrong, but clearly the conclusions are very different.
I am very against the idea of chemotherapy as a precaution. I would rather just take the pill as my precaution. My husband is terrified that choosing the pill option will result in recurrence, when chemo has a higher chance of preventing it. I do not want to pursue a treatment option that is so harsh, when a milder one, which meets the standard of care, might suffice. He calls avoiding chemo "rolling the dice". Maybe that's an accurate description. I'm ok with that roll. He isn't. Of all the pain this diagnosis has caused me, the hardest is arguing with loved ones about the best course of action.
Please advise (strictly non-medically).
Nobody here is my doctor, et cetera.
I was surgically treated for early-stage cancer. Clean margins, no indications of spreading. My oncologist looked at the various tests they did on the cancer, and said a pill would be enough to prevent distant recurrence. For the sake of being thorough, I went to another oncologist for a second opinion. I expected a similar one as the first doctor gave me. Instead, he said the first oncologist had underestimated the severity of my case. He recommended immediate chemotherapy, dismissing the pill recommended by the first oncologist as riskier than chemotherapy. To be clear, doing nothing would carry much more risk than either of these options.
I was distraught. This is not a matter of being told no chemo before surgery, only for surgery to show that the disease was more advanced than initially thought. This was a recommendation for a different, much harsher treatment, by a doctor previously uninvolved with my case.
The idea of chemo terrifies me, especially as it appears to be recommended here as the safest possible prophylactic measure, rather than as treatment for already-verifiably-present-by-test disease. The doctor downplayed the effects of chemo, saying people feel "a little under the weather" with the regimen he recommended for me, but that they could still go to work and function. I went home and researched the drugs. He didn't mention the steroids or anti-nausea drugs they use in conjunction with the drugs, and he glossed over the hair loss, chemo brain, neuropathy, thrush, puking, extreme fatigue, and other side effects that people experience. Not everyone, since it's different for everyone, but it doesn't sound minor.
I went home and studied the reports the two doctors based their decisions on. It seems that my cancer falls in almost exactly in between a measure of"probably will never come back" and "Yes, tomorrow, prepare your will." In looking at how these tests are measured and taking into account factors like family history, I could see valid arguments for both courses of treatment, and I can undertstand the logic of how these doctors reached their conclusions. It's not that I feel either opinion is wrong, but clearly the conclusions are very different.
I am very against the idea of chemotherapy as a precaution. I would rather just take the pill as my precaution. My husband is terrified that choosing the pill option will result in recurrence, when chemo has a higher chance of preventing it. I do not want to pursue a treatment option that is so harsh, when a milder one, which meets the standard of care, might suffice. He calls avoiding chemo "rolling the dice". Maybe that's an accurate description. I'm ok with that roll. He isn't. Of all the pain this diagnosis has caused me, the hardest is arguing with loved ones about the best course of action.
Please advise (strictly non-medically).
Honestly, I wouldn't want to take a chance on this. Here's the thing: if you start chemo and you find the side effects intolerable, you can always stop it (and presumably switch to whatever the medication is, but confirm that). Declining a likely more effective medication because you might not be able to endure the side effects seems unwise to me.
(Also, what are the side effects of Treatment A? Probably not none...)
Ultimately, though, it really is your call, not your husband's, or even your doctors'. It's your body! Good luck to you.
posted by praemunire at 9:45 PM on September 15 [5 favorites]
(Also, what are the side effects of Treatment A? Probably not none...)
Ultimately, though, it really is your call, not your husband's, or even your doctors'. It's your body! Good luck to you.
posted by praemunire at 9:45 PM on September 15 [5 favorites]
Would it be possible for you to get a third opinion? It sounds like the second opinion from the chemo-recommending doctor was not very nuanced. Describing chemo side effects as "a bit under the weather" would make me distrustful of him, tbh.
I would ask my doctor(s) how much each respective treatment options decreases the risk of recurrence. For example if the risk was 1% but the chemo could reduce it to 0.5% that's a different set of choices than 5% versus 1% (made-up numbers of course).
Also, it would not be "rolling the dice". It would be "making the best choice you could with the information you have at this time".
posted by M. at 10:12 PM on September 15 [10 favorites]
I would ask my doctor(s) how much each respective treatment options decreases the risk of recurrence. For example if the risk was 1% but the chemo could reduce it to 0.5% that's a different set of choices than 5% versus 1% (made-up numbers of course).
Also, it would not be "rolling the dice". It would be "making the best choice you could with the information you have at this time".
posted by M. at 10:12 PM on September 15 [10 favorites]
For background, I’m in the middle of treatment for an early stage ER positive idc breast cancer. It sounds like you might also be getting treated for breast cancer.
For clarifying the treatment path in my case, my treatment team sent the tumor itself for Oncotype DX testing. This test reveals a number that summarizes risk of recurrence based on the genes of the tumor itself.
Originally, I was told I’d be going to radiation & anti-estrogen therapy. But now my care team is recommending chemotherapy because according to my Oncotype DX score, I have a pretty high chance of recurrence without it.
In your case, do you have access to a similar test that predicts recurrence risk? The resulting score could leave you and your loved ones more at peace with either decision.
For my part, I was really hoping not to do chemotherapy, but I’m accepting it based on the information at hand. I will be having to socially distance & monitor my health frequently. This does sound frightening. You may send me a message if interested, although my response may be slow.
posted by dog-eared paperback at 10:54 PM on September 15 [2 favorites]
For clarifying the treatment path in my case, my treatment team sent the tumor itself for Oncotype DX testing. This test reveals a number that summarizes risk of recurrence based on the genes of the tumor itself.
Originally, I was told I’d be going to radiation & anti-estrogen therapy. But now my care team is recommending chemotherapy because according to my Oncotype DX score, I have a pretty high chance of recurrence without it.
In your case, do you have access to a similar test that predicts recurrence risk? The resulting score could leave you and your loved ones more at peace with either decision.
For my part, I was really hoping not to do chemotherapy, but I’m accepting it based on the information at hand. I will be having to socially distance & monitor my health frequently. This does sound frightening. You may send me a message if interested, although my response may be slow.
posted by dog-eared paperback at 10:54 PM on September 15 [2 favorites]
As stated above, a lot depends on the type of cancer, the staging, etc (i.e. how aggressive/fast growing versus how far it has spread from the initial location, etc). For now, I will take your report at face value, as you say it was detected (and treated) "early" (for certain values of early).
I'm a 17 year survivor of cancer (in my case Non-Hodgkin's Lymphoma). It was detected after a year and immediately treated with chemo. At the time, immunological treatments had not yet been developed for the mainstream.
I can tell you I was terrified of chemo: My mother had a similar cancer maybe 25 years earlier, and at that time, chemo had horrible side effects. So she started with surgery and radiation. I remember her constant vomiting. It was so horrible that when the cancer came back, she waited much to long before getting treated again, and she died during surgery to remove returning tumors. HOWEVER - when I got my chemo, the chemo cocktail had evolved greatly, as well as the palliative treatments (such as anti-nausea drugs, nutrition advice, etc).
Long story short: I started a weekly chemo treatment a week after finding out I had tumors all through my chest. No surgery, no radiation, just chemo. No vomiting. Not much fever or fatigue. Full hair loss. Mild gastro-intestinal effects (soft poops, not the end of the world!). I tolerated it so well that I was the designated person to talk panicking patients "off the ledge". They would see me sitting in the special chemo chair, my chest port connected to the drip, calmly working on my laptop and still conducting client calls, and it made them realize it was going to be OK. It got to be a ritual: Chemo-Mondays, preceded by Sunday steak-and-spinach meals (iron, for whatever reason). 6 weeks later I was in remission.
Importantly, I know that my mother's cancer returned because at the time, they lacked the ability to detect if the treatment not only removed all the tumors, but also killed *all* the cancer before it spread elsewhere. That, plus I loudly complained of experiencing similar cancer side effects (itching, night sweats, etc) for a year before I found a doctor who took it seriously. So I was not going to take any doctor's opinion that "all was well" at face value. Today, tests like PET-scans - which send a radioactive agent through your body, alloving any remaining cancer cells - if any - to light up like a christmas tree - can make sure you are totally cancer-free. So I got PET scans and blood tests to make sure it was gone. And I regulary re-test, at least blood panels annually since then.
17 years since then, no recurrence. I am beyond the return window.
Why am I telling you this story? First, to tell you that chemo does not necessarily equal horrible side effects. It all depends on your cancer type and the specific chemo cocktail. Second, you were wise to get a second opinion. Maybe get a third, or at least discuss the pros and cons of chemo versus pill (whatever you mean by "pill" in this case, do you mean an immunological treatment?) in more detail. Importantly, consider that there are no black & white answers, only probabillities. That is why you can get two very different answers from two doctors. Perhaps one is looking at a "typical" outcome and opts for the milder option, while the other looks at a worst case scenario and thinks "better safe than sorry"? Either way, you deserve a better explanation of the treatment options, the risks and the testing so you can make an informed decision. As praemunire said above, it's your body, not your doctor's.
My advice would be: It's not the severity of the treatment that matters, it's how effective it is against your kind of cancer. If chemo is harsher but more effective, I would go for it. You don't want the cancer to recur, because it tends to be harder to treat if it returns, the second time around.
Also, please make sure to get proof that all the cancer has been eliminated. PET-scans are one way, and there will be blood tests specific to your cancer situation. At the very least, ask your oncologist for a surveillance protocol (how often to test, what kind of test, etc).
Lastly, while it must all seen quite overwhelming, consider how "lucky" you are: At least you detected it early, it responded to treatment. You survived the surgical intervention. That is fantastic and I'm very happy for you!
So now, just make sure to stomp any potential threat of a recurrence. The inconvenience of further treatment is nothing compared to being able to sleep at night, knowing that you have the rest of your life to enjoy cancer-free.
All the best as you continue your journey.
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 11:16 PM on September 15 [24 favorites]
I'm a 17 year survivor of cancer (in my case Non-Hodgkin's Lymphoma). It was detected after a year and immediately treated with chemo. At the time, immunological treatments had not yet been developed for the mainstream.
I can tell you I was terrified of chemo: My mother had a similar cancer maybe 25 years earlier, and at that time, chemo had horrible side effects. So she started with surgery and radiation. I remember her constant vomiting. It was so horrible that when the cancer came back, she waited much to long before getting treated again, and she died during surgery to remove returning tumors. HOWEVER - when I got my chemo, the chemo cocktail had evolved greatly, as well as the palliative treatments (such as anti-nausea drugs, nutrition advice, etc).
Long story short: I started a weekly chemo treatment a week after finding out I had tumors all through my chest. No surgery, no radiation, just chemo. No vomiting. Not much fever or fatigue. Full hair loss. Mild gastro-intestinal effects (soft poops, not the end of the world!). I tolerated it so well that I was the designated person to talk panicking patients "off the ledge". They would see me sitting in the special chemo chair, my chest port connected to the drip, calmly working on my laptop and still conducting client calls, and it made them realize it was going to be OK. It got to be a ritual: Chemo-Mondays, preceded by Sunday steak-and-spinach meals (iron, for whatever reason). 6 weeks later I was in remission.
Importantly, I know that my mother's cancer returned because at the time, they lacked the ability to detect if the treatment not only removed all the tumors, but also killed *all* the cancer before it spread elsewhere. That, plus I loudly complained of experiencing similar cancer side effects (itching, night sweats, etc) for a year before I found a doctor who took it seriously. So I was not going to take any doctor's opinion that "all was well" at face value. Today, tests like PET-scans - which send a radioactive agent through your body, alloving any remaining cancer cells - if any - to light up like a christmas tree - can make sure you are totally cancer-free. So I got PET scans and blood tests to make sure it was gone. And I regulary re-test, at least blood panels annually since then.
17 years since then, no recurrence. I am beyond the return window.
Why am I telling you this story? First, to tell you that chemo does not necessarily equal horrible side effects. It all depends on your cancer type and the specific chemo cocktail. Second, you were wise to get a second opinion. Maybe get a third, or at least discuss the pros and cons of chemo versus pill (whatever you mean by "pill" in this case, do you mean an immunological treatment?) in more detail. Importantly, consider that there are no black & white answers, only probabillities. That is why you can get two very different answers from two doctors. Perhaps one is looking at a "typical" outcome and opts for the milder option, while the other looks at a worst case scenario and thinks "better safe than sorry"? Either way, you deserve a better explanation of the treatment options, the risks and the testing so you can make an informed decision. As praemunire said above, it's your body, not your doctor's.
My advice would be: It's not the severity of the treatment that matters, it's how effective it is against your kind of cancer. If chemo is harsher but more effective, I would go for it. You don't want the cancer to recur, because it tends to be harder to treat if it returns, the second time around.
Also, please make sure to get proof that all the cancer has been eliminated. PET-scans are one way, and there will be blood tests specific to your cancer situation. At the very least, ask your oncologist for a surveillance protocol (how often to test, what kind of test, etc).
Lastly, while it must all seen quite overwhelming, consider how "lucky" you are: At least you detected it early, it responded to treatment. You survived the surgical intervention. That is fantastic and I'm very happy for you!
So now, just make sure to stomp any potential threat of a recurrence. The inconvenience of further treatment is nothing compared to being able to sleep at night, knowing that you have the rest of your life to enjoy cancer-free.
All the best as you continue your journey.
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 11:16 PM on September 15 [24 favorites]
Get a third opinion, and hope that it agrees with one or the other that you already have in hand.
posted by the Real Dan at 12:06 AM on September 16 [1 favorite]
posted by the Real Dan at 12:06 AM on September 16 [1 favorite]
You have to make the decision that is right for you. Your husband only gets to make choices about his own medical care.
It sounds like you are very frightened of the proposed chemotherapy. I think you will make a better decision if you can reduce your fear. For me that would look like doing a lot of research about exactly what is involved, the side effects and how they are managed. For you that might be speaking to someone or meditation, or sitting with your feelings until they pass.
If you are genuinely unsure about which would be the best choice, get a third opinion.
posted by plonkee at 2:23 AM on September 16 [1 favorite]
It sounds like you are very frightened of the proposed chemotherapy. I think you will make a better decision if you can reduce your fear. For me that would look like doing a lot of research about exactly what is involved, the side effects and how they are managed. For you that might be speaking to someone or meditation, or sitting with your feelings until they pass.
If you are genuinely unsure about which would be the best choice, get a third opinion.
posted by plonkee at 2:23 AM on September 16 [1 favorite]
I would be looking at genetic tests that can help guide treatment decisions, there are a few.
posted by superelastic at 5:17 AM on September 16
posted by superelastic at 5:17 AM on September 16
Did you talk to either doctor about your feelings on the matter?
(IAAD, NYD) I make a lot of recommendations every day. Once in a while I feel almost 100% certain without hearing from the patient because it's simply the only reasonable approach, but the vast majority of the time, I can't make a recommendation for the patient in front of me without knowing something about how they feel about what's going on. It could be as simple as, "I can never remember to take my evening medications, so I'd rather use the less effective pill that's only once a day, because I know I won't forget to take it," or something as complicated as, "The side effects of chemo sound so terrible that I think I would rather not do it, even though it may increase the risk of recurrence." Sometimes it's a concern that needs both the patient's input and my own to make sense of, like, "I hate being admitted to the hospital more than anything, so I want the treatment that will help me stay at home the most, even if it doesn't work the best in the long term."
I think many times patients feel like you go to the doctor to get "The Opinion" and then it's up to you to try to fit that into how you feel and what you value, but as you've seen, it's really hard to do that—you've never been in this situation before! Of course some doctors are easier to talk to than others, but it is part of all of our jobs to turn "The Opinion" into a personalized plan of action. Not just personalized to the test results and the imaging and the biopsy, but personalized to how you feel about your treatment and what is important to you. That doesn't mean we can always provide a plan of treatment the patient is happy with—after all, how happy are most people about being sick?—but it does mean that we can either provide modifications to meet your needs or explain why we can't.
posted by telegraph at 5:39 AM on September 16 [14 favorites]
(IAAD, NYD) I make a lot of recommendations every day. Once in a while I feel almost 100% certain without hearing from the patient because it's simply the only reasonable approach, but the vast majority of the time, I can't make a recommendation for the patient in front of me without knowing something about how they feel about what's going on. It could be as simple as, "I can never remember to take my evening medications, so I'd rather use the less effective pill that's only once a day, because I know I won't forget to take it," or something as complicated as, "The side effects of chemo sound so terrible that I think I would rather not do it, even though it may increase the risk of recurrence." Sometimes it's a concern that needs both the patient's input and my own to make sense of, like, "I hate being admitted to the hospital more than anything, so I want the treatment that will help me stay at home the most, even if it doesn't work the best in the long term."
I think many times patients feel like you go to the doctor to get "The Opinion" and then it's up to you to try to fit that into how you feel and what you value, but as you've seen, it's really hard to do that—you've never been in this situation before! Of course some doctors are easier to talk to than others, but it is part of all of our jobs to turn "The Opinion" into a personalized plan of action. Not just personalized to the test results and the imaging and the biopsy, but personalized to how you feel about your treatment and what is important to you. That doesn't mean we can always provide a plan of treatment the patient is happy with—after all, how happy are most people about being sick?—but it does mean that we can either provide modifications to meet your needs or explain why we can't.
posted by telegraph at 5:39 AM on September 16 [14 favorites]
I would also get a third opinion since the second doctor, even if it turns out they have a valid point, doesn't sound like they have good communication skills. You will also be better prepared this time to ask questions and advocate for yourself and your priorities based on what you've learned since visiting the second doctor (similar to what telegraph is getting at above). In turn, this will help you communicate your decision to other people.
I would also invite your husband to come with you. Perhaps if he has a chance to ask the doctor questions he will feel better, either because of the answers the doctor provides, or because he'll be confident that even if you are making a decision he disagrees with, he will know you're making a well-informed decision. Or maybe just feeling more included in the decision making progress will help him (even if ultimately the final decision is yours to make).
posted by coffeecat at 7:54 AM on September 16 [1 favorite]
I would also invite your husband to come with you. Perhaps if he has a chance to ask the doctor questions he will feel better, either because of the answers the doctor provides, or because he'll be confident that even if you are making a decision he disagrees with, he will know you're making a well-informed decision. Or maybe just feeling more included in the decision making progress will help him (even if ultimately the final decision is yours to make).
posted by coffeecat at 7:54 AM on September 16 [1 favorite]
Get a third opinion - hospitals like Dana Farber do online consults!
Also, if you are ready to hear them, ask doctors for your actual prognosis numbers (there are calculators they use for this) and the risk reduction that either treatment would have on your prognosis. Chemo giving you a 10% better outcome for a 2% chance of recurrence might not feel worth it for you, but 10% off a 40% chance of recurrence might.
Almost all friends I've talked to that have gone though cancer treatment described feeling anxious when treatment ended and they were unsure that they have done everything that they could have. I would really take this into account as well. When you finish the chemo pill, it's probably too late to go back and get chemo. FWIW I was treated for an early stage cancer 4 years ago and did chemo, surgery, and a chemo pill. Though I do not feel anxious about it day to day, a new treatment became available just as I was finishing, and I was not eligible because of the timing - I still wish I could go back and do that treatment. Treatment feels like it takes forever when you are doing it, but one day it will be long behind you, and the things you feel like you "missed" by going through it (whether that's time or hair) won't matter anymore, but being alive will.
posted by beyond_pink at 10:30 AM on September 16 [2 favorites]
Also, if you are ready to hear them, ask doctors for your actual prognosis numbers (there are calculators they use for this) and the risk reduction that either treatment would have on your prognosis. Chemo giving you a 10% better outcome for a 2% chance of recurrence might not feel worth it for you, but 10% off a 40% chance of recurrence might.
Almost all friends I've talked to that have gone though cancer treatment described feeling anxious when treatment ended and they were unsure that they have done everything that they could have. I would really take this into account as well. When you finish the chemo pill, it's probably too late to go back and get chemo. FWIW I was treated for an early stage cancer 4 years ago and did chemo, surgery, and a chemo pill. Though I do not feel anxious about it day to day, a new treatment became available just as I was finishing, and I was not eligible because of the timing - I still wish I could go back and do that treatment. Treatment feels like it takes forever when you are doing it, but one day it will be long behind you, and the things you feel like you "missed" by going through it (whether that's time or hair) won't matter anymore, but being alive will.
posted by beyond_pink at 10:30 AM on September 16 [2 favorites]
Get a third opinion, and hope that it agrees with one or the other that you already have in hand.
I think of getting a second or third opinion as less of a straw poll and more as gathering of data.
I would try to find out how much experience each of the health professionals has with this specific type of cancer and their detailed explanation/justification of why they recommend what they did.
For example, what does the extra risk of chemo side effects buy you, in terms of treatment benefit? Are there any circumstances where they'd recommend the other option for your stage?
posted by M. at 10:35 AM on September 16
I think of getting a second or third opinion as less of a straw poll and more as gathering of data.
I would try to find out how much experience each of the health professionals has with this specific type of cancer and their detailed explanation/justification of why they recommend what they did.
For example, what does the extra risk of chemo side effects buy you, in terms of treatment benefit? Are there any circumstances where they'd recommend the other option for your stage?
posted by M. at 10:35 AM on September 16
You've really hit the nail on the head about why it can be problematic to get other opinions. What do you do if they differ? Maybe a third opinion will differ too?
Research on medical practice suggests that doctors' decisions are guided partly by data and the literature, but also are strongly influenced by the doctor's personal experiences, particularly vivid ones. Your doctor #2 might have had a patient, or even a relative who took the pill option and had bad outcomes. He or she is much less likely to recommend that course of action - "never again will I prescribe that regimen!"
It's really difficult because as members of the lay public, we have very few tools for evaluating them. You could try to find out about the doctors' experience with your particular kind of cancer. Is it a rare occurrence in their practice? Or is it pretty much all they do? Also you could find out whether one of them is affiliated with an academic medical center or research facility. Not that those docs are necessarily better, but they're more likely to be up to date on the evolving literature and clinical trials.
If you do decide to get another opinion, I'd suggest you try to get one from someplace that really specializes in your condition. It can be a pain to travel and arrange such consults, but at least you'll be able to tell yourself and your husband that you are seeking out the most informed opinion.
Best of luck to you!
posted by jasper411 at 1:16 PM on September 16
Research on medical practice suggests that doctors' decisions are guided partly by data and the literature, but also are strongly influenced by the doctor's personal experiences, particularly vivid ones. Your doctor #2 might have had a patient, or even a relative who took the pill option and had bad outcomes. He or she is much less likely to recommend that course of action - "never again will I prescribe that regimen!"
It's really difficult because as members of the lay public, we have very few tools for evaluating them. You could try to find out about the doctors' experience with your particular kind of cancer. Is it a rare occurrence in their practice? Or is it pretty much all they do? Also you could find out whether one of them is affiliated with an academic medical center or research facility. Not that those docs are necessarily better, but they're more likely to be up to date on the evolving literature and clinical trials.
If you do decide to get another opinion, I'd suggest you try to get one from someplace that really specializes in your condition. It can be a pain to travel and arrange such consults, but at least you'll be able to tell yourself and your husband that you are seeking out the most informed opinion.
Best of luck to you!
posted by jasper411 at 1:16 PM on September 16
The second time I got cancer, my oncotype score came back higher. It was just enough that it was not clear that the harms of chemo would outweigh the risks. My oncologist recommended radiation, ovarian suppression, and AI estrogen blockers. (For the first time, I just had radiation and SERM hormonal treatment).
The thing is, I had a really really rough time tolerating the hormonal treatment the first time around, and it took me about a year to figure out something that worked. That was a very long year. So this time around, my main concern was "What if I can't tolerate the hormonal treatment?" and the question I really wanted my oncologist to answer was, if it turned out that I couldn't maintain the hormonal treatment, would I wish I had at least got the benefits of chemo?
Some people find the pills extremely tolerable, and have few or no side effects. But plenty of people have bad side effects that can take a long time to figure out, and some in the end cannot and simply have to stop for the sake of their quality of life. At least one study showed that hormonal treatment can have a larger detrimental effect on quality of life - both short term and longer term - than chemo (for a segment of the population).
You haven't shared any of the specifics of your cancer, so I have no idea what kind of pill you're talking about and if it's anything like mine. But I'd just caution that it might be a good idea to put the same energy into researching how people tolerate the pill as you've put into the chemo.
posted by Salamandrous at 5:20 AM on September 29
The thing is, I had a really really rough time tolerating the hormonal treatment the first time around, and it took me about a year to figure out something that worked. That was a very long year. So this time around, my main concern was "What if I can't tolerate the hormonal treatment?" and the question I really wanted my oncologist to answer was, if it turned out that I couldn't maintain the hormonal treatment, would I wish I had at least got the benefits of chemo?
Some people find the pills extremely tolerable, and have few or no side effects. But plenty of people have bad side effects that can take a long time to figure out, and some in the end cannot and simply have to stop for the sake of their quality of life. At least one study showed that hormonal treatment can have a larger detrimental effect on quality of life - both short term and longer term - than chemo (for a segment of the population).
You haven't shared any of the specifics of your cancer, so I have no idea what kind of pill you're talking about and if it's anything like mine. But I'd just caution that it might be a good idea to put the same energy into researching how people tolerate the pill as you've put into the chemo.
posted by Salamandrous at 5:20 AM on September 29
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posted by bluloo at 9:44 PM on September 15 [4 favorites]