Questions for triple-negative breast cancer recurrence?
January 24, 2015 7:48 AM Subscribe
I found out that I had a recurrence of breast cancer about two months ago, and subsequently had a mastectomy towards the end of December. Although it is a local recurrence, I was told that I should get chemotherapy. This was a big shock to me - I thought the mastectomy would be the end of it - and I couldn't really think of any questions to ask. I'd like to prepare a list of questions to ask my doctor, and would appreciate some suggestions. Details inside.
The first cancer was hormone-receptor positive. I had a lumpectomy, plus chemo and radiation. I was cancer-free for about four years.
The recurrence - which is local - is in the same breast, but is a different kind of cancer; it's more aggressive for starters. It's estrogen/progesterone negative, and I'm pretty sure she said it was HER2 negative as well. I guess that means triple-negative. It's 2.5 cm, which I believe is stage two. The cancer wasn't found in any lymph nodes, so I have that going for me at least.
Here are the questions I want to ask the doctor:
1. Is this a TOTALLY new breast cancer? Or did my original cancer just change? (Two completely different cancers is a lot scarier for me; I didn't even know that was possible)
2. Is chemotherapy usually recommended for cases like mine? Are these cases unusual, or common? What other treatments are available? Are there alternatives? Clinical trials?
3. Another question I'm thinking about bringing up.. my prognosis. Honestly, I'm scared to death to ask this one and am not sure I will have the courage to do so in the moment. I know triple negative is not a death sentence, but it's also not as good a situation as being receptor-positive. My doctor has been upbeat so far, with no signs that she is too worried. Do doctors beat around the bush if they suspect a patient is in serious trouble, or do they usually tell it to him/her straight?
4. Finally: Is it worth getting a second opinion? Could my scans on the type of cancer register false negatives/positives/etc? Are cancer treatment plans fairly clear-cut based on scan/test results, or would a different doctor possibly try a different approach?
What does the hivemind think of these questions so far? Should I ask about my prognosis, or would she have told me if it was bad? Is a second opinion a good idea, and is asking about one an appropriate question for my oncologist? Also, are there any others questions you would add? Thank you.
The first cancer was hormone-receptor positive. I had a lumpectomy, plus chemo and radiation. I was cancer-free for about four years.
The recurrence - which is local - is in the same breast, but is a different kind of cancer; it's more aggressive for starters. It's estrogen/progesterone negative, and I'm pretty sure she said it was HER2 negative as well. I guess that means triple-negative. It's 2.5 cm, which I believe is stage two. The cancer wasn't found in any lymph nodes, so I have that going for me at least.
Here are the questions I want to ask the doctor:
1. Is this a TOTALLY new breast cancer? Or did my original cancer just change? (Two completely different cancers is a lot scarier for me; I didn't even know that was possible)
2. Is chemotherapy usually recommended for cases like mine? Are these cases unusual, or common? What other treatments are available? Are there alternatives? Clinical trials?
3. Another question I'm thinking about bringing up.. my prognosis. Honestly, I'm scared to death to ask this one and am not sure I will have the courage to do so in the moment. I know triple negative is not a death sentence, but it's also not as good a situation as being receptor-positive. My doctor has been upbeat so far, with no signs that she is too worried. Do doctors beat around the bush if they suspect a patient is in serious trouble, or do they usually tell it to him/her straight?
4. Finally: Is it worth getting a second opinion? Could my scans on the type of cancer register false negatives/positives/etc? Are cancer treatment plans fairly clear-cut based on scan/test results, or would a different doctor possibly try a different approach?
What does the hivemind think of these questions so far? Should I ask about my prognosis, or would she have told me if it was bad? Is a second opinion a good idea, and is asking about one an appropriate question for my oncologist? Also, are there any others questions you would add? Thank you.
1. Is this a TOTALLY new breast cancer? Or did my original cancer just change? (Two completely different cancers is a lot scarier for me; I didn't even know that was possible)
My understanding of cancer, as best as I can get by being a relatively informed person with an interest in science is that cancer cells are always mutating and changing: that's what they do best. So you can think of it (I think) as your "original" cancer was hormone-receptor positive, you got treatment that wiped out most of it, but some of the bastards managed to mutate to be hormone-receptor negative, and they're the nasty ones that managed to stick around and come back again. Think of antibiotics: if you don't manage to wipe out everything, the bacteria that survive are going to be the ones that couldn't be killed by the first method.
I don't have anything to add for the rest except that a second opinion probably couldn't hurt, and, on preview, rmhsinc's suggestion is a great one. Sending healing vibes your way!
posted by damayanti at 8:03 AM on January 24, 2015 [1 favorite]
My understanding of cancer, as best as I can get by being a relatively informed person with an interest in science is that cancer cells are always mutating and changing: that's what they do best. So you can think of it (I think) as your "original" cancer was hormone-receptor positive, you got treatment that wiped out most of it, but some of the bastards managed to mutate to be hormone-receptor negative, and they're the nasty ones that managed to stick around and come back again. Think of antibiotics: if you don't manage to wipe out everything, the bacteria that survive are going to be the ones that couldn't be killed by the first method.
I don't have anything to add for the rest except that a second opinion probably couldn't hurt, and, on preview, rmhsinc's suggestion is a great one. Sending healing vibes your way!
posted by damayanti at 8:03 AM on January 24, 2015 [1 favorite]
I never had breast cancer but I did have another type of cancer in highschool and again in college.
" Do doctors beat around the bush if they suspect a patient is in serious trouble, or do they usually tell it to him/her straight?"
In my experience doctor's are not always very honest about your chances of survival. My case was very different from yours but bear with me- I was told point blank by ALL the doctors that without chemo I would die. I chose not to get the chemo anyway. That was 10 years ago. I'm still here.
The reason I chose this was because I found out through my own research that with the particular type of cancer I had, most people who got chemo STILL ended up dead within a few years. None of the doctors had told me this. It wasn't until after I did the research and went up and directly asked them about it that they admitted to me that my chances weren't great even with the Chemo. So I decided not to get it. The way I saw it, I would rather spend whatever few years I had left having fun, with a head full of fabulous hair, traveling the world than spend half that time or more sick in bed and bald. The doctors were FURIOUS with me. I'm telling you, that if they had any legal right to force me to have that chemo they absolutely would have done it. A couple of them literally called me names and "a stupid girl". Probably because I was young and they wanted me to "live" but for them quantity of life was definitely more important than quality and they wanted me to do all the treatments even though statistically it only would've added a couple of years to me. They were willing to leave out the facts so that I would jump in and do whatever they wanted without asking too many questions. I didn't expect to live after foregoing the treatments... it just turned out that way. I was more interested in quality than quantity and the fact that I ended up living anyway was just a bonus. For 4 years after my diagnosis I lived it up and traveled and had the time of my life. The only downside was that I spent every dime because I didn't think I'd be around long enough to need it later on, but that's a good problem to have in the scheme of things.
You are older than I was so maybe they are likely to be more honest with you, but my experience was definitely that doctors will often have you do all the awful treatments even if your prognosis with the treatment is minimal. If you are too afraid to ask for your prognosis then maybe you should just do it. If you're told it's bad, then you'll still be afraid like you are now and if you're told it's good you'll alleviate some of the bad stress you're dealing with.
In my view it is always worth getting a second opinion because there's no harm in it, but I would also do my own research online and ask people on cancer forums about their experiences dealing with your type of cancer. Because that's how I ended up getting the truth about my particular cancer- I definitely didn't get it from any of my MANY doctors. Not until after I confronted them with what I found.
I can't tell you not to be afraid of death. For me, I just got so tired of fighting the disease that the fear kind of left me for the most part, and I just went Fuck it. Death is a part of life and it happens to everyone. And if you believe in reincarnation it will happen to almost everyone more than once. I can only highly recommend that when you're done with your treatment and go into remission again, use that time to have as awesome a time as you can manage during your remission the next few years because no matter what your health outcome, it's unlikely you'll regret it.
posted by manderin at 9:39 AM on January 24, 2015 [19 favorites]
" Do doctors beat around the bush if they suspect a patient is in serious trouble, or do they usually tell it to him/her straight?"
In my experience doctor's are not always very honest about your chances of survival. My case was very different from yours but bear with me- I was told point blank by ALL the doctors that without chemo I would die. I chose not to get the chemo anyway. That was 10 years ago. I'm still here.
The reason I chose this was because I found out through my own research that with the particular type of cancer I had, most people who got chemo STILL ended up dead within a few years. None of the doctors had told me this. It wasn't until after I did the research and went up and directly asked them about it that they admitted to me that my chances weren't great even with the Chemo. So I decided not to get it. The way I saw it, I would rather spend whatever few years I had left having fun, with a head full of fabulous hair, traveling the world than spend half that time or more sick in bed and bald. The doctors were FURIOUS with me. I'm telling you, that if they had any legal right to force me to have that chemo they absolutely would have done it. A couple of them literally called me names and "a stupid girl". Probably because I was young and they wanted me to "live" but for them quantity of life was definitely more important than quality and they wanted me to do all the treatments even though statistically it only would've added a couple of years to me. They were willing to leave out the facts so that I would jump in and do whatever they wanted without asking too many questions. I didn't expect to live after foregoing the treatments... it just turned out that way. I was more interested in quality than quantity and the fact that I ended up living anyway was just a bonus. For 4 years after my diagnosis I lived it up and traveled and had the time of my life. The only downside was that I spent every dime because I didn't think I'd be around long enough to need it later on, but that's a good problem to have in the scheme of things.
You are older than I was so maybe they are likely to be more honest with you, but my experience was definitely that doctors will often have you do all the awful treatments even if your prognosis with the treatment is minimal. If you are too afraid to ask for your prognosis then maybe you should just do it. If you're told it's bad, then you'll still be afraid like you are now and if you're told it's good you'll alleviate some of the bad stress you're dealing with.
In my view it is always worth getting a second opinion because there's no harm in it, but I would also do my own research online and ask people on cancer forums about their experiences dealing with your type of cancer. Because that's how I ended up getting the truth about my particular cancer- I definitely didn't get it from any of my MANY doctors. Not until after I confronted them with what I found.
I can't tell you not to be afraid of death. For me, I just got so tired of fighting the disease that the fear kind of left me for the most part, and I just went Fuck it. Death is a part of life and it happens to everyone. And if you believe in reincarnation it will happen to almost everyone more than once. I can only highly recommend that when you're done with your treatment and go into remission again, use that time to have as awesome a time as you can manage during your remission the next few years because no matter what your health outcome, it's unlikely you'll regret it.
posted by manderin at 9:39 AM on January 24, 2015 [19 favorites]
These are great questions and I encourage you to ask them all! For what it's worth, I conduct breast cancer research (although I am not your breast cancer researcher, whatever that means) and these are all topics that I see covered in oncologists' notes about patient encounters very routinely.
It is true that some doctors' styles are to not discuss prognosis unless the patient asks, or to act upbeat to an extent that a patient might consider incongruous with their actual condition. This might be your doctor's style. Decide before your appointment if you want to know the statistical prognosis or not, and then proceed accordingly. I don't recommend interpreting your doctor's mood for information -- if you want information, ask. If you don't want information, practice that instead of searching for clues.
One more question you might want to ask is if your doctor thinks you might be a candidate for genetic testing (this is tied in with your question about whether this is considered a new cancer or a recurrence). In line with that, you might want to take some time between now and your appointment to write a list of blood relatives who have had cancer, their age of diagnosis, and what kind. Your situation combined with your family history will help your oncologist make a recommendation about pursuing genetic testing.
posted by telegraph at 10:29 AM on January 24, 2015 [3 favorites]
It is true that some doctors' styles are to not discuss prognosis unless the patient asks, or to act upbeat to an extent that a patient might consider incongruous with their actual condition. This might be your doctor's style. Decide before your appointment if you want to know the statistical prognosis or not, and then proceed accordingly. I don't recommend interpreting your doctor's mood for information -- if you want information, ask. If you don't want information, practice that instead of searching for clues.
One more question you might want to ask is if your doctor thinks you might be a candidate for genetic testing (this is tied in with your question about whether this is considered a new cancer or a recurrence). In line with that, you might want to take some time between now and your appointment to write a list of blood relatives who have had cancer, their age of diagnosis, and what kind. Your situation combined with your family history will help your oncologist make a recommendation about pursuing genetic testing.
posted by telegraph at 10:29 AM on January 24, 2015 [3 favorites]
In answer to question 2, guidance from the National Institute for Clinical Excellence suggests that chemotherapy should be determined on a case by case basis (probably using a computer-based diagnostic program). And Cancer Research UK suggests that chemotherapy is more likely to be used for negative receptor cancer and also for recurrence.
So it seems like it's within normal bounds but they should be able to explain why it has been recommended for you particularly.
The same kinds of programs that are used to make recommendations on treatment should also give you prognosis statistics if you are interested in those.
posted by plonkee at 11:05 AM on January 24, 2015 [1 favorite]
So it seems like it's within normal bounds but they should be able to explain why it has been recommended for you particularly.
The same kinds of programs that are used to make recommendations on treatment should also give you prognosis statistics if you are interested in those.
posted by plonkee at 11:05 AM on January 24, 2015 [1 favorite]
When I was going through breast cancer, my go-to site was Breastcancer.org. You can find a lot of the latest research, interviews with experts, and discussion about the various types of breast cancer there. This will help you prepare for your oncologists' appointment.
I found that I had to write down my questions in advance so I could remember to ask them. I also wrote down what my oncologist and his nurse practitioner discussed with me so that I would remember. Jot down all your questions in a notebook and take it with you to your appointment so you can write down the answers.
I also had the opportunity to participate in a clinical trial, and I'm so glad I did. This is something you might want to discuss with your doctor when you see him or her.
posted by Rosie M. Banks at 11:42 AM on January 24, 2015 [2 favorites]
I found that I had to write down my questions in advance so I could remember to ask them. I also wrote down what my oncologist and his nurse practitioner discussed with me so that I would remember. Jot down all your questions in a notebook and take it with you to your appointment so you can write down the answers.
I also had the opportunity to participate in a clinical trial, and I'm so glad I did. This is something you might want to discuss with your doctor when you see him or her.
posted by Rosie M. Banks at 11:42 AM on January 24, 2015 [2 favorites]
It is, unfortunately, totally possible for people to get multiple different cancers independently of each other.
Cancer is the result of an individual cell somewhere in the body accumulating the set of mutations† that turn it into a cell that does nothing except divide continuously whilst circumventing all the mechanisms your body has in place to prevent that from happening.
A successful treatment for a patient's cancer that completely wipes it out down to the very last cell will not prevent them from getting cancer in the future - indeed many chemotherapy drugs are themselves carcinogenic, increasing the likelihood of future cancers. Treating cancer is a question of playing the percentages - there are no "safe" options for most cancers sadly.
Crossed fingers for the success of your treatment, whatever you decide to do.
†There are a couple of other suggested ways that cancer could occur, but my understanding is that the "accumulated mutations over time" one is believed to explain most cancers.
posted by pharm at 12:49 PM on January 24, 2015 [1 favorite]
Cancer is the result of an individual cell somewhere in the body accumulating the set of mutations† that turn it into a cell that does nothing except divide continuously whilst circumventing all the mechanisms your body has in place to prevent that from happening.
A successful treatment for a patient's cancer that completely wipes it out down to the very last cell will not prevent them from getting cancer in the future - indeed many chemotherapy drugs are themselves carcinogenic, increasing the likelihood of future cancers. Treating cancer is a question of playing the percentages - there are no "safe" options for most cancers sadly.
Crossed fingers for the success of your treatment, whatever you decide to do.
†There are a couple of other suggested ways that cancer could occur, but my understanding is that the "accumulated mutations over time" one is believed to explain most cancers.
posted by pharm at 12:49 PM on January 24, 2015 [1 favorite]
Please do ask about prognosis. In my experience, unfortunately, many doctors will avoid the subject. Sadly I see many people who die without having advance directives for end of life care and with their family completely shocked because they did not know the patient was"that sick". Just don't ask how long you personally will live, doctors cannot predict the future. Ask what the 5 year survival rate is, on average for patients like you. And as I always tell people in regards to cancer prognosis, consider the long tail.
Unfortunately, treatments for cancer like radiation put you at risk for developing future (new) cancer. Anything that causes increased cell turnover increases the chance of mutations. This is why doctors generally try to minimize radiation exposure.
posted by treehorn+bunny at 4:56 PM on January 24, 2015 [2 favorites]
Unfortunately, treatments for cancer like radiation put you at risk for developing future (new) cancer. Anything that causes increased cell turnover increases the chance of mutations. This is why doctors generally try to minimize radiation exposure.
posted by treehorn+bunny at 4:56 PM on January 24, 2015 [2 favorites]
I'd strongly suggest you google the Inspire forum on breast cancer. There are many, many people there discussing every conceivable treatment option for all the different types of breast cancer. I follow the ovarian cancer forum there because I've lost two good friends to OC and have another very special friend - she's only 48 - who's fighting it now - the women on the OC forum know WAY more about ovarian cancer than most doctors do, which is not to put the docs down but to point out that these women have researched and compared notes and treatments more than any one doctor could put time to. And, of course, the way they help each other the most is through supporting one another through thick and thin.
One of the most significant points they've made, to me, anyway, is the importance of getting more than one opinion for your particular cancer treatment and to get those opinions from specialists in your own type of cancer - in your case, specialists in breast cancer, not just a general oncologist.
I hope your treatment is successful and you never have to consider cancer as a personal enemy again.
posted by aryma at 4:58 PM on January 24, 2015 [1 favorite]
One of the most significant points they've made, to me, anyway, is the importance of getting more than one opinion for your particular cancer treatment and to get those opinions from specialists in your own type of cancer - in your case, specialists in breast cancer, not just a general oncologist.
I hope your treatment is successful and you never have to consider cancer as a personal enemy again.
posted by aryma at 4:58 PM on January 24, 2015 [1 favorite]
Hi - I'm 8dot3 - you may remember me from questions such as "I need intelligent info about advanced recurrent breast cancer". I don't know if you are still looking at this question, but it's been kicking around the back of my mind for the last week and I wanted to respond. I'm assuming you've met with the doctor already, but since you'll be meeting with her ongoing you can continue to pepper her with questions as they arise.
Definitely ask all of the questions you listed above. It's been my experience that you have to be kind of pushy about getting questions answered. Like, when my mom's cancer recurred last summer, I had the same question about whether it was the same cancer or a different one. (Hers also was initially estrogen positive that became triple negative.) The answer was basically 'we don't know and there really isn't a good way to find out', but lord it took a bit of badgering to get the answer.
it's not surprising that you had the mastectomy and then got blindsided by a "Now it's time for chemo," statement. Oncologists never seem to give the WHOLE treatment plan possibilities from the start. I know that's because some of it depends on how things go with each step (like, what they found during the mastectomy) but it would really be helpful, mentally, to know what the 2 or 3 possible treatment paths - the whole thing - are from the outset. I don't know why they don't do that.
I would get copies of all test results - every PET scan report, every biopsy report. (Reasons below.) Also, write down everything she says when you are asking questions because there's just no way to keep it all straight in your head later on.
I'd ask WHY she is recommending chemo at this time. Is it because the margins were too close when they did the mastectomy? What are your tumor markers? What markers are they testing? What were your markers last time? How do they know the cancer is more aggressive this time? (Get the reports!)
If they are basing the triple negative diagnosis on the biopsy of the entire tumor that they got when they did the mastectomy, it's probably accurate, since they have a chance to test a larger sample than they do when they do a core biopsy. That said, ask what the actual numbers were for the hormone and HER2 receptor statuses. (Get that report!) I say that because, as with most things in medicine, everything is regarded in ranges and not absolute numbers. Meaning: Estrogen receptor negative could mean there were none, or there could be a low amount that they consider not worth mentioning, but still isn't zero. My mom's core biopsy was negative (unequivocally) but the lumpectomy biopsy was weakly estrogen positive.
When you are asking about the success rates of different treatment options, find out what the success rates mean. How are they defining success? (3 years completely clear and without recurrence? 18 months without progression? [Progression-free means the cancer isn't gone but it's not growing, either.] And are those rates based on all kinds of cancer, all kinds of breast cancer or triple negative breast cancer?) How are they choosing what kind of chemo to give you? What are the drugs in the chemo cocktail (most chemo is a combination of 2 or 3 chemo drugs) and why is she choosing it over other combinations? What are the stats on the two combos and what are the pros and cons of each? (Again, get the definitions of success for each of the combos.)
Doctors, in my experience, really hate giving prognosis answers. I was talking about this with a couple of friends recently - one whose mom had cancer - and the other friend was shocked at how cagey doctors are about prognosis. (Admittedly, she said all of her knowledge came from TV where doctors are all, "You have two months to live.")
Different doctors approach things in different ways, to be sure. Triple-negative BC, as I am sure you know, has very, very limited treatment options. Surgery, chemo, radiation (in any combination) are pretty much the only damn game in town. Cancer tends to be more aggressive with younger patients, so in your position most if not all oncologists would throw chemo at it. That's what oncologists do though. If you are in doubt, get a second opinion and hammer them with the same questions. I look at clinical trials all of the time. Check them yourself, frequently.
Sorry about the wall of text, but I spend a lot of time thinking/reading/hating cancer. I hope this was helpful. Memail if you need anything. I live in the Philly area if you are around and need help. You're in my thoughts.
posted by 8dot3 at 7:04 PM on February 3, 2015
Definitely ask all of the questions you listed above. It's been my experience that you have to be kind of pushy about getting questions answered. Like, when my mom's cancer recurred last summer, I had the same question about whether it was the same cancer or a different one. (Hers also was initially estrogen positive that became triple negative.) The answer was basically 'we don't know and there really isn't a good way to find out', but lord it took a bit of badgering to get the answer.
it's not surprising that you had the mastectomy and then got blindsided by a "Now it's time for chemo," statement. Oncologists never seem to give the WHOLE treatment plan possibilities from the start. I know that's because some of it depends on how things go with each step (like, what they found during the mastectomy) but it would really be helpful, mentally, to know what the 2 or 3 possible treatment paths - the whole thing - are from the outset. I don't know why they don't do that.
I would get copies of all test results - every PET scan report, every biopsy report. (Reasons below.) Also, write down everything she says when you are asking questions because there's just no way to keep it all straight in your head later on.
I'd ask WHY she is recommending chemo at this time. Is it because the margins were too close when they did the mastectomy? What are your tumor markers? What markers are they testing? What were your markers last time? How do they know the cancer is more aggressive this time? (Get the reports!)
If they are basing the triple negative diagnosis on the biopsy of the entire tumor that they got when they did the mastectomy, it's probably accurate, since they have a chance to test a larger sample than they do when they do a core biopsy. That said, ask what the actual numbers were for the hormone and HER2 receptor statuses. (Get that report!) I say that because, as with most things in medicine, everything is regarded in ranges and not absolute numbers. Meaning: Estrogen receptor negative could mean there were none, or there could be a low amount that they consider not worth mentioning, but still isn't zero. My mom's core biopsy was negative (unequivocally) but the lumpectomy biopsy was weakly estrogen positive.
When you are asking about the success rates of different treatment options, find out what the success rates mean. How are they defining success? (3 years completely clear and without recurrence? 18 months without progression? [Progression-free means the cancer isn't gone but it's not growing, either.] And are those rates based on all kinds of cancer, all kinds of breast cancer or triple negative breast cancer?) How are they choosing what kind of chemo to give you? What are the drugs in the chemo cocktail (most chemo is a combination of 2 or 3 chemo drugs) and why is she choosing it over other combinations? What are the stats on the two combos and what are the pros and cons of each? (Again, get the definitions of success for each of the combos.)
Doctors, in my experience, really hate giving prognosis answers. I was talking about this with a couple of friends recently - one whose mom had cancer - and the other friend was shocked at how cagey doctors are about prognosis. (Admittedly, she said all of her knowledge came from TV where doctors are all, "You have two months to live.")
Different doctors approach things in different ways, to be sure. Triple-negative BC, as I am sure you know, has very, very limited treatment options. Surgery, chemo, radiation (in any combination) are pretty much the only damn game in town. Cancer tends to be more aggressive with younger patients, so in your position most if not all oncologists would throw chemo at it. That's what oncologists do though. If you are in doubt, get a second opinion and hammer them with the same questions. I look at clinical trials all of the time. Check them yourself, frequently.
Sorry about the wall of text, but I spend a lot of time thinking/reading/hating cancer. I hope this was helpful. Memail if you need anything. I live in the Philly area if you are around and need help. You're in my thoughts.
posted by 8dot3 at 7:04 PM on February 3, 2015
This thread is closed to new comments.
posted by rmhsinc at 8:01 AM on January 24, 2015 [2 favorites]