Cancer After-care
January 4, 2016 5:17 PM Subscribe
My dear cousin is in Durango, Mexico and is recovering from breast cancer. She's had some standard treatment, but she has questions.
She is not fluent in "internet" and services are sketchy. She can travel for care. These are her questions:
"What I'm interested in is advice on how to return back to normality after chemo and how to keep myself healthy.
Here in Mexico, i was released from Chemo and my Dr is like..."well glad everything turned out good, here is your 5 yr treatment plan and bye!"
No post cancer treatment advice or anything.
We are traveling to Monterrey, where there are better specialists to get further information.
Some of my questions are:
I want to know if that 5yr pill Anastrzol, is effective.
Is it recommended for me to have the flu shot for this winter season?
When does my body return to normality?
What can I do to nor have recurrence?
What suggestions on eating?
That sort of thing."
I've directed her to ACS, but any suggestions would be great.
She is not fluent in "internet" and services are sketchy. She can travel for care. These are her questions:
"What I'm interested in is advice on how to return back to normality after chemo and how to keep myself healthy.
Here in Mexico, i was released from Chemo and my Dr is like..."well glad everything turned out good, here is your 5 yr treatment plan and bye!"
No post cancer treatment advice or anything.
We are traveling to Monterrey, where there are better specialists to get further information.
Some of my questions are:
I want to know if that 5yr pill Anastrzol, is effective.
Is it recommended for me to have the flu shot for this winter season?
When does my body return to normality?
What can I do to nor have recurrence?
What suggestions on eating?
That sort of thing."
I've directed her to ACS, but any suggestions would be great.
Although she's not "fluent" in internet, if she has internet access, you could suggest www.breastcancer.org I found it helpful and supportive.
I chose not to undertake the five-year chemo/hormone therapy, but there is a forum on that site specifically for hormonal therapy, including an active thread on Anastrozole.
She can also see the gathered experience of a wide range of women with a wide range of breast cancers, and ask for advice or simply read in the forums that seem most applicable. There are a ton of threads about life after cancer.
From my own experience, it took a surprisingly long time for me to feel comfortable and safe in my body again. One thing that is really disconcerting, which your friend alludes to, is that for some stupid long period of time, she hasn't been able to turn around without some new stranger with a medical role in her life, seeing and touching her body in ways that only a small handful of people have had permission for prior to this. Then *boom* nothing. As invasive as treatment is, there's some feeling that maybe enough knowledgeable people are paying sufficient attention that if you're getting off track somehow, someone will step in. And then you're suddenly on your own, no appointments to manage, no immediate side effects to deal with, and no support whatsoever. That is a very VERY common time to have a meltdown, the one that you've been putting off while you bravely withstood all the treatments and bravely calmed your frightened loved ones. So please let her know that the most important thing is to love herself where she is. That's probably the best preventive medicine.
Just as she didn't cause her cancer through poor diet or bad habits, there aren't a lot of things anyone can do to prevent a recurrence. What one can do, however, is be aware of body changes and keep follow up appointments (my breast surgeon sees me annually now, my radiation oncologist saw me semi-annually for a few years and now I don't see him at all) and maintain a good relationship with a primary care physician. I've told my PCP to tell me if she thinks I'm being a hypochondriac and so far, she hasn't. She understands why I come in regularly and she encourages me to do so whenever I have concerns or questions. In addition, I have an annual physical and relatively regular blood work, in part because I have a thyroid condition, but also just to be sure that no cancer markers are randomly showing up.
As for eating, in general, the basic rules continue to be the same: Eat food, not too much, mostly plants. There is conflicting evidence about the effects of soy, so I tend to limit my use of soy-based foods, like edamame and tofu as well as soy sauce, just to be on the safe side.
I have a fantastic prognosis, and yet my body will never be the same to me, and the word "cancer" will always mean something to me that it didn't six years ago. It sucks.
posted by janey47 at 6:47 PM on January 4, 2016 [3 favorites]
I chose not to undertake the five-year chemo/hormone therapy, but there is a forum on that site specifically for hormonal therapy, including an active thread on Anastrozole.
She can also see the gathered experience of a wide range of women with a wide range of breast cancers, and ask for advice or simply read in the forums that seem most applicable. There are a ton of threads about life after cancer.
From my own experience, it took a surprisingly long time for me to feel comfortable and safe in my body again. One thing that is really disconcerting, which your friend alludes to, is that for some stupid long period of time, she hasn't been able to turn around without some new stranger with a medical role in her life, seeing and touching her body in ways that only a small handful of people have had permission for prior to this. Then *boom* nothing. As invasive as treatment is, there's some feeling that maybe enough knowledgeable people are paying sufficient attention that if you're getting off track somehow, someone will step in. And then you're suddenly on your own, no appointments to manage, no immediate side effects to deal with, and no support whatsoever. That is a very VERY common time to have a meltdown, the one that you've been putting off while you bravely withstood all the treatments and bravely calmed your frightened loved ones. So please let her know that the most important thing is to love herself where she is. That's probably the best preventive medicine.
Just as she didn't cause her cancer through poor diet or bad habits, there aren't a lot of things anyone can do to prevent a recurrence. What one can do, however, is be aware of body changes and keep follow up appointments (my breast surgeon sees me annually now, my radiation oncologist saw me semi-annually for a few years and now I don't see him at all) and maintain a good relationship with a primary care physician. I've told my PCP to tell me if she thinks I'm being a hypochondriac and so far, she hasn't. She understands why I come in regularly and she encourages me to do so whenever I have concerns or questions. In addition, I have an annual physical and relatively regular blood work, in part because I have a thyroid condition, but also just to be sure that no cancer markers are randomly showing up.
As for eating, in general, the basic rules continue to be the same: Eat food, not too much, mostly plants. There is conflicting evidence about the effects of soy, so I tend to limit my use of soy-based foods, like edamame and tofu as well as soy sauce, just to be on the safe side.
I have a fantastic prognosis, and yet my body will never be the same to me, and the word "cancer" will always mean something to me that it didn't six years ago. It sucks.
posted by janey47 at 6:47 PM on January 4, 2016 [3 favorites]
IANAD, but my spouse is post treatment for breast cancer, and we've done a fair bit of research. I agree with the recommendation for breastcancer.org above. There's tonnes of material, forums, blogs, facebook groups... some people find them helpful, others find them overwhelming.
If you want something more in depth, there are standards of care which are pretty consistent world-wide, and I've found good documentation at http://nccn.org. There are patient-oriented and physician-oriented materials there - you need to sign up, but it's free.
Treatment for Breast Cancer depends on quite a number of different things - stage, pathology, spread etc. as well as menopausal state. The patient-oriented material for breast cancer on NCCN is pretty good.
Anastrozole is an Aromatase Inhibitor, and is the standard of care for post-menopausal women with HR+ breast cancer. (Another option is Tamoxofin, typically given for pre-menopausal women only these days) It is typically given with a bone-builder of some sort (Biophosphonates or latest research shows denosumab) because it often causes osteoporosis.
Comments by janey47 about health, recurrence, mental state etc. are spot on. A phrase my wife and I are tired of is "The New Normal", but it's pretty appropriate. One comment about soy - evidence about soy being problematic is mostly with soy protein isolate, not soy beans, so we don't worry too much about tofu / edamame etc.
posted by dttocs at 7:11 PM on January 4, 2016 [2 favorites]
If you want something more in depth, there are standards of care which are pretty consistent world-wide, and I've found good documentation at http://nccn.org. There are patient-oriented and physician-oriented materials there - you need to sign up, but it's free.
Treatment for Breast Cancer depends on quite a number of different things - stage, pathology, spread etc. as well as menopausal state. The patient-oriented material for breast cancer on NCCN is pretty good.
Anastrozole is an Aromatase Inhibitor, and is the standard of care for post-menopausal women with HR+ breast cancer. (Another option is Tamoxofin, typically given for pre-menopausal women only these days) It is typically given with a bone-builder of some sort (Biophosphonates or latest research shows denosumab) because it often causes osteoporosis.
Comments by janey47 about health, recurrence, mental state etc. are spot on. A phrase my wife and I are tired of is "The New Normal", but it's pretty appropriate. One comment about soy - evidence about soy being problematic is mostly with soy protein isolate, not soy beans, so we don't worry too much about tofu / edamame etc.
posted by dttocs at 7:11 PM on January 4, 2016 [2 favorites]
My doctor is the Chief Medical Officer at a large research university hospital and has a special focus on breast cancer. I know for certain he is up to date on the latest studies and treatment plans. I asked him, "beyond exercising and staying at a healthy weight, what can I do to prevent recurrence?" and he said, "keep your follow-up appointments." That's all.
So I know how scary it is to suddenly be faced with the end of treatment, sending us out into the world with nothing to prevent the cancer coming back but our own immune systems and 30 to 45 minutes of aerobic exercise per day, but I don't think your cousin's doctors are being neglectful in not really giving her specific guidelines. Once you're through treatment, there isn't much to do. We're supposed to just be normal people again. Which is hard.
I've been done with chemo for seven months. I'd say it was probably two months before the physical symptoms subsided and I felt mostly like myself. I have so far been unable to shed the weight I gained throughout treatment but I'm working on it.
I'm also on hormonal treatment for the next five years, although not Anastrozole as I am pre-menopausal. Most information I've found says that, depending on the characteristics of the cancer, the hormonals can be even more important than chemo in preventing recurrence. One thing I would recommend is talking to her doctor about drugs that may interact or interfere with the Anastrozole - I discovered that an insomnia medicine I've been on for years possibly interferes with mine, so my doctor gave me something else for sleep instead.
As far as flu shots go, I got one while I was sitting in the chemo chair so there clearly aren't any restrictions there. Get your flu shot.
posted by something something at 7:44 AM on January 5, 2016 [1 favorite]
So I know how scary it is to suddenly be faced with the end of treatment, sending us out into the world with nothing to prevent the cancer coming back but our own immune systems and 30 to 45 minutes of aerobic exercise per day, but I don't think your cousin's doctors are being neglectful in not really giving her specific guidelines. Once you're through treatment, there isn't much to do. We're supposed to just be normal people again. Which is hard.
I've been done with chemo for seven months. I'd say it was probably two months before the physical symptoms subsided and I felt mostly like myself. I have so far been unable to shed the weight I gained throughout treatment but I'm working on it.
I'm also on hormonal treatment for the next five years, although not Anastrozole as I am pre-menopausal. Most information I've found says that, depending on the characteristics of the cancer, the hormonals can be even more important than chemo in preventing recurrence. One thing I would recommend is talking to her doctor about drugs that may interact or interfere with the Anastrozole - I discovered that an insomnia medicine I've been on for years possibly interferes with mine, so my doctor gave me something else for sleep instead.
As far as flu shots go, I got one while I was sitting in the chemo chair so there clearly aren't any restrictions there. Get your flu shot.
posted by something something at 7:44 AM on January 5, 2016 [1 favorite]
This thread is closed to new comments.
Hopefully her specialists in Monterrey will have the answers she seeks for these questions. May your friend be well.
posted by mmw at 6:00 PM on January 4, 2016