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Long Term Side Effects
Cancer questions and answers.
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Breast Surgery
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Sean Canale, MD
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Even if you've already begun treatment, this type of testing can help. Neuropsychologists - especially those who work with cancer patients -- can suggest individualized coping strategies. They may also suggest medication if they think you'll benefit.
And just as having cancer affects the entire family, so does chemo brain. I can't tell you how many stories I've collected from people who tell me that their spouses and/or children just don't understand why they continue to be so forgetful, even though they're long past treatment. So you might sit down with your family and explain that chemo brain is real and that it may continue to linger. You may want to ask them to work out organizational strategies with you so that everyone takes a bit more responsibility.
It may help for them to read "Your Brain After Chemo" where I tell the story of a husband who had testicular cancer, and his wife who was often frustrated at how spacey he had become. In the end, they set up a more structured way of dealing with appointments, including their roles in picking up their son after school. That created more harmony at home. If you're newly diagnosed and have not yet begun treatment, ask your oncologist for a referral to a neuropsychologist for a cognitive evaluation. That will provide you with a baseline of how your brain functions now in terms of memory, attention, mood, etc. Follow-up testing during and after treatment will help your doctors monitor your cognitive health over time.
Even if you've already begun treatment, this type of testing can help. Neuropsychologists - especially those who work with cancer patients -- can suggest individualized coping strategies. They may also suggest medication if they think you'll benefit.
And just as having cancer affects the entire family, so does chemo brain. I can't tell you how many stories I've collected from people who tell me that their spouses and/or children just don't understand why they continue to be so forgetful, even though they're long past treatment. So you might sit down with your family and explain that chemo brain is real and that it may continue to linger. You may want to ask them to work out organizational strategies with you so that everyone takes a bit more responsibility.
It may help for them to read "Your Brain After Chemo" where I tell the story of a husband who had testicular cancer, and his wife who was often frustrated at how spacey he had become. In the end, they set up a more structured way of dealing with appointments, including their roles in picking up their son after school. That created more harmony at home.
The other main long term complication of the DIEP flap is fat necrosis (12.9%) which can often be felt as a mass in the reconstructed breast. The main advantage of the perforator flap over the transverse rectus abdominis (TRAM) flap is the reduction in donor site complications such as abdominal wall herniation and weakness. Nevertheless, there is still some risk of abdominal wall hernia. This is reported to be 0.7% according to Spear.
The other main long term complication of the DIEP flap is fat necrosis (12.9%) which can often be felt as a mass in the reconstructed breast.
This is a big one that we hear about frequently as people transition back to work. Below are some tips/suggestions that we know to be simple and effective to get you thinking about how to manage side effects at work.
First off forget about multitasking. As hard as that may be in our super connected fast paced world, for many people managing fatigue and concentration challenges during or post-treatment successful multitasking is near impossible and very frustrating. Instead, write down a list of priorities and then turn off your email, phone and instant messenger and focus on accomplishing one thing at a time. Make sure to drill big projects down into manageable tasks for that very important feeling of accomplishment that comes with ticking things off your list.
Second, literally write everything down (from meetings to in passing ideas to people you need to follow up with to groceries), so if you forget you’ll always have a record. And keep one notebook with all your "to do" things so they are all in one place and take it everywhere so you are never scrambling without it.
In terms of your actual workspace, ban clutter and clear your desk or work area so that when you are going through tasks one by one there aren't a million distractions and you don't feel overwhelmed by all that still needs to be finished.
Third, rehearse everything from presentations to work updates and even phone calls so that you feel practiced, professional and focused.
Other things to consider, is your job flexible enough to let you ease back into the work world either by starting part-time and ramping up to full time as you get your feet under you again or by telecommuting one or two days a week for a while to eliminate the commute part of your day. Obviously, for some professions (surgeons, teachers, toll booth collectors) telecommuting isn't a feasible option so you have to think through what would be possible given your particular situation. Or, if your side effects are more debilitating do you need to look into availing yourself of any legal rights you may have. To determine what you might be eligible for I recommend you review some of our articles here: http://www.cancerandcareers.org/en/at-work/Legal-and-Financial and then call the Cancer Legal Resource Center (1-866-THE-CLRC) to discuss your specific situation.
Finally, remember to take a moment for yourself in your day, no matter how busy or how stressful. Try taking a break, with a few deep breaths to refocus or take a walk either around the office or the block.
Hope this helps!
Best,
Rebecca
Rebecca V Nellis
Director of Programs
Cancer and Careers Hi there,
This is a big one that we hear about frequently as people transition back to work. Below are some tips/suggestions that we know to be simple and effective to get you thinking about how to manage side effects at work.
First off forget about multitasking. As hard as that may be in our super connected fast paced world, for many people managing fatigue and concentration challenges during or post-treatment successful multitasking is near impossible and very frustrating. Instead, write down a list of priorities and then turn off your email, phone and instant messenger and focus on accomplishing one thing at a time. Make sure to drill big projects down into manageable tasks for that very important feeling of accomplishment that comes with ticking things off your list.
Second, literally write everything down (from meetings to in passing ideas to people you need to follow up with to groceries), so if you forget you’ll always have a record. And keep one notebook with all your "to do" things so they are all in one place and take it everywhere so you are never scrambling without it.
In terms of your actual workspace, ban clutter and clear your desk or work area so that when you are going through tasks one by one there aren't a million distractions and you don't feel overwhelmed by all that still needs to be finished.
Third, rehearse everything from presentations to work updates and even phone calls so that you feel practiced, professional and focused.
Other things to consider, is your job flexible enough to let you ease back into the work world either by starting part-time and ramping up to full time as you get your feet under you again or by telecommuting one or two days a week for a while to eliminate the commute part of your day. Obviously, for some professions (surgeons, teachers, toll booth collectors) telecommuting isn't a feasible option so you have to think through what would be possible given your particular situation. Or, if your side effects are more debilitating do you need to look into availing yourself of any legal rights you may have. To determine what you might be eligible for I recommend you review some of our articles here: http://www.cancerandcareers.org/en/at-work/Legal-and-Financial and then call the Cancer Legal Resource Center (1-866-THE-CLRC) to discuss your specific situation.
Finally, remember to take a moment for yourself in your day, no matter how busy or how stressful. Try taking a break, with a few deep breaths to refocus or take a walk either around the office or the block.
Hope this helps!
Best,
Rebecca
Rebecca V Nellis
Director of Programs
Cancer and Careers
Bone loss associated with chemotherapy induced early menopause is problematic. I've taken calcium, Vit D and tried to walk regularly in an effort to keep my bones strong. Unfortunately that hasn't been terribly successful but has helped some. I tried an oral bisphosphonate but developed esophageal problems. Given some of the issues with IV bisphosphonates I've been reluctant to try them and my insurance doesn't cover them.
As a nurse, I'm hesitant to add medication to deal with those issues unless there is no other choice. Joint pain escalated to the point of needing an anti-inflammatory agent but again, walking regularly does help. Hot flashes can be an issue. Again, I tried an anti-depressant for a while and decided to keep a dietary record to determine if there were dietary triggers and have found some success changing diet rather than medication. Getting adequate rest and hydration seem to help as well.
I now have extreme sun sensitivity so limit my sun exposure and when out always use a 45-60 SPF sun block, sun glasses, hat and sun-protective shirt.
Often it's hard to know if symptoms are treatment related or simple part of the aging process. Following extensive chemotherapy it does seem that survivors may experience unexpected consequences and physicians aren't sure how to manage those.
Keeping active has been useful for me and having an understanding oncologist who will listen and explore ways to help me deal with continued questions related to my treatment. You've hit upon a very important topic and one that will become more and more challenging as the number of heavily treated survivors continues to rise. At the time of my treatment the physicians admitted they weren't sure what kind of long-term health issues I would face but felt the only way to even hope for survival was very aggressive treatment.
Bone loss associated with chemotherapy induced early menopause is problematic. I've taken calcium, Vit D and tried to walk regularly in an effort to keep my bones strong. Unfortunately that hasn't been terribly successful but has helped some. I tried an oral bisphosphonate but developed esophageal problems. Given some of the issues with IV bisphosphonates I've been reluctant to try them and my insurance doesn't cover them.
As a nurse, I'm hesitant to add medication to deal with those issues unless there is no other choice. Joint pain escalated to the point of needing an anti-inflammatory agent but again, walking regularly does help. Hot flashes can be an issue. Again, I tried an anti-depressant for a while and decided to keep a dietary record to determine if there were dietary triggers and have found some success changing diet rather than medication. Getting adequate rest and hydration seem to help as well.
I now have extreme sun sensitivity so limit my sun exposure and when out always use a 45-60 SPF sun block, sun glasses, hat and sun-protective shirt.
Often it's hard to know if symptoms are treatment related or simple part of the aging process. Following extensive chemotherapy it does seem that survivors may experience unexpected consequences and physicians aren't sure how to manage those.
Keeping active has been useful for me and having an understanding oncologist who will listen and explore ways to help me deal with continued questions related to my treatment.
When you have doubts, a clinical examination by a physician is required to have answers and be reassured I think that your symptoms are related to previous treatments.
When you have doubts, a clinical examination by a physician is required to have answers and be reassured
As far as I'm concerned, there should be another, much more ominous sounding word to describe it, because one of the things that makes fatigue even more debilitating is that (at least for me) when trying to explain what it means to people in my life I've often felt like I'm being a big baby who can't deal with being "tired." :-)
Well.... if you've ever experienced cancer-related fatigue, you know that it's got nothing to do with "tired." The best night's sleep or nap in the world won't make your fatigue go away, whereas it will help you feel less "tired," if "all" you are is tired!
I've learned the very hard way that coping with fatigue is a long-term effort. It requires accepting that you are experiencing it, noticing when you are doing too much, learning how to conserve energy, learning how to not be mad at yourself for not being up for tasks like you used to and so on. It requires learning to be patient with yourself, learning to pay attention to your body and really take care of yourself.
Also, it can sound counter-intuitive, but all my docs have told me there's scientific evidence to back this up and I've felt the benefit myself: exercise helps alleviate fatigue. Just don't go crazy like I did and push yourself too hard!! As one of my medical team members told me: start with a 5-minute walk. That's it. Just 5 minutes. Maybe in a few days, add a couple of minutes, and keep building slowly over time until you're able to sustain more and more. The turtle wins again! The most debilitating long term side effect is FATIGUE. I put it in allcaps because it is a beast! The term "fatigue" doesn't come close to evoking what it feels like.
As far as I'm concerned, there should be another, much more ominous sounding word to describe it, because one of the things that makes fatigue even more debilitating is that (at least for me) when trying to explain what it means to people in my life I've often felt like I'm being a big baby who can't deal with being "tired." :-)
Well.... if you've ever experienced cancer-related fatigue, you know that it's got nothing to do with "tired." The best night's sleep or nap in the world won't make your fatigue go away, whereas it will help you feel less "tired," if "all" you are is tired!
I've learned the very hard way that coping with fatigue is a long-term effort. It requires accepting that you are experiencing it, noticing when you are doing too much, learning how to conserve energy, learning how to not be mad at yourself for not being up for tasks like you used to and so on. It requires learning to be patient with yourself, learning to pay attention to your body and really take care of yourself.
Also, it can sound counter-intuitive, but all my docs have told me there's scientific evidence to back this up and I've felt the benefit myself: exercise helps alleviate fatigue. Just don't go crazy like I did and push yourself too hard!! As one of my medical team members told me: start with a 5-minute walk. That's it. Just 5 minutes. Maybe in a few days, add a couple of minutes, and keep building slowly over time until you're able to sustain more and more. The turtle wins again!
My lymphedema "reared it's ugly head" directly after my reconstructive surgery. The night of my surgery, I noticed I had swelling in my left hand. My plastic surgeon was well aware of the fact that I had lymph node removal during the mastectomy (since he was also part of that surgery.) Truthfully, I didn't think too much about it. I wrote it off as an after effect from the anesthesia. The swelling subsided, but then a short time later, it returned. This time I noticed my forearm was beginning to swell. My oncologist also noted the swelling that I was developing and suggested that I see a physical therapist to rule out lymphedema. Well, the rest is history. So, for approximately 4 years, I've been learning to "manage" my lymphedema along the "do's and dont's" of keeping a healthy arm.
That's true. There's really no set time-frame that lymphedema can show up, if ever. So many variables play a role in the possibility of developing lymphedema that one really doesn't know if and when it can occur. But being cautious with the limb that had the lymph node removal is quite important.
My lymphedema "reared it's ugly head" directly after my reconstructive surgery. The night of my surgery, I noticed I had swelling in my left hand. My plastic surgeon was well aware of the fact that I had lymph node removal during the mastectomy (since he was also part of that surgery.) Truthfully, I didn't think too much about it. I wrote it off as an after effect from the anesthesia. The swelling subsided, but then a short time later, it returned. This time I noticed my forearm was beginning to swell. My oncologist also noted the swelling that I was developing and suggested that I see a physical therapist to rule out lymphedema. Well, the rest is history. So, for approximately 4 years, I've been learning to "manage" my lymphedema along the "do's and dont's" of keeping a healthy arm.
There's 1 important fact about LE. It can be managed and improved upon, but it can't be cured. To have the symptom of LE fade/improve, can be seen by a reduction in swelling, the absence of "heaviness" or "full feeling" in the affected limb. Sometimes, even greater mobility. Getting the LE to improve however may take some time. Whether it's using MLD (manual lymphatic drainage) de-congestive therapy from a LANA certified physical therapist, the wearing of a compression garment or by applying MLD techniques yourself, improvement can be gained. Generally, utilizing all the above mentioned along with an exercise program (such as a mild strength training program) can help to "manage" the symptoms of lymphedema.
Ten years post-radiation treatment she was diagnosed with lymphedema in one leg due to radiation burn. She learned to manage this being a fighter, survivor and determined to live life to it's fullest by using a combination of leg wrapping, compression stockings, elevating my legs, and specialized lymphatic massage therapy and now daily uses a lymphedema pump (covered thru insurance). You can learn more about her health story on her blog http://chatwithdeedee.wordpress.com/about/ My mom has lymphedema not from breast cancer but from colorectal cancer.
Ten years post-radiation treatment she was diagnosed with lymphedema in one leg due to radiation burn. She learned to manage this being a fighter, survivor and determined to live life to it's fullest by using a combination of leg wrapping, compression stockings, elevating my legs, and specialized lymphatic massage therapy and now daily uses a lymphedema pump (covered thru insurance). You can learn more about her health story on her blog http://chatwithdeedee.wordpress.com/about/
- Acute (short-term) effects occur during chemotherapy. These are nausea, vomiting, diarrhea, head aches and so on.
- Chronic (long-term) side effects occur during chemotherapy and may or may not be permanent. Some examples include chronic fatigue, liver problems, and heart failure.
- Late effects (also called long-term late side effects) appear a few weeks after the treatment has ended to even few years after the treatment. There is no way to tell if or when these side effects will appear. Some examples include cataracts, heart problems, infertility, etc. Side effects may be classified in three ways:
- Acute (short-term) effects occur during chemotherapy. These are nausea, vomiting, diarrhea, head aches and so on.
- Chronic (long-term) side effects occur during chemotherapy and may or may not be permanent. Some examples include chronic fatigue, liver problems, and heart failure.
- Late effects (also called long-term late side effects) appear a few weeks after the treatment has ended to even few years after the treatment. There is no way to tell if or when these side effects will appear. Some examples include cataracts, heart problems, infertility, etc.
Chemotherapy:
- chronic fatigue
- neuropathy
- chemobrain
- symptoms of menopause
- liver problems
- heart failure
- kidney failure
- infertility
Radiation therapy
- fatigue
- skin sensitivity
Surgery
- scars
- chronic pain Chemotherapy, surgery, and radiation may cause long-term side effects. Some examples are:
Chemotherapy:
- chronic fatigue
- neuropathy
- chemobrain
- symptoms of menopause
- liver problems
- heart failure
- kidney failure
- infertility
Radiation therapy
- fatigue
- skin sensitivity
Surgery
- scars
- chronic pain
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