lymphedema - here are some facts, and some things i have learned

no one talked to me about lymphedema. NO ONE. women who have breast cancer surgery, especially mastectomy ( to refresh, i had bilateral mastectomies), can have lymphedema. there are other causes of lymphedema, but i am not going to talk about those. this is a blog about breast cancer, after all.

 i have had shoulder problems in my right shoulder and arm area. i have been going to physical therapy, and getting therapeutic massage for this problem. lymph nodes were removed from my left side- hence, the lymphedema. i was told that i should not have blood pressure taken, or blood drawn from my left arm, as these things could be harmful. since i am in health care, i knew that taking blood pressure or drawing blood could contribute to lymphedema so i was always quick to stick out my right arm when the need arose.

i have mentioned the statement that my physical therapist made  to me about " the traffic in  ten lanes of highway having to now merge into two lanes" before. that is a very descriptive way to explain the swelling ( congestion)  associated with lymphedema. just as a quick reminder, our lymphatic system is part of our immune system. the lymphatic system is involved in the removal of waste products from the body, as well as producing cells that fight off infection in our bodies. i.e, it is very important.

lymphedema can occur immediately, or even years after surgery for breast cancer. mine did not start until one year after my surgery. the swelling in my left arm ( it can occur in the legs or arms, as well as  other areas of the body) is not horrible, but it is noticeable to myself, as well as the physical therapist and the masseuse. it is uncomfortable at times. sometimes my arm gets numb, too. i was fitted for  a compression sleeve for both arms. i use the one for my "good arm" as pain relief for my shoulder. it is very important to go to a person who is a licensed compression garment fitter. when i went to get my compression sleeve, the fitter took several measurements of my arms and the correct size for me had to be ordered.

here is the sad part. lymphedema can never be cured. but, it can be managed through compression garments, exercise, physical therapy, diet, and some lifestyle changes- such as getting enough sleep and reducing stress. i sometimes think that stress is involved in just about everything that is bad for us. i suppose that it did serve a purpose at one time in the development of man kind. think, big tiger approaching- run, run, run.

i am thankful to my physical therapist and masseuse for helping me with my lymphedema. i know this is quite a "dry subject" to be discussing, but i am hoping that it may help someone who , like me, was not quite prepared for this side effect from breast cancer surgery. i have just hit the high points about lymphedema. there is some good information from reputable websites, like the mayo clinic, dr. susan love's website on breast cancer, the american cancer society website, just to name a few. as with any journey, it is good to know as much about where you are going as you possibly can. i encourage those who may be dealing with, or suspect they might have lymphedema, to be as informed as possible.

here is the " to be continued" part......

it has been a long journey. or if you are a grateful dead fan, a " long strange trip". i did see my family doctor, and he requested the CT scans, the first report from the radiologist, as well as a new, has not been seen by anyone, report from said same radiologist. when i saw my doctor, he had the FIRST report from the radiologist, but not the new and improved( i sure hoped) version. he basically told me that he really, really needed to see that last report before he could make a final judgment call on the necessity of having the MRI.

so i waited, and waited and waited some more. i know everyone is busy, and i know that i  am not the only patient any of these doctors have, but i was getting a little anxious. my family doctor's office called me late this past thursday afternoon and told me, and i quote, " the radiologist, after reviewing the previous CT scans, recommends no further evaluation or testing at this time." there was  only one word that i could think of at this point that could adequately express my feelings , and that was , to quote Madea, " H-A-L-L-E-L-U-J-E-R !!!"

so i am not saying that we should all refuse to have tests that our doctors might order. what i am saying is, that our doctors need to explain WHY we need the tests, and we need all the facts before we make a decision to have a particular test. i keep copies of all of my test results, lab work, pathology reports,etc in a note book. that has been invaluable to me, and one of the best pieces of advice that i can give anyone who has a chronic medical condition. i have said this before, but perhaps it bears repeating.  one time my endocrinologist asked me if i had a copy of a particular  pathology report that somehow did not make it into my electronic chart. of course i did! she made a copy. keeping your own records  is probably the most important part of  being a good patient advocate. it involves a little work and perseverance sometimes. but,  it really benefits everyone, especially the patient, in the long run.

i am continuing with my physical therapy, for my shoulder, arm, and neck. i am also  continuing my therapeutic massage( my favorite of the two). i have been able to reduce the pain in these areas quite a bit, and have cut down on my mobic dose ( a non-steroid, anti-inflammatory drug- sort of like motrin). my physical therapist said that i have quite a bit of scar tissue in these areas, and that has most likely been the source of my pain, and limited range of motion. the PT also said that having had 14 lymph nodes removed  ( 11 in my throat, and 3 in my chest) has played a role, the same amount of fluid is traveling down that " two lane highway", that once cruised down a ten lane one. that makes me more susceptible to infection as well. i do not worry about this, but it is useful information to have. i do try to be a little extra careful- make sure to get my flu shot, wash my hands,etc.

finally, this father's day weekend, i would like to thank my husband for being such a wonderful caregiver. he has supported me emotionally, and sometimes physically, and i will always appreciate what he has done. i  know that i can always count on him to be there for me. he has been there through the good, the bad, and certainly the ugly ( think, bald). i could not imagine doing this without him. thank you, sweetheart.

i will have to take some of my own advice now

my last blog was about my CT scan that i had on wednesday, may 25th. since we had the memorial day holiday coming up, i was pretty confident that i would not be  hearing anything until tuesday of the following week, or even later. imagine my shock and dismay when i got a phone call from the doctor's office the next day! my husband and i had one of our grandsons for the day on that thursday . we took him strawberry picking, second year in a row, and had  other fun activities planned like throwing rocks into the river( his favorite activity at our house). it was good that he was there- otherwise, i probably would have folded.

the nurse told me that the radiologist had seen a " spot on my liver" and that he wanted me to schedule an MRI so that he could check it out further. i will admit that i panicked. my oncologist  told me that breast cancer, when it spreads,usually  goes to the chest- lungs or bones. my doctor did not mention my liver. the chest and/or  bones is pretty much where thyroid cancer, when it spreads, goes to. although those darn rogue cancer  cells can go pretty much anywhere they want to. i have gotten some scary phone calls in my life- too many really. one, when my endocrinologist  called me at work and told me that i had thyroid cancer. then again, when same  doctor's nurse called me and told me that my thyroglobulin levels were elevated( that means the thyroid cancer is in the  blood stream and could possibly spread). these levels were elevated for three years, but i am happy to report that they are now down to normal.

i hastily agreed to the MRI, but then used my brain- yes i have one, even if i occasionally succumb to chemo brain. i called the oncologist's office back and requested that we just hold off on the MRI for now. i asked the nurse to repeat what she had said earlier. it seems that i have what is called a liver hemangioma. this is a NONCANCEROUS( benign) mass that is usually inherited. most people are born with this, and unless you are scanned for other beasties, you might never know that you have one. it is supposed to look like a tangle of blood vessels. there is no treatment for this, and a liver biopsy is not recommended due to possible bleeding.

i asked the imaging center to send my scan and records to my family doctor, who i have been  seeing for the past 30 years. he is the voice of reason, i might add. i have an appointment with him on monday afternoon and we can discuss the findings and his thoughts on another dose of radiation. this might be a good time to inform others that the radiation in ONE CT scan is equal to what a person would receive in 500 regular chest X-rays. now if a patient really needs a CT scan, then the risk is worth the gain, you might say. but if not, then there might be better options. i also had a near maximum dose of radioactive I-131 ( a treatment dose) after my thyroid cancer surgery. it is just a wonder that i do not glow in the dark. my son told me one time that i, when we were visiting a mineral and  gem museum, should not stand too near to the Geiger counter lest i set the thing off! he was probably not too far from wrong on that one.

so i have a plan of action. i am my own patient advocate. i am reading as much reliable material about the liver hemangioma as  i can. one thing that bothered me though,  was that  the oncologist's nurse told me to" relax", when i called her the second time. o.k., i will admit to being a little upset at first. i was not rude or demanding, however.  i wonder how she would take the news if she was the patient with my history?

so, i will know more of what i decide to do after i consult with my family doctor on monday. yes, what I DECIDE  TO DO . i take this decision seriously, and will have as much information as possible, but in the end it is all down to me. what i feel comfortable doing, while making responsible decisions for myself, as well as my family.

to be continued.............................