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• April 22, 2013 10:46 a.m.

  To Angel and Sherry; compression garments are not enough. You need to have physical therapy for your arm,shoulders and back physical recovery if necessary but most of all you need to have daily massages to drain your arm. It took me several months to have my arm and hand back to "normal". Make sure you learn the massages from an lymphedema specialist. Also, I had a drainage placed at my armpit right after all my nodules were removed for some time.

  - maria

• January 13, 2013 8:11 p.m.

  I will be out of treatment 4 years on February 20, and still having problem with lymphedema and chronic pain in my chest shoulder and neck. I have been been sent around and round to different Doctor's who don't seem to be able to tell me what is going on. And none know what to do for me. This is getting very depressing. I called my Dr. for a referral to the pain clinic because the dose of pain medication she is willing to prescribe doesn't really help that much anymore. I have also tried exercise, had to stop too much pain, meditation, tai chi, and yoga, but to no avail. I thought cancer patients were supposed to have their pain controlled, but I have not heard back from the pain clinic and I do not understand why?

  - Sherry

• September 26, 2012 12:05 p.m.

  Has anyone out there ever gotten their lympyadema under control enought so that they can sometime go without the sleeve?

  - Evan

• September 9, 2012 12:18 p.m.

  I have lymphedema in both my legs - lower right leg and full left leg into trunk on left side from ovarian cancer staging surgery 5 years ago when over 40 lymph nodes were removed from my abdomen - not sure if any were removed from the groin. Lymphedema began in my left lower leg within 6 months of the surgery. The right leg, primarily in the thigh area began a few months later. I'm not sure what I recently did to cause my left leg to become inflamed with red spots all over the place. I'd appreciate anyone who has experienced this to respond.

  - Liz

• August 5, 2012 7:53 p.m.

  also, I've been advised to watch amount of spicy foods, salt intake from Lymph. nurse.

  - Georgia

• July 18, 2012 10:18 a.m.

  I started experiencing Lymphedema type symtoms about eight months after Breast Cancer surgery and the removal of lymphnodes. Within weeks I began to notice that the swelling in my right hand and arm was not improving. I began physical theropy and the process of wrapping nightly. The challange for me was always getting the swelling down before wrapping and keeping it down thereafter. A few weeks ago I found a product online (amazon.com) called Lymphedema Reliever that is a used to redirect fluids from swollen limbs. The results have been remarkable. The first week I used it before wrapping because it really helped me to move the fluid from my hand and arm very fast. After about three weeks noticed that the inflamation was less frequent and by using the product i'm able to reduce inflamation almost immediately. This is the best i've felt in a very long time. I realized that I just could not keep feeling sorry for myself. Sometimes you have to be willing to take the extra step to getting your life back to as close to normal as possible.

  - Sara

• July 1, 2012 1:23 p.m.

  I have been having pain/swelling in my left leg and foot. I saw primary care Dr. and I had a doppler which was negative for blood clots. I went today to an Urgent care Dr. who said I may have Lymphedem/or problem with lymphatic system but I would have to go back to my primary care Dr. for him to refer me to someone . Does anyone know what type of Dr. specializes in that?

  - Sherron

• June 15, 2012 2:46 p.m.

  In received my breast cancer treatment through Mayo and received no follow up counseling and there is none in this area available, I have had to go to Marshfield Clinic to receive this.

  - Kari

• December 16, 2011 4:23 p.m.

  I do now where a lymphedema braclet but when I had the lymph nodes removed I asked my Dr. about it and he said "that would never happen to you". Then when I asked my plastic surgeon, I was given the same answer. Both were wrong.

  - Sherry

• December 16, 2011 4:20 p.m.

  I developed lymphedema in my left arm after I had my implants put in during reconstructive surgery. I was not banded for lymphedema precautions though the Dr. that did the plastic surgery was well aware I had all my lymph nodes removed on the one side, and I and my husband on different occasions while they were getting me ready for surgery asked the nurse to band me, she never did. Soon after I developed lymphedema. That was almost a year ago, and it has spread from my arm and shoulder to my side, left breast and back. When I got my last infection I have not since been able to get the swelling in my left breast under control. They have never felt good, always had pain with the implants, but now with this swelling I am unable to take the pain without taking pain medicine everyday. I did not want the Dr. who put them in to take them out (as recommended by the FDA), so I went to see a Dr. in Rochester, he was very rude and blew me off. Yesterday I seen an orthopedic Dr. who I discussed the shoulder back pain with. He was very nice although he had no definite answer for me. But since this pain started when the expanders were put in I think the implants are to blame for the pain, but that Dr. in Rochester was so rude, I don't want to go back. I would like to stay in the system but don't know who can help me??

  - Sherry

• November 4, 2011 10:58 p.m.

  To Sherry: You may have neuropathy in your chest and underarm. It would at least be worth talking to your Dr. I have the same thing but it is controlled with meds. I did not have reconstruction since there was no skin to stretch. Because of my type of cancer, they took everything and I mean everything. There was just enough skin tissue left to sew me up. I hope you get some relief! Please excuse my many posts, I just found this site tonight. ??

  - Susi

• November 4, 2011 10:51 p.m.

  I also need to add that it is important you were a medical bracelet. They are available at multiple outlets on the web.

  - Susi

• November 4, 2011 10:19 p.m.

  I too have lymphadema in my left area from IBC stage III breast cancer. Four of ten nodes were cancerous. I developed lymphadema after about six months. It was very painful and swollen. I had the physical therapy for drainage and after about 20 treatments the swelling was less. I have been wearing a compression sleeve for almost six years and four of those, my husband wrapped my arm every nite. I discovered quite by accident, that if I sleep in a recliner with my arm raised above my heart the swelling lessened even more. I no longer have to wrap at night but I wear a sleeve every waking moment. My arm is comfortable now; I take Neurontin for the chest neuropathy from the surgery and methadone for pain. I continue to sleep in the recliner and can say both arms are nearly the same size. Yes my arm still hurts but it is bearable. Walking on the treadmill has also helped. My suggestion is to exercise moderately, I walk off 200 calories every day, watch your weight and diet, and keep your arm raised whenever possible. I know first hand how bad this can get, but massage, diet, and exercise can help.

  - Susi

• October 31, 2011 6:50 p.m.

  I am a breast cancer patient who developed lymphedema in my left arm after reconstructive surgery with implants. I have been having serious problem with swelling in the breast. None of my doctors can explain why, and why it is so painful. It hurts under my arm and across my chest sometimes the pain is so intense I cannot control it with pain meds. My family Dr. said in absence of infection she does not know what to do. Plastic surgeon says nothing is wrong. Lymphedema therapist isn't sure. I am quickly losing faith that someone will help me. Even a call to the cancer care line did no good the nurse I talked to was going to talk to my oncologist and call me back last Friday. But no call came. I feel like I'm just kind of being left afloat because I can't even getting a call returned. What do I do to get some help?

  - Sherry

• October 12, 2011 6:13 p.m.

  I have a chance soon to work at UPS but I would be picking up packages (sometimes heavy) every 3 to 5 seconds for 3-4 hours. I know I'm strong enough to do the work, but worry about getting Lymphedema. I had 15 nodes removed after a lumpectomy 4 years ago. Just wanted some opinions on whether to even try this job or not.

  - Mary

• September 26, 2011 11:25 a.m.

  does whole body vibration machine help with lymphedema?

  - ralph

• July 25, 2011 4:12 p.m.

  I am a two-time cancer survivor. Once at 26, and 34. At 26 I had stage IIb cervical/uterus large tumor. I had 50 nodes removed from my groin to my breast area, and gratefully not even one was positive. I am a twin and was born with a malformed uterus. I had a low-grade follicular thyroid cancer at 34. Both were treated by surgical removal followed by radiation. I went back to work and I developed lymphedema in both legs after 3 years. Luckily, my uncle worked at a medical supply store and bought my first fitted pair of compression stockings. My doctor did not refer me out for help. Not because he didn't care, but in America there has been a huge disconnect between cancer treatment and the onset of lymphedema. Lymphedema is well-known in Europe. There are whole hospitals dedicated to it there. Not so in US. That's why the doctor from France knew to transplant the good nodes to another place (response to a post below). I think that's great. I found out about a lymphedema clinic in Tucson, AZ in 1994, and went. The local techs were taught by German nationals using the Vodder method of MLD (manual lymph drainage). It is a non-invasive way to move (by massage) the lymph fluid to good nodes. I tried the pnematic pump first, and it only made my good leg worse. "Working out" can bring on LE, not prevent it. And, for those who can't afford treatment, keep your limb above your heart. Clean, moisturize skin, put garment on upon waking. Visit me: bellaonline.com/cancer edito

  - Rann

• June 18, 2011 9:59 p.m.

  i had cancer in left breast about 15 years go. they didn't take any limph nodes as it hadn;t spred,so no chemo, or radiation. i have diabetes, am 75, have a pace maker, live alone. i also have faux gout, and my left wrist has been swollen for some time, but now my whole arm is swollen. why after sll these years????

  - syd

• April 7, 2011 9:50 p.m.

  I have a friend whose arm lymphodema post bc was successfully treated by transplanting nodes from the groin into the armpit where nodes had been removed. The surgeon was visiting from France. I was amazed, having seen only a bunch of exercises but never this type of treatment listed on sites.

  - Penelope

• April 6, 2011 5:00 p.m.

  Jamie - I would check in with your oncologist or primary care provider to find out more about what is going on with your heart rate. Herceptin can affect cardiac function, especially if you have a history of previous cardiac problems. However, it is best to have your symptoms checked out by your health care team.

  - Sheryl

• April 5, 2011 7:29 p.m.

  Please help me? I would like to know what I can do to manage my heart to avoid low heart rates caused by my herceptin?

  - Jamie

• April 3, 2011 6:45 p.m.

  I suffer from lympedema in both of my legs. It was not brought on by cancer, but through damages done to the lymphatic system during a car wreck. The doctors think that I might have had a tendency for it but the wreck set it off. Write to your congressmen and let them know that they need to support the bill about lymphedema in the medicare system. The wraps and the pumps need to be paid for by medicare as they are medically needed. Many people forgo treatment as they can not afford the wraps as they are expensive, and the massages are too. This is not cheap disease to have, it is costly in both human suffering and in montery cost.

  - Penny

• March 29, 2011 11:17 p.m.

  I have lymphedema in my right arm. I had a smal fatty turmor removed about 10 years ago and in about a year or so my arm started swelling. My MD said it was lyphemdema and sent me for arm therapy which seemed to help as long as my insurance paid and I had the "hands on" help and now I cannot afford to go as I am now retired with a small income. I wear a sleave when my arm starts hurting and burning, but I have no one to help me with at home therapy. It is hard dealing with this alone and also embrassing to show my arm. Can anyone give me any suggestions of what I can do for self help?

  - Sue

• March 26, 2011 8:11 a.m.

  For information about resources and support with lymphedema, join the Lymphedema Network in the United States, www.lymphnet.org; in Canada, go to www.lymphovenous-canada.ca or www.lymphademapeople.com for local organizations.

  - Kathleen

• March 23, 2011 4:46 p.m.

  If you are at risk for or suffer from lymphedema, you might want to look into an exercise program called the Lebed method. An exercise group and the DVDs are available through the hospital at which I am treated. You might find a group through a cancer survivors' support network. More information is available through www.gohealthysteps.com

  - Kathleen