CancerCompass message board discussion started by lynette w. on 9/18/2002 http://www.cancercompass.com/message-board/message/all,840,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 18 months after cancer, lymph node removal and 1 year after brachytherapy I have developed enlarged glands between the rib cage and breast. They are the size of fingers and at a right angle to the ribs. My surgeon is doing the "wait and see" at the moment. I am not happy. Any one else experienced this side effect? lynette w. Wed, 18 Sep 2002 00:00:00 GMT Hi Lynette, I too am experiencing lymphedema in the breast I had a lumpectomy on. Mine occurred following radiation. That breast is now two cup sizes larger than my other one. My doctor has said let's wait and see as well. He said the swelling may never go down and that the only real risk is the possibility of infection. He did say that breast massage may help, however I have not tried that. At this point it does not cause me any discomfort except if I lay on my stomach. I did have to purchase a lumpectomy prosthesis to fill out the other side of my bra. Unfortunately I don't seem to have any more info than you do. I'm sorry I can't be of more help. I had never heard of anyone else who had experienced this, and my radiation oncologist told me she had never seen it before. Please let me know if you recieve any more info! Jennifer Jennifer E. Thu, 26 Sep 2002 00:00:00 GMT Jennifer, I have just been to the top private specilist in NZ, he said the same thing as your doctor. I have a feeling they are just waiting a seeing what develops. Massage has had some effect on my breast but not on the swelling under the breast. Today there is a deep throbbing comming from that area of my breast. I have done some physical work this am, weeding the garden, maybe that has caused some irritation. My breast is now one size larger than the good side. lynette w. Fri, 27 Sep 2002 00:00:00 GMT Hi, First time on here and not sure what to say. I am a breast cancer survivor of 2 yrs and in the last couple of days under breast where I had half removed is swelling and there is some pain. Refuse to go through chemo and radiation again so have not been to doctor or told anyone. Is this how your problem started or was it different? Do not know too many technical terms so need just a plainspoken person to answer me. If you could help any way please contact me. Pat D. Mon, 28 Jul 2003 00:00:00 GMT Hi, Everyone! I do not have the same situation as you, but my husband, daughter, and I have lymphedema in our legs (Jim & Kristina's are congenital, but mine developed after having lymph nodes removed because of melanoma). Please don't "wait and see"! Lymphedema only grows and needs constant diligence to keep it under control. Go to the following website @ www.lymphnet.org Saskia Thiadens developed the National Lymphedema Network, and we know her personally (Jim was one of her first lymphedema patients). She is a nurse who has been working with lymphedema patients for over 20 years. She has organized conferences on this subject for doctors all over the world. Investigate her site and e-mail her if you have any questions. By the way, manual lymph drainage (massage for lymphedema) is definitely effective. However, make sure that you find someone who is certified in this type of massage because it must be done correctly. The right person can train you, and then you can do it at home. Hope this info helps! Lynn Lynn R. Mon, 28 Jul 2003 00:00:00 GMT Hi-- I am one year out--just finished six months of chemo and seven weeks of radiation. I've suffered from lymphedema since surgery last Sept. My breast ballooned and then gradually settled down over a period of 4-5 months. At first the docs said it was an infection, but antibiotics didn't touch it. The breast was both swollen and tender--and inflamed. The second doc said it was an "over-exuberant inflammatory response" to the surgery and would resolve. It did somewhat, but not completely. During radiation it flared up again of course. My husband and I went to a physical therapist that specializes in lymphedema massage. She taught him how to do it and I must say that nightly massages seemed to have helped. I, too, experience greater discomfort after vigorous exercise, AND I am in constant fear that the swelling and soreness indicates that the cancer has returned. I read on MyCancerCompass that inflammation can create a friendly ground for cancer cells to develop, so I'm taking ibuprofen and have been since halfway through radiation. It helps quite a bit. My current doc is one of the foremost breast cancer docs in the country--Dr. Robert Livingston of Seattle Cancer Care Alliance. He's great and I trust him. Stay tuned. I agree with the others. Don't sit and wait. At least get some massage. Good luck. Libby Elisabeth R. Mon, 28 Jul 2003 00:00:00 GMT Hi Pat, you may find it is the time of the month, or an imbalance in your hormones. I have continued with my daily massages and just this last week I have found the main operation site is slightly larger. I am slowly going through the change of life, and I think with Tamoxifin my hormones get a bit mixed up at times. lynette w. Mon, 28 Jul 2003 00:00:00 GMT Libby, It is a bit difficult to email you directly as this notice board won't allow you, so here is my email address. wintersl@xtra.co.nz. I have continued with the massaging and I feel it is some thing I will have to continue with for the rest of my life, I have practically no swelling in my arm now and want to keep it that way. It's great how you mind can play games with you after you have gone through cancer treatment. When ever you notice a slight variation in the breast or other parts of your body you get paranoid. lynette w. Mon, 28 Jul 2003 00:00:00 GMT Hi, My name is Cathy I am a 3 year breast cancer survivor. I have had Lymphedema for about 2 years now. My cancer doctor sent me to therapy for it. No cure right now. The only treatment I know of is massage, wrapping with bandages and exercise. I sure hope they come up with a cure. Cathy B. Tue, 29 Jul 2003 00:00:00 GMT Hello: Regarding lymphedema, I have a massage therapist who spends 1/3 of his time working at a lymphedema clinic in Denver doing lymphatic massage. I have witnessed the (incredible) effects of lymphatic massage and the related reduction in post-surgical swelling in my right leg/ankle/foot. The results are temporary, but provide immediate relief from the edema as well as the obvious notable change in physical appearance (my right foot/ankle/leg looks NORMAL for a few days after treatment). Lymphatic massage requires much training and certification which is very expensive; there aren't many CMTs who are trained in this realm. I would suggest doing a GOOGLE search to find a practioner in your area. If you don't have any luck, feel free to e-mail me and I will have my therapist contact you in this regard. Good luck! Ann E. Fri, 01 Aug 2003 00:00:00 GMT Hi Pat, My lymphedema did not start under the breast but rather the entire breast swelled. It occurred soon after I completed radiation and has never been painful. A year and a half later, it remains swollen two bra sizes bigger than my unaffected breast. I highly recommend that you see your doctor, not because it may be the cancer returning, but because it is more likely an infection of the tissue. I have experienced greater sweeling after strenuous activity involving the arm on the side of my affected breast. Do you recall any activity which may have aggravated the muscles in your chest? Any swelling that is red or painful definitely needs to be looked at so a possible infection does not spread and cause you more harm. I hope this is helpful. Jennifer Jennifer E. Fri, 01 Aug 2003 00:00:00 GMT I am a 4 year breast cancer survivor. The best way to prevent lymphedema is to avoid salty foods including junk food, try to eat a low sodium diet, and exercise regularly. By following these priniciples they have prevented me from expereincing lymphedema. Also, it is a good idea to get a custom made compression glove and sleeve. The best exercise that seems to do the trick of keeping lymphedema at bay is an ellipitcal machine (ellipitical cross trainer). Whenever I use it, I noticed a reduction in any edema in a matter of one hour after use this machine. Also, it helps to tone the arms much better than any treadmill. You can by an ellipitical machine at Sears for about 500 or less at Sears. If there is a sale, then you can get one for as little as $300.00. Martina R. Fri, 08 Aug 2003 00:00:00 GMT  On 9/26/2002 Jennifer E. wrote:Hi Lynette, I too am experiencing lymphedema in the breast I had a lumpectomy on. Mine occurred following radiation. That breast is now two cup sizes larger than my other one. My doctor has said let's wait and see as well. He said the swelling may never go down and that the only real risk is the possibility of infection. He did say that breast massage may help, however I have not tried that. At this point it does not cause me any discomfort except if I lay on my stomach. I did have to purchase a lumpectomy prosthesis to fill out the other side of my bra. Unfortunately I don't seem to have any more info than you do. I'm sorry I can't be of more help. I had never heard of anyone else who had experienced this, and my radiation oncologist told me she had never seen it before. Please let me know if you recieve any more info! JenniferI hope everything is going well for you.  You posted your message in 2002 so I'm hoping you can tell me what the outcome has been. Did the enlargement of the breast continue, was it cancer, did massage help? I finished radiation treatment after a lumpectomy in November and my breast is now two cup sizes larger as well just on the treated side.  The doctors don't think it is cancer. My recent MRI was normal, but it concerns me that my breast is still enlarging.  The only symptom I had before I was diagnosed with cancer was that my breast was enlarging. It enlarged for a year and a half before I finally convinced a doctor to look into it. The only thing that showed on the digital mammogram were very small calcifications but because the breast had been enlarging, they decided to do a biopsy. It turned out to be an invasive form of cancer that did not show up other than the calcifications on the mammogram, nothing showed on ultrasound and the breast felt normal.  If you have any information I would greatly appreciate it.  Phyllis  PhyllisAnn Sat, 29 Mar 2008 00:00:00 GMT LADIES! There is no excuse for you to be suffering from this problem.  Tell your oncologist/Surgeon you want to see a licensed Lymphedema Therapist.  They are out there, and you can solve your problem with some simple procedures.  Mine started right after my lumpectomy a year ago, with swelling, redness,heat and tenderness in the lower half of my breast.  My surgeon gave me antibiotics as I was concerned about cellulitis, but then when I went to an oncologist she said she didn't think it was cellulitis, but "a little lymphedema".  I had only heard about the arm lymphedema and I only had 2 nodes out so I wasn't even thinking about lymphedema in the breast itself. I went on the 'net and found the lymphedema therapist and my Onc was more than willing to give my an Rx for a few treatments.  It only took 4 visits following my surgery a year ago to help me get this under control for the rest of my life. I use an elastic tubing binder at night, almost every day. (obtained from the therapist.) It clears out 90 percent of any accumulations. If I feel any pockets of accumulation I put a little stuffing there (A sock!) or maybe wear it a little more.  I have done the massage too, but it is a little uncomfortable.  The compression works fine.I got a compression bra but found it much too tight.  BTW...Hopefully someone has told you not to wear an underwire bra and to minimize anything tight under the breast.  I wear camisoles most of the time now.  Also don't soak in a hot tub for too long (or at least get the compression on, or even a cold pack afterwards.)   A swim in cool water is the best! I also use a little Arnica gel on it.  Seems to help.Doctors like to pretend this doesn't exist.  It would mean that their treatments (surgery, radiation, etc) have yet another side effect.  We are on our own to discover these kinds of treatments,  but they are out there!Good luck, and please pass it on!  BTW my horse farm is named Never 2 Late Farm.  It's my motto.Paula   Never2Late Thu, 17 Jul 2008 00:00:00 GMT