raven

Like you, I developed Lymphadema about 7 months after surgery. I am very interested in your use of Frequency Specific Microcurrent. Do you visit a practitioner or do you have a machine and do it yourself? Thanks for any help you can offer.

yay - you and me, too - not being very computer oriented. I discovered the clicking on the picture a while back. My so-called expertise is entirely by accident. Take good care.

Hi Raven,

Thank you so much for your response about your lymphedema. I appreciate all of the information that you provided me with. I also wanted to update you that I saw my breast surgeon and she did a biopsy on my "rash" and even though we do not have the results back we are both sure that the cancer is back not only on the skin of the left breast but under the arm on my right side and also going down the arm on the right side.I can hardly believe that it came back so fast after the aggressive radiation that I had. I have not been able to get into Chemo because of my open wound from the radiation. This week I am going to have a skin graft to enable the wound to heal faster so that I can get back to chemo. I also have to have another Pet Scan, so I am praying that my cancer is still regional. I noticed that you have Stage IV. I am curious to hear about your experiences since 2010. I am also curious if your insurance covered any of the cost for the machine that you purchased for your lymphedema. I look forward to hearing from you when you have a chance. In the meantime I hope that you are enjoying this beautiful time of the year in Alaska!

Hi Raven,

Thanks for responding. That is awesome news that you went to MD Anderson!!! My Rad Onc told me that she used MD Anderson Protocol for my twice a day radiation. I am lucky to have excellent Drs. My oncologist is so personable plus very experienced and he really does not have the time to take on new patients. My breast surgeon is the only female Oncology Surgeon in Orange County, CA where I live plus she is a breast cancer survivor. My Rad Onc is great as well. They are all experienced with IBC and have current patients besides me. You must have been quite alarmed when your DR. died! How eerie!. My husband and I had agreed that I wasn't going to do reconstructive surgery but my Doctors talked me into it. I am just now getting lymphedema so when I have time I will correspond with you about that. I need to say bye for now as we are going out of town for the Mother's Day weekend. Take Care! I hope that you have a Happy Mother's Day as well.

Hi Raven,
This is my response to one of the other gals who has IBC.

I do not want to worry you as my IBC is Her2 Positive which is the most aggressive type, but I have already had two recurrences to the diseased breast. I will tell you all of the details. Upon diagnoses I had a large tumor but no obvious redness to the breast but my nipple was starting to be pulled one way. I did chemo 1st and the tumor disappeared after 3 weeks. After the 4-5 months of chemo I had a bilateral mastectomy with immediate implants. It was great waking up to boobs : ) I had 26 lymph nodes removed with no signs of cancer anywhere! Then I was unable to get into radiation because I could not lift my shoulder above my head. So I had to go to physical therapy. I started getting set up for radiation 2 months after my mastectomy and then discovered a rash on the diseased breast. My breast surgeon thought that it was a heat rash and almost didn't do a biopsy. The cancer was back just to the skin and tissue. I went on chemo for another 5 months and was about ready to get into radiation at last and then the cancer came back to the skin as a rash again. This time I had the Breast surgeon take out my implant and cut away all of the diseased skin. I had to recuperate for a month or so because of my incision and an allergic reaction to the glue from the surgery. I got set up for radiation and within a week the cancer was back in little lesions on my incision. So then I had 6 1/2 weeks of the strongest radiation possible twice a day with a lot of blasts to the incision. My wonderful Rad Onc warned me that she had to burn me and that I may end up in the burn unit at the hospital. It wasn't as bad as I thought it was going to be, but the radiation did burn off my epidermis in quite a large area and I have been in wound care twice a week for over a month. I am allergic once again to the treatment on the bandages but other than that it has been very manageable. I do not have to do any of the wound care myself. BUT I have noticed another rash on my good breast. My wound care specialist isn't as concerned as I am as I do have a rash on my diseased side but it is scaring me and I plan on going in for another biopsy next week if it doesn't go away! The rash looks the same as the past two times. The good news is my Rad Onc really thinks she killed all of the cancer where she radiated me. FYI This whole process has taken 18 months so I was hoping for a reprieve. What type of implants did you have? If you had implants like I did I would be cautious as the implants can tend to hide things.... The good news for you is that you do not have the HER2. My friends with ER and PR positive have had much better luck.

I was also diagnosed 2 years ago with IBC stage IIIB. Had 16 weeks of chemo, followed by double mastectomy and 22 lymph nodes removed under left arm. 18 of them were cancerous. Then I had 36 radiarion treatments. Hang in there and please let me know how you are doing.