DYTYBR

Thanks for answering about nipples. I went to the pink perfect site and they were very helpful. Are you in Colorado? On this site they won't let you give phone # or e-mails! (Yet)

Hi DYTYBR, would you mind checking in with mauzi who is going to have a mastectomy and tram flap reconstruction on 12/16... She had some questions regarding recovery and since you went through it this year I just hoped you might be able to give her some helpful hints...thanks...happy holidays!

Hello there... Just thought I would say Hi and let you know i also have IBC.. no many of us out there. I just finished treatment and am getting ready for surgery. Good Luck

Hi,
I have been busy and haven't had a chance to get back to you. I am having another recurrence. The rash was not a reaction to the bandages and tape like the Wound Care specialist thought it was. The “rash” is in my right axilla and going down my right arm on the diseased side and it has spread to the skin and remaining tissue of the left breast for the first time.
I went in for surgery last Thursday and had a new port put in as my last one only lasted 18 months! I also had a skin graft to the open wound from the intense radiation treatment that I received. I had the skin graft done to expedite the healing of the wound so that I can get back to chemo. The Dr. said that it may not take due to my skin being radiated so much! Hopefully the graft will take and I will be able to get into chemo within 10 days or so. I will be taking TDM1 which is a newly released drug for those of us who have Her2. I will try and keep you posted. I would also like to hear more about your diagnosis. Did you have any reddening or rashes as a sign of the IBC? I still have not had a new Pet Scan to see if my IBC has spread. In answer to your recently posted question, my doctor continued to do follow up appointments every 6 weeks to have my port flushed and my blood checked. Let’s stay in touch!

Dear DYTYBR,
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 will be in wound care twice a week for over two months. 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 from the allergic reaction 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 recurrences. The good news is my Rad Onc really thinks she killed all of the cancer where she radiated me.She radiated me from the top of the ribs to above my collar bone and from the middle of my chest to under my arm. FYI This whole process has taken 18 months so I was hoping for a reprieve. What type of implants do you have? If you had implants like I did I would be cautious as the implants can tend to hide things... I am extremely sorry that you have to go through all of this at such an early age. 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. The good news for me is that so far the cancer has not spread anywhere else but I am due for another Pet Scan as soon as I heal. May you have excellent luck and never have a recurrence!!!

Hello DYTYBR notice we are in the same city. Did you start your treatment yet? I am just joining this site forgive me if you have posted what type or started treatment. I am a little worried about my Chemo treatment. How I'd you handle it? Did family go with you?

Hi DYTYBR
My plastic surgeon was through Penn Medicine. I can say that they were great during my time in the hospital (BMH). I will email you as soon as I hear from you. We have a 16 year old son. We read a book that Jefferson Home Health gave to us. He is doing well thus far. Glad to have met someone so close and know what I will be facing, next year (Jan.).