IBC with skin mets

[Sandy H.]

I had the pleasure of talking to a couple of ladies at the SABCS, who were IBC with skin mets with no organ or bone involvement. I was excited to meet these people so I can net work with them. They were 6 and 8 years out from Dx. and doing well. Yes, they were recurring with skin mets and were in and out of treatment. That was encouraging for me (so far my organs and bones are clear unless something show this week on my follow up scans) and I wanted to share this with those of you who are IBC, Inflammatory not IDC invasive ductal. I am hoping to keep in touch with these folks and keep you updated. I will try to connect them with Joe so he can do a link with them on this support for IBC. They may join us on this board. With the Holidays we are all so busy so don't expect much until first of the year. Smiles, Sandy

[Cindi]

Sandy,

I do not have IBC, but do have skin mets. Actually just finishing up my daily hyperthermia radiation treatments (also includes 1000 mg. Xeloda each day). I have 4 more treatments. Then a PET CT fusion scan and will find out what's what. Hopefully I am NED. But, as you stated I realize that skin mets can recur. I'll always be on the lookout, like every other pain we have to wonder about.

Good luck with YOUR followup scans. The waiting is the worst for me. I will keep you in my prayers.

Cindi.

[wlward]

Dear Sandy
Thanks for posting this. It givers me hope. I do not habe IBC but have had recurrences on the scar line over and over.Have finished 6 rounds of xeloda about 3/4 weeks ago and now sit and wait - good thing is that xeloda didn't stop working so I guess i can go on it again. Have not had organ involvement - diagnosed Oct 2002.
Love
lindaw

[Sandy H.]

Thanks for both replies. I thought IBC only had skin mets. Sounds like you both are in the same boat as myself. I will let you know about my scans and how they turn out. I am so busy with the Holiday that I will not have time to worry about the results. As soon as they land on the nurse's desk she will call me. She always tells me if I don't hear the next day to be sure and call. Thanks for the prayers. Hugs to you both and may you enjoy the Holidays. They are special to me because I am still here with my family. This is the first year (4 years out) that my husband is relaxing and enjoying them with me with out being parnoid about loosing me!! We have been shopping together, and he wants to buy everything I say I like. Guess, I need to be careful!! Hugs, Sandy

[wlward]

Dear Sandy
just wondered if you have ever had a brain scan. I have mentioned it to my onc but he says without symptoms they get too many false positives. I would be scared to have one but may ask him again next tiem. how about you?

love
lindaw

[Sandy H.]

I have asked 2 oncologist and no way will they give me one unless I have symptoms. I also asked them at Dana Farber in Boston a huge research center that my hospital is plugged into and they said the same. They also said it doesn't matter how soon you find the mets because if they show on an MRI then symptoms will appear within 2 or 4 days anyway as there is not much room for swelling. I have not pushed this issue however, if I really wanted one I would have to lie and say I was having symptoms. I don't know what to say about having MRI's on the brain. I have had one its been a couple of years now and they said that is o.k. for a base line. I was having neck problems when I had it done. You have to do what you are comfortable with. Hugs, Sandy