What a nightmare!

[Chelee]

For the people here that have followed my on-going problem with getting my radiation...now its at a STAND STILL AGAIN. I've had two lung test...first one says I have about 39 % use of my lungs. The V.Q. test says 37%. My pulmonary is concerned after talking to my Rads onc doc which if he had his way....he would of already done the radiation on me. (Kind of scary!) That man has no idea HOW BAD my lungs are and yet he would of already done radiation. I am NOT even close to being like everyone else anatomy wise...wish I was though.

I was told last Friday that after the VQ lung test my rads doc said everything was ok and good to go...all he had to do is talk to my pulmonary doctor. Obviously that didn't go as planned because my pulmonary doc knows if he hits another 12% or more of MY lungs...that would be SERIOUS. (My pulmonary doctor has been around the block and is a very smart man.) I trust him.

Now today I call to SEE if they talked and if I can start as time is marching on!!!! I am SEVEN weeks late to start! So now I am told they are going to present my case to the tumor board this Thrusday and discuss it. I suppose my onc doc, surgeon, rads onc, other onco doc's, and my pulmonary doc.

If they decide they CAN'T do any rads on me...what happens? I am stage IIIA...highly aggressive cancer. Now I am really getting scared. Why didn't this place figure this problem out ALONG time ago! How often do women like us recur? I heard around a 40 % recurrance rate. That scares me. Has anyone every heard of anyone that DIDN'T HAVE....or COULDN'T have rads and did NOT recur. I am really, really scared you guys. Before they found out how BAD my lungs are...they all said I HAD to have rads no matter what. They acted like it WILL come back. What can I do if I CAN'T do rads?

If I have 37% use of lung right now...and you take another 12% or better...that doesn't leave me much. 25%... I will be in a wheel chair and on oxygen. I already use oxygen at night as it is. I wrote to a major cancer hospital awhile ago about my rads problems. They said if nothing else I really need to have the axilla area done...they said its kind of a "pay me now, or pay me later." I am terrified. Why is this happening to me? I have come so far and I thought I was doing pretty good now this happens. If anyone has any encouraging words or information...any thing that might help me I would appreciate it.

Chelee

[Kaye]

Hi Chelee, sorry to hear of the difficulty you are having. I see that you are in So. Cal. Where are you being treated? Can you go somewhere for a 2nd opinion? Take care and hope this is soon resolved--wishing you all the best!

If I was in your situation, I think I would ask my onc if I could stay on Herceptin indefinitely, instead of doing just a year and not do rads. That is if your heart is ok.

Also remember that there are stage 4 women who have complete response to their chemos, and are now ned. It is not a forgone conclusion that you will recur if you do not have rads. The AC, taxol/Herceptin could have gotten rid of it all.

I am not that far behind you, my tumor was 4.6 in and I had 2 Pos nodes. It was also very aggressive, I had my annual exam 3 months earlier and my dr. felt nothing and then , 3 months later I find this huge lump. I am only 37. I did not have radiation of my axila. I did have radiation of my chest wall and neck.
I am 16 months from diagnosis, finished my year of Herceptin and am doing well.
My sister had Uterine cancer, stage 3. She did 4 rounds of taxol and refused radiation. I thought she was crazy to not do it. the drs essentially told her that they were just waiting for it to show up in another organ. Well, that was 4 years ago and she is fine. Her dr is shaking his head, that she is still here and is still ned.
Good luck with your decision!

Laurie

[MJo]

I got a bad respiratory infection when I took A/C (I've had asthma since childhood) and was hesitant about taxol and herceptin. I went to a pulmonologist, and after a month of recovery he gave me the all clear for Taxol and Herceptin. I told my Oncologist that, and he commented "you listened to him but not to me?" It's hard to challenge the doctors, but I'm glad you did. The oncologist was focused on the cancer. I was focused on the cancer AND my lungs. My lungs are precious. I didn't want to be cancer free and, as you say, in a wheelchair on oxygen.

Since you've been aggressive about chemo and herceptin, here's hoping you are cancer free. Maybe someday herceptin and tykerb will even eliminate the need for us Her2ers to take rads.

[tousled1]

Chelee,

I'm sure you are frustrated with your rads being delayed. If I'm not mistaken, there are quite a few women who have not received rads but did get the Herceptin. I'm a firm believer that things happen for a reason. I know that with or without the rads you'll be fine -- NED for a long time to come.