1st consultation with Radiologist Oncologist on Monday: what should I expect?
Comments
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uspc
So sorry to hear your having to deal with this awful stuff too. I had radiation 25 sessions for 25 minutes each day. If I can suggest anything first I would suggest that make sure you like your Dr. I had to go to 2 before I felt comfortable with the Dr and also the program he was going to put me on. Please make sure that you know how extensive your field will have to be. I was told that they would have to do full abdom. but as I researched more with my 2nd Dr I found I could do just pelvic, this gave me MANY fewer side effects. I also had internal radiation and chemo. There is not much to worry about during your treatments and nothing to the tatto. I think I feel that the long term problems are worse than any of the actual treatments. Do you know what your full treatment plan with be as far as chemo radiation or internal radiation. I am new to this site so if I am asking the wrong questions please understand!! If I can answer any questions please just ask.0 -
You have UPSC too? wow!pjba11 said:uspc
So sorry to hear your having to deal with this awful stuff too. I had radiation 25 sessions for 25 minutes each day. If I can suggest anything first I would suggest that make sure you like your Dr. I had to go to 2 before I felt comfortable with the Dr and also the program he was going to put me on. Please make sure that you know how extensive your field will have to be. I was told that they would have to do full abdom. but as I researched more with my 2nd Dr I found I could do just pelvic, this gave me MANY fewer side effects. I also had internal radiation and chemo. There is not much to worry about during your treatments and nothing to the tatto. I think I feel that the long term problems are worse than any of the actual treatments. Do you know what your full treatment plan with be as far as chemo radiation or internal radiation. I am new to this site so if I am asking the wrong questions please understand!! If I can answer any questions please just ask.
There are so few of us with UPSC on this Board! I was diagnosed as Stage 3c. I hope to get my full treatment schedule tomorrow. I had blood drawn last week for a new 'post surgery' CA125, but don't have those results yet. My pre-surgey CA125 was 50, and if it dropped down within the normal range following my surgery, in my heart I will allow myself to hope that the cancer has already been sliced out of me. That won't stop me from having the radiation and chemo, but it might allow me to question some of the stuff with the greatest risks of long-term after-affects. Of course, if that number has gone up since my surgery, I will want them to do it ALL to me and be very aggresssive with the radiation and chemo. Please stay in touch with me. & please tell me what you know about radiation & UPSC. One of the other posters here with UPSC Stage 3c is having 5 weeks of EXTERNAL radiation; 3 weeks of INTERNAL radiation, 5 weeks off, & then 8 rounds of chemo, about 7 1/2 months before her schedule is done. I am expecting something similar, although my gynecologic oncologist didn't seem that keen on the internal radiation. i should know more tomorrow after my appointment. Thanks!0 -
what has/is working for me....lindaprocopio said:You have UPSC too? wow!
There are so few of us with UPSC on this Board! I was diagnosed as Stage 3c. I hope to get my full treatment schedule tomorrow. I had blood drawn last week for a new 'post surgery' CA125, but don't have those results yet. My pre-surgey CA125 was 50, and if it dropped down within the normal range following my surgery, in my heart I will allow myself to hope that the cancer has already been sliced out of me. That won't stop me from having the radiation and chemo, but it might allow me to question some of the stuff with the greatest risks of long-term after-affects. Of course, if that number has gone up since my surgery, I will want them to do it ALL to me and be very aggresssive with the radiation and chemo. Please stay in touch with me. & please tell me what you know about radiation & UPSC. One of the other posters here with UPSC Stage 3c is having 5 weeks of EXTERNAL radiation; 3 weeks of INTERNAL radiation, 5 weeks off, & then 8 rounds of chemo, about 7 1/2 months before her schedule is done. I am expecting something similar, although my gynecologic oncologist didn't seem that keen on the internal radiation. i should know more tomorrow after my appointment. Thanks!
You are right ...there are so few of us on this board... and so few of us with any history to draw from. Before I began my treatments I reseached the only clinical trial I could find on UPSC. (RARE) Their recommendation was surgery, 3 rounds of chemo (I had caboplatin and taxol/paclitaxel) then "sandwiched" 25 days of 25 minutes of PELVIC,, (not full abdominal radiation,) then back for 3 more sessions of chemo, (I ended at 2 here because of blood clots and toxins.) then 3 sessions of brachytherapy. I also had excellent results with aloxi (during my chemo so that I would not be sick to my stomach.) My CA 125 was 7 before surgery... now it is 12. So the CA125 was never a reliable test for me. I had a very aggressive treatment, but we have a very aggressive form of cancer. I took small doses of adivan when I felt anxious and depressed very over whelmed or out of my control !?. Most of the time I felt good physically. I always had a lot of energy. I was seldom tired. I had a very hard time sleeping. I was able to work my real estate brokerage, until I started having a lot of trouble with my memory. (chomo and stress) I now have a lot of trouble with my back from all the radiation. I was told I had USPS on my 54th birthday. My youngest daughter was 9. I took a stand that I would be here for her and the big C was only going to slow me down for a short time. Many Many Many days I had felt that if I started to cry I would never stop. I went through being mad and feeling that 'everyone' else had a normal life why was I spending mine like this..... Now I find I can start to trust my body again. I don't mean to go on and on to you. But I am still here after 2 years and doing good by following this clinical trial guide. Hope I can help you somehow ... Good luck to you.0
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