Seeking Others With Fallopian Cancer Or In Remission

I was diagnosed with tubal cancer December 2003, following a complete hysterectomy for a benign ovarian cyst. This past March (2006) my CA125 became elevated, and my gyn oncologist found a tumor in the upper vaginal area. I had surgery in June in which he removed that tumor and an additional one he found attached to the outside of my colon; three lymph nodes, all metastatic, were removed as well. I just completed my second round of chemo last week (Taxol and Cysplatin)and so far so good: CA125 went down to 4, and yesterday's pelvic exam was clean. I am trying to have a positive attitude but this is all very scary. Any words of encouragement would be greatly appreciated.

DaviC

Hi to all those who have written in over the last few weeks. I was diagnosed with Fallopian Cancer in June 2003 after a complete hysterectomy for what appeared to be a cyst on my ovary. The pathology report showed that the cancer had started in the fallopian tube and spread to the ovary. I had a complete hysterectomy followed by 3 months Carboplatin & Taxol chemo treatment, then a second operation in which my lymph glands were removed plus (can't remember what it's called) but they take away more of the surrounding tissue/muscle to make sure nothing is left behind. I then had my remaining chemo treatment which finished at the end of December 2003 (I couldn't have my last treatment as my immunity was too low. I had a very low tolerance to the chemo and was really ill though my oncologist said that everyone reacted differently but that it didn't seem to influence results one way or another.

I am still in remission and go again in November for another check.

Please all stay positive. This cancer is treated the same as ovarian cancer so you may get some help from their discussion groups.

The main thing seems to be to have a good gynaecological surgeon who is thorough and doesn't leave anything to chance and of course, a reputable oncologist. As I live in New Zealand I cannot recommend where to go for medical help.
As Davria C says, it is very scary, but her CA125 is down to 4 and that's a really good sign - the lowest mine has been is 14 but that's well within the accepted level.

Anyway good luck to you all and I will be thinking of you. Judy

 

On 8/29/2006 Davic wrote:

I was diagnosed with tubal cancer December 2003, following a complete hysterectomy for a benign ovarian cyst. This past March (2006) my CA125 became elevated, and my gyn oncologist found a tumor in the upper vaginal area. I had surgery in June in which he removed that tumor and an additional one he found attached to the outside of my colon; three lymph nodes, all metastatic, were removed as well. I just completed my second round of chemo last week (Taxol and Cysplatin)and so far so good: CA125 went down to 4, and yesterday's pelvic exam was clean. I am trying to have a positive attitude but this is all very scary. Any words of encouragement would be greatly appreciated. DaviC

Hi, I'm pretty new to this board and see that it has been some time since you last wrote in.  I too have fallopian tube cancer diagnosed in December 2001.  I have had it recur just about every year but have been hanging in there.  I have just started Doxil and have only had 1 of 12 rounds so far.  My CA125 has never been elevated and always remains around 4.  For that reason I have a scan every 3 months.  In a way I am thankful my CA125 isn't elevated because I think the scan is the best indicator.  How are you doing?  I hope all is well.  I know it would be great to be able to "talk" with someone who can relate.  I hope all is well with you.  I was 51 when I was diagnosed and will be 57 this month and still going.  I can only hope!  Best of luck to you and if you can let me know how you are doing.  Judy