Anyone Diagnosed With Fallopian Tube Cancer?

I was wondering if anyone out there has been diagnosed with Fallopian Tube
Cancer as I have? My diagnosis was Stage IIIc and I'm on my 3rd round of
chemo - Doxil. Was on Taxol/carbo at first, then taxotere. I'm interested in also
joining any forming online support groups. Ideally, if there is one with
Fallopian Tube Cancer patients I'd love to know about it. If not, are there any others who'd like to get together and form one? Would also like to hear of any and all
Ovarian Cancer support groups online as well. Thanks for any info. Sandy L.L.

Sandy- My mom was dx with this cancer in May 2002. It was found after her radical hysterectomy for what we thought was primary cervical cancer. Only after the pathology report came back did we find out she had fallopian tube cancer. It was never properly staged since the surgeon did not want to go back in to do this so she was treated as a stage 3.

Her last chemo tx was Oct 2002 and she has done well so far knock on wood.

There is debate on where her cancer started but we all think it did start in her tubes and skipped to her cervix. There's an interesting article regarding skip metastasis that fits my mom's profile.

I hope you are doing ok with your cancer. I see it has been a while since your originally posted. Good luck to you.
KarynB

Greetings K--
I have been dx with this last month. It has been a hard time finding information on this. I have had one tube removed with a tennis size tumor removed, My regular doc, gyn doc thought that I had problem with my ovary, in surgery it was a shock to the gyn, that he just removed it and left a small (one inch) tube left. Possibly thinking that the cancer surgeon would go in and take everything out. I don't want to do this. I am trying to go the alternative route. I need more information than "just remove everything".
Have you found a source yet? The cancer surgeon said that this had started in the lining of the tube.

Hope things are going well for you.
Regards,
Padarnell

Hi Padernall- I'm sorry to hear of your diagnosis. From everything that I've read over these last 2 years, tubal cancer is tricky in that the cancer is in a 'tube' with open ends. Therefore the cancer cells have a way to get out into the abdomen. The proper surgical treatment is to remove everything and stage the cancer by doing a 'wash' of the inside of your abdomen. There's no other way to stage it. My mom's tubal cancer was found after the fact and the surgeon did not want to do more surgery to stage it, so they gave her the max treatment of 6 cycles of chemo. Her tumor was approximately 8-16mm, can't quite remember now. I'm very surprised with a tennis sized tumor your ob/gyn didn't just remove the whole tube.

I don't have any advice on alternate treatments. All I know about this disease is it is important to be vigilent in treatment like you would if you had ovarian cancer. It is extremely important that you get second and third opinions, preferably from a university type program or doctor. Time is of the essence with this diagnosis.

I know I haven't been much help. I'm sorry I couldn't direct you better. If you do find some alternative treatments, please let me know. I'm collecting information as much as I can.

Please take care and I wish you lots of luck!
Karyn

Hi,
My mom was just dx with Fallopian tube cancer and has had her ovaries and her tubes all taken out plus 1 lymph node has a tumor in it. She is starting next week on chemo taxol/carbotin
combo for 6 - 8mo. She isvery scraed b/c she was told by a freind that the prognois was worst for fallopian and that she maybe had 2 years left. I see that your mom was dx in 2002 and your last email was 2004. Is she still in remission? Has she had to go back thru any more rounds of chemo?
Thanks for any info on this rare diagnois
Jilltwill

Hi,
My mom was just dx with Fallopian tube cancer and has had her ovaries and her tubes all taken out plus 1 lymph node has a tumor in it. She is starting next week on chemo taxol/carbotin
combo for 6 - 8mo. She is very scraed b/c she was told by a friend that the prognosis was worst for fallopian and that she maybe had 2 years left. I see that your mom was dx in 2002 and your last email was 2004. Is she still in remission? Has she had to go back thru any more rounds of chemo?
Thanks for any info on this rare diagnosis.
Jilltwill

Sandy,

There are so few of us with this particular cancer that maybe forming our own group would be a good idea.

Maybe I'll try starting a yahoo group and see what happens. Will keep you posted.
Pam

Is there a website or organization dedicated to Fallopian tube cancer?

I was recently diagnosed with FTC stage 3c after carrying around a 10cm mass for 5 years. All the docs thought it was endometriosis. Since they waited so long to bipsy, I now has metastis. I can't have chemo or radiation due to a rare bone marrow disorder. I'm forsed to look for alternative or targeted therapies. What treatment worked for you and who is your doctor?
Any news on the support group? thanks a bunch

jonie

Sandy,

I am searching for people who have had this type cancer. How are you doing? My mom has this cancer.

Anna