When I was 28 yrs old, I was diagnosed with GCT in 98, and had one chemo back then. In 01, I was found recurrent. Then all my reproductive organs were removed and had another very aggressive chemo. In 02, I had my 3rd surgery to decide whether it was scared tissue or recurrent granulose cell tumor. It came back positive. My gynecologist in UAB left some spots there which he claimed it is useless to take them out since they recurred so fast. since then I have gone through LUPRON, 2 combination drugs chemo again. A few wks ago the CT reports showed these spots left by last surgery have grown huge, and new spots showed up. Right now I am undergoing another chemo again.
I feel so depressed, despaired and hopeless. I talked to my present oncologist, he said nothing wrong for my gynecologist’s surgery. And right now my disease is surgery incurable. My question is that:
Why are all other recurrent GCT patients who have received more than 3 times surgeries ? do these patients only have one nodule when it happens?
I feel so hopeless, I really want to close the battle it is so hard. However, if there is any chance, I still want to try.
Anybody shares the same experience, esp. these win, could you pls. give me some information pls.? I want to get another opinion.
Thanks a million! Best rgds.
Dear Gracelaqiu,
Please don't feel hopeless. As long as you have breath in you, there is hope. I was diagnosed in 1992 with GCT and had a complete hysterectomy at the age of 37. I went 11 years without a recurrence and in 2003 during a routine chest x-ray, 12 nodules were found on my lungs, some as big as golf ball size. I had surgery for a biopsy and the tumors were found to be a recurrent of GCT. Needless to say, it was not possible to remove all of them by surgery, as I would have had no lungs left. I took eight rounds of chemo, which included Cisplatin, Etoposide, Bleomycin, Carboplatin, Taxol, and Taxotere. I also took ten radiation treatments. After eight months of treatment, I finally went in to remission with the remaining 11 tumors gone. I have been almost two years from my last treatment and doing great. There were times during my treatments that I also felt hopeless and felt like giving up, especially when after six months of treatment my tumors were still there, and I was so sick from the chemo. At that time I was sent to a Gynecologist Oncologist who specialized in women's cancer who gave me no hope and said that I had had enough chemo and should get my affairs in order. I was so mad when I left his office, I decided to take charge of my life and prove him wrong. I went back to my regular oncologist who gave me two more rounds of chemo and radiation. I also began to research and get as much information about nutrional and alternative treatment that I could get my hands on. I began to drink Noni Juice, and take vitamins, and concentrate on my diet. And when I went back for my c-scan two months later, my tumors were gone. I also had a web of friends and people I didn't even know, all over the country, praying for me. I understand I may have to fight this disease for the rest of my life. But as my infusion nurse told my one day, we are learning to LIVE with cancer now. I hated to hear your story, because you are so young. But I just celebrated my 50th birthday, and was so thankful to be here. I wouldn't have thought 25 yrs. ago that I would be happy to be turning 50. I am enjoying my first two grandbabies and feel I have so much to live for. I know things are tough now, but please don't give up. When your treatments are over and you are well again, things will seem clearer and your life could be better than it's ever been! I will be praying for you and if you have any questions or just want to talk, I'll be here.
Debra
Dearest Deb,
Tks so much for your encourage. i hope i can be as lucky as you are. I want to talk about why I never get radiation in my treatment with your oncologist.
can you pls. give me his email pls.?
tks a bunch and best wishes,
Grace
I am sorry, I don't have an e-mail address for you, but my oncologist was Dr. Gupta at Texas Oncology in Garland, TX. I have since moved from Garland and now see doctors in Tyler, TX. I know all situations are different and can't always be treated with radiation, but I would definitely keep asking questions and make sure you are getting the treatment you need. I hope you get the answers you are looking for.
Best wishes,
Debra
I am sorry, I don't have an e-mail address for you, but my oncologist was Mannish Gupta at Texas Oncology in Garland, TX. The clinic address is 777 Walter Reed Blvd. Suite 201, Garland, TX 75042. I have since moved from Garland and now see doctors in Tyler, TX. I know all situations are different and can't always be treated with radiation, but I would definitely keep asking questions and make sure you are getting the treatment you need. I hope you get the answers you are looking for.
Best wishes,
Debra
Dear Debra,
TKS SO MUCH.
I think I want to know more than radiation, I want to see what chemo they have saved your life too.
Best wishes,
Grace