Tricia - Dx 1993 - NED 17 years

[tricia]

My name is Tricia and I was diagnosed with ASPS in 1993 when I was 23 years old. The primary tumor was located on my cervix, which I was told was an unusual site for this type of cancer. Prior to my diagnosis, I was hemorrhaging for 10 months, seeing many doctors who sent me home with hormone treatments, because they had no idea what was causing the bleeding. After losing so much blood that I passed out in my doctor’s office and was sent by ambulance to the hospital for a blood transfusion, a “cyst” was finally large enough that it could be seen on my cervix--the true source of the bleeding. When the OB/GYN decided to do surgery to remove the “cyst”, he became suspicious that it was beyond his scope of training and instead took a small biopsy. Although I was at a large hospital in Los Angeles, the pathologist reviewing the biopsy could not identify the cancer and the sample was sent to another lab. Nearly a month later, I received the diagnosis of ASPS. I met with an oncologist who immediately scheduled me for a radical hysterectomy. A lymphectomy was also done and microscopic cancer cells were discovered on several lymph nodes, but tests showed no other metastases. A drug sensitivity test was done on the tumor and, based on those results and other information that was provided by my doctor, I decided not to have chemotherapy. In the 15 years since my diagnosis, I have had no sign of ASPS.

After being told that most cancer treatments available at the time of my diagnosis were not effective for treating ASPS, I spent so many days living in fear, wondering if/when/where the cancer would reappear and not really knowing how to cope with it all. Over time, I discovered that I could have a better quality of life by focusing not only on my health (which is to some extent out of my control) but on my overall wellbeing (which I absolutely can take into my own hands). For me, this meant letting go of the fear and trying to live each day as it comes, experiencing the present and even having hope for the future.

Reading all of your stories fills me with feelings of tremendous compassion for all that you are going through and tremendous admiration for the courage, strength and perseverance you’ve shown as you face this disease. I am so grateful to see that these forums are now available to share information. In 1993, internet access was not used as commonly as it is today. Because the disease was so rare, I never connected with anyone who had it. It was even difficult to find a group of young adults going through cancer, period. I truly appreciate those that have taken the time and effort to create and manage this site.

All my best to each of you,
Tricia

[cricri]

Hi Tricia, I think it's the best thing to do to build on our quality of life first.

thank for the story,

Cricri

[Annika]

I really wish Tricia would return my message. I Was diagnosed with ASPS on my cervix as well last year and I have so many questions for her.

Annika

[Ivan]

Annika, have you emailed her?

[Annika]

I sent her a private message two days before I posted this message. I am very "hell bent" on speaking with her on the issue of hormone replacement and if she was able to keep her ovaries

Annika

[Amanda]

Hello Tricia!
I am so happy for you! I agree btw chemo should not be done unless you have to have it with this diagnosis.. Keep up the great aditude! <3

[Olga]

Annika, hi, you you sent a private message to Tricia trough the User Control Panel, I suggest you to repeat it using the Members area for the direct e-mailing as people often miss the fact that they have a message trough the board.

[Annika]

Olga, I did send her a message through the user control panel a month ago, I just sent her another today, I am eagerly waiting for her to call me or message me

[Olga]

Annika, hi again, try to use Tricia direct e-mail instead of contacting her trough the board, I just sent you a message with her direct e-mail through the user control panel today, people often do not check their messages here on the board,
good luck,
Olga.