New Here

snbdye2000

Hi everyone,
I just registered and have not done the "about me" page yet. Just thought I would say hello. I was diagnosed with uterine cancer last december and had a robotic hysterectomy with no further treatment since they thought they got it all. Unfortunately it has come back and I now I have three large tumors in my pelvic area. Very stressed out about all this, haha! I live in Oregon and being referred up to OHSU this week to get my case put in front of their tumor board to come up with a treatment plan. So tired of the waiting. Anyhow, thought I would say hi and hope to make some new friends here. Love to all

JoAnnDK

hello
It must be so devastating to know that your cancer has come back after the surgery that you thought was successful.

Some questions....what stage and grade was your uterine cancer? Did a gyn onc do your surgery?

Keep us posted, please.

JOANN

norma2

Hello!
Glad you said Hello! I am so sorry to hear about your tumors. The stress and the waiting are such a hard part of this journey. You are not alone, however. There are some wonderful ladies on this site. They have pulled me through some sleepless nights.

I can tell you that there are lots of things to be done for treatment. Read some of the discussions and you will see that there is a myriad of different approaches to this cancer.
So welcome!! Although I am sorry for your cancer diagnosis, I heartily welcome you here.
Great place for information and support. Norma

jazzy1

norma2 said:

Hello!
Glad you said Hello! I am so sorry to hear about your tumors. The stress and the waiting are such a hard part of this journey. You are not alone, however. There are some wonderful ladies on this site. They have pulled me through some sleepless nights.

I can tell you that there are lots of things to be done for treatment. Read some of the discussions and you will see that there is a myriad of different approaches to this cancer.
So welcome!! Although I am sorry for your cancer diagnosis, I heartily welcome you here.
Great place for information and support. Norma

Welcome~
Sorry to hear about the cancer, but know this is a wonderful place full of great ladies who help each other. Might I suggest just searching thru some past postings to gain more insight on your cancer and know we're here to help you in any way.

Hugs,
Jan

snbdye2000

jazzy1 said:

Welcome~
Sorry to hear about the cancer, but know this is a wonderful place full of great ladies who help each other. Might I suggest just searching thru some past postings to gain more insight on your cancer and know we're here to help you in any way.

Hugs,
Jan

Thank You
Thank you for the welcome ladies. It helps knowing that there are these groups that I can access here at home for support and information. My cancer journey started last year. I was 44 at the time and started having very irregular periods. Gynecologist thought it was all just perimenopause. So I dealt with the nonstop bleeding for many many months. It finally got so bad I was bleeding huge blood clots that wouldnt stop so I ran in to his office and they did a biopsy. Immediately afterwards was sent for an ultrasound. Ultrasound showed tumors in the uterus and the biopsy showed cancer. I was referred to a gyn/oncologist and she recommended a robotic hysterectomy. I had that done december 17, 2010. I had 20 negative lymph nodes and a negative pelvic wash. Stage 1B grade 2. I was told that normal treatment is no further treatment, just have pap tests every 3 months. I did that. But around the 6 month mark I started having serious issues with my bladder and bowels. Going to the bathroom was so painful, and I was unable to have a normal bowel movement. My 6 month pap test came back fine so I went to my normal doctor about the bladder. We thought maybe overactive bladder or something was going on, so started taking medicine for that. It did nothing for me. The pelvic pain got so bad one day I took myself to the local ER room and they did a CT scan. It showed 3 tumors, the biggest one pushing up against my bladder and bowels. Hence all the pain! Back to the oncologist I went. They were quite shocked that it came back so soon and so fast. I had a PET scan that shows it has not spread outside of the pelvic area, thankfully. I transferred to a new oncologist in my town so that I can do treatment closer to home. They are sending me to OHSU, a teaching hospital in Portland OR, to get their opinion on treatment. I have that appt. this thursday. What makes my case extra tough is that I am HIV positive, have lived with that disease for 12 years now. They believe the hiv went out of wack after my surgery and is the reason for the recurrence. No oncologist here has dealt with the two diseases before and they dont know what to do for me. Big problem I guess with my hiv meds and interaction with treatment. So hopefully OHSU will have the answers for us. I'm sure they will, as I cant be the first hiv positive woman to have uterine cancer! haha Before finding out the cancer had returned, I had planned on having all of my teeth pulled in december. I had such bad infections that just wouldnt go away. So we pushed that up to last week, so that I can get rid of all that infection before starting treatment. So I am home now with my new dentures. The pain isnt too bad but it just seems like a year of non stop surgeries and set backs in my life! But I have to remember one day at a time. One good thing, I can smile now without shame and no more abcesses in my gums! Yea!

norma2

snbdye2000 said:

Thank You
Thank you for the welcome ladies. It helps knowing that there are these groups that I can access here at home for support and information. My cancer journey started last year. I was 44 at the time and started having very irregular periods. Gynecologist thought it was all just perimenopause. So I dealt with the nonstop bleeding for many many months. It finally got so bad I was bleeding huge blood clots that wouldnt stop so I ran in to his office and they did a biopsy. Immediately afterwards was sent for an ultrasound. Ultrasound showed tumors in the uterus and the biopsy showed cancer. I was referred to a gyn/oncologist and she recommended a robotic hysterectomy. I had that done december 17, 2010. I had 20 negative lymph nodes and a negative pelvic wash. Stage 1B grade 2. I was told that normal treatment is no further treatment, just have pap tests every 3 months. I did that. But around the 6 month mark I started having serious issues with my bladder and bowels. Going to the bathroom was so painful, and I was unable to have a normal bowel movement. My 6 month pap test came back fine so I went to my normal doctor about the bladder. We thought maybe overactive bladder or something was going on, so started taking medicine for that. It did nothing for me. The pelvic pain got so bad one day I took myself to the local ER room and they did a CT scan. It showed 3 tumors, the biggest one pushing up against my bladder and bowels. Hence all the pain! Back to the oncologist I went. They were quite shocked that it came back so soon and so fast. I had a PET scan that shows it has not spread outside of the pelvic area, thankfully. I transferred to a new oncologist in my town so that I can do treatment closer to home. They are sending me to OHSU, a teaching hospital in Portland OR, to get their opinion on treatment. I have that appt. this thursday. What makes my case extra tough is that I am HIV positive, have lived with that disease for 12 years now. They believe the hiv went out of wack after my surgery and is the reason for the recurrence. No oncologist here has dealt with the two diseases before and they dont know what to do for me. Big problem I guess with my hiv meds and interaction with treatment. So hopefully OHSU will have the answers for us. I'm sure they will, as I cant be the first hiv positive woman to have uterine cancer! haha Before finding out the cancer had returned, I had planned on having all of my teeth pulled in december. I had such bad infections that just wouldnt go away. So we pushed that up to last week, so that I can get rid of all that infection before starting treatment. So I am home now with my new dentures. The pain isnt too bad but it just seems like a year of non stop surgeries and set backs in my life! But I have to remember one day at a time. One good thing, I can smile now without shame and no more abcesses in my gums! Yea!

Thats right, honey, one day at a time.
You have a lot on your plate right now. I don't really have much info on HIV but from what I have read they have made great strides for treatment for it. As far as the dual diagnosis, many people have other complications such as heart, diabetes, etc. and are treated sucessfully. My outlook has always been that the glass is half full.

Please let me know how you are doing. I know there is a wealth of information available and others here are more well-educated than I am in many areas. I am here to offer encouragment and a listening ear.

You are not alone, my friend. Norma