Recent diagnosis

There are a number of us here with UPSC in a variety of stages.  Plus great ladies with other rare or more typical forms of uterine cancer.  All are wonderful, open and caring.  We share all kinds of information with each other.

Take things one day at a time and no matter what - we are all statistics of one.  You are already doing things we would recommend such as seeing a gyno-oncologist and going to a comprehensive cancer center.  Be open to the experience - I have had many amazing things happen because of my cancer and for that I am grateful.

be gentle with yourself - Anne

Sandy, please try to take a breath.  You are on the right track with everything and the waiting is just the hardest part of all this.  If I could make a suggestion, if there is someone who could go with you to the gyn onc, I suspect they will recommend surgery first and go from there.  If someone can be a second set of ears or take notes, it will be a lot to try to remember all what is said to you on that first visit.  

I was a complete wreck before I met my surgeon, couldn't sleep, couldn't eat, but after I met him I knew he had a plan and it was incredibly calming.  However, if they offer you ativan, or something to relax you some, don't hesitate to take it.  There will be lots of things going on in the next month or so with tests and prep and you need to get some sleep.  

I am sorry you had to find us, but I am glad you have.  You are not alone in this journey, you are going to do it.

Sandy I found out almost the same way except that I went to my primary care dr because of a vaginal discharge and bleeding. Probably nothing serious he said but let's do an ultrasound. That showed some thickening of the uterine wall, so he sent me, because I insisted, to my gyn. He did a D&C and called me into his office a few days later. It was UPSC that had spread to my cervix. It is shocking to hear and I know it took me a little while to take it all in!

Take a breath and try to relax. The beginning of this journey is hard! The fear, the waiting, all the unknowns! Things will start to become clearer after you see your gyn/oncologist. He will have the answers you are looking for, or at least some of them, give you a plan of action and explain what will be happening. He may order some blood tests and scans. I left my doctor's office feeling a lot better than I did going in!

I was also treated at a large cancer center, Moffitt Cancer Center in Tampa, Fl. My dr there did my surgery and my chemo. He was always upbeat and never let me doubt that I would get through this. That was in Oct 2013. I had surgery on 12/05/2013 and chemo and radiation in 2014. It has now been almost all a year and a half since I completed treatment and I am still cancer free! 

Hope this helps, Sandy

EZLiving66 said:

Sandy, this sounds so much

Sandy, this sounds so much like my story except my PAP came back normal so my gyno did an endometrial biospy at the insistance of my primary care doctor.  I'm about a month ahead of you.  Had a total hysterectomy using the DaVinci robot on September 30th, thinking it was just endometrial cancer and found out after the complete biospy I had UPSC.  I had my port put in today and tomorrow I start chemo.

My gyno/oncologist said I'm Stage 2.  I have found nothing but love and support on this board and know a lot of the wonderful ladies on this board are willing to share their stories of courage and inspiration.  I'm usually up later at night so feel free to email me if you want someone to "talk" to.  

Take care,

Eldri

Hope your port isn't too uncomfortable and everything goes well tomorrow.

SandyD said:

Thank you!

Thank you so much everyone for the welcome and sharing your experiences! I know I'm among friends I'll update after my oncologist visit on Friday. Hope I'll be able to help someone else as you've helped me!

Sandy

Sorry you had to come here, but this a great place for information and support.  You can do this. Hugs and prayers Lou Ann

EZLiving66 said:

Be sure to let us know how it

Be sure to let us know how it goes!!!

that showed that I had adenocarcinoma.  I had no idea what type of cancer I had at that point- uterine or cervix- or the specific type and grade.  When I saw a gynecologic oncologist several days later, he did a biopsy in the office and he told me then that he thought I had uterine cancer.  When the pathology report came back, it indicated that it appeared that I had a grade two uterine cancer.  After surgery to remove everything including lymph nodes and a pelvic wash, the path report showed that I had UPSC, stage 3A.  Cancer was also found in my pelvic wash.  I had surgery two years ago today and I am still NED and feel great. My Ca-125 is currently 10.   Woo Hoo!

Wishing you the very best,

Cathy 

Welcome to this site.  Remember we are all here with you and for you.  Great place to ask all questions, and to vent when you need to.  This journey is doable just take it one day at a time.  If needed get a second opinion. Get copies of all your reports, they are yours and it is your body so ask for them.  Sorry you had to find us this way but this site is better than just search the big internet and has more up to date information.  My story was I had the bleeding, went to gyn dr, did a D&C waited for 7 days for the results and was totally blindsided by the results of cancer.....I was not even considering that.  Had the D&C Mar 25, 2011, Got the results by phone on 1 April. The gyn dr set up the appointment with Gyn ONc dr for Monday 4 April had surgery 8 April.  They did not mess around. Started chemo 8 May 2011.  I cannot believe even in this day that a gyn dr would say usually it is just a hysterectomy and zap! you're cured especially if it's caught in an early stage.  The gyn onc dr could not and would not even give a a guess at what stage it was before surgery as they do not know.  My tumor on the uterus was a stage 1A according to the pathology report after surgery.  Early. But 1 lymph node had two microscophic cancer cells, I immediately went to stage 3c. I have a grade 2 or 3 type cancer of carcinoma sarcoma. 

Like I said take it one day at a time.  Try to find a positive, you were concerned about the bleeding and went to the dr.  So many do not do that.  They did the pap, found something, did a biopsy, found something.  You are doing something about it.  Take someone with you to the gyn onc appointment.  Take a notebook, ask questions, take a recorder (use your smartphone).  I had a full abdominal surgery so recovery was a bit harder but not much.  My gyn onc dr watned that way because she wanted to move organs around look at them to look for signs of cancer elsewhere.  Did not find any but that is what she wanted.  

If you have more questions we will be here for you.  Praying for you. trish

SandyD said:

Appointment mixup

My update:

Not a lot to report.

When I went to my scheduled appointment (involving three hours of travel by car, bus, and subway) at the cancer center (Dana Farber) on the 30th I was told that they'd cancelled my appointment because I'd been set up with the wrong kind of dr (a gyn oncologist) when I should be seen first by a surgical oncologist! When I went home saw a message on my machine which must have been sent the evening before (I was rushing around and didn't see it). To say the least, this was super frustrating! Royal screw-up of huge proportions! Just want to get an idea of what to expect and what will happen, when! I now have an appointment with the correct dr for next Monday (11/9). 

I live by myself and have always been extremely independent and proud of it! However I realize I may need some help and support so my sister is going to drive cross country to come stay with me for a bit (she'd rather drive than fly). She'll arrive on the 17th or 18th. Hoping to schedule surgery around her arrival.

I live by myself as well and it was hard to ask for help at the beginning.  But as someone on this board mentioned early on, by allowing people to help you, you are giving them a gift.  People feel helpless and letting them help, in any way they can, helps them feel that they are doing something.    You will be tired after the surgery and it will be good to have someone around to fetch your food, drinks, pain meds, etc.  I live alone, but my BF stayed with me the first few nights after I got home from surgery.  He also walked with me everyday for a while, until I was totally steady on my feet.  It's also good to have someone you can call to run errands for you.  Learning to accept and ask for help is one of the major lessons cancer has taught me so far.

Good luck on Monday!

Chris

It's good to see another cat person on here.  I also have a gray and white cat, plus a pure gray one. 

I originally was told by my ob/gyn when I had some bleeding that I had a "big ole polyp" and was reassured that these are almost always benign.  I had a D&C to remove it, then got a call 3 days later saying I needed to go to a gyn/onc at a larger hospital in Albany, NY,  as it was cancer.  He didn't tell me what kind.   A month later, I had surgery by my gyn/onc (who also was a surgeon), and 10 days later, I learned I had UPSC that was the worst stage possible, IVB.  It had spread from my uterus to both ovaries, the omentum (the layer of fat in the belly), and the small intestine.  Thank God I had a wonderful gyn/onc who apparently did very well at removing it.  I had chemotherapy at a different hospital closer to home where I worked.  I shouldn't still be alive, but I am, with no evidence of disease (abbreviated NED).  I'm five years and almost two months out from the end of my chemo. Everyone's journey with this cancer is different.  Many have had it come back, but so far, mine hasn't.  I just expect the worst and when the worst doesn't happen, I'm happy.  I wish you luck and hope everything goes successfully for you.