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Recent diagnosis

SandyD's picture
SandyD
Posts: 123
Joined: Oct 2015

Hi everyone. I recently learned I have uterine cancer and the results of the endometrial biopsy showed papillary serous cells. Felt like someone had punched me in the nose when the gyn informed me a little over a week ago that my pap smear was extremely abnormal and she needed to do a biopsy right away for cancer. She called me back several days later with the results.

Seems like the bad news (and my emotional response) is coming in stages:

First, I go to my primary dr to let her know I have post-menopausal bleeding. She reassures me that while cancer is one possibility there can be lots of causes. So I'm telling myself it's unlikely to be cancer and I'll be fine. She referred me to the ob-gyn.

So next I have my appointment with the gyn doc and she does a pap smear and says to come back for a follow-up.

I go back for the follow-up convinced in my own mind this will be nothing (and a waste of time) and the first thing the doctor tells me is I have this very abnormal pap smear and she needs to do a biopsy. She explains that most uterine cancer is just a matter of doing a hysterectomy and zap! you're cured especially if it's caught in an early stage. Plus these days they do the surgery robotically. So I leave thinking this is not the worse thing that can happen and feeling pretty well resigned to it.

Then I get the results of the biopsy: a rare and aggressive form of uterine cancer: papillary serous cells were found.

So that's where I am now. One thing I've learned from this so far is to not make any assumptions. As they say "what will be, will be". My appointment with a gyn oncologist is this Friday. This will be at a comprehensive cancer center. I have no idea what to expect or what will happen next. I found this forum several days ago and it has been enlightening. It's great to learn from others who have been through this. I've been mentally noting the advice from all of you who are now or have gone through this. It's invaluable! I'll try to update as I go forward.

 

AWK
Posts: 364
Joined: Mar 2013

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

ConnieSW's picture
ConnieSW
Posts: 1205
Joined: Jun 2012

but I wish it had been anywhere but here.  My story is exactly the same as yours except I started with my gyn.  She did not believe I had cancer, Pap smear said look again, she did and said don't worry, looks like early or precancerous so surgery will fix that.  Nope, not so, same diagnosis as yours.  I am 1a and 3 1/2 + years out of treatment.  So far, all is well.  What you are going through now is the hardest because of all the uncertainty.  Take it a day at a time.  Keep coming here and everyone will do her best to guide you through this.  I learned more here from the ladies who've been there, done that than I ever did from the doctors.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 1959
Joined: Mar 2013

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.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1323
Joined: Jun 2015

And I'm also sorry you had to find us but glad you did!  Just one thing to add to NoTimeForCancer's response... I would ASK for an anti-anxiety med.  It is great to have it available when things get overwhelming. Sometimes out of the blue, you might just get hit with anxiety with no "apparent" reason. I don't take mine often, but do not hesitate to do so when I need them.

Also, I hope you are able to take the time to read many of the posts. They are an amazing reference and the knowledge you gain will also help you calm down and ready yourself for the next steps. I was so frightened until I found this board. It brought me through that first month. (It is the hardest time.)

Sandy3185's picture
Sandy3185
Posts: 224
Joined: Oct 2013

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's picture
EZLiving66
Posts: 1045
Joined: Oct 2015

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

ConnieSW's picture
ConnieSW
Posts: 1205
Joined: Jun 2012

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

EZLiving66's picture
EZLiving66
Posts: 1045
Joined: Oct 2015

It wasn't too bad.  My gyno\oncologist did it and I was fully sedated.  My throat is sore from the tube they put in and I had to sleep on my back all night (poor Eldri - LOL) but I'm up this morning ready to take on UPSC and win!!  I have my little chemo bag packed and I'm just waiting for my husband to come home from work to get me to the hospital by noon.  Thanks for asking, Connie.  It brought a tear to my eye that you would care.

Take care,

Eldri

Lou Ann M's picture
Lou Ann M
Posts: 987
Joined: Feb 2015

Thinking of you and hoping everything goes well today. You can do this.  Hugsand prayers, Lou Ann

SandyD's picture
SandyD
Posts: 123
Joined: Oct 2015

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

Lou Ann M's picture
Lou Ann M
Posts: 987
Joined: Feb 2015

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's picture
EZLiving66
Posts: 1045
Joined: Oct 2015

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

Abbycat2's picture
Abbycat2
Posts: 573
Joined: Feb 2014

 

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 

 

 

SandyD's picture
SandyD
Posts: 123
Joined: Oct 2015

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.

Lou Ann M's picture
Lou Ann M
Posts: 987
Joined: Feb 2015

I am sure you were frustrated, but now you have it straitened out.  i hope everyting goes well for you on Monday.  It will be good in many ways to have your sister with you for a while.  Hugs and prayers, Lou Ann

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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

EZLiving66's picture
EZLiving66
Posts: 1045
Joined: Oct 2015

Luckily I am only 15 minutes from my cancer center but I'd be upset if I got there and they made a mistake like that.  Let us know how your Monday appointment goes!!!

Take care, 

Eldri

txtrisha55's picture
txtrisha55
Posts: 625
Joined: Apr 2011

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

pinky104
Posts: 395
Joined: Feb 2013

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. 

SandyD's picture
SandyD
Posts: 123
Joined: Oct 2015

I'm totally a kitty person. The kitties own me, lock, stock, and barrel. The photo is of my little girl kitty who died about 6 months ago of cancer. Little did I know at the time that we would have cancer in common.

I had a benign uterine polyp removed a number of years ago. Now I kind of wonder if that was some sort of precursor?

Pinky, you've really been through it but your story gives me real hope that I can get through this too! Thank you!

SandyD's picture
SandyD
Posts: 123
Joined: Oct 2015

Had my visit at Dana Farber with the surgical oncologist. Surgery is next Wednesday. My sister is coming in from New Mexico to Boston and she'll get me home to Maine post surgery and stay with me for 3 weeks. As all of you are likely familiar with, the Dr. can't say whether I'll be able to have just a laparoscopic or will need a full laparotomy until he goes in. I imagine that greatly impacts recovery time.

Any advice about the best things I can do post surgery to help with recovery?

I'm in good spirits and ready to get on with it and face surgery, recovery, chemo, etc. and whatever comes!

 

Cucu me
Posts: 214
Joined: Apr 2015

what you eat after the surgery. I guess I ate mostly food high in fiber and 2or 3 days after I got home I got obstucted bowels ,so I went to ER

and then I stayed 5 more days in the hospital.

Great your sister will be with you.

Best of luck!

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