Reading for awhile, finally decided to post

Hi all,

I've been reading these boards since March 5th when I got some (not enough) info from a gynecologist about what is going on with me. To make a very long story short... I went in nearly a year ago to my regular Dr to report extreme cramping (very severe, like an ice pick stabbing). Had an ultrasound. Few small cysts, nothing to worry about. It progressed over the summer to stomach pain, bladder pain, colon and bowel pain, and some type of extreme referred pain to my right shoulder. I should mention here that I've been disabled with Lupus (SLE) for about 10 years now, so this may have confounded the process since it's always hard to tell whats SLE related and whats 'new'. Basicly I've been ultrasounded a few times (including ultrasounding every organ in my body), had 2 CT scans, Nuculear Gall Bladder tests, Upper GI, and more, tests nearly monthly.. trying to find the basis of pain, bloating, hicupping, and just generally being MISERABLE. Finally on a CT scan done in late February they found something. I went to a new Dr (gynecologist) at the clinic I use for the results. I was shocked to find that I have a large mass over the top of my uterus that obscures any view of my uterus or ovaries via Cat Scan. On exam he said something is also going on in my uterus, its about the size of a 3.5 month pregnancy, as well as extremely tender to the touch. Tell me about it, sex has been impossible for a LONG time. He asked about the results of my last pap which was in June and I told him I got the little card that says everything is fine.. He looked up the results himself and totally stunned me when he showed me that it was NOT fine. Although the cervical cells were fine (fine line in the report) the report went on to say that I had abnormal amounts and types of endometrial cells shedding from the uterus. This had totally been MISSED by the clinician who sends out the reports to the patients for my Dr (and also gives my dr a copy of that card I receive.) After MONTHS of testing and pain and having to keep going back saying that something was wrong, I was devastated to find that they should of been able to pinpoint this 9 months ago. The probabilities are endometriosis or cancer. He believes whatever is outside the uterus is probably the same thing that is inside the uterus. I go this Tuesday (26th) (been waiting since March 5th) for a hysteroscopy to collect a large amount of tissue and visually look at the inside of my uterus. I'll be under general anesthesia to have this done. This test is strictly to determine if its cancer. I know I will have to have a hysterectomy regardless (and possibly some bladder, bowel, colon repair)....and I am trying to think postive, but honestly I'm scared to death. Just a surgery is going to be very hard on me with SLE. If its cancer it is outside the uterus as well.

Dr said it definitely could be endometriosis, and if so its the most aggressive case he's ever seen.

I'm sooo very nervous, its been a very long month.

Sue

Welcome Sue:
s to you!!! I am so glad you finally decided to post. You are in the right spot for support and encouragement. It sounds as though you have been through it all. And will soon know exactly what is going on!!! Good for you for being so persistent!!!! Perhaps since your ovaries can't be visualized it might be a good idea to have a CA125 blood study done as well. I also want to make sure you are aware of gyn oncology surgeons. These surgeons specialize in gyn surgeries where cancer may be involved. Perhaps a third opinion? Please keep in touch with us and let us know how everything goes. My thoughts and prayers are with you.
ooxooxoxoxkarenann

I am so glad you have found us and decided to post.
You have certainly been through alot.
Please accept a big and welcome to HysterSisters and Cancer Concerns. You have come to the right place.
Not knowing exactly what is going can be very stressful.
You have lot's of loving support here as you move forward.
Please let us know what they determine on Tuesday. Some of the women here will probably have had similar conditions and can share their experiences with you. We have so many wonderful success stories here.
Hang in there. It sounds like you are finally on your way to knowing exactly what is wrong and what they will need to do to get you feeling better.
I will for you too.

Hi Sue, it sure is frightening when the word 'cancer' is mentioned I just wanted to welcome you to the cancer concerns . The girls here have all had some type of scare with cancer and we know all those worries and emotions that are associated with it. Anytime you need us just come and post. Keeping you in my prayers x x x

Hang in there Sue, When they first told me I had cancer I couldn't stop crying. I had to take medication to be able to work! About 5 yrs. ago I went to my gyno. with menapausal symptoms and he gave me estrogen. So for 3 yrs. I was on estrogen alone! Dumb me , I didn't know any better, and after he moved away, I went to a new gyno. with heavy bleeding and guess what! Endometrial cancer. They caught it early and everything is alright. I will be thinking of you and e-mail anytime

OH, SUE!!

YOU HAVE DONE THE RIGHT THING BY COMING OVER TO

THIS SITE. THE PEOPLE HERE ARE WONDERFUL AND THEY WILL

HELP YOU GET THROUGH THIS.

CANCER IS VERY VERY SCARRY BUT, I HAD ENDOMETRIAL CANCER AND ALL I NEEDED SO FAR WAS A HYST.

GOD BLESS YOU AND YOU ARE CERTAINLY IN ALL OUR PRAYERS.
I MUST ALSO AGREE WITH GETTING AN OPINION FROM A GYNE
THAT IS A SPECIALIST IN CANCER ( ONOCOLOGIST )
YOU MAY WANT TO CHECK THIS OUT, YOU MAY FIND THAT
THIS WILL ALSO HELP TO EASE ANY FURTHER FEARS YOU
MAY HAVE.

Thank you so much!

I wanted to clarify that the gynecologist is during the hysteroscopy on Tuesday to determine if it cancer for one reason.... because if it is cancer he will immediately refer me to a gynecological oncologist, and NOT do the surgery himself. He could of scheduled me already himself, but said he wants to be sure first, so he can pass me along to an expert if it's cancer. It simply can't be cancer as its already gone well beyond the uterine wall.

Sue

I am glad that you posted here. I will keep you in my prayers and thoughts. Let us know how you do. You are not alone.

I am so glad that you posted your message. It helps to get support from people who really understand what you're going through because we've been there.

Try to hang on to the good thoughts and keep busy. Be sure to let us know what happens.


Diane

Just wanted to add some HUGS, good wishes and prayers!!!
We will all b thinking about you on Tuesday, let us know as soon as you can, how you are doing.
Valentina