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Scared, waiting on uterine biopsy results

lovinglife51
Posts: 9
Joined: Apr 2012

Hello - I'm trying to keep my wits about me and not jump to conclusions until I get a call from my Drs Ofc tomorrow. My changes started 3 months ago. I'm 51 so thought the changes to my period were signs of Menopause. My period has always been as regular as clockwork. Starting 3 months ago I started having some spotting between my periods. And my period start/stop points were blurred. Also about 2 months ago started having a watery discharge. At first I thought it was urine, but there was no odor. And wanting to find out exactly where this was coming from, purposefully used a couple of tampons when not on my period and found that they captured all of the wetness so knew it wasn't from my bladder.

I went in for my annual last Friday and the Doctor seemed really concerned. At first she wanted me to come back after my period which was due in 2-3 days for a sonagram and then she said she might due a uterine biopsy depending on the sonagram. But I could tell she was uneasy which started to worry me. She announced she wasn't going to wait and was going to do the uterine biopsy then. I was nervous, concerned about the pain, but it wasn't anything I couldn't handle. Actually I had some really strong cramps for 48 hours afterwards. Anyway, I'll get the results tomorrow as to if I have cancer or not. The doctor did comment when she finished the biopsy that it "didn't look good"...she said "I got a lot of stuff out of you".

So...here I am, trying not to jump to conclusions, but my mind is racing. My one concern is that in all the internet searches the watery discharge seems to be associated with the "Bad" type of Uterine Cancer. Ironically, I just lost a high school friend last Thursday (day before I went to the doctor) she had lung cancer (never smoked a day in her life). Anyway I don't want to ramble but would appreciate any feedback on the "watery discharge"...did any of you have it and if you did what type of cancer did they diagnose you with.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I had it. Was diagnosed with UPSC stage IA. It's hard not to jump to conclusions but hang in there

Liz in Dallas

lovinglife51
Posts: 9
Joined: Apr 2012

To LizGrrr - I am in Dallas also. Who was your Gyno/Oncologist..?? I'm assuming you had hysterectomy...have you had treatment..??

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

with you as remembering my days with spotting and thinking I'm entering the peri-menopause stage, so not a biggie. As it continued for 3 months then met with my OB for testing. Found to have 2 small tumors in uterus and was cancer. Then to hysterectomy which diagnosed cancer in lymph node.

We all can say this cancer is scary stuff, but we do get thru it. God never wrote each of us a book on how our lives would pan out, so we must be strong and get thru all the ups and downs.

I've had friends with spotting and no cancer diagnosis, as each situation is different. I'll be thinking of you and praying it's something very minor. The waiting is the most difficult as your mind is traveling all over and into the dark places. Try not to look on the internet and research, as much of that might not pertain to you.

Sending you positive vibes....plse keep us posted on your progress...

Hugs,
Jan

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

for telling you that "it didn't look good". Why say such a thing!!! I'm sure she is nice and good and all that but doctors should realize that this just sets us patients up for worry. (I hope you tell her that somewhere down the line!)

I'm sorry you are going through this torture and hope the news tomorrow is good. (Never discount that possibility!!) Until there's a pathology report the jury is out. Unfortunately waiting is what we do alot of. It's one of those life lessons for me.

Hang in there. God bless. Mary Ann

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

I went to UT Southwestern to my regular GYN Dr.for a D&C. Path report came back with cancer cells. She set up the appointment with Dr Jayanthi Lea, MD who is a Gyn Onc Dr. She did the hysterectomy and all follow up appointments. I really like her. I have carsonomasarcoma (MMMT) in April 2011. Had the surgery at that point it was stage 3c, 6 rounds of carbo/taxol. no radiation. So far so good. Although unlike you and most of the women on here, I was not thinking cancer as I had a D&C done in 2004 & they removed a couple of polyps and I went back to normal. So I was really freaked when she called to say there is cancer. My regular Gyn did the D&C and a hystoscope and said it looked really bad in there and she had cut alot out. It is hard not to worry but everything will look better when you get the results. It is all in the attitude in dealing with it. I feel pretty good and do not look on it as a death sentence but a life sentence. Enjoy your life and live to the fulliest. No one knows when we will be called home. Like most have told you do not read the Internet as it is outdated and very scary. Will be praying for you. trish

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I had the spotting and odd cycles that made me think menopause, and spent last summer thinking I was going through menopause. Finally went to my GP in September demanding the hormone test, but she refused and said it sounded like fibroids and sent me to my gyno McClintock for ultrasound.

Ultrasound showed fibroid, so went in mid-October for a D&C that turned into a robotic hysterectomy (long story). That went well, but the pathology report came back UPSC so I was referred to gyn/onc Heffernan who did open surgery in November and removed cervix, tubes, ovaries, nodes, omentum, and did a pelvic wash. Staging came back IA, yay!

Aftercare with Heffernan was not optimal (he's very 'let's not do anything unless we absolutely have to') so I switched to his partner Munoz. Had 3 rounds of carboplatin/taxol, 25 rounds of external radiation (with Nichols), and today I started my last of 3 chemos. My CA 125 has dropped from 269 to 8.9 and I feel super. I am very pleased with my care.

Who are you seeing?

Liz in Dallas who is crossing her fingers for good news in your direction

lovinglife51
Posts: 9
Joined: Apr 2012

Liz - We only been in Dallas for a year, so I don't have Dr relationships established. I picked up a business card for Dr Brenda Axmann, Gyno and that is who performed the Uterine Biopsy last Friday afternoon. I'm supposed to get my results sometime today so to say I'm nervous is an understatement. I have very good insurance, I know I'm blessed. Only problem is UT Southwestern isn't one of their preferred providers. My insurance prefers Baylor or Presbyterian. I could go to UT Southwestern but then I'd have to get everything preapproved myself...labs, radiology, anesthesia, etc... My mind is such a blur that I don't think I'd stay on top of that the way I should so right now I'm going to use either Baylor or Presbyterian Dallas so there are no preauthorizations required. I haven't chosen a Gyno Onco yet since I'll just be getting my results today. I've research the top in their field and Dallas' Best. If this turns out to be cancer, I'll also ask Dr Axmann for her recommendation and then make a decision.

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

It depends on who you ask I guess. IF (big IF) the test prove that there is something you can see one dr and if it does not click for you go to another one. Always go with what/who is comfortable to you. Second opinions can be done too. What ever Insurance you have should also be able to give you referals to a Gynecological Oncologists as that is what you will want to have is someone that is a specialist in both fields. Makes it easier to go to one dr instead of multiple. I have Aetna insurance I could go anywhere on my group policy through my work. Dr Lea that I went to is certified as both, she did the surgery and all follow up appointments and set the chemo regiment. When my Mom was dX with a soft tissue sarcoma she was at Presbyterian. I live in the south part of Dallas and Presbyterian is far north Dallas so it was a long drive everyday. If we could have had her a Baylor it would have been an easier drive through the middle of downtown. It depends on where you live and how far you want to travel, again IF is necessary for any kind of further Dr visits. Praying for you for nothing serious. trish

pakb56
Posts: 141
Joined: Jan 2012

Hoping for a good outcome with your results. Waiting is terrible and it seems I am alway s waiting for something.

Take care, Pat

light42day
Posts: 61
Joined: Mar 2012

I'm pretty sure that I had a watery discharge and I was diagnosed with endometrial adenocarcinoma (the "good" kind). I really hope you have a positive outcome from your biopsy. Maybe it will come out with no cancer at all! The waiting really is the hardest part. It seems like once you know it's a little easier. Hoping and praying for the best for you!

lkchapman's picture
lkchapman
Posts: 104
Joined: Jan 2011

Yes, I had the watery discharge for a couple of years before my diagnosis. Was told by my gynecologist it was nothing to be worried about, but I became really concerned when I was reading a uterine cancer patient's chart at work (I do medical coding for a major cancer hospital) and she complained of the same symptom. I went straight to my gyno and demanded a biopsy. I was subsequently diagnosed with stage IIIC UPSC. I was only 46 and still having periods but did have the constant watery discharge between cycles. I also suffered from frequent yeast infections, heavy flooding periods, passage of large clots and anemia.
I don't think the discharge in itself is indicative of cancer though, just that something isn't right. I did have a fibroid in addition to the cancer and I believe the discharge can be associated with those also.

Laura in Texas

ccfighter
Posts: 370
Joined: Jan 2012

I had watery discharge for about three months before my diagnosis. I have adenocarcinoma of the cervix.

janh_in_ontario
Posts: 110
Joined: Sep 2010

I have been thinking about you all day - hope you got the results and they were not what you had feared. If they are - you will dig deep and find the courage - it just happens - hang in there!

lovinglife51
Posts: 9
Joined: Apr 2012

The results of my pap smear and uterine biopsy came back normal. However, yesterday my gyno did a vaginal ultrasound, looking at the thickness of my uterine lining and discovered a "mass" in my abdomen next to my right ovary. She drew blood for a CA125 test and it came back elevated at 53. She called me saying that surgery is necessary to determine if it is cancer. Feeling overwhelmed at the moment.

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

Overwhelmed Feeling is normal. It is ok to feel that way. It may be cancer but a CA125 also can be for anything going on in the abdomen area, is what my GynOnc Dr said. When they do the surgery ask for a Gyn Onc Dr to do it so that you might not have to have surgery again. Or at least have one there to do a pre surgery consult. They may know what to look for when a regular Gyn Dr does not. It may be an early stage of cancer which it treatable. Cancer is not a death sentence, there is still and always will be hope for a longer life. Try not to get to overwhelmed. You are in my prayers to get you through this. trisha

lkchapman's picture
lkchapman
Posts: 104
Joined: Jan 2011

My sister had a CA 125 over 600 with an ovarian mass on imaging. When they did surgery they found it was benign. So try not to borrow trouble, an elevated CA125 does not automatically mean cancer.

Laura

lovinglife51
Posts: 9
Joined: Apr 2012

The results of my pap smear and uterine biopsy came back normal. However, yesterday my gyno did a vaginal ultrasound, looking at the thickness of my uterine lining and discovered a "mass" in my abdomen next to my right ovary. She drew blood for a CA125 test and it came back elevated at 53. She called me saying that surgery is necessary to determine if it is cancer. Feeling overwhelmed at the moment.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Some good news and some what I'd say "unknown" news. I had some brownish spotting and vaginal ultrasound found thickening of the uterine wall, so off to D&C to scrape the wall. There they found the 2 small tumors and did biopsy, which turned to cancer. Lastly did complete hysterectomy to see if cancer spread which it did in one lymph node.

My question to you, what type of surgery he suggesting? Did he biopsy the "mass" assuming it's similar to mine as they called it fibroid mass? Biopsy will tell you if it's cancer, but judging by the CA125 it might not be a good reading for you. FYI mine was well over 500. Note, CA125 marker isn't always a good indicator for many of us.

Cancer is overwhelming as I remember having instances of shaking in my boots when my results were told to me. I gathered myself together, realizing I'm useless to get thru this journey unless I'm strong and thinking properly. I relied on my close family and friends for support as no one should have to endure this journey without support.

Ask lots of questions to your doc and staff and plse keep posting here....we're all here to help you. I couldn't have endured all I did without my friends at this site and thru my personal therapy group where I live.

Sending positive vibes all works out in your favor....

Cancer is not a sentence it's a word!!!
Jan

lovinglife51
Posts: 9
Joined: Apr 2012

I have an appt with a Gyno/Oncologist on Wed 5/9. The Onco nurse told me that he will want a CAT scan prior to surgery. Currently my gyno is talking about removing the mass and the one ovary. However, after reading everything I've read...I'm going to encourage a complete hysterectomy. My thinking is...I'm 51, my family is complete, no plan for anymore children. Plus, I've still got this problem with my uterine lining being too thick. I'd rather get it all out and lessen my chances of cancer or (worst case) a reoccurence if it is cancer.

I felt so energetic and completely healthy prior to all of this starting. No pains, no problems. Now it seems as though I have so many aches & pains. **Funny thing is I got a call from my gyno ofc with the results of my routine blood work and I'm healthy as a horse, LOL. Low cholesterol, red cell and white cell count good, etc. I'm sure all these pains are in my head. My stomach hurts all the time, I've lost 7lbs in 2 weeks. I swear that I now feel pressure/pain on my right side (where the mass is). I know this couldn't have all changed in a matter of 2 weeks. I know I'm worried about a lot of stuff. I'm worried that getting a hysterectomy and being forced into menopause without hormones will ruin my sex life with my husband of 30 yrs. And then of course if it is cancer that is a whole new group of things to think about.

Thanks everyone for you information and encouragement. Hugs (Cindy).

Kaleena's picture
Kaleena
Posts: 1055
Joined: Nov 2009

Hi Cindy:

Sorry that you are under all this stress. I know how trying it can be. I am glad to hear that they are doing a CT scan prior to your surgery. It can give them a better pictures. Although a PET scan would be best, most insurance companies will not pay for it until a CT scan is done. A PET scan "lights up" active cancers.

By the way, the aches and pains that you are having can elevate CA125s. Any type of inflammation can change that number.

I would definitely go with a total hysterectomy. I had mine done at age 45. (It was when I was diagnosed). Had everything removed, uteris, tubes, ovaries, omentum, appendix, lymph nodes. I was not allowed to have hormones. It doesn't ruin anything with regard to sex life. In fact, I think it was just the opposite.

Anyway, Cindy, hang in there!

Double Whammy's picture
Double Whammy
Posts: 2274
Joined: Jun 2010

Cindy-
I'm so pleased (and also sorry) you will be seeing a gyecologic oncologist. Having hung around here for 2 years now and also having 3 close personal friends who also had endometrial cancers, it really does make a difference. You will be in well-trained hands and under the care of a typically very smart brain (the years of training are pretty impressive - IMHO only someone with a whole lot of itellectual curiousity would pursue such a rigorous course of post MD training) and experience in whatever might be going on with you. All of your concerns are justified - this is scarey territory. Your good general health will be a big plus for you.

I'm adding my encouragement and well wishes for you!
Suzanne

light42day
Posts: 61
Joined: Mar 2012

Cindy,
I'm also glad that you've decided to go ahead with the surgery. It will give you some peace of mind to get it taken care of. You will feel better afterwards, too. I had constant pain in my lower abdomen before my surgery and now it's totally gone!

Best wishes and prayers for a good outcome and healing!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I also think a total hysterectomy is prudent.

Stay positive and hang in there, you will be OK!

Mary Ann

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I had a complete hysterectomy at age of 52 yrs...and my menopausal symptoms were very, very minimal. When I asked doc, "well where are these symptoms"? He told me consider myself lucky as others seem to slide right thru them. Hoping this is you as well.

I felt healthy as a horse prior to cancer diagnosis, but this crazy devil called "cancer" is sneaky...... has a mind of it's own. Try to take it one day at a time...don't overload your mind with worry. We can only handle one thing before us and right now scheduling surgery and get everything ok'd with docs is your fist step. The next steps will come as you complete the first one, etc.

Hugs,
Jan

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

Hope your CAT scan gives you good results and yout hysterectomy gives you a stage 1 or no cancer at all. Sending you hugs and good wishes. In peace and caring.

lovinglife51
Posts: 9
Joined: Apr 2012

Well...I now have the answers and I'm a very lucky girl, we caught a very aggressive cancer, very early. During my hysterectomy doctors determined that I have Fallopian Tube Cancer, which is very rare. Stage 1a, Grade 3. I 'm recovering really fast after my surgery which was exactly 1 week ago today and I'm off all pain meds and have been doing some extensive walking to gain my strength back before chemo starts. I'll be getting 6 chemo treatments of taxol/carboplatin, 3 weeks apart...starting in a couple of weeks. Thanks to all of you for your support!!! Any tips on dealing with chemo..??

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Stay hydrated
Take laxatives and stool softeners ( hemmorhoids, fistulas, fissures are all complications of constipation you dint want)
Ambien is wonderful
The bad taste in your mouth will be temporary
Hydrocodone is not the only painkiller available
Holler if the chemo hurts... It's not supposed to
Naps are wonderful
Lots of sunscreen - you'll burn faster
Bald is beautiful
Take advantage of the good days

lynnjane62
Posts: 1
Joined: Feb 2013

wow just read your story, ita like your also telling mine,,going thru the exact same thing, and also freaking out.in reference to loveing life.

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