What to expect

Joditd
Joditd Member Posts: 17
edited February 2018 in Uterine Cancer #1

Hello,

i have not been diagnosed with cancer. I am having a saline ultrasound and biopsy on the 13th. I would like to know what to expect, and is this the appropriate testor should I be requesting anything further.  I have been having a couple of strange symptoms for months that I haven’t told my doctor yet. I plan on telling him when I go on the 13th. My history... I had spotting a couple of months ago mid cycle which I had never had before. I called my doctor and left a message with the nurse but never heard back. I figured I would just ask at my next yearly exam or call again if it happened again. Then last month I started my period on the 12th, and on the 6th day, I was at work (I’m a nurse) and I was having to RUN to the bathroom every 30-45 minutes, as I was bleeding through a tampon and two pads.  I was also passing a large amount of large clots. This lasted a few hours and then slowed to my normal heavy. The next day it happened again, so I called my doctor and they had me come in for an ultrasound. The US tech asked me three times if  I was passing clots to which I answered yes each time. She wouldn’t give me any info. After the US the PA said it looked like a polyp and my endometrial lining was very thick (she didn’t give me a number) and my doctor would likely want me to follow up with a saline ultrasound and biopsy.  I don’t know if the spotting is related (but I figure it probably is). i Didn’t mention it. The two other things I didn’t mention are that for months now I’ve had tons of watery discharge. It’s bad enough that I haven’t felt comfortable being intimate with my husband because I always feel gross. I thought it was due to my weighg because I’ve gained a lot of weight in the last year. The other thing I’ve been dealing with is having trouble peeing. It doesn’t hurt. It’s not like HTI symptoms. I just start to pee, it stops and then I have to concentrate to finish peeing. It’s like my bladder doesn’t want to work. I thought that maybe I was just experiencing symptoms of a prolapse possibly since I have five children. Have any of you experienced these things? Do I mention them before he does the saline ultrasound? After? Should I not be worried about them?  I honestly don’t feel good. I’m always tired. But I also work a hard job. When I’m done with work, I’m pretty much spent. Every single one of my symptoms I have brushed off thinking most everything is done to my gaining weight This last year, and maybe it is. Any insights or advice is greatly appreciated.  I am still bleeding by the way.  It finally slowed down yesterday some but up until yesterday I had to make trips to the bathroom every hour or sometimes could go up to two hours. They started me on the pill (microgestin) but it hasn’t helped yet. 

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Comments

  • Joditd
    Joditd Member Posts: 17
    ConnieSW said:

    My only symptom

    was a watery discharge with a distinctive odor. Do mention it. My gyn didn't think it significant but luckily she went ahead and did a Pap smear a couple months early and some atypical cells showed up  

    Good luck. Waiting for the diagnostic workup and results is so hard. 

    Was it like a weird Smell....

    Was it like a weird Smell.... like not sweet and not sweaty but almost a mixture? 

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    My only symptom

    was a watery discharge with a distinctive odor. Do mention it. My gyn didn't think it significant but luckily she went ahead and did a Pap smear a couple months early and some atypical cells showed up  

    Good luck. Waiting for the diagnostic workup and results is so hard. 

  • pinky104
    pinky104 Member Posts: 574
    Insights

    The interruption of the urination sounds just like what I have--a cystocele.  I had a pessary put in but found it much too painful to have taken out and cleaned every 3 months (I never had kids--it might be different with you or with different shapes of pessaries).  Before my cancer surgery, I was coughing or sneezing and then wetting my pants a little.  I went back to the pessary after cancer surgery, put up with it for a few months, and then decided the pain just wasn't worth it.  I no longer have the leakage problem.  At one point, before my surgery, I started getting some irritation from the pessary, and the doctor prescibed Trimo-San cream, which has estrogen in it.  A couple of weeks later, I started bleeding.  I checked out a website I used at work and found that the cream could cause bleeding.  I passed it off as that.  I didn't want to have to go back and get another painful pessary change.  When I went back again in three months, I mentioned it then.  That was how my cancer was found.  The doctor said the dose of the cream I was on wasn't a high enough amount of estrogen to be causing the problem.  He had a tech. do an ultrasound on me.  She saw something and went and got him.  Then I had a transvaginal ultrasound and the doctor identified a big polyp.  He said it would most likely be benign.  I'd had one ten years before that was.  This one wasn't.  I turned out to have stage IVb UPSC.  I also had a watery discharge.  I kept using Monistat thinking it was a yeast infection.  It would get better and worse again.  It actually had a bad, kind of fishy smell.  The doctor never seemed to notice it at my pessary changes, so I thought it was just my imagination.

    I had heavy periods all my life, but they were worse in later years.  I passed a lot of clots and felt silly running to the bathroom at work so frequently (every hour on my worst days).  I wore both a tampax and a pad in case I leaked. 

    As far as the urinary retention goes, I try to sit on the john for a while so I get as much urine as possible out.  I used to work with a woman who had previously worked in a urologist's office.  She told me that keeping urine in the bladder too long just collected more bacteria.  I've found a trick over the years.  I find that if I touch or tickle myself on my tailbone when trying to urinate, more urine comes out.  Sometimes I have to do it mulriple times to get it all out.  I assume I'm stimulating some nerves related to relaxing the bladder.  Try it and see if it works for you.

  • pinky104
    pinky104 Member Posts: 574
    One More Thing

    Most people lose weight with cancer, but I didn't.  My cancer was so extensive that I think the weight gain I had was from the cancer.  They described the cancer in my omentum as being in a cake-like formation. 

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    Joditd said:

    Was it like a weird Smell....

    Was it like a weird Smell.... like not sweet and not sweaty but almost a mixture? 

    I don't know

    how to describe it, especially since it was 6 years ago. It wasn't foul but weird Is a good word. When I first noticed it, I immediately remembered a patient with endometrial cancer I had cared for many years ago.  I couldn't say if it was the same odor but my primal brain must have known. 

  • Joditd
    Joditd Member Posts: 17
    Thank you for the responses.

    Thank you for the responses. I really appreciate it! 

  • saltycandy13
    saltycandy13 Member Posts: 167
    edited February 2018 #8
    doctor explained

    Please ask questions about the saline biopsy.  That is not the true way to diagnosis this cancer.  My oncologist thinks a D/C would be better.

    On a personal note, I had mucus flowing with blood.  Sorry for the TMI, but I KNEW something was wrong.  It was a good indicator that it was cancer.  

    He explained that during a biopsy of the uterus, they can't possibly get the whole thing and it is possible to show a thickened endometrium with polpys or fibroids and then have cancer brewing somewhere else.

    I had pre cancer in one spot and actual cancer in the other.  When my original gyno biopsied my lining, she just took it from the wrong section.  If she had gotten the bad part, I would have been diagnosed with Adenocarcinoma grade 1, right on the spot.  Instead it took a total hysterectomy to find out.

    Other thing: saline biopsy for me just didn't work.  Too painful because my cervix was closed.  They said it was because I never had children.  Personally I don't trust the biopsy process, but if given the choice for accuracy, I think it should be done during a D/C.  This is just my opinion based on what happened to me.

    Good luck!

    Karen

  • Joditd
    Joditd Member Posts: 17
    Was the mucous blood colored?

    Was the mucous blood colored? I appreciate your reply. They never mentioned a D&C but I can ask him. If not, I’m requesting a hysterectomy anyway. I know mybrisk of prolapse is greater, but I don’t want these periods anymore. 

  • saltycandy13
    saltycandy13 Member Posts: 167
    yes

    the mucus had bloody streaks in it and there was so much, I messed myself at the gym.  Went running off the treadmill to the ladies room.  It also happened at home where I ruined a pair of jeans.  I never had this happen before so I knew something in my heart was not right.

    The D/C is more drastic.  But you have to go for surgery for that.  It's a quick surgery.  Takes less than one hour.  I know because I had 3 of them until they found my cancer!  The saline to me is just by looking at the ultrasound and targeting a spot.  Which spot?  Is it the right one?  The accuracy of a D/C biopsy (because the uterine lined is scraped is more accurate) about 90 percent.  At least they came up with Pre cancer.  Little did I know, it was already cancer stage 1 brewing in the background.

    Hopefully all you have are some fibroids or polyps.   Then you can put this behind you.

    Best of luck!

    Karen

  • Joditd
    Joditd Member Posts: 17
    Thank you for all your

    Thank you for all your suggestions and help. Trust me I am going to ask.  I go back and forth with one minute telling myself it will all be ok and the next imagining the worst. Thank you all for being kind and helpful! 

  • ckdgedmom
    ckdgedmom Member Posts: 166
    mention it all

    tell your doctor EVERYTHING...

    I was having the heavy mid-cycle bleeding like you describe---the clots and so much blood...I bled in the hallway at the school I work at (thank goodness the kids were in class)...literally a trail of blood...

    I gained weight and no one could figure out why. I exercise 5-7 days a week doing spin class and yoga and burning more calories than I took in but I continued to gain weight and my primary care doc and endocrinologist could find no explanation (both thought it might be thyroid)

    changes in bowel and bladder habits can indicate disease so please tell your doctor...I did not have those symptoms but my friend with ovarian cancer did...

    there is an excellent chance it will all be ok but leave no stone undturned and give your doctor as much information as you can so he/she can rule out any cancer...

    I have stage4b UPSC...after hysterectomy, chemo, and radiation it looks good for me...my last PET scan was very good and my radiology oncologist was beaming with happiness when he showed it to me...

    there is hope!

    but first you have to know what you are dealing with...

    good luck!!!!

  • Joditd
    Joditd Member Posts: 17
    I will definitely tell him.

    I will definitely tell him.  I had thought about calling, but it's so hard to get in touch with anyone via phone, and I didn't think two weeks would make a huge difference so figured I would just wait.  It wasn't until I started googling that I even realized they could actually be related.  

    I am so glad your scan was good!  You are a warrior, and you ladies will have made a difference in my life regardless of my results, just for being a sounding board and experienced advice.  Thank you all.

  • saltycandy13
    saltycandy13 Member Posts: 167
    absolutely!

    you are welcome.  You couldn't find a better bunch of women on here to be of help and knowledge.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    Push for testing and answers.

    Push for testing and answers.  A D&C has been a good diagnosis tool for all of us.  Take a breath and see what the test results say.  Also, if you called the doctors office and no one called you back?  That is completely unacceptable.  I went off on my radiologist about the staff.  The one nurse was so rude - maybe she was having a bad day - she shouldn't be the one calling back patients then! 

  • Joditd
    Joditd Member Posts: 17
    I called a few months ago

    I called a few months ago when I had mid cycle spotting, because I had never had it before so I wanted to see if it was ok to wait for my yearly check up or if I needed to be seen sooner. The nurse called me and said she would check with the doctor and call back.  I never heard from them, but just let it go.  It had only last a day or two, so I brushed it off and figured I would just bring it up at my yearly.  Then, I started with the ridiculously heavy bleeding with clots (currently day 25 of bleeding - still with some clots, although not as bad).  I did some research when I left the doctor's office after my US, which is when I saw that spotting could be a concern, as well as watery discharge and difficulty urinating.  I didn't call them to ask about those symptoms.  I figure it will be hard to get that across via the telephone, and my work is pretty tough right now.  I am the only nurse in the clinic I work at currently, so getting time off is tough.  I just decided to wait and discuss it with him when I go in.  It is frustrating when they don't call back - even more so, because that is part of my job, I am busy, and I still call people back pretty quickly.  

     

    Woulld you do a D&C before just opting for a hysterectomy?  Part of me just would like to go straight for the hysterectomy.  

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    Have the d&c

    Joditd - have the D&C first.  It your doctor doesn’t insist on a D&C I would look for another doctor.  The D&C lets the doctor know what they are dealing with. This also helps them dtermine the type of hysterectomy (if it is actually cancer), laparoscopy or full abdominal Hysterectomy.  In my case it was classified as stage 1 and I had laparoscopy.  if it had been a different stage or more aggressive cancer he would have opted for abdominal surgery.  You want to get as many tests as needed to give your doctor as much information as possible.  I know it is a pain going through all these tests but they help insure the best output.

  • txtrisha55
    txtrisha55 Member Posts: 693
    Joditd said:

    Thank you for all your

    Thank you for all your suggestions and help. Trust me I am going to ask.  I go back and forth with one minute telling myself it will all be ok and the next imagining the worst. Thank you all for being kind and helpful! 

    Even if it is polyps, I had a

    Even if it is polyps, I had a D&C done in 2004 and they found polyps and everything was ok.  Then in 2011 I was bleeding after menapuase and antoher D&C and had a tumor and more poylps which lead to a total abdominal hystorecomy.  Had I know know what I would go through in 2011 in 2004 I would have done the hystorecomy in 2004 an dpulled everythign out then.  But who is to say that I would not have had another type of cancer.   Good Luck and keep us in the loop. trish

  • Joditd
    Joditd Member Posts: 17
    Ok that makes sense! you have

    Ok that makes sense! you have no idea how much you all are helping me! It’s so overwhelming, and I don’t know much of anything yet, 

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    It is hard to know the right advice

    joditd - it is hard to know what the best advice is.  I was diagnosed on January 2 (the one year in my entire life I didn’t eat pork and sauerkraut for good luck on January 1st and see what happens - cancer diagnosis|-).  

    Another piece of advice - if the hospital tells you a significant other can spend the night after your hysterectomy take them up on it.

  • Joditd
    Joditd Member Posts: 17
    Oh no! I’ve never eaten pork

    Oh no! I’ve never eaten pork or sauerkraut on New Years! I try and remember to eat the black eyes peas, which I did this year!  I will make my hubby or best friend stay with me, if I have it. I had a tubal Ligation After my third child, which failed 7 years later. After a miscarriage, an emergency surgery for ruptured Fallopian tube after it failed a second time, I then had a reversal surgery done. Then I had two c/s with my last two. I remember how uncomfortable I was after the C/S, and I imagine it’s similar.  I hope it isn’t worse!