Gynecologic Cancer/Fear: Uterine/Endometrial/Ovarian/Fallopian
Hello all,
I'm knmtwins, part of July 2014 chemo sisters and Triple Positive. I am NED for my breast cancer, but now have a new primary. I had some spotting in Feb, saw Gyn and had an in office biopsy (ouch), he called with pathology, Serous Carcinoma, saw a Gynecological Oncologist 2/21/19, had a total daVinci laproscopic hysterectomy with BSO, bilateral salpingo-oophorectomy (fallopian tubes and ovaries) on 3/6/19, got pathology confirmation and staging (1A Uterine Serous Carcinoma) on 3/15/19, saw my old oncologist on 3/21/19, got a port on 3/22/19 and start TAXOL and CARBOPLATiN every 3 weeks, for 6 cycles, on 3/27/19 and then brachy rads. It seems, although stage 1A, Serous is a highly aggressive cancer which they treat like ovarian cancer. SCARY!! I'm trying to remember what I will need for chemo again and get the house ready and food cooked, which is a problem because I can't lift over 5 lbs, or do housework or laundry, because I'm recovering from both surgeries. All I can do is laugh about it and be thankful my kids are now 11 and 15, so hopefully we won't starve. Did I mention my husband works nights and sleeps all day, yep, that is why I'm hoping the kids can do some things. I wonder if I can join March 2019 chemo sisters??? I think I'll ask the Mods. Anyone else out there???
Comments
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I am responding even though I don't have a gyn cancer dx. I do however, share the misfortune of two primary cancers and feeling absolutely stunned by yet another cancer dx and the fatigue and trauma caused by treatment. Big but gentle hugs.
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Hi Wised, was your second primary breast? Thanks for the 'gentle' hugs, sore tummy and port ouch right now. Sorry we are in the same boat.
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Hi,
I'm a little nervous as I have to have a biopsy done. I had triple negative breast cancer in 2009/2010 with bilateral mastectomy, Adriamycin, Cytoxan and Taxol. Started bleeding for 2 weeks in Feb, got appt and doc wanted ultrasound in March. Had a left ovary cyst so doc wanted ultrasound follow up in April. They just called and said cyst is gone but uterine lining is thicker than they would like to see. I also had a heavy discharge. I'm hoping it's nothing but a little worried. Anybody had the biopsy part done? They said it's a in the office procedure.
Thanks!!
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Hello knmtwins,You have so much happening. I want to say hello and let you know I'm wishing you wellness.
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Hi kell414240,
I too am Triple Negative. Have not had any gynecological biopsies before. Please keep us updated.
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Thank you!!
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Kell,
Uterine biopsy is tad bit stronger than pap smear. Similar drill I mean. They don't even give you any pain meds and I did not need any. You may be sore for a day or two. Please let us know.
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KELL414240 I had a couple of uterine biopsies one which included a cervical biopsy done in office and one in OR. Both came back negative both very easy. Prior to the 2 biopsies I had a PET where my endometrium lite up. In the end 6 months after the two biopsies I had a total hysterectomy and final path was pre-cancer in endometrium and the 1 fallopian tube I had left to remove. Hope it all goes well for you.
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Hey Guys,
Thanks for the info. Biopsy wasn't too bad at all. It came back benign but the report says follow up treatment needed. Doc called and wants me to come in to discuss. I have appt May 21st. Wonder what that's about.....
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Kell - hope all goes well with that appointment. I was in chemo yuck land and am way behind on my email... ok on everything
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I received my report which shows benign but there is hyperplasia simple without atypica which is great news!! But, GYN gave me three options, take progesterone, get an IUD with progestin, or a complete hysterectomy which she says is way overkill. Even though I am triple negative, I was told by my first oncologist(who passed away due to a drunk driver which is why I don't see him anymore) to not take any hormones ever. Even when I was doing chemo, and it through me into to menopause something terrible, he would only give Effexor to try to help. My regular doctor said no hormones either. So I'm concerned about taking any hormones as I don't want to wake a sleeping giant in my body. I have a call in for my current oncologist to get her thoughts. I also have a friend who's brother is a GYN in another state and she is going to ask his opinion.
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And thank you all for your responses and wishes from earlier. I hope you are doing very well!!
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Do you intend to be on ovary suppressing drugs forever? If so, why not just remove them and every thing else, as they might become cancer some day. Mind you, it is a serious surgery, takes a long time to recover, hurts a bunch (less than double mastectomy with tissue expanders) Uterine cancer and ovarian cancer do not have screening tests. I wish I'd been offered to get rid of them years ago. But again, it is a SERIOUS surgery and all surgeries have the chance of death.
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Hi
I am not on any suppressors as I am triple negative. Oncologist office called and wants me to come in so we will see what she says. Again, the waiting game:(
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knmtwins- I too have had spotting. I had my yearly pap & exam on 5/20. OB/GYN said I looked very inflamed in there, at cervix. She took pap (bloody), and multiple cultures to test for infections. At internal she pressed on cervix asking if I felt any pain; none. She showed me her gloved hand, bloody as well.
All cultures came back negative, which is great. Except if she had found something to treat I'd almost feel better. Now I'm scheduled for an internal ultrasound on Tuesday.
I foresee biopsies and more than likely a hysterectomy. I know I'm jumping to conclusions, but how can I not. I know she's looking for cancer.
My heart goes out to you.
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Cindy,
Sending hugs and prayers your way!! I'm sorry you are going through this. Keep us posted!!
Kelly
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Kelly - thank you! I had the ultrasounds yesterday, and I got the results today around 3. I have no infections, and no signs of cancer or abnormal cells.
But with bleeding, pink tinge on wiping after sex, she recommends cryotherapy. Freezing the cervix, letting it shed the cells and regenerate new ones. The hope is that the new cells won't be intolerant of intercourse & my spotting will stop.
I'm not looking forward to the procedure, but hell - I've had BC, LX w reexcision & rads. I'll survive. It's an in office procedure 6/17, take Advil for cramping before it, and I'll probably need some panty liners.
I'll continue tracking this group. Hoping you get some answers too.
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Hey CindyNY,
I hope they get you straightened out. It's not fair to have this too. I saw oncologist today and now they either want to do partial with ovary removal or complete. I'm on the fence as I don't want to follow up with ultrasounds and possible biopsies.
Take care!!
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Kell414240- its been a while, I've had this subject in my fav and havent seen anything from you.
I survived cryotherapy. I moaned like I was giving birth, had a hot flash that was the worst ever - OB said it was probably nervous response - I was drenched in sweat. When I got home, after I peeled off my damp clothes, I slept for 3.5 hours. So far so good.
I hope you're doing well.
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You certainly have all the technical information. I am a former nurse with positive breast cancer, in remission now for four years. Your post interested in me because lately I’ve been having cramps, and wetness which the doctor calls a discharge, And they are suggesting I have fibroids and want to do a hysteroscopy And I guess take a biopsy. But I’ve been on tamoxifen now for almost a year and a half after a horrific experience with Exemestane & Aromisan. I was wondering if my situation is more severe and perhaps I have some kind of endometrial cancer because it’s very abnormal to have these kinds of cramps and fibroids seems too simple a diagnosis.
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I am so sorry to hear about this situation. I’m hoping I don’t have two cancers but it’s Possible. I never knew that I should not take Benadryl and I recently found out that it blocks the Tamoxifen. I’m thinking an MRI or a pet scan because at least I won’t have somebody shoving something up my cervix, Which I know is tight because I’ve never had any children. Always the risk of infection. What type of chemotherapy were you on or are you on it now?
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Kristen32259, we welcome you to our community . Thank you for sharing your experiences with us. We really hope you can get some answers to what's going on. Do you have an appointment with your medical oncologist?
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Kristen - I took Tamoxifen for 5 years. I also have allergies and Benadryl has always been my med of choice to control them but I just happened to check the pills that don’t interact with Tamoxifen and unfortunately Benadryl was one of them. I’mkind of paranoid about drug interaction which is why I checked plus I typically ask my pharmacist when in doubt. It was a bummer for me because none of the other allergy medicines worked as well.
Diane
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Hi Guys,
After meeting with the oncologist, she said taking progesterone was definitely off the table. She said she would not do the Mirena but said I could if I wanted. After talking with the Gynecologist, they determined a better solution might be to have just the ovaries and tubes removed. I had surgery a couple of weeks ago. I had the ovaries and tubes removed but left the uterus. My goal was to avoid being out of work for 4-6 weeks. The thought is that without the sporadic release of estrogen and since I am not producing progestin which was creating the imbalance, that the hyperplasia would go away. I had a little bleeding after the surgery but nothing since. The plan is to monitor and if I bleed more than once to go back in. The surgery itself was pretty easy. I had it on Wed and went back to work on Monday so that was good. It was out of an abundance of caution to do this. I have never been on any hormone suppression drugs as with Triple Negative, there was no reason as the cancer was not hormone receptor positive. I had the BRAC test and Bart test several years ago and have no cancer genes at all. Literally, there is no type of cancer in my family.
It stinks that we all have these things to worry about after having breast cancer. Praying for you all for healing, comfort and peace of mind!!
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Hi all,
Just came across this thread and thought I'd post about my own situation.
About a year ago I saw the GYN for spotting between periods which were pretty much regular at the time. Found out I had a uterine polyp and several large fibroids plus a case of bacterial vaginosis. A course of steroids seemed to fix me up.
Then in November came the BC dx with chemo in January which apparently threw me into menopause. Nevertheless, spotting began again which I attributed to the chemo for no good reason.
Once surgery, chemo, and radiation were done I decided to see the GYN again about the spotting which had never stopped, happening pretty much daily but not heavy.
Had another uterine ultrasound showing the same fibroids which had grown. Not expected for someone who was menopausal due to chemo or naturally given the hormone production was supposed to have stopped. Cancer? Who knows. GYN did not really rule it out but didn't order a biopsy. He did offer a similar range of options such as low-dose birth control pill (I'm 52, so no thank you), leaving it alone meaning letting it grow some more, or having a hysterectomy. I've chosen hysterectomy, now scheduled for 9/10, the same date I'd scheduled my port to be removed.
I'm going back and forth about this decision. My dad is a retired GYN, and he said he would have encouraged a patient with my history to just wait it out because fibroids basically shrivel up and die once the hormone production completely stops. He concedes he was always a pretty conservative surgeon believing all surgeries have risks, some fairly serious ones. He's definitely right.
But I don't need those things anymore (uterus, ovaries, tubes) so they're just sitting there waiting to get cancer, right? And who knows how long it'll take before the fibroids go away on their own? Besides, the spotting and general ickiness it causes is cramping my sex life!! (Couldn't really tell Dad about that part even though I'm a happily married woman! Lol!) And again, what if it's already cancer??? One more good reason to have it now is that I've met all my deductibles for the year so the whole thing would be free!!!
On the other hand, it's another surgery, another three cuts into my body, recovery, disruption...
Oh well, looks like I'm not alone in this, and I am very grateful to see how you all are getting through it. I like to be prepared. I like to have a plan. Well, you know what they say about plans...
Thanks for your listening and, in advance, for any perspective you might share.
Anne
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Kell414240- thanks for updating. I'm glad you got through your surgery. Best wishes going forward.
PiperKay- Anne as long as you're comfortable with your decision to have the hysterectomy, you do what's best for you. I don't want to second guess you.
You've still got time before your scheduled surgery for others to give some input.
When I thought I might need a hysterectomy, I had similar thoughts - take it all out, I don't need it; I could never get pregnant, so they've never done me any favors. But the flip side was thoughts of a painful recovery and the fear of another surgery. Best wishes to you on whatever you decide, keep us posted.
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