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In the Process of Ruling Out Uterine Cancer Going Crazy

GoneCraZy
Posts: 2
Joined: Apr 2019

I'm not sure if I should even be posting as I haven't been diagnosed with cancer and this whole whirlwind has come about in a matter of a few days. 

I don't know who to talk to about this.  I'm terrified of whats coming and then I wish that it was just over and I had an answer. 

This started this past Friday with some spotting after 4 years being post menopausal. I'm 51 and have an 11 year old son at home. 
I tried to not worry about the dark brown spotting; then the next morning, there was even more, red but not bright red, but still wasn't heavy flow.  

I ended up at ER and the doctor on call verified I was definitely bleeding from the vagina (I was unsure since the amount was small and I have had many days where it felt kinda like I had a urinary tract infection.)  Long story short I had a trans vag US done which showed enlarged uterus, both ovaries had follicles??? and with the endometrial lining thickened. I was discharged with a diagnosis of endometrial hyperplasia and the ER doctor sternly saying to get to the gynecologist on Monday because if it wasn't cancer it could turn into cancer. She kind of scared me. I've had a few small clots and what looks like tissue  when I pee. 

uterus  8.8 X 4.3 X 4.2 cm anteverted uterus

several nabothin cyst  within cervix 0.5-0.7 cm 5-7 mm

echogenic calcification lower segment of uterus and cervix

endometrial thickness is 0.7 cm or 7 mm

rt ovary 2.7 X 2.5 X 2.5 cm some follicles noted

lft ovary 3.3 X 2.6 X 2.4 cm some follicles noted 

I was never on any HRT and the last time my hormone levels were checked my Estrogen was low, FSH and LH respectively in somewhat normal ranges, the only weird thing that still bugs me is prolactin at below low normal (1.1)

Today I was able to see the gyn and not much happened other than him telling me stuff I'd already googled the heck out of like when there's post meno. bleeding of any kind; they don't like to see that. 

So now they're scheduling me for an endometrial biopsy to be done outpatient at the hospital because he said it would be painful =/  IDK why I'm posting this.  Its kind of stupid.  I did wonder why they didn't order any labs for cancer markers since the 1st hour of my appointment was spent going over all my family that has passed or family that survived  due to cancer. Breast cancer is prevelant on both sides, colon on my mom's side  and my mom had lung cancer and wasn't diagnosed until she was Stage IV and she passed only a few months later January 2016.  Shoot this is making me sad.  

I guess maybe I thought some of you who have been down this road could shed some light on what's going on?  What do I do?  

 

Thank you and I'm sorry for the long ramble.Undecided

zsazsa1
Posts: 344
Joined: Oct 2018

I'm sorry you are going through this, but you have come to the right place.  Endometrial biopsies are painful, but not enough in my opinion that they cannot be done in the GYN's office, with no anesthesia at all.  It's very brief.  Perhaps you're instead going to have a D&C?

I had testing done for cancer genetics as I was being diagnosed.  Nothing came up, but I still had an aggressive and rare form of uterine cancer.  Still, I think that having the genetics done is a good idea.  I don't know where you live, but from what I understood, my insurance here in the US would only cover the genetic testing if I had NOT yet been diagnosed with cancer.  So maybe you'd better call your GYN tomorrow to ask about it.  It might be useful information for you and your family.

It may not be cancer.  If it is, most uterine cancer is of a type that is often contained to the uterus, not very aggressive, often cured by hysterectomy alone.  Hang in there.  I know the waiting is very stressful, but the odds are definitely in your favor.

 

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

In my humble opinion endometrial biopsies rarely get enough tissue to get a definitive diagnosis therefore delay getting to the real problem by weeks and yes hurt like hell. Perhaps you could get the doctor to skip the biopsy and move on to a D& C which would give more definitive answers. My opinion based on my experience. 

Donna Faye's picture
Donna Faye
Posts: 255
Joined: Jan 2017

You are welcome to come here and tell us how you feel and we will help all we can. Sometimes it is easier to talk to us than the people who love you and you want to protect. I am a 3 time cancer survivor - first time was 25 years ago, then 2017 and 2018, but I am still kicking. So, you are doing everything right...the waiting to know is always the worst part, but just try and stay busy and don't go through all the "what if" list. With a 11 year old son, it is worse, but once you know you can begin to take whatever action is needed or NOT - you may be fine and what a relief you will feel. I know how you feel but don't go crazy just yet!  All of us are pulling for a good report. PS I'm 79, a mother and grandmother.

SF73
Posts: 276
Joined: Oct 2017

My daughter is about to turn 13 so I know the extra worrying that comes with having a young kid when dealing with such worries. I am so sorry that you are experiencing this. Please be diligent and make sure to get everythig done to rule out cancer. I was not menopausal at the time of the diagnosis (age 44) and both my PCP and obgyn thought the spotting was caused by my two large fibroids. Lost some time because of their dismissals. I think I went along with it because the alternative sounded too scary. Please please be your own advocate. If there is a history of colon cancer in your family, I would also recommend getting tested for Lynch Syndrome. Let us know how the biopsy goes. Best of luck!

GoneCraZy
Posts: 2
Joined: Apr 2019

I guess I should've checked this earlier. Insomnia is worse than normal lately.  I have had another person that I know mention doing the D and C versus the biopsy...I will definitely call the gyn in the morning.   I live in the US and I will make sure to check on the insurance rules cuz I know they can be tricky.  I feel very much like a just got a hug from you ladies.Kiss  2 of my 4 sisters that I told this to have gone into hiding now.  I guess we all miss my mom and the C word is very "touchy" around family still. I really appreciate you're replies and advice and I pray for each of you that have or are currently going through this. I did read the odds are good with this particular cancer. Not that it isn't still scary as heck.  You all inspire me.  You're so strong and kind. God bless you!!!! 

zsazsa1
Posts: 344
Joined: Oct 2018

The reason I asked if you lived in the US, was because here there is no waiting line for procedures.

It doesn't make sense to go to an OR to have an endometrial biopsy done under anesthesia.  I had mine done in the doctor's office right after the ultrasound showed a widened endometrial stripe.  It hurts, but no anesthesia was necessary.  The unfortunate results were back in a day or two.  If it says no cancer, you still would need a D&C, because a biopsy could miss it.  But if it says yes, you've got your answer, and you schedule the hysterectomy.  So find out what the GYN has planned.

With your family history, frankly, I'd have the hysterectomy anyway, if you can get insurance to cover it.  Every woman here wishes we'd had one earlier, before we wound up in this position.  And I remember that my insurance would cover cancer testing more easily BEFORE I was diagnosed - I guess they figured it would not change my management once I was diagnosed, so why pay for it then.  So you could miss a window of opportunity if you don't get it done right away.

The lifetime risk of GYN cancer is about 5% - about 3% uterine, 1.5 % ovarian, and 0.5% cervical.  With a one in 20 chance, and you already being in menopause, I know what I would choose!

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