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TVUS Result 13mm, Scared to Death

Spydergal's picture
Spydergal
Posts: 47
Joined: Jul 2021

 Hi, I am new on here and hoping to find out more about Endometrial Cancer, testing, testing results, questions I should ask doctor, etc, etc. I have spent hours and days researching online and all I can do is cry, Im scared of dying and scared about the pain and side effects like Lymphedema that treatments could cause. I wear a prosthetic so Lymphedema would most likely end my ability to wear it especially since I get open sores from the blisters caused when it's hot out and I sweat in the socket really bad. . I spotted a few times before COVID, I asked a friend from my motorcycle club about the spotting and occasional menstrual cramping and she told me it was nothing, probably fibroids. My gp has done my PAP for years and they were always negative for cervical cancer. I told both gp's that treated me about my spotting and cramps and I was told it was nothing to be concerned about, they didn't feel anything unusual During my test. Well after skipping my PAP due to COVID I decided to get it done by a gynecologist this time rather than my new ARNP. My Gynecologist told me she didn't like how thick my lining felt and she ordered a vaginal sonogram. I found out yesterday that my lining is 13mm which they said is very thick so I have to have a biopsy. I don't know if I'm overreacting and 13mm isn't really that bad or should I be prepared that I definitely have cancer and probably at least stage 2(I hope I'm jumping the gun). My biopsy is scheduled for August 6th, I doubt I'll sleep much waiting. I beat death in 2010 in motorcycle accident. Was Glasgow coma scale 3, PE, on life support 3 weeks, had klebsiella pneumonia and acinetobacter which they quarantined me for. My TBI was so severe I had to relearn how to tell time, add, subtract, multiply, make change with money, two years OT and PT. I was told I would never be able to drive a car again but I proved them wrong. Not only do I drive a car again, despite now being an above knee amputee, I ride a Can Am Spyder and a proud member of The Motor Maids. all that was scary but this cancer is the scariest thing I have ever faced in my entire life. I beat the odds when they were stacked against me in 2010 so I am determined to beat them again. I just hope they give me some fun pain meds, LOL. 

MAbound
Posts: 1153
Joined: Jun 2016

Welcome Spydergal!

Wow! You have been through a lot! I can appreciate how much you so do not want to go through another big medical issue after that, but oh what a strong person you are! You won't have to go through it alone now that you've found this community...there's a lot of experience and empathy here for what you are facing.

Going to a gyn to get accurately diagnosed and referred for the right treatment is absolutely the right first step. Dealing with cancer is a step-by-step process and I'd advise not getting ahead of yourself researching google until you understand exactly what you are facing because there is so much out there that may not apply to you that you can scare yourself silly with. I know it's hard not to look, but you really shouldn't, especially as regards statistics because those are pretty much just gereralities that don't really apply to individuals. Cancer has so many variables that it's better to be laser focused on only what applies to you.

As far as having a biopsy, you'll find that we are not big fans of those here because they can miss cancer when it's actually present. They can also be painful if you've never had children. Hysteroscopy or D & C are a bigger deal for the doctor, but more difinitive for diagnosis and painless for most. I was diagnosed by biopsy, but my lesion was visible through the cervix so the doctor was able to see exactly where to take tissue from and that is rarely the case. There currently is no screening test for uterine cancer like there is for breast or cervical cancer, so that is why PAP smears are useless for detecting uterine cancer.

Until you are definitely diagnosed with cancer, try to just live your life (not so easy...but helpful). If cancer is found, you will initially only know what type of uterine cancer it is and what grade. A grade indicates the degree of mutation that has occured within the tumor sampled on a scale from 1-3. Grade 1 tumors have more normal cells within them and grade 3 tumors are primarily all cancer cells.

The next step would be referral to a gyn oncologist for further testing and surgery. You want that referral, so if it isn't offered, insist on it. Only surgery can tell you what stage you are; anything you are told before that is only a guess and likely to change. Stage tells where cancer cells are found indicating the extent of spread from the point of origin. The grade of the tumor and stage determines what, if any, treatment is needed. Other factors play a role in treatment, but it would be getting ahead ourselves to discuss them now. For now, this is enough to chew on and ask questions about.

Above all else, know that getting a cancer diagnosis is not the death sentence it was once taken to be. The science for treating it and making that treatment tolerable has come a really long way from those days. The experiences your friends and family may have had with it in the past will be quite different from what you might be facing today. You'll find the answers to your concerns and fears a lot more up-to-date here. We'll get you through it each step of the way. Just ask for whatever you need.

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

I'm glad that you're pursuing the cause of your vaginal bleeding with the gynecologist. I've had two D&C/hysteroscopies due to post menopausal bleeding, nine years apart. The first was a benign polyp but the second was cancer. I had the D&Cs because I was not able to tolerate the biopsies. Also, the D&Cs enable the doctor to sample cells more thoroughly than a biopsy, which may miss the spot where a tumor exists. So I'm always in favor of a D&C, although I know that most doctors start with a biopsy.

Most of the time vaginal bleeding is not cancer, but it's always wise to check this out thoroughly. A thickened endometrium is also a concern, although not always a sign of cancer either.

Should you learn that you do have cancer, make sure that you have your surgery done by a gynecological oncologist, not just a gynecologist. Subsequent treatment will depend upon the type and stage of the cancer. Most uterine cancers are the "common" type and. If caught early, may only require surgery.

For now, you might want to see the link What do you wish someone had told you?  that Includes a lot of advice from different members about what to ask your doctor(s) when you first learn you have uterine cancer, should that be necessary.

While cancer treatment is no walk in the park, you've already gone through an extremely difficult recovery from your motorcycle accident. There's no reason to think that a cancer diagnosis and treatment would exceed what you've already dealt with.

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

and welcome.   I like to remind people that 1 in 10 biopsies are positive for cancer, so chances are you don't have cancer.   And if I were you, I would request a hysterectomy so you don't have to worry about it in the future.   Keep in touch and let us know how you are.  Keep busy.  It will take awhile after the biopsy to get your results too.  

Spydergal's picture
Spydergal
Posts: 47
Joined: Jul 2021

Thank you ladies for your kindness and understanding, it is greatly appreciated. A friend of mine once told me to let go and let God. I'm trying to do that but sometimes it's not so easy to do, I am trying though. I will call my gynecologist office and ask to speak with her about skipping a biopsy and doing a hysteroscopy or a D & C. I am scared to have the biopsy because it sounds like it would be an issue for me and hurt like hell. Back when I was still menstruating I was so tight down there that it hurt to put in a super tampon and often it would hurt just being in there. Because I bled so heavily I had no choice but to wear a super tampon along with the thickest maxi pads I could buy and change them out every three to four hours. My cramps were so bad I couldn't go to work or had to leave early and sometimes I passed out. I begged my gynecologist when I was thirty five to do a hysterectomy but she said no. She would not do a hysterectomy on any woman who was in childbearing age and under forty. I wish I had gotten a second opinion, I probably wouldn't have to worry about this type cancer now. 

Harmanygroves's picture
Harmanygroves
Posts: 228
Joined: Jun 2021

You have gotten excellent advice above. The waiting is the hardest part. First, you are already the kind of woman who is not afraid of hard things. You've been through so much, and come out of it. Yes, it's hard. You can get through this.

I was also losing it when I was initially diagnosed, even before. In your current situation, you must wait and get that D & C (my friend Michele advised me to push for a D & C also, btw, as the biopsies are sometimes not possible to even obtain. I had never had babies, and was well past menopause, both conditions that make biopsies harder).

Once you get the procedures done in which they can test your tissue, you will then have answers. Take ONE procedure at a time!

I'm in Oregon, so when I was completely terrified and stressed, I just got some CBD / THC gummies, and took 1/4 to 1/2 at a time. I am not prescribing for you. I am noting that for me, I had to calm down. When I was finally diagnosed, then I was a mess for another several weeks before surgery. I coped by taking some sedatives and using gummies. 

My gyn onc (gynecological oncologist, which you will end up with IF your tissue shows cancer) told me, "Look, you've been through much worse."

And, in fact, I have. I had an emergency laparotomy in 1997 as I was hemhoraging internally from an ectopic (out of "place") pregnancy. The fetus had lodged in my tube. Yep, I've had two of those pregnancies, part of my badass woman warrior history. 

In brief, don't let yourself get wound up. As others have noted, a low percentage of those with fibroids, polyps, thick endometrium end up with cancer. You may end up needing to have some "general maintenance" done to get that thick tissue out, but don't cross the bridge until you come to it. 

If you find yourself stressing nonstop, for sure get ahold of your doctor and see what you can do to get some decent medications so you can calm yourself down. You are going to be in a much better space when you start setting up one appointment at a time and just dealing with it (one at a time!).

I will be watching and caring about you. 

Deb

 

alicia2020
Posts: 162
Joined: Sep 2020

I'm sorry you needed to find us, but I'm so glad you did.

I agree with everything the ladies above have written.

About the only thing I might add is about the hysteroscopy and D & C. I only mention it because of your noting that you have had problems in the past with your vagina being "tight." I don't know if you've ever had children, but the fact that I had not made a huge difference for me. My vagina wasn't a problem, but my cervix. I woke up from the intended hysteroscopy to have my husband inform me, "They didn't do anything." WHAT??? I was furious! All this and spending a whole day at this hospital for nothing??? Yes. 

I had seen the gynecologist only once and let him get away without even examining my vagina & cervix. I said, "Don't you need to do that?" No, he said. Since I hate that whole business as much or more than the next girl, I let it go. Ultrasound showed uterine polyp and small tumor on my left ovary. We knew we had to investigate. And I had said immediately after the ultrasound results, "I'm all in for a hysterectomy. If I'm going to have problems with that stuff, get it all out of me! I've never had any use for it, and certainly don't now!"

So... the problem was my cervix. It was so stenosed from age (65) and no child-bearing that he could not "get in," and "didn't want to hurt me," so he gave up.  I'll never know if by just looking at it prior if he could have determined that or not. I just know that my body went through general anesthesia and that ridiculous day for nothing. The next week I had my hysterectomy. If any of my circumstances apply to you, you might want to ask your GYN about cervical stenosis.

We will all be waiting to hear how things go for you! Please let us know! We hope it's all nothing and you'll be fine!

😎, Alicia 

RainbowRita's picture
RainbowRita
Posts: 49
Joined: May 2021

All of the ladies here have given you great advice. I just want to chime in about Pap smears and biopsies not being all that precise in diagnosing endometrial cancer and to share my experience in that regard. 

I had a significant "post menopausal bleeding” episode out of the blue one day last August and since it was almost time for my annual physical anyway I went to my PCP about it. My mother had endometrial cancer at about the same age as me, so I fully expected the cancer diagnosis. What I didn't expect was the degree of spread. That being said, my PCP did a Pap smear and it came back negative. So Pap smears are not all accurate for diagnosing endometrial cancer. 

Biopsies can also miss cancer if they don't happen to biopsy the area of the uterine lining that has the cancer or can’t get deep enough to get a good sample. In my case, the gynecologist missed a cancerous nodule in the upper part of my vagina that the gyn oncologist spotted when she did her own pelvic exam…sure am glad she did that. And even so, the biopsy that the gyn onc did came back negative for cancer. However, my gyn onc was not convinced it was accurate and felt that the biopsy didn't get a deep enough sample to be accurate. So of course when that "nodule" was checked at the time of my surgery, the pathology report was positive for cancer cells. I went from expecting a simple laparoscopic hysterectomy as an outpatient to a modified radical hysterectomy (started out laproscopic followed by open procedure) with a five day stay in the hospital and a 6 month treatment plan with chemo and radiation because of that vaginal nodule. 

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