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New problem

Kazenmax's picture
Kazenmax
Posts: 355
Joined: Feb 2016

Hi all,

I have been a member of the colorectal cancer board and now I have a situation that may be uterine cancer. I’m 66.

2016 - dx with rectal cancer. Had radiation/chemo until a fistual and had to stop. APR surgery to remove part of colon, rectum, anus and sphincter resulting in permanent colonostomy. 

2018 - dx with lung nodules from rectal cancer. Had surgery to remove 1/3 left lung. 6 months of chemo.

Both times no lymph node involvement. Clear scans since then. Funny thing, in all the scans that I’ve had, the radiologist assumes that I’ve had a hysterectomy because they don’t see the uterus. Gyn said normal for my age as it shrinks.

July this year I had light spotting. I immediately got to gyn and she ordered a transvaginal scan. That came back normal.

Still spotting so did a uterine biopsy. There was scant endometrium cells but no cancer.

Gyn is sending me to gyn oncologist to follow up. I’m not spotting so much as now I have a constant discharge. It’s watery with mucus stuff And it’s getting worse.

So I‘m scared that the rectal cancer has spread Or a new cancer.

So I guess Im asking if this sounds like cancer to you all. Did you have symptoms like this? I am hoping they find an infection or something. I see the doctor next Tuesday. can you suggest any questions? What can I expect?

thanks for any help.

k

MAbound
Posts: 871
Joined: Jun 2016

Hi k,

oh wow! You sure have been through a lot already. It just doesn't seem fair that you have something new to be concerned about, but I'll say that your doctors have you on the right track.

Vaginal discharge post-menopause is not normal and you'd need to be more concerned if they dismissed it based on your ultrasound and biopsy results. Both of those can miss cancer, so going to a gyn-oncologist should get you the definitive answer you are needing. It's going to involve more testing and more waiting...I think you know the drill from your other experiences. 

You're first encounter with your gyn-oncologist will involve a pelvic exam as well as getting your history taken. It's a good idea to take someone with you to be a second set of ears and take notes for you because it's hard to retain everything that gets discussed when you are anxious. Most doctors who refer you will send your records over, but I've always taken copies of my records to such appointments with me just in case there is a snafu. That happened to me when I went to my radiation oncologist for the first time and he was really happy with me for having brought what he needed.

This is a one-step-at-a-time process, so try to resist Dr. Google trying to guess quicker what is going on. There's a lot of scary, out-dated stuff on the internet and it just doesn't pay to look things up until you know exactly what it is you are dealing with. It might not be what you think, but it's something. The waiting and axiety is so hard, but you have to know that already. I wish I could tell it was otherwise, but it isn't. 

I'm glad you found us, it's a really good group, but I wish it were for something else. Just let us know what you need as you need it. Hang in there!

 

Anonymous user (not verified)

I really hope and pray it's a false alarm.  No way would I scare you but I will tell you what happened to me....

I had spotting and mucus.  I was already 58 and post menopausal so I knew something was up.

I had a transvaginal ultrasound (aren't they fun?)Foot in Mouth  and first they said they saw polyps and not to worry.  Then it went to pathology.  I had adenocarcinoma which is a cancer that starts in the lining of the endometrium and it is messy because the blood was watered down with streaked clear mucus.

Hysterectomy asap.  Lost all the lady parts.  they have to separate the bladder from the uterus.  In the past 6 months, I have had bloody urine so I freaked out (yes again) and went to a urologist.  tons of tests and nothing.  so I think it's because I'm a runner and referred to sports medicine.

Personally, I would not blow it off.  Get to a gynocological oncologist.  That's what I did.  If you need a hysterectomy definitely go.  they do it robotically now.  It's not so bad.  Please don't wait to let them tell you what they told me.

On the same token, I hope and pray it's nothing!

Kazenmax's picture
Kazenmax
Posts: 355
Joined: Feb 2016

thanks for the response. So if  is cancer, will a hysterectomy resolve the issue or did you do chemo afterwards. I really think that’s my biggest concern. I’ve been through three rounds of chemo and I really want to be done. The last one ended just 6 months ago. Ugh.

thanks

k

cmb's picture
cmb
Posts: 376
Joined: Jan 2018

About a year after menopause, I did start having post-menopausal bleeding. I had a D&C/hysteroscopy where the gynecologist found a benign polyp. This was removed and the bleeding and discharge stopped.

Nine years later I started having vaginal bleeding again. This time I wasn't so lucky and was diagnosed with uterine carcinosarcoma – a rare form of uterine cancer. Surgery was followed by chemo and radiation.

So while many women have post-menopausal bleeding due to polyps or other conditions, cancer can't be ruled out until a D&C/hysteroscopy is done. Therefore, despite your ultrasound and biopsy not indicating cancer, I suspect that the gynecological oncologist will want to move forward with a D&C/hysteroscopy after your appointment next week.

MAbound has some good suggestions to prepare for your visit with the doctor, especially regarding the copies of your medical records. Given your past cancer history and treatments, this information could impact the doctor's next steps.

If this does turn out to be the "common" endometrial cancer and not related to the rectal cancer, many cases are cured with surgery alone, if they are caught early. The more rare types (e.g., clear-cell, serous, uterine carsinosarsoma) usually require both chemo and radiation, even in early stages.

Given your past cancer history I'm sure you are even more anxious than others might be right now. But keep in mind that most cases of post menopausal bleeding aren't caused by cancer and, if there is cancer, 90% are the common endometrial type.

Remember that most of us who post regularly on this board have later stage or more rare types of uterine cancer. Those with the common type of endometrial cancer don't tend to post once surgery resolves their problem. So those of us left here will always tend to worry more about "worst case," based on our own experience.

Please come back and let us know what happens next. We're here to support you as needed, although I dearly hope that the cause of your bleeding turns out to be something benign.

SF73
Posts: 276
Joined: Oct 2017

I am so sorry that you are going through this after what you have already endured. My non-expert opinion is uterine would be a very unusual place for the rectal cancer to recur. I am not sure of the statistics but you can research common recurrence sites for rectal and colon cancer and find out for yourself. It is possible that this is a distinct problem. Please do not be scared and do not stop until you find an answer. Even if it is cancer it may be caught very very early. BTW have you been checked for Lynch Syndrome? Best of luck!

Kazenmax's picture
Kazenmax
Posts: 355
Joined: Feb 2016

If I have been tested for Lynch. I see my regular oncologist at the end of the month. I will ask the .

thanks

k

janaes
Posts: 772
Joined: May 2016

Hi welcome, hopefully your situation is a false alarm i really hope it is. I understand a little about your situation about not wanting chemo again. I have had to do chemo twice for two different cancer. They were not close timewise. There was about 20 years between the two. Uterine cancer came second and i will tell you chemo was the last thing i wanted to do again. I did did it and i survived but it was tuff thinking about doing that chemo.

I really hope you dont have cancer this time and even some peple who get this cancer dont do chemo. Unfortunatly i did but it saved my life again.  

Take one day at a time cause your not sure. Its hard I know but that the way to go.

Good luck

Janae

zsazsa1
Posts: 343
Joined: Oct 2018

I had clear discharge for a year, and was reassured by my GYN that there was nothing to worry about until there was blood.  Turned out I had uterine papillary serous carcinoma mixed with clear cell carcinoma.  I went undiagnosed for a year.

If they can do a hysterectomy on you, it might be the best thing.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

K, it is understandable why you would automatically think cancer.  You have been through a lot.  MA and cmb have some good advice there.  I am glad to hear that you were turned over to a gyn onc - that is who you want to work with to figure out what is going on.

pato58's picture
pato58
Posts: 102
Joined: Jun 2018

Your symptoms, "a constant discharge. It’s watery with mucus stuff" are giving me pause, as I experienced the same.
What kind of uterine biopsy did you have?
Hugs to you!

Kazenmax's picture
Kazenmax
Posts: 355
Joined: Feb 2016

I didn’t know that there was different kinds of biopsies. This one was done in the office. My doc said she went thru the cervix and scraped the uterus. She scraped 3 times and got a scant sample for testing. It came back as normal endometrial cells. She said that it may be that she missed cancer cells. That’s why she referred me to the Gyn onc.

i go on Tuesday. Thanks everyone for the info. I will report back what’s next.

k

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

K, my gyn couldn't do the endometrial biopsy like the one you had and sent me for a D&C.  That really gets a lot of the tissue for testing.  I wouldn't be surprised if that was the first course of action, but please let us know.  

Anonymous user (not verified)

I just had to chime in.

Best wishes and hopes for you.

The D/C, believe it or not, is not that accurate.  When I had that done, I remember waking up and the doctor saying that I had polyps but of course, they were going to pathology.  What I found out from my Oncologist, is that even though they "scrape" the uterine lining, they DON'T scrape the WHOLE lining.  This is a big argument I had because where she took the samples, they said that they found polyps but were not worried.

The cancerous part was in another area of the uterus!Yell  So what if they miss something?  Not good.  You must ask these questions going in because they are too easily blown off.  It's just like a hemocult smear for fecal blood.  Maybe the sample you take yourself, doesn't contain blood in the stool, but there is blood in another part of the stool..

 

I'm on the war path with this because they are just too easily thrown off.  I had 3 D/C's before they found the cancer.  and they put me through Hell with it.  Mucus I was told came from the cervix because we have cysts in there and that was "normal."  baloney!  The mucus was coming from the uterus and that's where the cancer was.

 

sorry for the rant.  I just want women to know that we are not going to just forget it.  Be pro-active with this!

Kazenmax's picture
Kazenmax
Posts: 355
Joined: Feb 2016

 I appreciate your rant! I thought they scraped the entire thing!

Well it’s very strange. All my CT scan reports say either Uterus is post hysterectomy or uterus is difficult to delineate. I spoke with my oncologist and he checked with the radiologist. they took another look at the scan images and said oh yea... it’s there but tiny. It measured like 1/4 the normal size. 

Now that I have an appointment with another oncologist, radiology is reviewing the last scan (transvaginal). The office called yesterday to get some history.... they asked if I was ever pregnant. I had 2 miscarriages and 1 full term. 

So now I wonde how I can have uterine cancer with such a small uterus?

The wait until Tuesday is killing me! I’m so anxious I can’t breathe.

k

Anonymous user (not verified)

I have never been pregnant and mine was small too. Unusually small and one ovary was larger than the other.  They told me one ovary had shrunk in size.  I don't think it matters how small the organ is.  

Try and stay calm, I know it's hard to do, but don't let your nerves get the best of you.  Those tests are enough to drive someone nuts.  I got so many opinions, my head was spinning.  In the end, after hysterectomy, I knew where I stood and so glad I got rid of all the lady parts.

Kazenmax's picture
Kazenmax
Posts: 355
Joined: Feb 2016

So the doctor said the bleeding is from my original surgery where they repaired my vagina. Scar tissue that is irritated. It should go away on its own. Everything else is normal. Thank God! I see him again in 3 months.

He said if it becomes a bother, he can cauterize it and do  d&c at the same time. But he feels like there's no cancer concern. Whew I can breathe again.

Thank you all for your support and good luck to you all.

K

Forherself's picture
Forherself
Posts: 223
Joined: Jan 2019

Thank you for sharing your news.  We are always waiting with you.   So this is good to heaar.  Best wishes.

Feelingalone74
Posts: 236
Joined: Jun 2019

Kazenmax , that's great news!!! What a breath of fresh air for you!

Wishing you continued good health!

MAbound
Posts: 871
Joined: Jun 2016

I'd say that you've been through enough already and really deserved some good news! I don't know how it is over on the other boards, but good news really fuels our mojo here and keeps us coming back! ;-) Thanks for keeping us in the loop. 

cmb's picture
cmb
Posts: 376
Joined: Jan 2018

I'm very glad to hear that there is no cause for a cancer concern right now and that you'll be rechecked in 3 months for possible action at that time if necessary. I hope that you continue to enjoy your NED status from now on. 

Anonymous user (not verified)

Laughing  so happy for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  now you can go on with your life.  God bless!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1552
Joined: Jun 2015

Awesome! May you dance with NED forever!

Love and Hugs,

Cindi

janaes
Posts: 772
Joined: May 2016

Im glad you dont have to deal with cancer again. Yay no more chemo for you!!!

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

with a happy ending. 

SF73
Posts: 276
Joined: Oct 2017

How wonderful, Karenmax! So happy for you!

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

So happy for you and your great news!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

K, so glad to hear your good news.  Continued health.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

What I would say was my first sign was a watery discharge and then barely tinged with blood.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

mine, too and I spread the word at any opportunity. Even my GYN didn't recognize the possibility. 

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