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Adenomyosis link to Endometrial Adenocarcinoma - anybody else shares this experience?

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

Hello Ladies, I don't post too often, but have been looking at risk factors for type 2 endometrial carcinoma in the hopes of raising awareness among my friends and family about this terrible disease. I developed a condition called Adenomyosis about 5 years ago, it causes extremely heavy periods, my family doctor ordered ultrasounds and diagnosed me with atrophic/adenomyotic uterus, but told me there was no need to do anything about it, that it was a benign condition what would resolve itself at menopause. I have learned that, while atrophic endometrium (adenomyosis) is considered benign, a large percentage of type 2 endometrial carcinomas develop in atrophic/adenomyotic uterus. I was diagnosed with UPSC last year (May), had a radical hysterectomy in June, and have been OK since then, but I wonder how many ladies complain to their doctors about endometrial related symtoms that are missed due to other conditions, such as mine.

I include a couple of links below on the correlation between adenomyosis in hysterectomy specimens with type 2 endometial carcinoma: 

"In contrast to the findings in uteri removed for endometrioid (type 1) carcinoma, the uninvolved endometrium in uteri containing serous carcinoma (type 2) is usually atrophic. In one study, 76% of serous carcinomas were associated with atrophy and 5% with hyperplasia, whereas 29% of endometrioid carcinomas were associated with atrophy and 46% with hyperplasia." http://www.nature.com/modpathol/journal/v13/n3/full/3880051a.html

 "Adenomyosis is commonly seen in hysterectomy specimens for endometrial adenocarcinoma " http://www.spandidos-publications.com/10.3892/or.2012.2184

I have learned that a few relatives of mine had earlier life (early 30's) hysterectomies as a result of the same condition, so it must run in families. I wish my doctor had suggested that to me too. Not all atrophic endometrium develop cancer, but a majority of those who develop type 2 carcinoma are atrophic. As an unscientific survey here, I wonder, did any of the ladies in this forum experience adenomyosis in the years before cancer diagnosis? 

Hoping you are all doing well, and keeping the faith.

Lucy 

molimoli
Posts: 514
Joined: Aug 2014

Interesting how many things we don't know about our cancers I hope some one can relate to this post  and reply. we all need the education.

Sorry they seem to have missed being vigilant with you . I wish you the best outcome  and NED soon.

Moli-Nuff Love

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

Moli, thank you for your kind comments, your posts are always so genuine and uplifting. I am always inspired by your strenght and spunk.

Lucy 

molimoli
Posts: 514
Joined: Aug 2014

out of each other, a barrel of blessings we are to each other.We need us.

To address strength and or spunk: yesterday's description and discussion about what they plan to do in my open abdomen knocked the ....(curse word ) strength and spunk right out of me, for the entire day.Have any of you ever gotten that oops!! feeling that you may have bitten off more than you can chew? I got it,yesterday, yup! I stumbled.My doctors kept marveling at my strength while at the said moment all I was wishing is to be out of their explaining sight , find a quiet corner to just sit and close my eyes ,tight,tight,tight, not till I die or anything like that but 'till I clear the surgical image that was just plastered over my brain,thats all.

The only thing good about yesterday was that all my pre surgery test (and they were intensive) were excellent,deeming me fit for the butchers and their scalpel on the 13th. Butchers they are but I love their honesty and their confidence in their ability to make the best of my bad situation.

I got my groove back this morning after a good night's  sleep.My page is blank today, I am alive, happy and able to partake in decisions ,pleasant and unpleasant ones, a new chapter begins Que Sara -Sara.

Moli-Telling on myself that reality ruled and had its way with  me yesterday.

Nuff love and NED blessings to you all my can't do without sisters. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1535
Joined: Jun 2015

Moli - you are strong. Yep. And, you have a wonderful team of doctors working with you and for you.

I know you are going to come out the other side of this tumor free. It's your time. You fought long and hard for this.

Plus, you have that stringy thingy to experiment with!!!!

Love and Hugs to you my friend!

Cindi

molimoli
Posts: 514
Joined: Aug 2014

in my brain.Yes experiment must go on.LOL.

Thanks for the mental boost your post delivered to me, needed that more than you know.

Moli- still visualising butt floss.DWL.

CheeseQueen57's picture
CheeseQueen57
Posts: 804
Joined: Feb 2016

i always had very heavy periods but was not diagnosed with this. However, I went into early menopause at age 39. My mother had a hysterectomy in her 40s due to "fibroids". Both my grandmothers had an excessive amount of pregnancies and died in their 90s. No aunts on father's side and only 2 aunts on mother's side. But lots of colon cancer. 

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

Thank you for your reply CheeseQueen. Interesting that you mention about colon cancer in your family. When I was diagnosed last May, I got really interested in understanding what could have caused my UPSC, and read that while most cancers (around 90%) are sporadic, about 10% are due to inherited defective genes. Someone who has had endometrial cancer, and has at least two first degree relatives who developed colon cancer woudl be considered for genetic testing for Lynch syndrome genes. Lynch syndrome, while not a guarantee of cancer, it does increase the risk of developing adenocarcinomas (ovarian, endometrial, colon cancers) and runs in families. Keep in mind that the great majority of cancers come out of nowhere (mine seems to be, at least), but it is something good to know to help educate the next generation and increase our own level of vigilance. I believe Angelina Jolie had a number of pretty drastic surgeries to remove organs affected by the BRACA/B gene she learned she carries, her mother died of ovarian cancer at a very young age. My apologies if you  already know about Lynch Syndrome's risks, by sharing this I am hoping to benefit those who may be new to this discussion board. I include a link to a good source with info on Lynch syndrome in case anyone would like to learn about it. In the end, some people prefer not to know about your genetic profile/risks and simply focus on  being vigilant and keeping healthy habits, which is probably the best defense against all kinds of cancers anyway. So being tested is a personal choice, but one that we should make based on reliable information, and learning about it is the first step. :0) 

Best of luck as you continue on your road to recovery.

Lucy 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3349923/

CheeseQueen57's picture
CheeseQueen57
Posts: 804
Joined: Feb 2016

Thanks Lucy,

i know early on I was trying to get them to do genetic testing on my tumor and they did mention that the do test for Lynch Syndrome.  However I don't recall them giving me the results. I will be sure to ask at my next appointment. I am still waiting for my second opinion on my slides from Johns Hopkins. They've had the slides for almost a month. 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Lucy, I just looked back at my pathology report and it lists adenomyosis and leiomyomas as additional pathological findings. For me, extremely heavy bleeding for almost a year was the symptom that caused the anemia which in turn led to the D&C where they originally found the cancer cells.

My mother had a hysterectomy in her mid-thirties because of heavy bleeding. Both of my older sisters had hysterectomies in their mid-forties due to heavy bleeding. Thankfully, none of those sugeries led to a cancer diagnosis (my mom died from non-small cell lung cancer but she was in her mid-seventies).

Hope this information helps you in your research!

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

At some time in my adult life, the medical profession decided they were doing too many unnecessary hysterectomies and they probably were.  Most of my friends have had hysterectomies and when we all hit about 40, it seemed like it was a very common procedure.  Done having babies?  Out it came.   I had no gyn problems, except for the fibroid and heavy bleeding thing which wasn't so bad and I lived with it.  At no point was a hysterectomy suggested.    However, I'm the one who got endo cancer and they, siimply because they did not have a uterus, did not.  I'm more of the mindset that if we hold on to that organ long enough, it will just sit and fester.  Perhaps those who had adenomyosis are at higher risk, and my thoughts are about as unscienfitic and unmedical as can be, but it seems like it's not a matter of if, but a matter of when.  And I guess no one would want to remove a perfectly healthy organ, but since I had endo cancer, it has made me take notice amongst my peer group, 3 of whom have had UPSC.

Suzanne

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

I like the old way, done having babies? out it came! My grandmother used to say that the uterus is only good for having babies, and getting cancer. I am not sure why she would say that, she died in her sleep in her 90's, but perhaps she was a lot more aware of our family history than I am.  My sister is already considering an elective hysterectomy. Having those elective hysterectomies may not be the right thing for everyone, but those who share in the same risks, it is something to consider. I wish I had insisted on a hysterectomy when faced with the heavy periods, by the way, a lot of people who suddenly start having heavy periods in their forties have mild adenomyosis that goes undiagnosed. I think it is good to be informed about risks, I do hope we can reduce the number of women affected by this cancer through increasing vigilance and being our own advocates.

Lucy

Yana777's picture
Yana777
Posts: 1
Joined: Aug 2017

At what age were you diagnosed with type 1 endo cancer? Were you on menopausal stage already? If yes, how long after menopause? I've read from medical literatures that adenomyosis goes away or shrinks during menopause, but i don't know how true it is and if it's true to all women. I have adenomyosis and heavy bleeding during periods although my period is not long, lasts only 4 days, the heaviest last a day or 2. I'm 47 yrs old. I also have endometriosis and a 9.6cm ovarian cyst which is an endometrioma (caused by the endometriosis). Surgery is scheduled this Sept 20th but my husband and I talked to the doctor and asked her to take only the cyst out and leave everything else. She said she's going to put a Mirena IUD in my uterus to thin the endometrium and stop the adenomyosis and endometriosis. I don't know however if this is effective and if this takes away my risk to getting endo cancer. She will also take out the fallopian tube to lower my risk of ova cancer. My mom died of breast cancer at the age of 49. I'm wanting to find out about your case. 

Edcm
Posts: 2
Joined: Jan 2018

Hi, did you have ovulation pain also? I have adenomyosis and also ovarian cysts and fibroidS in uterus. it seems like the doctors are not digging deep to see if they are missing something. They act like its not a big deal even after how much pain i am in during ovulation and my period. Im 46yrs old

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

I also developed anemia from the chronic heavy periods, and was having yearly ultrasounds to monitor my uterus, interestingly, had just had a normal ultrasound just weeks before being diagnosed with UPSC last May.  I brought that up with my oncologist/surgeon but his reply is was that UPSC behaves like ovarian cancer in that is is hard to spot.  The more I hear about the history of early hysterectomies in some of our families, the more I think that may have protected our relatives from cancer, seems like a good idea to me! but then again, it is a very personal choice. 

I hope you are well, and on the road to recovery/NED.

Lucy

 

 

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

I wish I had complained about heavy bleeding during menopause more. Maybe I would have had a hysterectomy then, too. I just thought it was kind of normal to happen during that time and my doc said if it happened again to let her know and she would do a d and c. Oh well hindsight....

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

Lucy.  Your prompt caused me to look back at my recent pathology in which my tumor was noted to be a Grade 1, Stage 1-A.  "addditional pathologic findings: adenomyosis and benign leiomyoma (3.5 cm in greatest dimension) negative for cytologic atypia ..."   Plus a lot of other benign objects found in everything removed! Never had intensive bleeding.  Never an unusual pap smear.  Completely normal history of periods and normal, typical menopause.  No history of cancer in my family.  In three days i meet with the surgeon and team for the 5 yr monitoring plan.  12% of supposedly "clean" stages like this one have reoccurances.  

Like you - this is my soapbox now.  I appreciate your advocacy and have added your points to my speech!

Mary Ann

 

Mary Ann

laura25's picture
laura25
Posts: 171
Joined: Mar 2011

Thank you for the post Lucy.  Yes, I was dx with adenomyosis years before my cancer dx.   I was dx probably about 5 years later with endometrioid adenocarcinoma.  Thank you for sharing!

Uterinegrade1
Posts: 3
Joined: Sep 2017

I just got my patbology report back and adenomyosis, complex hyperplasia with atypia , intramucosal endometrial adenocarcinoma grade 1. They havent staged it yet I see a Oncologyst on the third. Can anyone help prepare me i did have a radical hyster everything removed except lymph nodes. 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Uterinegrade1, it's hard to tell since the information from the pathology report didn't include a stage. I will say that Grade 1 is about as good a grade as you can hope for. If it ends up being stage 1, grade 1, you're outlook would be very positive. Good luck and keep us updated on how you're doing. Kim

Edcm
Posts: 2
Joined: Jan 2018

i just ran across this while doing research on my issue. Last week i was diagnosed with edenomyosis and on ultrasound found twolarge fibroids in uterus. For 15 yrs ive dealt with unbearable ovulation pain. No further testing has been done as doctors say its ‘normal’ and to take ibuprofen. The pain is so bad, i can hardly walk or function for 4-6 hours as my egg travels, pain goes from back then around and into pelvic with labor like pains and pressure. Well now, the same pelvic pain is happening just prior to period and during which led me to push for answers. Ultrasound shows fibroids and adenomyosis And enlarged uterus. I cant get an answer if this is related to my ovulation pain. Doctor says i can deal with the pain or get a hysterectomy. Im having a hard time thinking there is more to this but not sure what to ask or what test can be helpful to determine more. or if a second opinion would be best. Thank you for any suggestions or opinion if youve dealt with similar. Also have fibrosystic disease. In both breasts. Again, not sure if these issues are all related. Am i worrying too much?

evolo58
Posts: 293
Joined: Dec 2017

I will always wonder if my myomectomy for my fibroids is connected to my UPSC. I just can't shake the feeling it was. And what is a risk factor for adenomyosis? Fibroid surgery.

At the time I had mine (1999), myos were promoted as a great alternative to hysterectomies if a woman wasn't sure whether she was going to have more children, or simply did not want a hysterectomy for whatever reason. I read the pros and cons very carefully before I made my decision, weighing over them for weeks. The cons of a myo seemed less serious than that of a hysterectomy. My doctor briefly suggested the hysterectomy, but did not present any suggestion whatsoever that there could be problems with the myomectomy I didn't read about. Not a bit.

I am still in disbelief over my UPSC. It just doesn't make a lick of sense in my case. I will continue to be in disbelief. I don't fit ANY of the criteria. None. For instance, I have hyperplasia (17mm). That is very rare in UPSC, as you can see from the citations above; particularly a lining that thick. When I've seen hyperplasia in UPSC, it's usually below 10 MM or so. A rare symptom in a rare cancer. Great.

I have actually read that endo cancer is increasing, and I can't help but think that might have been a reason why; that back in the 90s and early 2000s, women were not better informed when faced with fibroids and extremely heavy periods. I'm now reading of complications involving UAE that have only come out fairly recently. (I did not have a UAE, but considered one when I had the Periods from Hell right before menopause.) If there was only a way to go back in time, I go back as soon as you can fire that machine up and SCREAM at myself to take the uterus out. Oh, and consider taking out the ovaries and fallopean tubes as well for good measure. I have already cautioned my daughter. 

Maybe the old-fashioned idea of just yanking the stuff out when you were done with babies was the best idea after all. Too bad we didn't know that back then.

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

Wow. This is interesting. My obgyn said if my u/s does not show hyperplasia, I don't need a biopsy and just have to have another u/s in six months to a year. I wish I had printer ink to print that out to show him. 

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