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Newbie Here - Endometriod adenocarcinoma

kimrenea62
Posts: 4
Joined: Oct 2014

Hello.  I am 52 years old, had a dnc and hysto something or other and was diagnosed with endometriod adenocarcinoma grade 1/2 on September 16.  I was referred to a gyn/onc but my appointment is not until October 14th.  I'm am just a bit shy of completely freaking out.  I go from being someone in  denial land about having cancer, to thinking I have a little "pac-man" icon eating away at my body from the inside.  Regular gyn said complete and total hystorectomy.  Seems to think it is all contain and that is all that will be needed, but we all know that cannot be confirmed until the surgery takes place.  Is waiting this long for surgery usual?  I just never thought I would be on this side of cancer.  I've been dealing with my 72 year old Mom who has Stage IV breast cancer for the last 5 1/2 years.  She is doing well at holding her own, but other than her we have had no cancer in our family at all.  Just in a fog and not knowing what to think.

Thanks for letting me vent!

sandylil
Posts: 12
Joined: Oct 2014

i too was just dx last with with grade 1 endometrial adenocarcinoma.  i just got my appt for GNY ONC for monday.

surgery not sceduled yet.

I understand this feeling of being in a fog..

there are Great women on here with experience and positive info. so keep tuned....

Sandy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2892
Joined: Mar 2013

sandylil, what I wrote to kim is applicable to you.  I am sorry the both of you have had to find us, but please ask us anything. 

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Welcome, but sorry you have to meet here!

When you first get that or hear those words, the first thing you want to do is get it out right away.  But that doesn't usually happen.   I was supposed to have a "routine" hysterectomy.  After my hysterectomy and I went for my check-up appontment, I was told that they found cancer in my uterus and ovary and cervix.   To say the least, I was floored.   I then had to wait about a month to have staging surgery.   I had that and at that time they also removed my appendix and omentum (places for possible occurrences)   They did not find any further cancer.  I was staged at Grade 2, Stage 3a endometrial adenocarcinoma.   I didn't start treatment for a least another month after that.   I was 45 years old at the time.  I am now 54.

So my advice to you is that this is not to panic (I know - too late).   Take a deep breath and remember to breath.  Take it one step at a time.  Don't look on the internet (opps - guess I am too late there too!)   A lot of the information there is way out dated and it can scare the heck  out of you.

Have you met with a gyncologist/oncologist yet?    I would really think it would be better if a gyne/onc would do your surgery.   At my initial hysterectomy, my regular gyne actually had his friend (gyne/onc) assist him because I was so scarred that if something got knicked the gyne/onc was better at fixing those kinds of things.   Even though I had both of them there, they did not see anything suspecisous when they were in there.  So it was a surprised to them also when the pathology came back.

Also, what kind of hysterectomy are you getting  - The traditional one (where they cut you) or The DaVinci method.    Further see if they are removing your appendix and/or omentum.   

Hang in there Kimrenea!   Vent all you want.   This is a good place for it.

Kathy

P.S.  My mom (80 years old) was just diagnosed with breast cancer

kimrenea62
Posts: 4
Joined: Oct 2014

Thanks for the welcome, although I would have rather met under other circumstances! :)  I will meet with the gyn/onc on Tuesday October 14th.  I am hoping that we will schedule the surgery then.  My regular gyn said that he thought I would have the DaVinci, but I guess I will know more on the 14th.  When my doctor gave me the news on the phone after he said I had cancer I kind of spaced out.  I guess I'm just uneasy of the "unknown".

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

That is so perfectly normal.   I had my own episode of what I call - The slient scream - in the middle of the night into my pillow.   

So hang in there.  I will be thinking of you on the 14th.

Please feel free to ask any questions or concerns.

Kathy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2892
Joined: Mar 2013

kimrenea62, your feelings are completely normal so please try to stop and take a breath. 

You really are waiting for THE type of doctor you want to help you beat this disease, a gyn/onc, and they are going to build a plan and you will work the plan.  Be careful of all the crazy stuff on the internet.  You found the place to come and you can ask anything here.

You are a statistic of one so don't let anyone tell you what happened to someone they know - stop them and tell them you are staying positive. Don't be afraid to ask for something from the doc to help you sleep.  I think you will feel better once you meet your surgeon, it is just waiting to get there.

 

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

One thing at a time.  One appointment at a time.  You will be able to get alot of great information on this board and you will hear alot of different experiences.  We are all connected by something we never dreamed of having.  Uterine Cancer.  I agree with the other ladies on this thread.  I was 51 when I had bleeding or spotting from Feb. - May 2013.  They found two different atypical cells on my PAP test (that's unusual to find Uterine cancer on a pap test), then, I had a colposcopy in June and was called by the ob/gyn that I had cancer.  Within two weeks I had an appt. with an ob/gyn oncologist. Within a month of when I met the ob/gyn consultation (I found out that time I had a rare form of Uterine caner - UPSC), I had a complete hysterectomy with the DaVinci robotic assistance.  A month after that, I started chemo.. They found that the cancer had already spread to Stage IIIA Grade 3.  We all thought it was caught early based on size of tumor in uterus.  Chemo. started August, 2013 and ended Jan. 2014.  6 rounds of carbo platin/pacitaxol.  Because of size of tumor, the doctor felt radiation would not benefit me.  I had a great doctor/nurse team all through my journey.

The things I learned.  Positive attitude, great support system, change lifestyle as necessary, only focus to the next event/appointment etc.  Only focus on what you know for a fact.  Don't look ahead at what could be.  Try not to worry as it only steals our joy for today and doesn't change tomorrow.  One of the members on this board taught that to me.  I created a caring bridge site to journal and keep others informed.  Very therapeutic.  I take someone with me to every appointment to take notes. 

Keep us posted as you go through your journey.  Feel free to laugh, cry, vent, ask questions etc.  I have gained more information from this site but more importantly, I found that I am part of a special group of sisters and I've made friends whom I've never met.  I found that I cry when we lose  our members or family members of members, I find I rejoice when they rejoice.  It's a special group.  I thank God for this group.   Those of us that are praying people, we pray for members of this group.  We give cyber hugs.  Just know that you are NOT alone ever.  So, welcome Kimrenea62

Jeanette 

pinky104
Posts: 574
Joined: Feb 2013

I think it was 3 weeks for me to get an appt. with a GYN/onc, then a month wait for the surgery, as my doctor and his partner were very busy (their practice is the only one for a large distance across my state).  I then had a month wait for chemo after the surgery.  I've survived for 4 years and almost 5 months in spite of having stage IVB UPSC, which is very aggressive.  I have a small mass now (found in late May) which may or may not be cancer.  The doctor is waiting for it to grow large enough to be able find it and take it out.  My labwork is still within normal limits.   I think my original long wait for surgery with such an aggressive cancer and my long survival should help you rest a little easier, if such a thing is possible when you know you have cancer.  

Good luck to you.  

Be sure to come back with any questions.  The girls on here have good answers to just about anything you can ask them. 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I found out that I had cancer on 10/14/13, so Oct 14th is now branded in my mind forever.  From the time I noticed slight spotting to my DeVinci hysterectomy was almost exactly one month. During that month, I saw a regular gynecologist, had a Pap test and ultrasound, saw a gynecologic oncologist and had a uterine biopsy.   Endometriod adenocarcinoma, I believe, is the "garden variety" of uterine cancer that most women get and is usually quite treatable and curable. My Gyn Oncologist thought that that was what I had (unfortunately, he was incorrect).  Many of us here have more than one type of uterine cancer that include aggressive forms, such as UPSC or sarcoma.  Like you, when I was diagnosed I just about freaked out.  I thought I was going to lose my mind with fear.  Believe me, your emotions will become more manageable and you will discover just how strong you are.  We are here to help you through your journey, so vent if you need to, ask questions if you need to and cry on our shoulders if you need to.  We know how you feel and I believe that you will find that the women who post here are exceptionally knowledgeable and caring. I wish that I could meet each and everyone of them in person.  Wouldn't that be wonderful if we could all meet? 

Warm Wishes,

Cathy 

    

kimrenea62
Posts: 4
Joined: Oct 2014

Well I finally got to see the gyn/onc yesterday.  My DaVinci hysterecotmy will be on Oct. 30th.  He said that according to the pathology report of my biopsy I had the "garden variety" of endometriod cancer.  Low grade, non-agressive.   Of course we will not know the Stage until the surgery but he seems to think if the pathology report is indeed correct, then he is 95% sure that the surgery should be all that I need.  I am praying this holds true.    On a funny note, I told him that I had to be out of the hospital by dark on Halloween.  I have seen the movie Halloween II to many times to be in the hospital after dark on Halloween night Tongue Out  Of course my Dr. looks like he stepped out of a Chippendale Calendar, so he is easy on the eye, so seeing him the next 5 years will not be so distressing Smile

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I hope that all goes exceptionally well for you with your upcoming surgery.  If you have to have uterine cancer, the "garden variety", that is, endometriod is the one to have.  In most cases, I've read, surgery alone can cure it.  I hope this is true for you and I will say a prayer for you on 10/30/14 that all goes well.

Warm Wishes,

Cathy

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Glad you finally got a date and you know what is going on.   Thats fantastic if surgery is all you need.  I know what you mean about the Halloween thing.   My son was in the hospital during Halloween watching Halloween on the TV.

Ahhh, what's your doctor's name and where?   Maybe I need to change - lol

Keep us updated.  My best to you.

 

Kathy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2892
Joined: Mar 2013

That is a great pathology report.  They will make sure after the surgery to make sure that is it, but that is really good news.  Very happy for you.

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

I'm SO glad to hear the "good news".  Prayers going up for you for the upcoming surgery.  Glad you get DaVinci too.  I had DaVinici assisted and it was the thing that found my pea-sized implant on the back of my pelvis.  Not to scare you or anything.  I had UPSC but we knew that going into my surgery.   They say that recuperation is faster with DaVinci.  Best wishes.

Jeanette

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

Hoping all goes well with your surgery on the 30th.  Welcome to our group.  I hope I can offer some reassurance.    I am a 4+ year survivor of Stage 1a, Grade 1 endometroid adenocarcinoma and have done great.  At my last visit, the doc said he'd be very surprised if I were to recur at this point.   I'm acutally pretty sick of followups, so I'm hoping my next appointment (which will be 4 years and 8 months, but who's counting) will be my last.  I will certainly discuss it being my last on that last visit.  He has better things to do than examine me.    

I also had DaVinci surgery and remember clearly that friends who had had  abdominal hysterectomies could not believe how good I felt.  Allow yourself time to be a princess and you'll likely have no problems and very little discomfort.  I think that really helped my recovery (the princess part).  I kept expecting to feel bad, but I didn't.  I took really good care of myself.  I needed absoluely no pain meds when I got home.  My doc reminded me that it was still major surgery via minimal incisions and what happened on the inside is the same as via abdominal surgery.  Really?

Time will be your best friend.  Until enough time has gone by (different for everyone), you'll worry even though the odds are in your favor.   I never expect to see this cancer again and hope that happens to you, too.

Best wishes,

Suzanne

kimrenea62
Posts: 4
Joined: Oct 2014

Well I had my surgery.  Did the DaVinci and lasted about an hour.  Pathology report came back and the Dr. says no futher treatment necessary.  Early stage and Grade 1 cancer.  Follow up visits only!  I'm so relieved!  Thank you so much for all your support on this board. Much love and best wishes to you all!

 

Thanks,

Kim

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

what wonderful news for you.  Celebrate and enjoy each and every day.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2892
Joined: Mar 2013

wonderful news!

ConnieSW
Posts: 1567
Joined: Jun 2012

news, Kim.  Do take care and allow your body to fully recover.  What happened on the inside is lots different than the outside.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Kim:

Thanks for sharing the good news.

 

Kathy

bluesmama
Posts: 124
Joined: Aug 2014

Great news! I was in a similar situation. Hopefully your recovery is text book. 

KayBB
Posts: 15
Joined: Nov 2014

Hey, My name is Kay and just found out I have endometriod adenocarcinoma.  Mine is Stage 3A.  I am like you, never thought I would be on this side of cancer.  I have been a caretaker with my mother-in-law, 92 years old.  I  had a hysterectomey on Oct 27th, 2014 and three lymph nodes removed.  Two lymph node had cancer cells and the other had a growth.  I am getthing ready to take chemo and radation.  I am trying not to think but be positive.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

KayBB, welcome to our board, but I wish that you didn't feel a need to find us here. I also have stage 3A, uterine papillary serous carcinoma, not MMMT. With time, I found that the shock of the diagnosis started to wear off and I could begin to function without constantly thinking about my cancer. I was diagnosed 13 months ago and am currently NED (No evidence of disease). Although I didn't have radiation treatment, I can tell you that the chemo drugs-usually carboplatin and Taxol are administered-weren't difficult to handle. I missed one day of work due to fatigue and that was as a result of my last and 6th chemo. It is doable, Kay, and I hope that you find it to be so!

I suggest that you get copies of your operative report and pathology report just in case you decide to get a second opinion. I found it helpful to write out my questions before seeing my gynecologic oncologist, that way I wouldn't forget to ask any important questions. I brought family members to the appointments with me initially, both for support and for a different set of ears. 

Please keep us posted on how you are doing, Kay.

Warm Wishes,

Cathy

ConnieSW
Posts: 1567
Joined: Jun 2012

I always feel so sad to welcome a new person, Kay, but glad that she ( sometimes he) has found her way here.  This board is quite literally a lifesaver with all kinds of treatment information as well as being an emotional support.  As did Cathy, I found chemo to be very doable, nothing like I anticipated.  There are issues but we will help you take them in stride.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2892
Joined: Mar 2013

KayBB, I am sorry you have found us but you have a safe place to ask any question, vent, cry, etc...said by one of the the dearest women we have all know, "you are a statistic of one".  Do not read the statistics out there, the information is old and there are many here who have proved them wrong.  

Cancer is a journey, but it is doable.  You may not think you will ever see the end, but one step at a time, you will get there and the people on this board are always willing to help.

Take a breathe and if anyone starts to say anything negative, tell them to STOP, I AM ONLY THINKING POSITIVE THINGS! 

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