Emotional support - Mother diagnosed with Endometrial Serous Carcinoma

Moonlets, take a breath.  The statistics online are OLD.  Your mother is not a statistic so just because it happened to someone else doesn't mean it will happen to her.  No doubt it is scarey.  Not one of us wanted to hear that we had cancer, but once we did we wanted information and others who are going through it, so you have come to the right place.

My advice is for your mom to find out what she is dealing with and work the plan they give her.  Find a doctor she trusts and listens - it should be a gynecologic oncologist, and I am betting that is what she will get with MD Anderson.  

Typically surgery is the way to find out exactly what Stage you are dealing with - I is early - IV is late.  Treatment usually always include a complete hysterectomy and taking sample lymph nodes.  Once that is done and they see what they are dealing with is usually means chemo and radiation.  

There are plenty of ladies here with the different types and stages of gyn cancer.  It is ok to be scared.  You're not jinxing your mom.  Please come back and let us know what is going on.  She is not alone and the women here will answer any question.

So glad you found us and can express all these thoughts, questions and concerns.  I hope it gives you a ton of relief to read our stories and to know that there is LIFE after diagnosis.

Your mom is super fortunate to have a wonderful daughter who cares so deeply and will be there every step with her.  You are going to make a great team and we'll all link arms with you and walk along on this journey.  A good thing to remember is that all this has taken years to develop and you are on the right track with the right people in figuring out what the next steps will be.  You just need to take it one day at a time.

In the meantime while you are waiting- and waiting is the most difficult part!!!- continue to "BPositive" and make each day count.  One thing a diagnosis does is make you really REALLY appreciate the DAY you have.  Look for the blessings- the ph call, the smile, the laugh in a day that you didn't think would have one, the colors all around you, flowers, fresh air- whatever it is that brings you JOY.  None of us knows how long we have to enjoy the incredible thing that is LIFE- we rush around thinking we have all kinds of time when in reality no one really knows... seize the day and help your mom do the same and we'll be here however we can to help.   (((HUGS))) 

As some of the wonderful ladies on this site have said.  Slow down, take a breath.  Do not read so much of the stuff on the Internet.  It is old and misleading and terrifying.  Much information cannot be determined until after surgery is done and the pathologist can do tesing on all the tissue.  Once they can do that a full pathology report will be done.  Make sure you ask for a copy of it.  

Make sue that you get a good oncologist gynecolgist Dr.  Some gyn drs would suggest they can do the original surgery but it is better to have the gyn onc dr do the surgery as they know what they are looking for and at and they can remove tissue that may look funny to them for testing.  Make sure to ask if they will remove some lymph nodes for testing.

The reason I say it is doable.  I was diagnosed in April 2011, with high grade uterine cancer that was determined to be stage 3C1 Carcinoma Sarcoma (aka MMMT).  The tumor was in my uterus and a coupld of microsopic cells in 1 lymph node.  I had a full abdonminal hystercectomy with everyting female removed along with the omentum (layer of fat tissue protecting your organs on your stomach)  and a dozen lymph nodes.  Nothing but the tumor and 1 node had cancer.  I had six rounds of carbo / Taxol chemo treatments and no radiation.  I am still here.  Will hit the six year mark in August this year.

The ladies on this site are wonderful.  They can support, answer questions, listen to rants and venting, offer guidance and give praryers.

My sister and my daughter supported me when I went through my journey so I understand you supporting your mother in her journey.  Praying for your mom and for you to get through this one day at a time.  No one has an expiration date on them.  Be an advocate for your mom and for your self.  Make a list of questions, keep asking those questions until the dr answers them.  If you do not like the answers, get a second opinon or even a third or fourth.  Do your own research.  Get copies of everything, ask what it means.

Good luck. trish

MoonletsBPositive said:

Thank you so much!!

If I may ask, How old are they? I guess one I may be thinking on the top of my head is from 2012, so between 2012 and now, there has been more discovery in terms of treatment? My mother's new DR. is a Gynecologic Oncologist,Dr. Karen Lu, and she has published articles related to what my mother has, in fact some of them were posted on here. So I want to be hopeful for my family that this Dr. who has an extensive background truly believes they caught my mother's cancer early.

I know we have to wait for the pathology report once she has a hysterectomy, but when they look inside during the day of operation can they also notice things and make note of that after the surgery is over? I wish I was present with my mother when she went to her Dr. but sadly I had to work.

Anyways, I will keep everyone posted since I like to start what I finish and thank you once again for your response!

I was about seriously about to loose it at work today..

Ok, I have heard Dr. Karen Lu speak - she is super sharp so I really do think you mother is in GOOD HANDS!!

As far as can they see 'anything' when they open her up?  I think one of the other ladies had talked about this - the days of "they opened you up and saw they couldn't do anything so they sewed you back up" are gone.  I remember when I was getting my scan for my radiation planning.  I asked the radiation tech how long she had been doing it and she said 22 years.  I said, "I bet you have seen things change a lot in that time".  She said TREMENDOUSLY. 

It is completely understandable to be upset.  I can't even begin to think what my mother or sisters felt or thought when I told them.  My twin sister cried and cried and cried.  I asked her what would you do?  She said she would take it a day at the time - and I told her that was what I was doing.  It is all any of us can do.  Cancer is not an automatic death sentence - it isn't a picnic and I wouldn't wish it on my worst enemy, but it is going to be what it is going to be. 

I was diagnosed with the same cancer as your mom at age 65. I had surgery in March 2012 and completed treatment that August so will soon celebrate 5 years NED. I was lucky to be 1A. The doctor was able to tell my family immediately postoperative that he believed that was the case. 

We have only heard good things about Dr Karen Lu on this board so how reassuring it is to know your mom is in such capable hands. The next 11 days of waiting will be hard but they WILL pass and it's a lot easier once you know what you are dealing with. 

I am a retired nurse who worked with dementia patients so I feel for your mom. I hope you can arrange for services/support for your dad so your mom can have the time she needs to heal properly. 

Tell her we'll be rooting for her. 

Let me add my words to OldBeauty's: insist on live tumor testing.  That means they'll send a part of the tumor right out of surgery for chemo sensitivity testing (sometimes called tumor assays). This is NOT a pathology report, and it can only be done with LIVE tissue. There are a few labs throughout the country that do this; Dr. Nagourney (Rational Therapeutics) here in Long Beach, CA is one but there are a few others. They take the live cells and test them against known chemo compouds to see which ones have the best reaction (i.e. death rate). Without that, you're flying blind with chemo - they'll give you the one most statistically likely to work, not the one that's specifically matched to your tumor.  

This happened with me: I was not made aware of the option for tumor testing - an unforgivable failing on my oncological surgeon's part - and thus commenced the standard chemo regimen of 6 rounds carbo/taxol. My post-chemo CT scan showed cancer had grown in my lymph nodes while I was on chemo. You can imagine how devastating that was. I'm now undergoing radiation with a Cisplatin 'booster', but had I had live tumor testing I'd known going in which chemo would work. In my case the 'statistically likely' cure did nothing. 

Also, as others have said here, the sooner your mother can see an oncological naturopath for information on diet and supplements, the better. Good luck and keep us posted. This board has saved my sanity and I can't thank the members enough. 

Hoping you are feeling better. I was diagnosed April 19th. When I called my oldest daughter, she began to cry. I believe it was harder for her than it was for me. Your Mom's story sounds a lot like mine. They caught it early and it seemed to be contained in the uterus. The after surgery staging was 1A. I'm still in the recovering from surgery stage and will start chemo in July. Please keep us updated on your mom.

Moonlets, sorry to hear about your mom. Stay strong. I am sorta new to the site regarding posting but I am getting better at it due to the inspiring, warm, and endless support from the ladies onboard. All of you are awesome. 

I was diagnosed with stage 1b uterpine sarcoma and decided to  be watched after my Feb 2017 surgery at Methodist. I found that others chose to be watched and remained NED for years. I wasn't so lucky. I am  now preparing for my first consultation at MD Anderson next week for a recurrence in my abdomen and pelvis. cant wait to get the chemo going. I pray that whatever decision u make will be rewarding to you and your mom and that togethper you both will enjoy many years to come