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Emotional support - Mother diagnosed with Endometrial Serous Carcinoma

MoonletsBPositive
Posts: 9
Joined: Jun 2017

Im scared for my mother and Im trying hard to be strong for her, but I'am really loosing it here.

She originally went for a biopsy back in May due to a Polyp and past pre-menopausal bleeding, she had them before but they were beningn,  and the first doctor told her it was just Endometrial Adenocarcinoma, assuring her that the cells were scanty/atypical and that they were very sure they caught it in the early stages due to other results supporting this (Negative P53, Scanty atypical cells).

However, my mom went for a 2nd opinon at MD Anderson here in TX, and they suggested to do another biopsy. However, the DR did read the past biopsy results and agreed with them saying it looked like my mother had possibly early stages of Uterine cancer and possibly wasn't even cancer, but hyperplasia (My mom was no longer depressed and getting out of her funk) Then the new biopsy results came back yesterday and now the 2nd Dr said it looks like she has Endometrial Serous Carcinoma but they believe they still caught it in the early stages, and that its treatable, but the main issue is reoccurence of the this happening again. They also said according to the CT And MRI scans, that it still shows no signs the cancer has metasticized/ spread (lymph nodes look fine, nothing in the breasts/lungs) to other parts of the body, CS 125 is 16 in the standard range, but once again they won't know the full story 100% till they go under which is in 11 days.

Im trying to remain positive, but this new diagnosis changes everything for us. I feel bad because I tried to downplay her fears ever since she had her first biopsy. I told her she just had another polyp and it wouldn't be cancer, but that was a lie. Then when she was diagnosed with Uterine Cancer, I told her she had one that was cureable and she would be fine, but that was a lie. Now I am afraid to tell her what I kept saying cause I feel Im just cursing her for it.
Cancer generally doesn't run in our family but my grandfather developed Lung Cancer in his 80s and lived 3 years after diagnosis. My mother's first cousin also developed Spinal Cancer (He served in Vitenamn so we believe he was exposed to those chemicals), but died one month after diagnosis since they found it at a later stage, and I know these scenarios must be going off in her mind as well. Her mother also died young, in her 60s due to diabetes, so I fear loosing my mom around the same time she hers since we were both in our 30s. Its just we were under the impression we could live a long life. Her maternal grandmother and grandaunt lived to be 100 years old and died of old age. We even did a DNA test that said we carried the *longevity gene* granted we didn't succumb to disease, and that we didn't carry cancer mutagents. 

Everytime I try to read some hope that she can beat this I keep seeing its so slim depending on the stage and the grade given this type (So it has to be Stage 1 or 2, anything after that is bad. Why are these articles out there?!). And I'm confused because if the Dr believes they caught in the early stages, why do online articles always say this type is found in the late stages?

I have no siblings to talk to about this, and I guess I just need good vibes, some good stories out there that even though my mother became one of the statistics for this rare disease, that she can beat it.
I just want to see more forum posts/articles of people who beat the prognosis of this..

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2648
Joined: Mar 2013

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.

MoonletsBPositive
Posts: 9
Joined: Jun 2017

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..

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2648
Joined: Mar 2013

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. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

Moonlets, Just wanted to welcome you to our board. I second everything NoTime posted!

We are here for you. Come back and ask us anything. Someone will most likely have an answer. There are lots of us survivors still actively involved in the board.

Love and Hugs,

Cindi

MoonletsBPositive
Posts: 9
Joined: Jun 2017

Thank you Cindi! I was browsing the boards and I did see some posts of survivors on here which was comforting.

Nellasing
Posts: 529
Joined: Oct 2016

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))) 

MoonletsBPositive
Posts: 9
Joined: Jun 2017

Thank you so much for your kind words.

To be honest, this did make me realize how we must live each day to the fullest, and now I really want to try and make my mom "enjoy" her life more.

She's currently the main care giver for my father who has dementia, I help out as best as I can but sadly I do have work. I was already trying to transition from my current job to a role, entrenpenurship persay, where I can stay home more and help my mom, and I think that is becoming more so of a reality now =)

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

Welcome Moonlets! I'm so sorry your mom and you are having to deal with this, but she is lucky to have you:) You will find even if she has a later stage that there are many of us with stage 3 or 4 around. I am 3C clear cell which is another agressive type. I had my hysterectomy October 2015 and have had radiation and 6 rounds of chemo. My treatment ended last June and I M currently NED (no sign of cancer) Your mom can do this! Prayers and take one step at a time. We are all here for you!

MoonletsBPositive
Posts: 9
Joined: Jun 2017

Thank you so much for sharing your diagnosis and Im happy to hear your NED! If I may ask, did you change your diet too?

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

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
Posts: 9
Joined: Jun 2017

"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. "

It really truly is. Ever since she was diagnosed she read all the bad things and ofcourse we didn't think at the time she had the aggresive form she was reading about. Im also thankful my mother went for a 2nd opinion and got a well known Dr., Karen Lu, from MD Anderson. And You're at the 6 year mark? Truly Wonderful news to hear!! I will try and go with my mother for pre-op and ask Dr. Lu these questions because I know when my mom went with her sister, my aunt, they did ask questions but its good to have a 3rd person there.

Also if I may ask, did your biopsy diagnosis change after you had your surgery/pathology report greatly?

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

When I had the D&C there was no staging done.  My D&C was done by my regular gyn dr.  She just thought I had palaps(?) and that is what was causing me to bleed.  She was not expexcting cancer and I have to say neither was I.  When she called me with the results while I was at work and told me there were cancer cells in the tissue she removed, I freaked out and just heard cancer.  I had to call the office back and ask for the name of cancer again and then the first thing I do is type the type in the computer and started reading about MMMT.  I had to get up close the door and I started crying thinking I was going to die within 1-2 years per the info out there. I would not get to see my grandson grow up.  It took about 30 minutes to an hour for me to get myself under control and put my big girl panties on and tell melself that the information I was reading is not me and my case and how I deal with it is not what the all the information was talking about.  I had the appointment with the gyn onc dr on Monday 4 Apr and she told me she could not do a staging until after surgery to get a clear picture of what was goind on inside.  She also did nogt want to do the robotic surgery becasue she liked to go inside and move things around to see for herself what organs maybe affected.  Takes a bit longer to heal but she looked at everything.  She told my family that everything looked good after surgery and she thought it was just contained to the uterus, but the pathology report in 2 weeks would confirm that or not.  Well the path report came back that the tumor in the uterus was a stage 1A (beginning) but that 1 lymph node had microscopic cells in it so that took it up to a Stage 3 C1 and that was higher.  My family was with me all the way.  Asking questions taking notes, doing research, the whole nine yeards.  All I had to do is set back and do what the dr told me to do.  They gave me a choice of joining a trial and sent me home with the paperwork to read up on the different treatments of the trial.I read the info and then asked her what she recommended.  she said that she would not go with th trial but just do 6 carbo /taxol chemo treatments.  I told her that is what I would do.  The trial was between receiving carbo / taxol as a treatment or receiving Infosomel / taxal treatmetn but it was a blind trial so you would not know what you were receiving.  The paperwork said that if you were getting the infosomel (?) that you would to receive it in the hospital.  I did not want that so I picked no trial and just the 6 treatments.  15 days after the first treatment my hair started to fall out, being the person I am I pulled as much out as I could, I did not hurt because it was already dead, then I got the electric razor and shaved my head to just 1/4 inch long  Later that night I used shaving cread and used a new razor and shaved my head.  My choice, the only thing I could control at that point  I kept my head shaved till after the last chemo treatment in Aug of 2011. 

I feel that a lot of the battle is about attitude.  I was very postive that I was going to get through it.  I made the most of being bald, I pulled out all my old jewerly and started wearing it again. I went back to work bald because it was easier and cooler that wearing a hat, scarf or wig.  It was 100 degrees that summer and to hot to wear anything on your head.  Now this is just me and my oopinion about my hearil  I know that there are some that do not want to lose their hair but for me it was OK. 

With the help of your aunt and you your mom should be able to go through this journey.  if the dr is a gyn onc dr they will have the most latest treatment plans as MD Anderson is a National Cancer institute recognized facility.  I went to UT SW Hospital in Dallas, TX which is a resarch and teaching NCI recognized facility too.  I had one of the associate professor's as my gyn onc dr.  Dr Lea (if you need another opinon, I would suggest her).  She was and is great.  I have yearly checkups now every August with her.  Because I was such a high grade and high stage of the MMMT which is a very agressive cancer.  Yes so far so good.  If you have any other questions let me know and if I cannot answer them there are ladies on here that can.  Good Luck. trish

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

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. 

oldbeauty
Posts: 199
Joined: May 2012

MoonletsBPositive, I'll echo the others and encourage you to do whatever works for you to project calm and strength.  I have survived 12 years with this disease, and although I've undergone treatment 3 times now, I am one who has had effective results at each go-round.  As a practical matter, your mother's condition already is what it is.  It's good that whatever type of uterine cancer it may be, it is thought to be early.  That is the best predictor for living with this disease.  So, go to the appointments with her, help her gather up all her written reports and discs of imagings so she can keep a full record of her care and condition.  Ask about what kind of live tissue testing might be done and make sure they test for estrogen and progesterone receptor status of her cancer (this could make her a candidate for hormone therapy; it worked for me for 5 years).  Probably as important, and speaking as someone who herself spent time as a caregiver of someone with dementia, I'd say what would be of immeasurable benefit to your mother right now is to help her figure out how she will get help to fill in the time during which she will not be able to do her regular thing for your father.  She will have to recover from surgery and then, if she starts chemo and/or radiation, that will be taxing.  Relieving her of the caregiving burden as much as possible will help her heal in mind and body.  Best wishes to you and your mother and father as you deal with this.  Oldbeauty

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

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. 

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

Moonlets, I completely agree with what everyone has already posted. Remind your mom (and yourself) to take this a day at a time. You will find that this is more of a marathon than a sprint.

It sounds like your mom has a wonderful team of medical specialists she can count on and a loving child who is willing to support her through whatever comes next so she is already ahead of the game. Treatment, beyond surgery, is not as horrific as you might have seen on the TV or in movies. They have learned how to manage any side effects and most people come out the other side of treatment relatively unscathed.

Personally, recuperating from surgery was the toughest part of my treatment. The chemo and radiation, although not fun, was not a bad experience for me. Of course, everyone is different so there really is no telling until you go through it. My gyn-onc did send my tumor out for a chemo assay (as mentioned earlier) and I believe that really helped make sure that I ended up with the right chemo meds for my particular type of tumor. I have been NED for over a year.

Good luck to you both and keep us posted on any updates. Kim

dgrdalton's picture
dgrdalton
Posts: 73
Joined: Jun 2017

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.

Nellasing
Posts: 529
Joined: Oct 2016

Nice to see you posting and encouraging someone else Laughing Glad you found us and so sorry that you had to.  Sounds like they have taken good care of you and you are following a plan for treatment after healing.  Keep us posted on how you are doing.  (((HUGS)))

dgrdalton's picture
dgrdalton
Posts: 73
Joined: Jun 2017

Thankful to have found this site!

Carpit
Posts: 19
Joined: Mar 2017

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 

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

Is that Methodist in Dallas, Texas?  

MoonletsBPositive
Posts: 9
Joined: Jun 2017

Once again I thank everyone for their advice and emotional support.

Sadly my mom suffered a complication from her surgery 2 days later and had to be brought back. She's doing better and should be back home sometime next week.

 

As for her pathology report,

The Dr confirmed 15 minutes ago it was stage 1a and was contained to the polyp that developed in her uterus. It was only 11ml and didn't spread to her ovaries, lymphnodes or any other nearby organs =). The dr still reccommends chemo and possibly no radiation.

Thank you all once again, this was the best news we had all week!!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2648
Joined: Mar 2013

Moonlets, sorry to hear your mom had a complication and hope she recovers from that quickly.  It is great to hear it was contained to the polyp, but even at Stage 1A, if it is a Type II form - which is agressive - chemo would be recommended.  There are quite a few of us here with a 1A who had it.  There is a whole thread dedicated to it: https://csn.cancer.org/node/308416

Please let us know how she is doing and if she has any questions - we are here for both of you.

MoonletsBPositive
Posts: 9
Joined: Jun 2017

Thanks for the concern! She should be coming home by the end of this week =)

Yes, she's defintely getting chemo but her Dr for some reason said she'd only get *a little* chemo,and possibly no radiation which I find odd since I was following that forum you linked said its best to do both.

However, her Dr said the board was going to have a discussion about that when she starts her treatment in August cause it might have alil cancer residue left in her endometrium lining due to the D&C as the dr said but they have to discuss that as well.

Nellasing
Posts: 529
Joined: Oct 2016

so sorry to hear your mom had a complication!!!  Prayers for complete and quick full recovery.  Glad you got encouraging news.  Keep us posted.  sending you  (((HUGS)))

MoonletsBPositive
Posts: 9
Joined: Jun 2017

Will do. I plan to update at the 5 year mark as well =), I don''t like to leave things unfinished.

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