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New To All Of This - Overwhelmed

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

This is my first time on this site. I was recently diagnosed with endometrial cancer. I am scheduled for a hysterectomy and lymph node removal in six days. It's been a bit of a waiting game until that is done and I know exactly where I am as far as stages and how far the cancer has gone. I am feeling so overwhelmed with all of it. I feel like I'm in limbo...not knowing exactly what I'm facing or what treatment I will need. I've read some of the posts here and found myself getting more overwhelmed with all the talk about different medications, treatments. I don't know how I'm going to make informed choices when I feel so unknowledgeable about it all. I have done some research, but seem to get more and more anxious with everything I read and learn. Any suggestions? What helped others through this? Any input is greatly appreciated. Feeling a bit isolated. Thanks.

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Sorry that you found yourself needed to come here.  But this is a great place to be,  for advise, encouragement and information.  You will soon learn that you are much stronger than you ever thought that you could be.  Read through the posts under "ladies going through chemo'. the posts about radiation are also informative if you have to go that route.  Everyone is different and even though we all have a cancer with the same name, each of us is a little individual and cancer treatment is very individualized, which is one reason why there are so many different treatments talked about.  Also doctors are very different.

I have a strong faith in God and He  has gotten me through the last 3 1/2 years of this.  I have been very blessed with good family, friends and doctors.  I pray for peace and courage most of the time.

Hugs and prayers for you,  Lou Ann

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Lou Ann,

thank you for your words of encouragement. I'm glad to hear you are still doing well. It is nice to hear. I will certainly take your suggestion and keep reading.

Thanks for listening.

Annmarie

(NH25)

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Hi!  Sorry you have to be here, but it will be ok!  You are getting waaaay ahead of yourself, and Dr. Google is not always the best information giver!  It is over whelming, scary, stressful, and any other word you can add and it keeps going around and around in your head!  We've ALL been there!  Just try to slow down and breath.  Take it one step at a time.  Get your hysterectomy done, find out the stage, grade, type, then you will be given choises of treatment and you can get better advice.  Just take care of the operation, the cancer doesn't exist for now.  We have a wide variety of types of uterine cancer, experences, drug use, good and bad, diet, exercise, everything you can imagine here and the very best people in the world on these boards.  We are here to help!  I am Debra(Jo), Uterine Papillary Serus Carsonoma  stage 1a, grade c.  I am five years out from chemo and radiation and am NED(no evidence of disease)thank you Lord!  So I've been here a while.  I am up late so if you need some late night pep talk, I am usually checking in several times.  Best, Debra

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Debra,

it's nice to meet you. "Slow down and breathe"...thanks for the great advice. It has been too easy to get carried away and overwhelmed waiting for answers, but your advice is good.

Glad to hear you are 5 years NED. That's a great thing.

I will take you up on some of those late night pep talks, for sure!!

Thanks for listening.

Annmarie

(NH25)

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I know how you feel.  Just being diagnosed with cancer is a shock, and then to be facing a hysterectomy and then the unknown...  yes, it all seems overwhelming, because it is.  Many women here, including me, will tell you that right now, before surgery, before staging, before you have any idea of what the heck will happen next, this is the hardest part, simply not knowing.

So take a deep breath.  I found that taking one step at a time helped a lot.  First, getting through surgery.  After that, during recovery, and after staging, you'll have time do more research, become more informed, and most importantly, become your own best advocate in regards to what happens next.  And then, you'll deal with it.  We did it, we are doing it, and you can do it, too!

So, welcome to this board.  I'm sorry you have to be here, but it's a great place for information and support.  Ask any questions you want, vent, scream, whatever. You don't have to feel isolated... we are here for you.  

Chris

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Chris,

it's nice to meet you. Thank you for your warm welcome and your validation that this begining part just....stinks! It helps to know others have been through the same and made it through.

I'm sure I will have tons of questions and it is good to know I have a place to go to ask them.

Thanks again,

Annmarie

(NH25)

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

(((NH25))) Sorry you had to come here but it's an excellent source of support and love.  We all know what you're going through because it has happened to all of us.  I have been amazed over and over how much these ladies know about uterine cancer and the pros and cons of treatment.  

I'm Eldri, 63, in Green Bay, WI and I have UPSC (uterine papillary serous carcinoma), Stage II, Grade 3.  I had a total hysterectomy on September 30th and three rounds of chemo.  After the third round I started to have some serious side effects and suspended treatment.  Now the waiting game begins with exams every three months.  But, I refuse to put my life on hold while I wait.  

I'm hoping for the best for you!

Love,

Eldri

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Eldri,

I love your attitude about your life. That has been a confusing part....do I stop everything, do I keep going with everything? I appreciate you sharing your story. I also hope the best for you. I'm glad to know I can learn alot from the amazing women here.

Thank you again,

Annmarie

(NH25)

Anonymous user (not verified)

First, take it one thing at a time.  Until your surgery, you don't know what stage or grade you are facing.  The majority of endo cancers are common, grade 1.  The stage is how far it is in your body.  If you're lucky, again your stage will be low.  With that diagnosis, you will probably only need surgery, then carefully watching after that.  My surgery was the davinci robotic surgery, it was very smooth, no pain, out of the hospital the next day.  They found a mix of endo & serous in my uterous and one lymph node, so my stage is 3c, grade 3.  For that diagnosis, chemo and or radiation is the standard therapy.  So you see, hope (& I will too) that you are common, low stage, cancer.  If so, you can rest easier knowing you are among the many women who go on to live cancer free.  If it turns out to be something more, then we're all here for you. I know when I first joined this forum I had to take a break away, because it can be overwhelming.  Ask any questions, someone will give you support.   Hugs Nancy

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

Just wanting to segway on Nancy's post.  MOST endometrial cancers are endometroid adenocacinomas.  While no cancer is "good", most of the time these cancers have a good outcome.  I had Stage 1, Grade 1 endometrial cancer in 2010.  During hysterectomy, because my tumor had invaded the uterine wall, my surgeon (gyn oncologist) did remove lymph nodes.  They were clear.  The only treatment I needed was the surgery and follow-up visits for 5 years.  No chemo, no radiation.  My cancer was the most common type.  There are all types of endometrial cancers here on this board, each requiring different treatments.  The thing is, you don't know for sure about type, stage, grade until it is all looked at by a pathologist.  And waiting is so difficult. 

Wishing you the best of luck. 

Suzanne

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Suzanne,

It's so good to hear that you are doing well after 5 years. Thanks for your feedback !!

Annmarie

(NH25)

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Nancy,

thanks for sharing. I have been trying to stay calm and positive as I wait for more information, but you know...sometimes the fear gets the better of me.

I do know that my cancer is between range 2-3. That's about all they could tell me until my surgery in 4 days. I do know they are going to do a complete hysterectomy and remove all of my lymphnodes. I know it's just a waiting game until the pathology reports come back.

I feel like it's a bit of a tight rope walk trying to balance hopefulness with reality. I'd hoped it would be the most common type, but not sure if that is still possible with them telling me it is in the 2-3 range?

Thank you for your thoughts and input...it is greatly appreciated.

Annmarie

(NH25)

 

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

by range 2-3. Are you talking about the stage of your cancer, that is how far it has grown and spread, or are you talking about the grade? Grade refers to how aggressive and bizarre looking the cancer is. BTW, a woman can be diagnosed with more than one type and grade of cancer. Ask your doctor if your omentum will be removed; with a grade 2-3, (S)he may remove it if your cancer is a grade 2 or 3. The most common type of uterine cancer called Endometriod endometrium adenocarcinoma- whew- what kind of name is THAT? Well, this garden variety type is most often a low grade (1), but not alway: sometimes it is a grade 2 or 3.

Hoping that all goes well for you!

Cathy

 

 

Gardena
Posts: 102
Joined: Jan 2016

Welcome to this board where you will find wonderfully supportive people happy to listen to you and answer questions.  Going through this cancer journey is a very personal experience, but many of the challenges we face are the same. I have learned more about cancer in the last six months than I ever wanted to know, but I've also learned I'm really strong and you will too. Cancer is like a shadow, lurking over my shoulder. But to have a shadow you must have light.  Instead of trying to make the shadow better, I live in the light.  I choose to not worry about things I cannot change, like rapid cell division, and instead focus on healing my body from cancer / chemo w nutrition,  exercise and rest, all the while living to the best of my abilities.  You can too. One foot in front of the other,  one step at a time. Best wishes for a successful surgery;  please keep us posted. Breathe. :-)

ConnieSW
Posts: 1545
Joined: Jun 2012

 

if you aren't an inspirational speaker, you should be.  I'm definitely going to copy out your light/ shadow analogy and put it on my frige

molimoli
Posts: 514
Joined: Aug 2014

Nothing to add but hugs.

Moli hugging.

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi,

Thank you for your inspirational words. I agree with the other ladies...your analogy is fantastic and I will continue to keep it in my mind.

I will let you know how the surgery goes after I return home next week.

Again, thank you for the encouraging words.

Annmarie

(NH25)

molimoli
Posts: 514
Joined: Aug 2014

All the words that I know have been already written by the wonderfully Cancer brilliant sisters here, I agree and second their every word.Sorry you are overwhelmed and feeling isolated , I/we vow we will fix that in time. We would love for you to hang with us as we have some fixing to do. You won't be heavy, we will carry you  over the rough patches,you'll see, You are our sister now and we are hugging,just imagine us there where you are, all the time , everytime.

You may not find peace or consolation in a hurry but it will come. You are alive today and that's a good thing.Take deep breaths, cry if you must, just tell us if you are falling ,no complete falls will be allowed, hang tough our sister and keep a clear head ,you will need it for decision making.

I am Moli , I am hoping that calm will find you soon.

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

 

The ladies here have given you wonderful advice.  Do you know what kind of uterine cancer you have?  When I had my uterine biopsy, I was told that I had a grade 2 cancer but not much else.  It is overwhelming and terrifying to be diagnosed with cancer, but eventually you will gain some level of acceptance.  It is not easy and I would not want to go through it again.  If I have a recurrence, it would still not be as terrifying as it was in the beginning of my cancer journey.

Uterine cancer, like other cancers, comes in varieties.  The endometriod, or garden variety type that 90% of the women are diagnosed with is usually a non-aggressive form.  Uterine cancer is both staged and graded, most often after a hysterectomy when the female organs, lymph nodes, omentum, and pelvic wash are analysed in the lab.  A low stage and low grade are always better in terms of prognosis. There are four cancer stages with stages 3 and 4 considered advanced stages.  Grades are 1 to 3 with 3 being a cancer that looks the most bizarre and spreads quickly (metastasis).  I was diagnosed after surgery with uterine papilliary serous carcinoma, stage 3, grade 3.  Surgery was almost 2 years, 4 months ago and I am still here in spite of the lousy diagnosis.  Initially, I obtained both my pathology report and my surgical report for my records.  I sought two other opinions regarding treatment before I started on 6 chemotherapy rounds. After careful consideration of my particular situation and much research, I chose not to have radiation, including brachytherapy. 

I wrote all my questions down before I saw the gynechologic oncologist and had someone else with me each time initially for support and for a second set of ears. Hopefully, you are having a gynechologic oncologist do your surgery as these specialist are the experts and know what they are doing.

Please keep us posted.  I wish you the very best outcome, NH.

Cathy

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Cathy,

All I know at this point is that they keep calling it endometrial cancer and I was told it was range 2-3. My doctor is a gynecologic oncologist and I agree these are hopefully the experts.

It's wonderful to hear that you had one of the more advanced stages and ranges and you are doing well.

As I get further into this and know more about what treatments are being recommended, I would love to talk more with you about your decisions about your treatments.

Thank you again for your kind words and guidance.

Annmarie

(NH25)

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Moli,

thank you so much for your kind words. It means so much. I do not feel so alone after reading all of the wonderful words of advice and comments everyone has written here for me. You ladies seem incredible and I can only hope that I respond as well to my journey as you all have to yours.

Thank you again,

Annmarie

(NH25)

pinky104
Posts: 574
Joined: Feb 2013

 All I ever did was follow my oncologist's orders.  I had the standard treatment for my cancer, which was 6 rounds of chemo, 3 weeks apart.  I had carboplatin and paclitaxel ("Taxol") given to me in a port that was put into my chest.  I had to go back weekly for bloodwork, and at one point, my blood count was so low, I had to have a transfusion.  My cancer was the highest stage possible, stage IVb and my cancer was grade 3, a very aggressive one called Uterine Papillary Serous Carcinoma (UPSC).  In spite of the high stage and grade of my cancer, I have had no evidence of disease since my surgery and chemo ended, and that was 5 years and almost 5 months ago. I figured I'd die from my cancer in all likelihood, but here I am, alive and well.  There is hope!

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi pinky,

thank you so much for sharing your story with me. It is so wonderful to hear and makes it a little easier to believe there is hope. I am so happy to hear that you are doing well.

Thinking good thoughts for you and all of the wonderful women I have met here.

Annmarie

(NH25)

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Hello Annmarie:

Sorry you have to find this site.  However, this is doable.  I went in for a routine hyterectomy and upon my checkup was told that they found cancer and had to go for another surgery for staging.   I was staged at Stage 3a, Grade 2 Endometrial Adenocarcinomo.   It was found in my uterus, cervix and left ovary.   However, that was back in September, 2005 - Ten years ago!   I did have chemo and brachytherapy.   I was told at that time that I wasn't curable but treatable.   I have had several ups and downs, several surgeries, but haven't required chemo since the original time.

I would ask though if they will be also removing your omentum and your appendix.   Mine was removed at my staging.  My doctor indicated that these are places for recurrences to occur.

Since I had severe endometriosis my organs and insides are all attached to one another so each surgery takes long just to remove the adhesions. 

The "shock" hits hard at first - I screamed in my pillow and then got in my fighting mode.   Also, it is ok to question the doctors.  Don't ever let them make you feel that you are asking silly questions.   And if something doesn't feel right, seek a second opinion.   I have changed doctors several times until I found a good fit for me.   

This site has helped me tremendously with questions I should ask.  Also, don't research too much on the internet.  You can get some very old and outdated information which can scare the crap out of you.   One of the posters on these boards recommended some current sites like the NICC?   I can't remember at the moment.

Also, Annmarie, if you are feeling stressed, this is a good place just to vent.  Sometimes we don't want to worry our loved ones.

My best to you,

Kathy

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Kathy,

nice to meet you. Thank you for the good advice and I do have a running list of questions to ask when I go in for my surgery in a few day. I will add the questions you suggested.

I'm so happy to hear that you have had successes over the last 10 years since you were first diagnosed. I appreciate you sharing.

I'm currently doing ok, I guess. Trying to follow the advice I got from many ladies here, which is to breathe and take it one step at a time...get through the surgery.

Thank you again for your kind words.

Annmarie (NH25)

ncg007
Posts: 136
Joined: Nov 2015

Annmarie,

Welcome to this site, sorry that you needed to join.  Not much I can add in addition to what the others have already said.  Except do take it one step at a time or indeed you will be overwhelmed and worry about nothing.  Wishing you a successful surgery and if you do find you need additional treatment, I can't stress enough how important it is to get multiple opinions no matter even if you like your initial doctors.

Nancy

NH25's picture
NH25
Posts: 13
Joined: Feb 2016

Hi Nancy,

thanks for the advice and the good suggestions. Everyone on here has been wonderful so far. Wish we were all meeting under better circumstances!

Thanks again,

Annmarie

(NH25)

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

Hi Annmarie and welcome to this great board of women. Sorry for the need though.

The only thing I might add to what others have said is to perhaps consider an anti-anxiety med. I have never been one to take "stuff" but I was glad I listened to this advice for the beginning of my journey. Lorazapam worked well for me. Just a very small dose and it has a calming effect but doesn't make you loopy. My doctor gave me three refills but I haven't needed them so far. So, just to have them when the out of the blue anxiety hit was very helpful for me.

Good luck in your journey and please reach out for anything! Someone will have an answer.

Love and Hugs,

Cindi

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

 

and am wishing you the VERY best outcome tomorrow with your surgery.  I hope it goes as smoothly as possible and that you recover quickly.  You will get through this, I promise- and there is light at the end of the tunnel. 

Please keep us informed of your progress, Annmarie.

Bless You,

Cathy 

ConnieSW
Posts: 1545
Joined: Jun 2012

good luck.  Will be sending lots of positive thoughts your way.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I hope your surgery went well, AnnMarie!

I too am contemplating surgery in the very near future.  Pathology report from D&C indicates high-grade endometrial adenocarcinoma.  I realize that you don't really know what you are dealing with until surgery, but what does the "high-grade" on this pathology report indicate. Does that mean that it's most likely more invasive?  Also, does anyone have any recommendations for gyn/oncologist in Philly area?  I have appointments with doctor at Cooper MD Anderson and Fox Chase but would appreciate any input anyone might have. 

Sorry to have to join this club, but seems like a great bunch of gals.  Too bad under such circumstances Frown

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

I am Eldri, 63, and was diagnosed with Stage II, Grade 3 (high grade) UPSC last September.  It is an especially aggressive form of endometrial/uterine cancer.  Welcome to our exclusive club where nobody WANTS to be a member - LOL!  Sorry I can't help with any doctor choices since I'm in Wisconsin but I've heard that MD Anderson is a first class place.  I know other ladies on this board have been there.

Please stay with us and let us know how your journey is going.  As you said, this IS a "great bunch of gals."

Love,

Eldri

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I am at M.D. Anderson with UPSC.  I am five years out from chemo.  I developed UPSC in July 2009.  I would recommend M.D. Anderson to anyone.  My Dr. is Kathleen Schmeller, with Dr. Karen Woo as head of the department.  All of the dr.'s there are good, but I like those two the best.  Let us know if we can help!  Best Debra(Jo)

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

Hey CheeseQueen.  Welcome.

High grade does not mean it is more invasive, just more aggressive.  I have always believed the cancer can only be staged after they operate.  The stage determines how far it has spread.  Maybe this will help for uterine cancer:  

http://www.cancer.net/cancer-types/uterine-cancer/stages-and-grades

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Yes, too bad to meet under these circumstances but at least we have met!  Welcome.  The wonderful thing about this board is that whatever questions you may have, the odds are good that someone will have an answer or suggestion for you because they've had the same question or experience.  And always, great support.  Feel free to ask about anything, and I do mean anything!

Chris

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