Newly Diagnosed

Editgrl
Editgrl Member Posts: 903 Member
in Uterine/Endometrial Cancer #1

Hi.  It's been a whirlwind couple of days.  I went in to my OB/GYN on Wednesday after noticing a pink discharge Tuesday night.  At 62, I knew this wasn't normal.  OB/GYN did an endometrial biopsy and seeing the amount of tissue she got, she immediately scheduled me for ultrasounds, both external and transvaginal.  Pathology came back Friday with carcinosarcoma.  I immediately got on the internet (wrong thing to do) and freaked out.  OB/GYN said the ultrasounds only showed some small fibroids, nothing else, but I am scheduled for a CT scan on Friday.

My mom had endometrial cancer, and by the time she was diagnosed, it had spread to her lungs.  She passed less than two months after the first indication that something was wrong.  I know I'm not my mom, but I can't help but think about how quickly things progressed.  

I have been alternately scared, defiant, determined, and angry.  I am grateful to have found this board, and I have been reading here voraciously since Friday afternoon.  I am inspired by those ladies who have been battling this disease and sharing their experiences.  You all have been a great help already, and my journey has just begun.  

I have been blessedly healthy up til now, so dealing with the vagaries of the whole health care system and being my own best advocate is going to be a whole new challenge as well.

So much for my planned retirement!

«1

Comments

  • AWK
    AWK Member Posts: 364 Member
    #2
    The early days were the most stressful

    That run up to surgery or treatment was the worst part of the whole journey.  This in looking back after two years of more tests and treatments.  During this time it is important to stay busy, stay in your routines and do things you enjoy. You can do this.  Many of us are living fully and have had amazing experie ces because of, and in spite of, our journeys with Cancer.  

    Ask questions, air out your thoughts or emotions, this is the place for it.  Keeping you in my prayers.  Anne

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #3
    Newly Diagnosed

    Editgrl,

    You just wrote my story as well!  I am 58, retired 1-1-15 and found out I have endometrial cancer on 5/28. Like you, this forum has been the best thing for me since that time.

    Also like you, I have had amazing health to this point.  Not even a cold in the last 5 years. So, it is most definitely a learning experience. So far, I have had the CT/PET scan which shows the cancer hasn't spread. Since I have the aggressive kind, that was more of a relief than I could even begin to explain. I truly thought I had a death sentence handed down. So, now I know there is hope and that if we had to have this darn crappy disease, that at least they have made huge strides to help us.

    I meet my surgeon next Friday. Then, my surgery will be scheduled and I can ultimately find out if anything is in the lymph nodes. Nothing seems to happen fast enough. I'm ready to get this part over with!

    I'm sorry for all of us that had to meet like this! And, I'm more grateful than ever for all of the brave women who have helped us by sharing their stories. 

    By the way, my sister has had thyroid, endometrial and pacreatic cancer. She is the strongest woman I know! We both have Lynch Syndrome which is a genetic mutation that increases our risk for multiple cancer types.  I will say, until I had to face this, I had no idea how it really felt. I don't think anyone can truly understand it until they live it. (I could have done without the understanding!)

    Take care of yourself and I hope you find doctors you are comfortable with. I think that is critical for us.

    Cindi

  • shush_silent
    shush_silent Member Posts: 6
    #4
    What they said...

    I'm so sorry to meet this way.. but glad you, like the rest of us.. found a safe place to speak up...

    I agree with what's already been said.. Cancer use to be a death sentence.. many years ago, we'd call the priest before we'd even notify the rest of the family.. BUT.. science, and experience has brought us a long way! It's positively spooky sometimes to think how far they've come! The hardest part is what happens in your head.

    When I first got diagnosed I was shipped from one specialist to the next and all of them took images of the chest to be certain things didn't spread to the lungs.. so use your experience with your mom to make notes, ask questions, demand answers.. and own your cancer so it doesn't own you!!

    Hoping to hear good news from you in the future.. sending gobs and gobs of good vibes!!

  • cleo
    cleo Member Posts: 144
    #5
    Broken record

    I'm like a broken record.  Only post now to say Grade 3/4. and this is year 8 NED.      Don't research on the internet and defiant, determined and angry worked for me.

    Also healthy.   I was also fortunate with fast diagnosis and treatment.   Hardest thing...the system in control!!         Retirement is great!      Take care.

  • Editgrl
    Editgrl Member Posts: 903 Member
    #6
    AWK said:

    The early days were the most stressful

    That run up to surgery or treatment was the worst part of the whole journey.  This in looking back after two years of more tests and treatments.  During this time it is important to stay busy, stay in your routines and do things you enjoy. You can do this.  Many of us are living fully and have had amazing experie ces because of, and in spite of, our journeys with Cancer.  

    Ask questions, air out your thoughts or emotions, this is the place for it.  Keeping you in my prayers.  Anne

    Keeping busy

    Yes, the waiting to get started with whatever is to come is difficult, but I have been trying to keep busy with my normal routines.  Gardening, cycling, my horse, dancing, movies with friends.  The weekend has been blissfully busy. These things make me happy and keep me centered, and I plan to keep doing them as much and as often as possible going forward.  

  • debrajo
    debrajo Member Posts: 1,095 Member
    #7
    Welcome

    @ Cleo...I just LOVE hearing your kind of "broken record!"   Welcome to the newbies.  I didn't find these boards til I was done with EVERYTHING!  What a differance it would have ment to me to have had the wonderful ladies to talk to!  Whatever you find out you have, whatever the grade or stage, I can assure you someone has the exact same thing, know someone who has, or is a caregiver for someone that has been there and done that on these boards.  Someone is alway here, I'm the night owl!  EVERYTHING is discussed here, nothing is out of bounds. Ask questions even if it sounds silly...it's not.  If you want to ask a private, us the email option.  I am a five year surviver of UPSC, stage 1a, grade c, very agressive.  As the other ladies said the shock of diagnoses, the whys, the fear, and the fact that no one gets in a hurry over our health is something we have all been through...nights are the worst.  Just remember, unless you get hit by a Mac truck coming home from the grocery store, you are not dying today!  There are tons of things to keep living well and happy lives!  Just don't forget to breath...and laugh!  LOL !  Best, Debrajo

  • Cucu me
    Cucu me Member Posts: 213 Member
    #8
    cleo said:

    Broken record

    I'm like a broken record.  Only post now to say Grade 3/4. and this is year 8 NED.      Don't research on the internet and defiant, determined and angry worked for me.

    Also healthy.   I was also fortunate with fast diagnosis and treatment.   Hardest thing...the system in control!!         Retirement is great!      Take care.

    good for you!

    We, the new ones are scare and this forum helps us alot.

    It's very  strange to see how many healthy women, even without symptoms or family history are getting diagnosed with cancer.

    I was healthy, no family history, no anything else,that could cause it.

    In my case I think the huge stress in my job, hormone imbalances and eventually the chronic constipation in my past.

    But who knows....

  • Tikvah
    Tikvah Member Posts: 24
    #9
    TeddyandBears_Mom said:

    Newly Diagnosed

    Editgrl,

    You just wrote my story as well!  I am 58, retired 1-1-15 and found out I have endometrial cancer on 5/28. Like you, this forum has been the best thing for me since that time.

    Also like you, I have had amazing health to this point.  Not even a cold in the last 5 years. So, it is most definitely a learning experience. So far, I have had the CT/PET scan which shows the cancer hasn't spread. Since I have the aggressive kind, that was more of a relief than I could even begin to explain. I truly thought I had a death sentence handed down. So, now I know there is hope and that if we had to have this darn crappy disease, that at least they have made huge strides to help us.

    I meet my surgeon next Friday. Then, my surgery will be scheduled and I can ultimately find out if anything is in the lymph nodes. Nothing seems to happen fast enough. I'm ready to get this part over with!

    I'm sorry for all of us that had to meet like this! And, I'm more grateful than ever for all of the brave women who have helped us by sharing their stories. 

    By the way, my sister has had thyroid, endometrial and pacreatic cancer. She is the strongest woman I know! We both have Lynch Syndrome which is a genetic mutation that increases our risk for multiple cancer types.  I will say, until I had to face this, I had no idea how it really felt. I don't think anyone can truly understand it until they live it. (I could have done without the understanding!)

    Take care of yourself and I hope you find doctors you are comfortable with. I think that is critical for us.

    Cindi

    Cindi,
    you say you are before

    Cindi,

    you say you are before surgery.  I had a radical hysterectomy and two days later I was out at a restaurant with my family eating Thanksgiving dinner.  Not dancing, mind you, but it was robatic and minimal pain.  Just a lot of fatigue.  Take it easy.  Thank goodness your cancer has not spread on the CT/PET.  for me, staging was at and after surgery with pathology.  I had several lymph nodes invovled.  

    Hope nothing is in your lymph system!!!!!

  • AWK
    AWK Member Posts: 364 Member
    #10
    Editgrl said:

    Keeping busy

    Yes, the waiting to get started with whatever is to come is difficult, but I have been trying to keep busy with my normal routines.  Gardening, cycling, my horse, dancing, movies with friends.  The weekend has been blissfully busy. These things make me happy and keep me centered, and I plan to keep doing them as much and as often as possible going forward.  

    You ride?

    My riding has really been great for me since I picked it up again last year.  My doctors fully encourage it Even as my cancer progresses and treatment plans change.  Keep it up as much as you can; my husband will tell you it has been the best therapy/medicine I could ever have.  

    Hugs - Anne

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #11
    Tikvah said:

    Cindi,
    you say you are before

    Cindi,

    you say you are before surgery.  I had a radical hysterectomy and two days later I was out at a restaurant with my family eating Thanksgiving dinner.  Not dancing, mind you, but it was robatic and minimal pain.  Just a lot of fatigue.  Take it easy.  Thank goodness your cancer has not spread on the CT/PET.  for me, staging was at and after surgery with pathology.  I had several lymph nodes invovled.  

    Hope nothing is in your lymph system!!!!!

    Thanks Tikvah

    Thanks for the feedback.  My hope is to have robotic surgery as well. I sure hope I do as well as you did. That is really great news.

    My local oncologist said he doesn't think I will need chemo if this didn't go to the lymph nodes. That would be a relief too! But, one step at a time. I'll see what the GYN/Oncologist says and go from there.  He also said I would get the staging after surgery.

     

  • Editgrl
    Editgrl Member Posts: 903 Member
    #12
    AWK said:

    You ride?

    My riding has really been great for me since I picked it up again last year.  My doctors fully encourage it Even as my cancer progresses and treatment plans change.  Keep it up as much as you can; my husband will tell you it has been the best therapy/medicine I could ever have.  

    Hugs - Anne

    I do.

    Both bike and horse.  My gelding is 26 now and has ringbone in one foot.  I don't ride him very often, and we don't jump anymore, but getting out to the barn and spending time with the horses is always good for my head.  Isn't the quote something like, The outside of a horse is good for the inside of a man (or woman.)?  He's gotten me through divorce and deaths, and I'm sure he will be there for me now.  Glad to know there's another horsewoman here, Anne.

    I do spend more time on my bike, 3-4 hours a week.  I am setting PRs more often than not now, (I had a cancer defiant ride Saturday morning!) and I hope I can continue.  I had plans for several big rides in the fall.  Obviously, those plans are on hold for now, but I won't be off the bike until I can't get on!   

  • Editgrl
    Editgrl Member Posts: 903 Member
    #13
    debrajo said:

    Welcome

    @ Cleo...I just LOVE hearing your kind of "broken record!"   Welcome to the newbies.  I didn't find these boards til I was done with EVERYTHING!  What a differance it would have ment to me to have had the wonderful ladies to talk to!  Whatever you find out you have, whatever the grade or stage, I can assure you someone has the exact same thing, know someone who has, or is a caregiver for someone that has been there and done that on these boards.  Someone is alway here, I'm the night owl!  EVERYTHING is discussed here, nothing is out of bounds. Ask questions even if it sounds silly...it's not.  If you want to ask a private, us the email option.  I am a five year surviver of UPSC, stage 1a, grade c, very agressive.  As the other ladies said the shock of diagnoses, the whys, the fear, and the fact that no one gets in a hurry over our health is something we have all been through...nights are the worst.  Just remember, unless you get hit by a Mac truck coming home from the grocery store, you are not dying today!  There are tons of things to keep living well and happy lives!  Just don't forget to breath...and laugh!  LOL !  Best, Debrajo

    Another nightowl

    Good to hear there's another nightowl here!  And I love what you said:  You are not dying today.  I may make a sign and put it above my bedroom mirror to remind me every morning.  Thank you, Debrajo.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,516 Member
    #14
    Editgrl, welcome.  I am sorry

    Editgrl, welcome.  I am sorry we all have to meet this way, but please know all the lovely ladies are here to listen and help. 

    I am sure it is hard to separate out you from your mother's experience, but as we all know here, you are a statistic of one.  Please try to take a breath.  You are right about it all a whirlwind - especially at first. 

    We are all here for you.

  • AWK
    AWK Member Posts: 364 Member
    #15
    Editgrl said:

    I do.

    Both bike and horse.  My gelding is 26 now and has ringbone in one foot.  I don't ride him very often, and we don't jump anymore, but getting out to the barn and spending time with the horses is always good for my head.  Isn't the quote something like, The outside of a horse is good for the inside of a man (or woman.)?  He's gotten me through divorce and deaths, and I'm sure he will be there for me now.  Glad to know there's another horsewoman here, Anne.

    I do spend more time on my bike, 3-4 hours a week.  I am setting PRs more often than not now, (I had a cancer defiant ride Saturday morning!) and I hope I can continue.  I had plans for several big rides in the fall.  Obviously, those plans are on hold for now, but I won't be off the bike until I can't get on!   

    My guy is a big gelding named Cisco

    He is a thoroughbred rescue and 18.  We do dressage.  If I end up stopping work I already made arrangements to help out in whatever way I can at the stable.  So good for my head.  Other ladies here are into gardening (ro10), swimming (Abbycat) and things that we all really enjoy.  

    I am looking at a surgery next week and the surgeon said he is fine writing me out of work but wants me on the horse as soon as I am physically able to be.  Amazing how the doctors fully support my equine therapy!  

    Hugs,  Anne

  • Hybridspirits
    Hybridspirits Member Posts: 209
    #16
    Editgrl said:

    I do.

    Both bike and horse.  My gelding is 26 now and has ringbone in one foot.  I don't ride him very often, and we don't jump anymore, but getting out to the barn and spending time with the horses is always good for my head.  Isn't the quote something like, The outside of a horse is good for the inside of a man (or woman.)?  He's gotten me through divorce and deaths, and I'm sure he will be there for me now.  Glad to know there's another horsewoman here, Anne.

    I do spend more time on my bike, 3-4 hours a week.  I am setting PRs more often than not now, (I had a cancer defiant ride Saturday morning!) and I hope I can continue.  I had plans for several big rides in the fall.  Obviously, those plans are on hold for now, but I won't be off the bike until I can't get on!   

    keep doing the things you like

    If it helps i am a big bicycle rider and rode my bicycle during my chemo and radiation treatment. My oncologist scheduled my infusions such that i could take a week in Florida and i biked the entire week. I just planned my bicycling around how I felt. I also had a few geat cancer bicycle rides with my firends and that got me motivated to kick this disease. i was diagnosed 11/2012, did my treatment first half of 2013 and now 2 years out and going for my exact two year scan tomorrow. I still bicycle alot as that is my motivator.

     

    Riding a bike or riding a hourse it is wondeful to do what  you like. 

  • Editgrl
    Editgrl Member Posts: 903 Member
    #17
    Thank you all

    for your warm welcome and encouragement.  Your eloquence and generosity in describing your own struggles and victories awes me.  If nothing else, this awful disease has brought me to a place where I find all of you strong brave women.  Hugs to all of you.

  • myn1
    myn1 Member Posts: 2
    #18
    Cucu me said:

    good for you!

    We, the new ones are scare and this forum helps us alot.

    It's very  strange to see how many healthy women, even without symptoms or family history are getting diagnosed with cancer.

    I was healthy, no family history, no anything else,that could cause it.

    In my case I think the huge stress in my job, hormone imbalances and eventually the chronic constipation in my past.

    But who knows....

    new dx. 41 years old

    Hello

    I am 41 years old and like you was very healthy. Thought i was immune to cancer even! But hete i am dx in april 2015. Ive had total hysterectomy with tubes and ovaries removed ad well and started chemotheraphy three days ago. What a ride. Up till now i worked fulltime as a LPN and was really fit. This is all still new and odd to me you know? I just began being symptomatic and this disease made it to 3/30 nodes. No it has not metastasis. Im glad i found this blog.

  • Niki1325
    Niki1325 Member Posts: 2
    #19
    Editgrl said:

    Thank you all

    for your warm welcome and encouragement.  Your eloquence and generosity in describing your own struggles and victories awes me.  If nothing else, this awful disease has brought me to a place where I find all of you strong brave women.  Hugs to all of you.

    Hi everyone. Scared, lonely and overwhelmed.

    Hi to all.  Just diagnosed last week with grade 3 carcinosarcoma.  Next week is full of appointments to clear me for surgery scheduled for the 27th.  I am still in shock.  Reading too much on the internet just depresses me further. My neighbor recommended I join here for support.  And right now it seems like all I have are just stupid questions, like What do I bring to the hospital for a 5 day stay? Who's going to help Dad with Mom? What if I have to go into a rehab facility? And I find I can only talk about this for about 5 minutes, after which I just start losing it.  Is this normal? Thanks ahead of time.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #20
    Niki1325 said:

    Hi everyone. Scared, lonely and overwhelmed.

    Hi to all.  Just diagnosed last week with grade 3 carcinosarcoma.  Next week is full of appointments to clear me for surgery scheduled for the 27th.  I am still in shock.  Reading too much on the internet just depresses me further. My neighbor recommended I join here for support.  And right now it seems like all I have are just stupid questions, like What do I bring to the hospital for a 5 day stay? Who's going to help Dad with Mom? What if I have to go into a rehab facility? And I find I can only talk about this for about 5 minutes, after which I just start losing it.  Is this normal? Thanks ahead of time.

    Hi Nikki:
    Sorry you had to

    Hi Nikki:

    Sorry you had to come to this site and sorry about your diagnosis.  However, it would be great for you to start a new thread so that all of the posters here can respond and support you.   Remember, no questions are stupid.   They are all relevant so ask away.

    Depression is normal, especially at this part of your journey.  You will have many ups and downs.   First of all, stay off the internet unless you are on a reputable site.   Searching for information only gets you scared because most of the stuff is way outdated and has changed in so many ways.

    Questions about hospital stay is bring with you some books or stuff like that (ipad).   After your surgery, the main thing is to make sure you get up and walk as much as you can.  The sooner that you can have your first bowel movement, the quicker they will release you.     I don't know why you would have to go to a rehab facility.    Sorry I can't help you about your Dad and Mom. (unless they have neighbors, church group, friend group, or who ever else they may know to help out.

    My best to you.  I pray that you find answers to all of your quetions.

    Kathy

  • Niki1325
    Niki1325 Member Posts: 2
    #21
    Kaleena said:

    Hi Nikki:
    Sorry you had to

    Hi Nikki:

    Sorry you had to come to this site and sorry about your diagnosis.  However, it would be great for you to start a new thread so that all of the posters here can respond and support you.   Remember, no questions are stupid.   They are all relevant so ask away.

    Depression is normal, especially at this part of your journey.  You will have many ups and downs.   First of all, stay off the internet unless you are on a reputable site.   Searching for information only gets you scared because most of the stuff is way outdated and has changed in so many ways.

    Questions about hospital stay is bring with you some books or stuff like that (ipad).   After your surgery, the main thing is to make sure you get up and walk as much as you can.  The sooner that you can have your first bowel movement, the quicker they will release you.     I don't know why you would have to go to a rehab facility.    Sorry I can't help you about your Dad and Mom. (unless they have neighbors, church group, friend group, or who ever else they may know to help out.

    My best to you.  I pray that you find answers to all of your quetions.

    Kathy

    Thank you Kathy

    Kathy, thank you for your response.  I thought the message board was set up as topics, so I posted under new diagnosis. Have no idea what to post under now.

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