Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Recently Diagnosed

denissita
denissita Member Posts: 7
edited December 2014 in Uterine Cancer #1

Hi Ladies,

 

My name is Denise and I got recently diagnosed with endometrial cancer. My oncologist said it's in the early stage, however has not assigned a stage yet. As you all are aware I am extremely scared and concerned. I am 32 years old, I do not have any children. There are days that I say its fine I will be okay with the hysterectomy and days that I would like to try something else. My doc said a hysterectomy would be the best way to treat the cancer. The other options would take months to do and they are not guaranteed. My heart aches and I ask myself why me? What did I do in live to deserve this... Making a decision is going to be hard but I would like tobdonit soon because I am scared cancer and spread. Adoption is also a possibility in the Future. Am I being selfish by taking the easier route and just having the hysrectomy and thinking about children for later on in life. II just want to be okay. am getting treated at Sloan Kettering in NYC.  I am so afraid of what I will feel after the surgery. Will I be depressed, will I be able to handle my decision. 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    Denise,
    First off, I am so

    Denise,

    First off, I am so sorry to see you have had to find us, but the women here are here to help. With that said, be sure you are seeing a gynecological oncologist.  If you are at Sloan, I suspect you are, but it never hurts to ask.  They specialized in the below the belt cancers and that is who you want to do your surgery.  (NEVER hesitate to ask for a second opinion)

    There is no easy route here, so please don't beat yourself up.  I do not have any children, but I am a little older than you.  When I was told I had cancer I couldn't help but wonder how I would feel if I had been younger and been given such news, which would mean I would not have the ability to have children.  I am sorry you were given such news and would also recommend speaking with your priest/pastor/rabbi (if you are religious) or a counselor (perhaps through your employee assistance program) to work through your feelings.  I do know there are a few other young women out here who have had to face the same conflict and I hope they post or send you a private message.

    Cancer is scary and everyone responds to treatment differently, so be careful of what is out there on the world wide web. 

  • Ardnasnit
    Ardnasnit Member Posts: 29
    Hi Denise,

    Welcome to the

    Hi Denise,

    Welcome to the Peach Sisterhood! I am sorry that you had to find us, but this is a great site for support.

    I was diagnosed with endometrial cancer at the end of May. I am 39 and I like you do not have any children. I was given the following treatment options to prolong my fertility through hormone treatment or have a hysterectomy. This was a hard decision for me as well because I have always dreamed of having kids, but I also wanted the cancer out of my body. This is such a personal decision and is hard for someone else to give advice on. Before my surgery, I also wondered if it was being selfish to go through with the surgery. I researched the hormone treatment and the surgery. I then talked to a friend and a couple of my sisters to see if I had thought through everything. I was a little surprised when one of my sisters told me she thought it was being selfish not to have the surgery. I don’t say this to confuse you more I am saying it just to let you know how those who love you might think of it. I also knew that if I decided to have children in the future there was also adoption and being a foster parent. There are so many children looking for a family and I knew that I could be that family. So to answer your question, no it is not selfish to have the surgery and think about having kids in the future. At the moment you need to think about your health and what is the best way to get and stay healthy. I decided to have the surgery because for me personally I knew that was the best way not to stress out over whether it is spreading or not and I wanted it out.

    Like NoTimeForCancer, I would definitely suggest that you find someone to talk to and make sure you are seeing a gynecologist oncologist. Also don’t be too hard on yourself, you have a lot of hard decisions to make and being too hard on yourself will just make it harder.

    Please feel free to contact me if you have any questions or just want to talk. I will be happy to help in any way I can.

    Sandra

  • It happened to Me
    It happened to Me Member Posts: 206
    Welcome Denise

    Sorry you had to find this board but glad you did since your diagnosis.  I'm 53 and was 51 at time of diagnosis.  I don't have children either.  I was never blessed with them.  I came to terms with that a long time ago.  I, too, don't feel you are being selfish.  It's your body.  Consider all your options, talk to people you trust, get a second opinion and third if you would feel better.  Whatever you decide is what is right for you.  No regrets.  Regrets only lead to pain.  I don't know what I would of done if I were in your shoes.  You are amongst friends and sisters now, so come back often if you need to.  We will cry or laugh with you and these ladies are great at encouragement.

    Jeanette

  • pinky104
    pinky104 Member Posts: 574

    I met someone who had cancer at a young age.  Her doctor removed her cancer and left the remainder of her uterus so she could have kids.  She did get pregnant and have a child.  When I met her, she was about to go for surgery again as her cancer had returned many, many years later.  At that point, she was glad she'd had her son, but she was regretting her original decision not to have a hysterectomy at that time.  

    I always had heavy, difficult periods.  I spoke to an OB/GYN when I was in my thirties, and he recommended a hysterectomy.  I was divorced at that time and had hopes of finding a new husband and having kids.  I did find a new husband, one who already had 5 kids, but I never did get pregnant.  I could've saved myself a lot of trouble if I'd just listened to that doctor back then.  Not having had kids IS a risk factor for getting uterine cancer.  

    I recommend getting the hysterectomy done and over with as long as you're not opposed to adopting or being a foster mom. It's nice knowing it's out of you, and you have better odds that way.  I had stage IVb UPSC, a very aggressive cancer, and I'm now 4 years and 7 months out from surgery.     

  • Abbycat2
    Abbycat2 Member Posts: 644
    Ardnasnit said:

    Hi Denise,

    Welcome to the

    Hi Denise,

    Welcome to the Peach Sisterhood! I am sorry that you had to find us, but this is a great site for support.

    I was diagnosed with endometrial cancer at the end of May. I am 39 and I like you do not have any children. I was given the following treatment options to prolong my fertility through hormone treatment or have a hysterectomy. This was a hard decision for me as well because I have always dreamed of having kids, but I also wanted the cancer out of my body. This is such a personal decision and is hard for someone else to give advice on. Before my surgery, I also wondered if it was being selfish to go through with the surgery. I researched the hormone treatment and the surgery. I then talked to a friend and a couple of my sisters to see if I had thought through everything. I was a little surprised when one of my sisters told me she thought it was being selfish not to have the surgery. I don’t say this to confuse you more I am saying it just to let you know how those who love you might think of it. I also knew that if I decided to have children in the future there was also adoption and being a foster parent. There are so many children looking for a family and I knew that I could be that family. So to answer your question, no it is not selfish to have the surgery and think about having kids in the future. At the moment you need to think about your health and what is the best way to get and stay healthy. I decided to have the surgery because for me personally I knew that was the best way not to stress out over whether it is spreading or not and I wanted it out.

    Like NoTimeForCancer, I would definitely suggest that you find someone to talk to and make sure you are seeing a gynecologist oncologist. Also don’t be too hard on yourself, you have a lot of hard decisions to make and being too hard on yourself will just make it harder.

    Please feel free to contact me if you have any questions or just want to talk. I will be happy to help in any way I can.

    Sandra

    Denise, I wish this was not happening to you.

    Denise, if I had a magic wand you, at such a young age, wouldn't be dealing with any serious illness at all. That is how we all believe it should be, but sadly life is unpredictable. We can influence and even perhaps control some things in our  lives, but much of it is outside of our control, as you and I are painfully aware. You must take care of your health, first and foremost. No Time and Sandra have given you great advice. I don't know how you can receive proper treatment without having a hysterectomy. It is not until your female organs are removed that a true diagnosis is made from a pathology assessment. My doctor said that he thought I had a stage 1 cancer that is curable, but that was not the case. The pathology report showed a much worse scenario, with a poor prognosis. But I am 30 years older than you and have lived a wonderful life.  Without your life, you can't be a Mom, whether to your own biological children or to adopted or foster children. Seek a second opinion or a third opinion if needed.

    Best wishes to you in whatever you decide.

    Cathy

     

     

     

     

  • denissita
    denissita Member Posts: 7
    thank you

    Ladies, thank you All for making me feel better. It was truly hard to speak to someone without then having gone or be going through with what I am. I am currently seeing a gynecologist oncologist at Sloan Kettering. This is the second doctor I see and well the same recommendations were given. My only concern was not regretting my decision in the future.  I appreciate all your concerns and you guys made me feel better.  i know that I am not alone and I am glad to have messaged you. I am fine with adopting. I will be honest with all of you when I found out I had cancer I cried for days and during all this time I said its my life before anything I will get the surgery. I then went to the oncologist and I mentioned what the statistic were of IVF and so on and she is told me that the percentage I mentioned is a lot for someone who wants to have a child. That made me feel horrible like I was being a bad person or selfish and that's where my doubts came in. I know her intentions were not this but she wanted give me all the information I needed. 

    Can you ladies tell me what did you guys feels after the surgery. Emotionally and physically how radical was the change. 

    Again, I want to thank you all for your time. I must admit some of your comments brought a smile to my face, something that I have not done in days.

     

     

  • AWK
    AWK Member Posts: 364
    denissita said:

    thank you

    Ladies, thank you All for making me feel better. It was truly hard to speak to someone without then having gone or be going through with what I am. I am currently seeing a gynecologist oncologist at Sloan Kettering. This is the second doctor I see and well the same recommendations were given. My only concern was not regretting my decision in the future.  I appreciate all your concerns and you guys made me feel better.  i know that I am not alone and I am glad to have messaged you. I am fine with adopting. I will be honest with all of you when I found out I had cancer I cried for days and during all this time I said its my life before anything I will get the surgery. I then went to the oncologist and I mentioned what the statistic were of IVF and so on and she is told me that the percentage I mentioned is a lot for someone who wants to have a child. That made me feel horrible like I was being a bad person or selfish and that's where my doubts came in. I know her intentions were not this but she wanted give me all the information I needed. 

    Can you ladies tell me what did you guys feels after the surgery. Emotionally and physically how radical was the change. 

    Again, I want to thank you all for your time. I must admit some of your comments brought a smile to my face, something that I have not done in days.

     

     

    Denise my heart goes out to you!

    i was fifty at diagnosis and already had my family through marriage.  I can't imagine how I would have felt much younger.  I can tell you that I always wanted children and learned that families come in all different ways.  Most of us writing here had the full hysterectomy along with removals of tubes, ovaries, in my case all pelvic lymph nodes too.  I swear the run up to the surgery was the most stressful.  After surgery I learned that I do laugh a lot in my life, it hurt!  Have a pillow handy for the ride home and roughly the next two weeks to keep over your incision site when sitting, laughing, sneezing, coughing etc.   It makes all of that much easier!  For me the emotional transition after surgery wasn't that bad, mainly because I was focused on doctors appointments and getting ready for chemo etc.  The emotional journey has been much harder lately but that is for other reasons.  The physical recovery I don't recall as being that bad; I walked as much as I could starting out at one block then up to a mile plus.  Stay hydrated, be kind to yourself, be open to the experiences and moments of grace around you and it is okay to have bad days too.  I am now 22 months into my fight and am grateful for the amazing experiences I have had because of my cancer.  Stay strong, you can do this.  Hugs - Anne

  • denissita
    denissita Member Posts: 7
    AWK said:

    Denise my heart goes out to you!

    i was fifty at diagnosis and already had my family through marriage.  I can't imagine how I would have felt much younger.  I can tell you that I always wanted children and learned that families come in all different ways.  Most of us writing here had the full hysterectomy along with removals of tubes, ovaries, in my case all pelvic lymph nodes too.  I swear the run up to the surgery was the most stressful.  After surgery I learned that I do laugh a lot in my life, it hurt!  Have a pillow handy for the ride home and roughly the next two weeks to keep over your incision site when sitting, laughing, sneezing, coughing etc.   It makes all of that much easier!  For me the emotional transition after surgery wasn't that bad, mainly because I was focused on doctors appointments and getting ready for chemo etc.  The emotional journey has been much harder lately but that is for other reasons.  The physical recovery I don't recall as being that bad; I walked as much as I could starting out at one block then up to a mile plus.  Stay hydrated, be kind to yourself, be open to the experiences and moments of grace around you and it is okay to have bad days too.  I am now 22 months into my fight and am grateful for the amazing experiences I have had because of my cancer.  Stay strong, you can do this.  Hugs - Anne

    Thank you Anne.  I have been

    Thank you Anne.  I have been moving more and more go towards getting the hysterectomy. How did the chemo go? I was told that after surgery they would know if I need chemo or not. I am also afraid of its side affects. Thank you for sharing with me. 

  • AWK
    AWK Member Posts: 364
    denissita said:

    Thank you Anne.  I have been

    Thank you Anne.  I have been moving more and more go towards getting the hysterectomy. How did the chemo go? I was told that after surgery they would know if I need chemo or not. I am also afraid of its side affects. Thank you for sharing with me. 

    No problem and remember it is all your choice

    I had six rounds of carboplatin / taxol; one every three weeks.  It was like having a bad flu for a few days, body pain then you recover and do it all over again.  Everything that happens is temporary and your body really does recover between treatments.  I think though, if you don't mind my taking the liberty, hopefully you may not have to go through chemo.  My doctors kept me focused on what we knew and we were doing at that time.  If you do learn that you need to, reach out and we are all here for you With our various experiences.  Hang tough and good luck with your decision!

  • denissita
    denissita Member Posts: 7
    some fresh air

    I saw and reproductive endocrinologist. She was amazing. She planted out different scenarios and told me that since my cancer didn't seem to be advanced that I should consider a hysterectomy and leaving my ovaries. For two reasons I am young and need the hormones that the ovaries produce and so that at least I have the chance of having a baby in the future. It will have to be carried by someone else but at least I have that option. Tomorrow when my oncologist sees me I will ask her if this is possible. Finally some good news in all of this. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    denissita said:

    thank you

    Ladies, thank you All for making me feel better. It was truly hard to speak to someone without then having gone or be going through with what I am. I am currently seeing a gynecologist oncologist at Sloan Kettering. This is the second doctor I see and well the same recommendations were given. My only concern was not regretting my decision in the future.  I appreciate all your concerns and you guys made me feel better.  i know that I am not alone and I am glad to have messaged you. I am fine with adopting. I will be honest with all of you when I found out I had cancer I cried for days and during all this time I said its my life before anything I will get the surgery. I then went to the oncologist and I mentioned what the statistic were of IVF and so on and she is told me that the percentage I mentioned is a lot for someone who wants to have a child. That made me feel horrible like I was being a bad person or selfish and that's where my doubts came in. I know her intentions were not this but she wanted give me all the information I needed. 

    Can you ladies tell me what did you guys feels after the surgery. Emotionally and physically how radical was the change. 

    Again, I want to thank you all for your time. I must admit some of your comments brought a smile to my face, something that I have not done in days.

     

     

    Denissita, all of it is

    Denissita, all of it is pretty scary.  Surgery?  Scary.  Chemo?  Scary.  Radiation?  Scary.  It does depend on what type of cancer they find that determines what your treatment is.  There is a "typical garden variety type" - Type I (have you ever heard cancer called anything like that?!) and the other more aggressive types we talk about here - Type II (UPSC, MMMT, and a few others - I don't mean to miss any of those others they just don't come it mind so my apologies to all of the ladies here)

    Do you know if there were looking at a robotic (DaVinci) surgery or the traditional large cut to the abdomen.  I suspect as someone young, and hopefully with little to no other health issues, the Da Vinci surgery is what they would recommend.  I think quite a few women of us have had the DaVinci and it was VERY easy.  One night in the hospital and I was cleared to drive in 2 weeks.  I think others will have similar (or less) out of pocket time.  I was amazed as were all my friends.  I think the bloating feeling I had afterwards lasted for longer than that (I remember my underwear feeling like it was cutting in to me) but I wore loose dresses.

    Chemo is scary but doable.  Having done it, I have worked with several people who have come to me to ask about chemo after they have been diagnosed.  I tell them "you can do it, in fact you are going to amaze yourself".  I don't know about MMMT, but UPSC is hormonal so I did have a complete hysterectomy and hormones are not an option for me ever.  But a great friend of mine had her uterus removed ONLY and was able to keep her ovaries - again, it depends on the type of cancer.

    Take a breath.  This is a journey.  Hopefully you can have someone go with you to the doctor and can play your "secretary".  My BFF sat and wrote all the things that were said so I could concentrate on the doctor.  (It is impossible to remember everything you are told)  She also asked questions that she had - that was fine with me. 

    Try not to get too far ahead of yourself here.  This is one step at a time.  Find out what you are dealing with first.  The others things will follow.  We will be here then too.

  • denissita
    denissita Member Posts: 7
    staged

    My oncologist called me and gave me some what good news. She said that I am at stage 1 low risk. I asked her about the possibility of getting a hysterectomy and keep my ovaries, she didn't like that idea. She said that there is a 10%chance of having simultaneous cancer in the uterus and ovaries. Were any of you given that option? She said she would do the surgery that way but not under her recommendation. I also asked her if there was a test to be done to see of the ovaries has cancer she said no. I did some research and it seems like keeping my ovaries would be a great idea because it would give me my hormones I need until I hit menopause, however she didn't think so. Wondering if any of you ladies faced this as well? I am looking into freezing eggs but skeptical about the hormones shots and all other factors. 

     

     

     

    Thanks, have a wonderful day. 

  • denissita
    denissita Member Posts: 7

    Denissita, all of it is

    Denissita, all of it is pretty scary.  Surgery?  Scary.  Chemo?  Scary.  Radiation?  Scary.  It does depend on what type of cancer they find that determines what your treatment is.  There is a "typical garden variety type" - Type I (have you ever heard cancer called anything like that?!) and the other more aggressive types we talk about here - Type II (UPSC, MMMT, and a few others - I don't mean to miss any of those others they just don't come it mind so my apologies to all of the ladies here)

    Do you know if there were looking at a robotic (DaVinci) surgery or the traditional large cut to the abdomen.  I suspect as someone young, and hopefully with little to no other health issues, the Da Vinci surgery is what they would recommend.  I think quite a few women of us have had the DaVinci and it was VERY easy.  One night in the hospital and I was cleared to drive in 2 weeks.  I think others will have similar (or less) out of pocket time.  I was amazed as were all my friends.  I think the bloating feeling I had afterwards lasted for longer than that (I remember my underwear feeling like it was cutting in to me) but I wore loose dresses.

    Chemo is scary but doable.  Having done it, I have worked with several people who have come to me to ask about chemo after they have been diagnosed.  I tell them "you can do it, in fact you are going to amaze yourself".  I don't know about MMMT, but UPSC is hormonal so I did have a complete hysterectomy and hormones are not an option for me ever.  But a great friend of mine had her uterus removed ONLY and was able to keep her ovaries - again, it depends on the type of cancer.

    Take a breath.  This is a journey.  Hopefully you can have someone go with you to the doctor and can play your "secretary".  My BFF sat and wrote all the things that were said so I could concentrate on the doctor.  (It is impossible to remember everything you are told)  She also asked questions that she had - that was fine with me. 

    Try not to get too far ahead of yourself here.  This is one step at a time.  Find out what you are dealing with first.  The others things will follow.  We will be here then too.

    All of it is scary you are

    All of it is scary you are right. Having been diagnosed and now having to make decisions is extremely stressful. You ladies are strong. I am trying to keep strong too but it just seems like everywhere I turn things get more complicated. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    denissita said:

    staged

    My oncologist called me and gave me some what good news. She said that I am at stage 1 low risk. I asked her about the possibility of getting a hysterectomy and keep my ovaries, she didn't like that idea. She said that there is a 10%chance of having simultaneous cancer in the uterus and ovaries. Were any of you given that option? She said she would do the surgery that way but not under her recommendation. I also asked her if there was a test to be done to see of the ovaries has cancer she said no. I did some research and it seems like keeping my ovaries would be a great idea because it would give me my hormones I need until I hit menopause, however she didn't think so. Wondering if any of you ladies faced this as well? I am looking into freezing eggs but skeptical about the hormones shots and all other factors. 

     

     

     

    Thanks, have a wonderful day. 

    well there is a difference

    well there is a difference between STAGE and GRADE.  Stage 1 is good.  It is was caught very early which is unusual.  GRADE determines how aggressive your cancer is.  Grade 1 is low and 3 high.  The aggressive cancers are automatically 3.  (I remember being told mine was Grade 3 and I asked how many Grades there were?) 

    Grade 3 is treated aggressively too. 

    Mine was Stage 1A Grade 3.  I got a complete hysterectomy and the chemo/radiation/chemo sandwich. 

    You have a lot to think about, again, take a breath. i am sure the other women will chime in.

  • Prissy777
    Prissy777 Member Posts: 41
    Hi Denissita

    I too was recently diagnosed although I am much older.  I understand you want to have children, but you need to preserve your life first.   Have the hysterecomy and adopt a child who needs and will love you.