Recently Diagnosed with Uterine Cancer

StaciLynn
StaciLynn Member Posts: 41 Member

Hi.  My name is Staci and I am 59 years old.  I was just told this week that I have uterine cancer and am having a difficult time accepting the news.  This all started about two months ago when I felt something wasn't right so I went to my doctor who advised me to have an abdominal and pelvic sonogram.  The abdominal sonogram was normal but the pelvic sonogram showed I had a thickened endometrial lining that was a little over 17 cm, which is reason for concern, so I went to see a GYN that immediately advised having a biospy performed and I opted to have a D&C in a hospital where I would sleep thought the procedure, as I heard being awake for a uterine biopsy could be painful and I already have a problem with anxiety.  During the procedure, two polyps were removed and the hope was that everything would be fine and the polyps were the cause for the thickened lining, yet I just found out abnormal cells were found and I was told I had a sarcoma, which translates as cancer.  I think even the doctor was surprised at these findings since I had no post menopausal bleeding, and that is usually a very big indicator when uterine cancer is present.  Anyway, I am now being referrred to a GYN/Oncologist and am going to need to undergo a hysterectomy in hopes of cure.  I was told this was an early stage cancer, but in reality, there is no real way of knowing for sure until the surgery is performed and the cancer is staged.  I am in a total state of panic over all of this since I really never expected to hear this news.  On the initial pelvic sonogram report, it stated a few possibilities and I thought or expected that the worst I may hear is I had hyperplastia, putting me at risk for cancer, but never expected this to actually come back as cancer, even though my endometrial lining was abnormally thick.  I would appreciate any positive feedback from anyone reading my letter who can offer some encouraging words or has been though what I am going through now.  I just joined this forum today, hoping maybe I could meet new people that could relate to what I am feeling and maybe make me feel better about things since I am feeling pretty down right now.  Thanks in advance for everything!

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Comments

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited August 2017 #2
    Hi Staci

    We've all been through what you are going through now.  I'm your age. I was diagnosed with Stage 3c, Grade 3 uterine cancer in March 2016 and completed my frontline therapy in October 2016. Try to take one day at a time. Find you the best gyn/onc you can. You're right, they can't Stage you until after surgery. We'll be there for you through your journey. I'm sure other more eloquent sisters will be jumping in soon. You are not alone. 

  • Soup52
    Soup52 Member Posts: 908 Member
    Staci, welcome to our group!

    Staci, welcome to our group! I'm so sorry you are going through this. We have all been there and will be here for you through every step. My cancer journey started the summer of 2015 at age 62. Like cheesequeen mine also was found to be 3C3. As of last July 2016 I have been clear. There is hope! My prayers are with you. Feel free to always vent and voice your concerns and questions.

  • MAbound
    MAbound Member Posts: 1,168 Member
    Take a breath

    Hi StaciLynn! So glad that you found us, but sorry that you needed to. This forum was a such a big help to me when I was where you are last year. The information, understanding, and support here really helped to calm me down and get me through what I had facing me and hopefully we can do the same for you. It's overwhelming, but doable.

    The first piece of advice, besides researching the gyn/oncologists available to you like Cheese Queen recommended, is to start getting copies of any records generated as you go along and to have someone to go with you to your appointments to be your 2nd set of ears and memory. There's going to be a lot coming at you when you aren't necessarily going to be in the best place emotionally to absorb and retain it all. Take them right into the exam room with you and let the dr's know that they're your advocate. They will most likely welcome such a person being there for you.

    Secondly, take a moment and just breath. It's going to seem like you aren't getting answers or treatment fast enough and waiting for appointments and results won't be easy. It's the norm, though, so prepare yourself for that and use the time to just live your life in the meantime. 

    Good luck to you and remember this is a safe place for you to come with anything you need.

     

  • MAbound
    MAbound Member Posts: 1,168 Member

    Hi Staci

    We've all been through what you are going through now.  I'm your age. I was diagnosed with Stage 3c, Grade 3 uterine cancer in March 2016 and completed my frontline therapy in October 2016. Try to take one day at a time. Find you the best gyn/onc you can. You're right, they can't Stage you until after surgery. We'll be there for you through your journey. I'm sure other more eloquent sisters will be jumping in soon. You are not alone. 

    Disagree

    CQ...you are such a helpful presense on this board! I totally disagree that you aren't eloquent. What you've shared here has helped more than you know!  

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited August 2017 #6
    Hi, Stacilynn

    welcome to the club no one wants to belong to.  You have found a great places to come to.  The ladies here are great with advice, information and support.  This is also a place to come when you need to vent.  Everyone here will listen.  Like others have said, take everything one step at a time.  Waiting is a big part of this game, waiting for tests, waiting for,results.  You will surprise yours of with how strong you are.  What every happens, there is always hope.

    Hugs and prayers, Lou  Ann

  • Kvdyson
    Kvdyson Member Posts: 789
    edited August 2017 #7
    I am so sorry to hear of your

    I am so sorry to hear of your diagnosis. I recall being in your shoes. It is a very scary time but please know that you will have all the support that you need from us. 

    What kind of hysterectomy will you be having? Mine was a "TAH-BSO" with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal after the surgery.

    The type, stage and grade of the cancer tumor will be very important to know. My final diagnosis was uterine carcinosarcoma, stage 1b, grade 3. There are many different types of uterine cancers.

    The information about the tumor will determine your treatment plan. My front-line treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment at the end of May 2016 and had my first clear scan showing no evidence of disease or "NED" in June 2016.

     

    At this early stage, I recommend that you consider collecting copies of all your pathology and surgery reports for your files. They will come in very handy to refer back to and if you decide to get a 2nd opinion.

    Also, consider taking a recorder with you to appointments or find out if your cell phone has an app to record them. There may be a lot of important information discussed and you don't want to miss anything. I listened to my recordings again a few months afterwards and realized that I had missed some very important things the gyn-onc had said at the time.

    I hope this information helps you. Good luck to you. You can do this and we will be here to support you! Wishing you peace and strength, Kim

  • Cass83
    Cass83 Member Posts: 151 Member
    welcome

    Welcome to our group. I don't think I could add anything that hasn't already been said. The ladies here helped me when I was in your shoes and I know you will find the support you need from us. Take one day at a time. That is the only way to go. :)

  • hopeful56
    hopeful56 Member Posts: 73
    Hi Staci:

    Hi Staci:

    My name is Sandra and I am new to this support group too.  I had a similar situation as you, just started to spot one day and went through the same tests.  I am now at home recovering from my hysterectomy.  I just had it Wednesday.  I am just glad to have that part over with.  I am able to get around a little sore, motrin is really working for me.  I had the robotic procedure.  All I know so far is my sentinel nodes were clean.  The final pathology will be in 3 weeks.

    When I first got the news, I was scared and anxious.  I had already started to reseach all about uterine cancer.  What I can suggest is when you see the surgeon oncologist, get all your questions answered, but most of all feel confident and secure that you can trust them with your life.  After I  met the surgeon I felt more at ease  and was ready for the surgery.  

    The ladies on this support group have really given my strength reading their stories and sharing their experiences. 

    Know that you will get support from the wonderful ladies on this support group.

    Sandra

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Hi Staci,

    Hi Staci,

    Welcome to our board. You have come to the right place for support and understanding.  I agree with the ladies above. Take this one day at a time. This is the hardest part of the journey. Lots of waiting and not knowing what comes next. It is a must to have an oncology gyn for your surgery so I'm glad you are going to see one.

    Please come back and let us know what you find out. We will be here for you.

    Love and Hugs,

    Cindi

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    Hi everyone.  I am so

    Hi everyone.  I am so honoroed to have received the responses that I have gotten from all of you since I was realy feeling so alone very sorry for myself.  I am going to try to respond to each and everyone of you that wrote but first wanted to just write a general response.  I was actually out all day today at two different parties, which in itself was hard for me to do since at first I just wanted to stay home and sulk, but was advised to try to live as normal a life as possible and not dwell on my diagnosis, just taking one day at a time.  Easier said than done, but I am trying.  Never in a million years did I dream I would be diagnosed with cancer and it is difficult even saying the word, but that's my situation.  I made one mistake in my post by saying I was diagnosed with a sarcoma, since it was actually a carcinoma, which is still uterine cancer either way.  I met with my GYN on Friday and went over the report with him and had my husband there with me in case I missed something or something just didn't sink it the right way.  I have an appointment to meet with a GYN/Oncologist on September 1st, but from what I was told and what the report read, so far it appears I have an early stage cancer with the cells being well differentiated, which I was told is a good thing if I have to have cancer.  I do not know for sure what type of hysterectomy will be performed, but do know for sure I am going to need a hysterectomy and will discuss the options with the oncologist.  I appreciate all the support given from all of you and am not going to address each of you separately. Thanks for welcoming me into the group that nobody wants to be in, but I am grateful I have found it since I am the type of person that really does need support and encouraging words to help me get through this.

  • StaciLynn
    StaciLynn Member Posts: 41 Member

    Hi Staci

    We've all been through what you are going through now.  I'm your age. I was diagnosed with Stage 3c, Grade 3 uterine cancer in March 2016 and completed my frontline therapy in October 2016. Try to take one day at a time. Find you the best gyn/onc you can. You're right, they can't Stage you until after surgery. We'll be there for you through your journey. I'm sure other more eloquent sisters will be jumping in soon. You are not alone. 

    Hi CheeseQueen57.  It is nice

    Hi CheeseQueen57.  It is nice to meet you, even though it may not be under the best of circumstances.  It is nice to know I am not alone and there are others like yourself that understand what I am feeling and going through.  Are you now cancer free?  Was going through the therapy used to treat you very difficult?  While I was told it is believed my cancer was found at an early stage, I know there is no way of knowing as an absolute fact until the surgery is done and I am staged.  I am not only afraid of the surgery, but of any treatments like chemotherapy since just the thought of it makes me nauseous, but I am just going to have to take one step at a time and hope for the best.  Thank you for writing since I really do appreciate it and will be in touch.

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    Soup52 said:

    Staci, welcome to our group!

    Staci, welcome to our group! I'm so sorry you are going through this. We have all been there and will be here for you through every step. My cancer journey started the summer of 2015 at age 62. Like cheesequeen mine also was found to be 3C3. As of last July 2016 I have been clear. There is hope! My prayers are with you. Feel free to always vent and voice your concerns and questions.

    Hi Soup52.  Thank you for

    Hi Soup52.  Thank you for welcoming me to the group.  I am happy to hear that you have been clear and really hope and pray you stay that way.  I know many people survive this kind of cancer and there is a lot of hope, but it is all new to me, so of course my initial reaction was all doom.  It is nice to have a place I can vent to with people that understand how I am feeling.  Thank you for writing and it was nice to hear you are doing well since that is encouraging.

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    MAbound said:

    Take a breath

    Hi StaciLynn! So glad that you found us, but sorry that you needed to. This forum was a such a big help to me when I was where you are last year. The information, understanding, and support here really helped to calm me down and get me through what I had facing me and hopefully we can do the same for you. It's overwhelming, but doable.

    The first piece of advice, besides researching the gyn/oncologists available to you like Cheese Queen recommended, is to start getting copies of any records generated as you go along and to have someone to go with you to your appointments to be your 2nd set of ears and memory. There's going to be a lot coming at you when you aren't necessarily going to be in the best place emotionally to absorb and retain it all. Take them right into the exam room with you and let the dr's know that they're your advocate. They will most likely welcome such a person being there for you.

    Secondly, take a moment and just breath. It's going to seem like you aren't getting answers or treatment fast enough and waiting for appointments and results won't be easy. It's the norm, though, so prepare yourself for that and use the time to just live your life in the meantime. 

    Good luck to you and remember this is a safe place for you to come with anything you need.

     

    Hi MAbound.  I have been

    Hi MAbound.  I have been trying to do exactly what you suggested in living my life as best as I can as the waiting process begins.  First it was waiting to hear the results of my pelvic songoram, which I found out about pretty fast, but then it was waiting to have my D&C scheduled, since there were a few delays along the way until that way done. I was so sure everything was going to be okay after that, but then I got the call that everyone dreads hearing.  I followed through with going to my GYN, getting a copy of my records and spending some time going over the report with him, as he explained in detail what the patholigy report meant to me.  I am scheduled to meet with a GYN/Oncologist the beginning of September, so there will be more waiting until I see him, but I know this is a process and it is going to be a journey that will not happen overnight.  It is nice that I found this forum where I could get the chance to talk with others who have been though what I am first going through now.  I actually started looking for support groups almost immediately after getting my diagnosis and as fortunate that I was able to find this one and am happy I am already getting responses to my introduction that I posted.

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    edited August 2017 #15
    Lou Ann M said:

    Hi, Stacilynn

    welcome to the club no one wants to belong to.  You have found a great places to come to.  The ladies here are great with advice, information and support.  This is also a place to come when you need to vent.  Everyone here will listen.  Like others have said, take everything one step at a time.  Waiting is a big part of this game, waiting for tests, waiting for,results.  You will surprise yours of with how strong you are.  What every happens, there is always hope.

    Hugs and prayers, Lou  Ann

    Hi Loy Ann.  Thanks for the

    Hi Loy Ann.  Thanks for the welcome, even though you are right in saying this is the club nobody wants to belong to.  I realize I need to just take one step at a time and the first step was accepting my diagnosis since I was sort of in denial at first, even though I did fear I would get bad news, mostly becasue my pelvic songoram showed a very abnormal thickening and I knew that was not a good thing from all the reading I did even before getting my diagnosis.  Sometimes maybe I read too much but I do like to be informed and prepared.  I do think the waiting part is very hard, but it is all part of this and I just have to accept that I am not going to get instant answers.  How are you doing?  I hope you are doing well and hope you are now cancer free. 

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    Lou Ann M said:

    Hi, Stacilynn

    welcome to the club no one wants to belong to.  You have found a great places to come to.  The ladies here are great with advice, information and support.  This is also a place to come when you need to vent.  Everyone here will listen.  Like others have said, take everything one step at a time.  Waiting is a big part of this game, waiting for tests, waiting for,results.  You will surprise yours of with how strong you are.  What every happens, there is always hope.

    Hugs and prayers, Lou  Ann

    Sorry, I spelled your name

    Sorry, I spelled your name wrong as I raad back my letter to you since I meant to type Lou Ann, but sometimes I type too fast and make mistakes when I type, although even using spell check, it won't always pick something up, especially if it is a name I am spelling wrong.

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    StaciLynn said:

    Sorry, I spelled your name

    Sorry, I spelled your name wrong as I raad back my letter to you since I meant to type Lou Ann, but sometimes I type too fast and make mistakes when I type, although even using spell check, it won't always pick something up, especially if it is a name I am spelling wrong.

    Sorry, I did it again, in

    Sorry, I did it again, in typing the word read.  it is kind of late now and maybe I am just tired, but I saw you had written in addition to several other people and I really wanted to respond to everyone and thank then for getting back to me and responding to what I wrote.

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    Kvdyson said:

    I am so sorry to hear of your

    I am so sorry to hear of your diagnosis. I recall being in your shoes. It is a very scary time but please know that you will have all the support that you need from us. 

    What kind of hysterectomy will you be having? Mine was a "TAH-BSO" with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal after the surgery.

    The type, stage and grade of the cancer tumor will be very important to know. My final diagnosis was uterine carcinosarcoma, stage 1b, grade 3. There are many different types of uterine cancers.

    The information about the tumor will determine your treatment plan. My front-line treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment at the end of May 2016 and had my first clear scan showing no evidence of disease or "NED" in June 2016.

     

    At this early stage, I recommend that you consider collecting copies of all your pathology and surgery reports for your files. They will come in very handy to refer back to and if you decide to get a 2nd opinion.

    Also, consider taking a recorder with you to appointments or find out if your cell phone has an app to record them. There may be a lot of important information discussed and you don't want to miss anything. I listened to my recordings again a few months afterwards and realized that I had missed some very important things the gyn-onc had said at the time.

    I hope this information helps you. Good luck to you. You can do this and we will be here to support you! Wishing you peace and strength, Kim

    Hi Kim.  Thank you for the

    Hi Kim.  Thank you for the advise you gave me.  It was very helpful as I realize because of my emotional state, I may miss things or not understand certain things that are said to me.  When I went to see my GYN on Friday and went over my report, I took my husband with me becasue I felt someone should be with me with a second set of ears to I understand and interpret everything correctly.  From what I was told, this was an early catch and it is believed my cancer was detected at an early stage. I never had bleeding, which is uusually present, even in early stage uterine cancer, but the reason why further tests were done was because my endometrial lining was way too thick.  My GYN feels I am a good candidate for a laproscopic hysterectomy, but ultimately the decision will be made or at least presented to me by the GYN/Oncologist I will be seeing on September 1st.  I know some people feel an abdominal surgery is the way to go, but of course if possible, I prefer to have laproscopic surgery if possible, as long as the doctor feels I would do well having the surgery this way based on my initial patholgy report as stated from the D&C that I had.  I know I won't know for sure about needing further treatment until a pathology report is done after my surgery, but the thought of chemothearpy really scares me more than most people can imagine.  Did you get sick from the chemotherapy treatments you had to undergo?  I absolutely hate throwing up and actualy have an intense fear of it, so the idea of possibly needing chemotherapy as part of my treatment really scares me, not to mention just fearing that my cancer could have spread, even though the doctor seems pretty confident that it hasn't but there is no way of knowing for sure at this point.  I know if any abnormal cells are found in even one lyphm node, that would mean having to go through chemotherapy and I really don't even like thinking about that right now. On the positive side, it is wonderful hearing your scans are totally clear and you are cancer free.  I know this type of cancer has a pretty good cure rate compared to other types of cancer and hope you continue to have clean scans and good health.

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    Cass83 said:

    welcome

    Welcome to our group. I don't think I could add anything that hasn't already been said. The ladies here helped me when I was in your shoes and I know you will find the support you need from us. Take one day at a time. That is the only way to go. :)

    Hi Cass83.  Thank you for

    Hi Cass83.  Thank you for welcoming me to the group.  It is nice that people are taking the time to respond to my post and seem to really care.  I know we are all in the same boat and it is nice being able to come to a forum where I could get the support that I need.  I agree I need to just try to take one day at a time and I am hoping and praying for the best outcome.

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    hopeful56 said:

    Hi Staci:

    Hi Staci:

    My name is Sandra and I am new to this support group too.  I had a similar situation as you, just started to spot one day and went through the same tests.  I am now at home recovering from my hysterectomy.  I just had it Wednesday.  I am just glad to have that part over with.  I am able to get around a little sore, motrin is really working for me.  I had the robotic procedure.  All I know so far is my sentinel nodes were clean.  The final pathology will be in 3 weeks.

    When I first got the news, I was scared and anxious.  I had already started to reseach all about uterine cancer.  What I can suggest is when you see the surgeon oncologist, get all your questions answered, but most of all feel confident and secure that you can trust them with your life.  After I  met the surgeon I felt more at ease  and was ready for the surgery.  

    The ladies on this support group have really given my strength reading their stories and sharing their experiences. 

    Know that you will get support from the wonderful ladies on this support group.

    Sandra

     

    Hi Sandra.  I bet your are

    Hi Sandra.  I bet your are relieved that your hysterectomy is over with and that your sentinel nodes were clean.  I hope your final patholigy report comes back clean as well and can imagine how anxious you are to hear the news.  In my particular case, I never had any spotting, which is an early warning sign of uterine cancer.  I was getting some aches and pains here and there, but didn't think much of it, but my doctor knew enough to have me undergo both an abdominal sonogram and pelvic sonogram, which eventually led me to have a D&C, which revealed I had uterine cancer.  Is the robotic procedure done abdominally with the use of special machines to assist in the operation? I know there are different ways of doing hysterectomies and I am still not sure which way mine will be done.  I have had gall bladder surgery and two c-sections, so I know the pain in recovery from any type of abdominal surgery, but a hysterectomy is a whole new ball game, yet I guess it all depends on how it is done and what the patient's pain tolerance is.  Anyway, good luck with everything and please let me know what your final patholigy report is. I will pray that it all comes back clean and you don't need any further treatment, but it is nice to meet you and appreciate you writing.

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    edited August 2017 #21

    Hi Staci,

    Hi Staci,

    Welcome to our board. You have come to the right place for support and understanding.  I agree with the ladies above. Take this one day at a time. This is the hardest part of the journey. Lots of waiting and not knowing what comes next. It is a must to have an oncology gyn for your surgery so I'm glad you are going to see one.

    Please come back and let us know what you find out. We will be here for you.

    Love and Hugs,

    Cindi

    Hi Cindi.  I knew it was

    Hi Cindi.  I knew it was important to have an oncologoy GYN for my surgery and even my GYN, who I really like was the one that suggested that I have an oncology GYN do the surgery even though he could have done it himself, yet he said I really would be better off seeing a specialist in the field since they have more experience working with patients with cancer.  The surgeon I will be seeing did his fellowship at Sloan Kettering Hospital, which specializes in cancer, so I feel pretty confident in his abilitiy, yet I will first be meeting with him on Septemeber 1st and go over my recoreds with him.  I will definitely let everyone know what happens after I meet with doctor since I wil have a lot more information at that point and will at least know what the next step is, which I kind of already know, since I know it is going to be surgery, but at least I will know which type of hysterectomy I will be having and want to see if the oncologist agrees with my GYN in what was said based on the pathology report I received after my D&C.  Thanks for writing and I hope you are doing well and are in good health now.