New to this site - need help.

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I have been diagnosed with High Grade Mullerian Carcinoma of the uterus from a phone call with my dr yesterday.  Next Friday my dr will be doing an abdominal hysterectomy and also exploring my abdomen to see if the cancer has spread.  She said on the CT scan my lymph nodes were enlarged and that concerned her.  She will try to take out as much of the lymph nodes as she can unless they are attached to blood vessels.  After surgery chemo once every 3 weeks is what she will do.  I have had a blood transfusion due to severe anemia and I had a GFR of 70 come back on a report so now I am worried it has done something to my kidney's.  I try to take baby steps because if I look at all this together I get so panicked and scared that I will not survive this aggressive cancer.  Couldn't sleep at all last night and I feel so very lost.  Keeping my faith strong has proved to be a challenge after that phone call yesterday.  The bad news keeps coming and no good news ever will come seems to be my thoughts right now.  What ifs are the most horrible things going on in my mind and my brain continues to go without any peace of mind. 

Maryanne

Comments

  • MAbound
    MAbound Member Posts: 1,168 Member
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    Hi

    Hi Maryanne. I'm glad you found us, but sorry that you needed to.

    There are a good number of women here with your kind of diagnosis that will be better able to help you with specifics about it than I can as time goes on (I have stage 3a, grade 3 endometrial adenocarcinoma), but I certainly can identify with the fear and uncertainty you are feeling now. Been there, still doing it at times, but I have no choice but to keep doing what needs to be done! This board is such a blessing because nobody understands like others in the same boat.

    At this point of the game for you, here's what I'd offer for starting advice:

    1. Breath. It's normal to panic at first, but there's plenty of reason not to give in to thinking that the worst is going to happen. There's actually plenty of reason to be hopeful. Spend some time reading past posts here and you'll see that there are plenty of women here that are surviving after treatment of advanced stages of this cancer. We all refer to this journey we're on as a roller coaster because there will be ups and downs on this ride, but this is a disease that can be lived with, just like diabetes is.

    2.) Prepare yourself and your SO's for the long haul. Surgery and recovery, chemo and/or radiation therapy all are going to eat up months of time. Fatigue and overall not feeling like yourself is going to be a challenge to get through. You're already started on a good attitude by recognizing that it's easier to take it one step at a time rather than dwelling on it all at once! That's the key. We'll be here to help you when you need us... it's a safe place to vent when you need to and a good starting place for getting answers to all the questions you're going to have....we can point you in places to look. 

    3). Take  someone with you to your appointments. A lot of information is going to be given to you and it will be hard to process and remember it all on your own, so a second pair of ears and brain really help! Write down all of your questions in a list before you go.

    4.) Get copies of your medical records as they are produced: Surgical and pathology reports, lab work, etc. You may end up seeing multiple doctors as time goes on and you won't regret having these records at hand. Most states have time limits (5-7 years) on how long medical records have to be stored, so you don't want anything to be lost.

    Hope this helps!

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    edited October 2016 #3
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    You will have all the support that you need from us

    Hi Maryanne,  I am so sorry to hear of your diagnosis. I recall being in your shoes just last year. 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 have? My sugery was a TAH-BSO (Total abdominal hysterectomy bilateral salpingo oophorectomy) with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal. The type, stage and grade of your cancer tumor will be confirmed after the sugery and is very important to know. Mine was uterine carcinosarcoma (MMMT), stage 1b, grade 3.

    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 and have had a clear scan showing no evidence of disease or "NED".

     Is your doctor a gyn-onc? They are the experts in uterine cancer so it's a good idea that one is involved in your surgeries and treatments. At this early stage, I recommend planning on getting 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 the recordings again recently and realized that I had missed some very important things the dr. had said at the time.

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

  • LindyLu
    LindyLu Member Posts: 72
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    So sorry

    Hi Maryann, so sorry you have to go through this, but welcome with open arms.  We are here for you and it is scary and overwhelming, for sure.  Life flips upside down and this cancer thing becomes forefront.  I was diagnosed with endometrial cancer, had a total hysterectomy on 8/23 including 16 lymph nodes removal.  Several lymph nodes came back positive at post-op testing, changing my stage to IIIC1 and I am starting chemo this week.  These women have been such a help to me in getting through each step of the process, both physically and emotionally.  I've learned to take one day at a time and hang on to the special moments of each day.  Treatments are not the end, but the beginning of taking your body back.  I found that I am stronger than I had ever thought.  Hang in there, you're not alone.    Hugs, LL

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited October 2016 #5
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    Maryann

    Welcome to the club no one wants to belong to.  You have come to a good place.  The wonderful ladies here are a wealth of information, understandin, and encouragement.  You already have several things going for you.  It sounds like you have a good doctor who will treat you aggressively.  Taking baby steps is a good way to look at this.  You are on a roller coaster and will have bad days and good days and you will find that you are stronger than you ever imagined.

    i was diagnosed four years ago with stage IV high grade Serous Papillary Endometreial Andocarcinoma. It has metastisized to numerous places.  I have had 36 rounds of chemo and radiation. And I am still here.  I have many more good days than bad.  I am now on a immunotherapy drug that just may be working.  Never give up hope.

    At the very beginning of my roller coaster ride a friend told me that if God doesn't take this from me, He will go through it with me.  And I believe that is true.  At the very beginning , I question my faith, "Why me?", now my faith is stronger than it ever has been.

    Hugs and prayers, Lou Ann

  • Soup52
    Soup52 Member Posts: 908 Member
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    Welcome to our group! You

    Welcome to our group! You will have much support here, so you will not go it alone. I have endometrial clear cell and have had both types of radiation along with 6 carbo taxol chemo treatments and am now clear. It's a long road but you can do it!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited October 2016 #7
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    Hey Maryanne,

    Hey Maryanne,

    Welcome to our board. Glad you found us. The ladies here are supportive, smart and willing to share just about anything to help. The beginning of this journey is the hardest. Once you get a plan, you will follow it, check things off as each is finished and be way stronger along the way than you think.  I was never one to take pills, but found that the anxiety was very high in the beginning and I took the advise of a couple of wise ladies to take an anti-anxiety medication (Lorazapam) to get me through the rough spots. You may want to consider doing the same.

    Take this one step at a time. You will get through this. Please come back with any and all questions.  Also, if you had time to go back and read the old posts, you will find a ton of information and will discover that many have beat this crappy cancer.

    Love and Hugs,

    Cindi

  • Red Corvette
    Red Corvette Member Posts: 114 Member
    edited October 2016 #8
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    Welcome Maryanne

    Welcome Maryanne to a club you shouldn't have to join but is filled with wonderful supportive ladies. My wife is 11 months post complete robotic hysterectomy and 4 months post chemo/radiation treatment for utetine serous papillary cancer and is doing great. And you will do great too but it's a mountain climb as my wife's

     gyneoncologist says.  You're in probably the worst period of the journey now waiting for surgery, staging, and treatment plan but you can get through this no matter what the stage turns out to be. Again welcome to the club that will help you get through this craziness.

    Call on us anytime.

    Red

     

     

  • janaes
    janaes Member Posts: 799 Member
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    Mmpeterson, Im sorry you had

    Mmpeterson, Im sorry you had to join our group and at the same time am glad you found us.  This group has got me through some real hard times.  I have needed them.  Its a place were i dont feel alone.  I share some real hard stuff here and then when i do i feel greatful and hope.  I hope you find this place helpful like i have.

    Hugs, Janae

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    edited October 2016 #10
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    Maryanne,  I just ansswered

    Maryanne,  I just ansswered your message you sent to me through the private email.  Like the other ladies, this website is a place you can vent, cry, celebrate and speak your mind.  We have all been through or going through what you are feeling.  Take someone with you to all the meetings, write your questions down and take it with you so you do not forget what to ask.  Since I know where you will be get on the hospitals mychart.  You will be able to get copies of all your medical reports and what is going on.  It is a blessing to have that.   Once you get your pathology report take it with you to the DR appointment and ask the questions about what it states.  The Dr will be able to answer your questions.  Also if you need someone to sit with you during chemo treatments let me know.  I live in Dallas, went to the same hospital and can come and sit with you if you need someone.  Take it one day at a time, do not get ahead of yourself on the what ifs, it is hard to do but you will get through this, you are stronger thatn you think you are and we are all here for you. trish

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited October 2016 #11
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    I just wanted to welcome you

    I just wanted to welcome you as well, Maryanne.  The women have all given you great advice and I can't add much to that.  Just know that you can lean on this group as much as you want for support and information.  We're all here standing with you.

    Chris