New to board and need support

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christines2060
christines2060 Member Posts: 6
in Uterine/Endometrial Cancer #1

Hi everyone out there,

I am new to the board and have been so scared and stressed- I have my first scan on Friday to see if my chemo treatments are working. On July 3 I found out I have cancer. From then on it's beem a whirlwind. I have uterine cancer with mets in my lungs, While looking at my first scan, there were over twenty spots on each lung. I was in the hopital for four days just to get a biopsy. I was told I had carcinsarcoma. Whatever that is- I feel like I only understand half of everything they say. Luckily my hubby goes to all my appointments to hear and try to understand what I don't. I was told that the tumor in my uterus was too big to remove without causing damage to other vital organs, so I started chemo at the end of July. I go every Thursday. My first scan is on Friday- I am so scared that the chemo didn't work. How do you know if all the chemo is working? I sometimes feel alone- please know I have a great husband who supports me, my family and friends do as well, they just don't understand how it feels to look in a mirror and see someone different looking back, how hard it is to go into a dressing room to try clothes on and nothing looks right with my thinning hair. They don't always understand why I cry. Thank you everyone.

Chris

Comments

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited September 2017 #2
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    Hey Chris- you are NOT alone!!!

    1st, so glad you found us!  The folks here are so kind, knowledgeable and caring!  You just got a whole pile of sisters who are glad to link arms with you and walk along.  We all know what it's like to look into that mirror.... good news, it does come back- mine came back so dang curly... lol but hey- it's hair!

    Re  your tumor and if the chemo is working- do you know if they did any genetic testing to make sure the chemo they were using would be effective?  My tumor was the size of a baby's head, but they did manage to get it out before they did chemo.  My cancer is different than yours and tomorrow is my 1 year anniversary from last treatment.  I know it's hard not to be scared and stressed but hang in there- they will switch gears if they think things aren't doing what they are expecting.

    So glad to hear you have such a great hubby and support!  Are you doing good self care?  Getting a massage or acupuncture?  Love on yourself just like you would if you were doing it for a good friend going through this- you deserve it.  If it all gets a little much and you can't calm down ask for a gentle med to help take the edge off.  This is a season and it will pass.  In the meantime we are here- we care- we want to hear your story and there is nothing off limits here, so let it out.   Some other amazing sisters will be along shortly.   (((HUGS)))

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #3
    Options
    You are not alone

    As Nellasing said, you are not alone.   This is a great place to come to vent, ask questions, and such.  Sometimes we don't want to ask famiy members things and it is so much easier here to do that.   Its great that you take your husband with you to all your appointments.   Remember, you can get a second opinion too?   When I had a recurrence, I was told my mass was inoperable, but I went to get a second opinion and they were able to remove it.

    Right now you are still in shock mode.   Its ok to cry.  Hang in there!

    My best to you,

    Kathy

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #4
    Options
    Hey Christine,

    Hey Christine,

    Just wanted to welcome you to our board. This is a great place to come to for support, understanding, answers and venting. I'm so sorry you had to find us and it sounds like you have had to deal with a lot already. I hope the scans show great improvement in the size of your tumors and you are able to have surgery to remove the rest or at least the ones that started this mess for you!

    Please come back and let us know what you find out and ask us anything! We are here for you.

    Love and Hugs,

    Cindi

  • Sharring
    Sharring Member Posts: 24
    #5
    Options
    Hi Christine,

    I too was recently diagnosed with carcinosarcoma (late Aug 2017). I had 2 tumors .. 1 that took up >90% of my uterus and another over 80% of my cervix.  I did have some mets to my para aortic lymph nodes so that threw me into a stage lllc grade 3 diagnosis.  They do seem to move really fast in treating this type of cancer. I had a total abdominal hysterectomy and they took everything. I can hardly keep up, I agree it's a whirlwind. I feel like I haven't even had time to cry!  Early next week I have port surgery and my first of six rounds of chemo. I'm so glad you have such a supportive husband. i lost my husband and have not been as fortunate relying on my only daughter. I think this is a very hard diagnosis on everyone. I have many of the same questions as you. How do I know treatment is working? How will I know if or when I have a reoccurance?  i am learning to slow down and ask questions...something i have never been comfortable doing. One thing for sure....if there is ever a time in our lives where we can and must put ourselves first...this is it! ive only been here a short time on this board but I already feel the support and strength of many. Please stay strong...cry...fight hard. Keep us posted because your sharing helps others not feel so alone!  All my best....Susan

  • Kvdyson
    Kvdyson Member Posts: 789
    #6
    Options
    Carcinosarcoma (aka MMMT) Diagnosis

    Hi Christine, so sorry to hear about what you are going through. Please try to stay hopeful. I was also diagnosed with uterine carcinosarcoma (also known as MMMT). It's an aggressive form of cancer that has both carcinoma and sarcoma cells - which is why it can be tricky to treat. 

    The good news is that you will find many wonderful ladies on this board (and others, like FB and Yahoo) with the same diagnosis who received treatment and are continuing to live their lives as close to "normal" as possible.

    Because MMMT is a somewhat rare cancer, it is important to find a gynecological-oncologist with experience treating it. Surprisingly, not all gyn-onc's have experience with it. If yours doesn't - but you love them and want to continue working with them - there are large cancer centers with that experience who may be willing to work with your doctor to be sure he/she has the most up-to-date information on care standards (they change all the time due to clinical research).

    Please know that we are here to help you. Let us know your questions or concerns and we'll do our best to help you.

    Wishing you strength and peace, Kim

     

  • christines2060
    christines2060 Member Posts: 6
    #7
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    Nellasing said:

    Hey Chris- you are NOT alone!!!

    1st, so glad you found us!  The folks here are so kind, knowledgeable and caring!  You just got a whole pile of sisters who are glad to link arms with you and walk along.  We all know what it's like to look into that mirror.... good news, it does come back- mine came back so dang curly... lol but hey- it's hair!

    Re  your tumor and if the chemo is working- do you know if they did any genetic testing to make sure the chemo they were using would be effective?  My tumor was the size of a baby's head, but they did manage to get it out before they did chemo.  My cancer is different than yours and tomorrow is my 1 year anniversary from last treatment.  I know it's hard not to be scared and stressed but hang in there- they will switch gears if they think things aren't doing what they are expecting.

    So glad to hear you have such a great hubby and support!  Are you doing good self care?  Getting a massage or acupuncture?  Love on yourself just like you would if you were doing it for a good friend going through this- you deserve it.  If it all gets a little much and you can't calm down ask for a gentle med to help take the edge off.  This is a season and it will pass.  In the meantime we are here- we care- we want to hear your story and there is nothing off limits here, so let it out.   Some other amazing sisters will be along shortly.   (((HUGS)))

    Thank you for the kind words-

    Thank you for the kind words- no genetic testing, but they did say my tumor was the size of a 16 week pregnancy. I am very blessed to have a hreat hubby- God brought us tpgether 33 years ago. Congrats of your one year from last treament- celebrate, you deserve it.

    Chris

     

  • christines2060
    christines2060 Member Posts: 6
    #8
    Options
    Kaleena said:

    You are not alone

    As Nellasing said, you are not alone.   This is a great place to come to vent, ask questions, and such.  Sometimes we don't want to ask famiy members things and it is so much easier here to do that.   Its great that you take your husband with you to all your appointments.   Remember, you can get a second opinion too?   When I had a recurrence, I was told my mass was inoperable, but I went to get a second opinion and they were able to remove it.

    Right now you are still in shock mode.   Its ok to cry.  Hang in there!

    My best to you,

    Kathy

    Thanks Kaleena,

    Thanks Kaleena,

    I did a second opinion and was told to retire and enjoy the life I had left- I decided to fight. I am in shoke mode- I ask myself "how did I get here?". God has a plan for me, I just dont know what it is yet.

  • christines2060
    christines2060 Member Posts: 6
    #9
    Options
    Kvdyson said:

    Carcinosarcoma (aka MMMT) Diagnosis

    Hi Christine, so sorry to hear about what you are going through. Please try to stay hopeful. I was also diagnosed with uterine carcinosarcoma (also known as MMMT). It's an aggressive form of cancer that has both carcinoma and sarcoma cells - which is why it can be tricky to treat. 

    The good news is that you will find many wonderful ladies on this board (and others, like FB and Yahoo) with the same diagnosis who received treatment and are continuing to live their lives as close to "normal" as possible.

    Because MMMT is a somewhat rare cancer, it is important to find a gynecological-oncologist with experience treating it. Surprisingly, not all gyn-onc's have experience with it. If yours doesn't - but you love them and want to continue working with them - there are large cancer centers with that experience who may be willing to work with your doctor to be sure he/she has the most up-to-date information on care standards (they change all the time due to clinical research).

    Please know that we are here to help you. Let us know your questions or concerns and we'll do our best to help you.

    Wishing you strength and peace, Kim

     

    Hi Kvdyson,

    Hi Kvdyson,

    As close to normal- I feel that this is my new normal. I have found a gynecological oncologist and luckily he is very familier with treament on my cancer. I was told from one of the top cancer centers that my current dr. is doing the same things they would do if I drove the two and a half hours to their offices. I am nervouse about the scan. It is Friday afternoon and I won't see my dr. until Wednesday afternoon. It will be a tough couple of days- but I will try to keep busy.

    Just knowing that I am not alon means a lot to me.

    Thank you,

    Chris

  • Kvdyson
    Kvdyson Member Posts: 789
    #10
    Options
    christines2060 said:

    Hi Kvdyson,

    Hi Kvdyson,

    As close to normal- I feel that this is my new normal. I have found a gynecological oncologist and luckily he is very familier with treament on my cancer. I was told from one of the top cancer centers that my current dr. is doing the same things they would do if I drove the two and a half hours to their offices. I am nervouse about the scan. It is Friday afternoon and I won't see my dr. until Wednesday afternoon. It will be a tough couple of days- but I will try to keep busy.

    Just knowing that I am not alon means a lot to me.

    Thank you,

    Chris

    Chris, hoping that the scan

    Chris, hoping that the scan went okay for you. It is hard to wait for the results. I found out that if I ask for a copy of the report to also be send to my primary care physician office, I can see it within two days on their portal website. Not sure why they don't follow the same protocol for releasing that info as my gyn-onc but I'm (generally) glad for it. Let us know how it goes on Wednesday. Kim

  • derMaus
    derMaus Member Posts: 558 Member
    #11
    Options
    Kvdyson said:

    Chris, hoping that the scan

    Chris, hoping that the scan went okay for you. It is hard to wait for the results. I found out that if I ask for a copy of the report to also be send to my primary care physician office, I can see it within two days on their portal website. Not sure why they don't follow the same protocol for releasing that info as my gyn-onc but I'm (generally) glad for it. Let us know how it goes on Wednesday. Kim

    LOVE the new picture, just

    LOVE the new picture, just saw it now!

  • Soup52
    Soup52 Member Posts: 908 Member
    #12
    Options
    Kvdyson said:

    Chris, hoping that the scan

    Chris, hoping that the scan went okay for you. It is hard to wait for the results. I found out that if I ask for a copy of the report to also be send to my primary care physician office, I can see it within two days on their portal website. Not sure why they don't follow the same protocol for releasing that info as my gyn-onc but I'm (generally) glad for it. Let us know how it goes on Wednesday. Kim

    Love the pic! I’ve been

    Love the pic! I’ve been thinking of updating mine.

  • Kvdyson
    Kvdyson Member Posts: 789
    #13
    Options
    Kvdyson said:

    Chris, hoping that the scan

    Chris, hoping that the scan went okay for you. It is hard to wait for the results. I found out that if I ask for a copy of the report to also be send to my primary care physician office, I can see it within two days on their portal website. Not sure why they don't follow the same protocol for releasing that info as my gyn-onc but I'm (generally) glad for it. Let us know how it goes on Wednesday. Kim

    Thanks! I figured it was time

    Thanks! I figured it was time for a more recent one. :)

  • christines2060
    christines2060 Member Posts: 6
    #14
    Options
    AHH! Things will get better- I hope!

    I had my scan two weeks ago- not the best news. They found another nodule in my lung and the tumor in my uterus grew- just a tad, enugh to make me worried. I will continue my treatment plan, another scan in November and pray for better news.

    Staying Positive!!

    Chris

     

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited October 2017 #15
    Options
    One Strong Lady

    It's so amazing how positive you are in the face of the difficult situation you find yourself in. Treatment to battle this disease is never easy, especially emotionally, but the kind of attitude and strength you are showing will help you to get through what you have to do. Hang in there and feel all of us sending our prayers and strength to add to yours! 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited October 2017 #16
    Options
    Hey Chris,

    Hey Chris,

    Adding my support and prayers to MA's... Please come back and let us know how you are doing and what your next scan indicates.

    Love and Hugs,

    Cindi

  • Gma1201
    Gma1201 Member Posts: 3
    edited October 2017 #17
    Options
    Hi Chris

    Adding my support and prayers too! I understand looking in the mirror it was strange for me at first too but it gets easier. I’m finding I’m kind of enjoying not having hair it’s very freeing, I just slap on a wig and head out the door Lol no fus no muss. Keep us posted on how you’re doing. Take care.

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited October 2017 #18
    Options
    Best thing you can do!

    Chris, sorry to hear you had less than stellar news but so glad you have decided to stay positive and keep on it.  Sending you wishes for living each day and finding all the blessings in them just for you.  Keep us posted (((HUGS)))

  • DottieDean
    DottieDean Member Posts: 36
    #19
    Options
    Chris hang in there.  This

    Chris hang in there.  This diagnosis is not one that anyone wants to have but as long as you have  a good oncologist you will get the treatment you need.  I go back to mine next Tuesday two weeks after my hysterectomy.  I'm nervous, too, but am doing what I can to get myself ready for the next steps he orders for me.  I suspect port placement and then chemo.  i am taking an anti anxiety med for the first time in my life.  It's helped a lot as I was a basket case for about a week after getting  diagnosis.  

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