hello I am new to this site!

jennifer_thornhill
jennifer_thornhill Member Posts: 2
edited March 2014 in Colorectal Cancer #1
Hello I am just looking for support for my mother has been battling cancer for almost 2 yrs now so I will start from the beginning! She was having bleeding in her stools and had a colonoscopy they removed polyps that came back as cancer they came back with a T3 rating so she underwent six weeks of radiation 5 days a week and the chemo wasnt a high powered one they just said it made her body more supceptible(sp) to the radiation. She completed this treatment then had a petscan which showed no traces of cancer left then had repeat scans every 3 months. on her 6 month scan the found 3 mets on her lungs 2 in her right and 1 in her left. She started more chemo did it for 4 weeks then had a repeat scan and it showed no igns of improvment but no new growth either. So they changed the chemo and did 4 weeks of it with a repeat scan and all was the same. so thats when they decided to tdo the open lung biopsy. When she went to the surgeon for all the pre surgery testing he told her that there was also a lymph node that they had been watching for six months and that it hadnt changed but that they were gonna cut her throat and test the lymph node and if it came back positve for cancer they would not proceed with the lung because obviously it had spread. the day of the surgery came and we got a call and said the the immediate results of the lymph node were negative so they were going to proceed we were all so excited. the dr came in when the surgery was over and explained that after the lymph came back negative he didnt want to open her chest but her oncologist insisted and we are very thankful he did because once they got her open he saw a lymph node next to her esophagus that didnt look right so he removed it and it came back positive so he just closed her up. so as of now she has been off of treatment for almost 3 months. we are trying to get her into M.D. Anderson cancer clinic now> she is so strong but I can see that she is getting very tired I just really need to her success stories encouragement anything cause its getting to where i dont know what to say anymore. I love my mother more than anything in this world she is only 47 which i know is good and she has 4 grandbabies that need her not to mention 2 kids a husband her mother and father and her brothers and sisters. Thank you for reading this any advise or support would be greatly appreciated

Comments

  • tina dasilva
    tina dasilva Member Posts: 641
    I'm so sorry
    I would liike to welcome you here this is a great place to come the people here are AWESOME I'm a caregiver for my husband but i'm sure you will have lots of people replying very soon . hugs Tina
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Welcome
    Hi Jennifer,

    How sweet you are to come here for your mom.

    You are on the right track with your efforts to get her into a major cancer clinic. You don't say...how long have you been trying and is there a hold up of some kind?

    It sounds like your mom's condition was just beyond the scope of the physicians who were 'treating' her. There is always hope. Some folks here have been on a 'maintenance' chemo for years.

    You have come to the right place for encouragement. There are lots of folks here who will share info and experiences and most of all encouragement and understanding.

    If you can, get your mom to join the site as well...or any of the rest of your family. Everyone has their own needs and we accept family, caregivers and patients with the same welcoming hug.

    Take care and let us know what is happening on the MD Anderson front.

    Hugs,

    Marie
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Hi Jennifer
    Welcome to the forum. I am so sorry to hear all that you and your mother and family are going through. This is a tough disease and a horrible diagnosis on everyone. Thank you for supporting and advocating for your mother.

    First, please make sure that someone is with her at her appointments and that they eother take notes or record the conversations. Having this diagnosis kind of makes it difficult to retain everything that is said. There is always new information to figure out and it is overwhelming. Having notes or a recording will really help later so you can go back over what was said. Sometimes the doctor will say something that you didn't expect and your thoughts will get stuck on it and you just won't heard the rest of waht is said because your brain stuck trying process the earlier words.

    Second, make sure that she gets at least a second opinion from another doctor outside of the hospital of medical center that she is currently invovled with. If that means MD Anderson, then go there.

    Also, if she decides to be treated at a large center that is not close to home, you can have them work with her to be able to have the major care done through a local clinic. Many of the larger center do that by setting up services such as chemo and follow ups at a home center and have the patient come in to the larger center for major followup and tests.

    All hope is not lost. We have many stage 4s here that are still around despite what doctors and numbers on the websites say. Some for years. Everyone is different and responds differently to their cancer and all the different treatments. There are more combinations of chemo and other alternatives that can really make a difference for your mother. Perhaps she is eligible for a trial. Has anyone told her about them or look into that?

    I would love to say I am one of the long timers but, I am still early in my treatment. But, I do listen to the people we have here on this site that have many years experince to pass on.

    Best of luck to you and your mother and family HUGS
  • John23
    John23 Member Posts: 2,122 Member
    jennifer -

    Re:
    "my mother has been battling cancer for almost 2 yrs now

    she has been off of treatment for almost 3 months

    we are trying to get her into M.D. Anderson cancer clinic "


    Are there other cancer specialists in your area? Second and
    third opinions should always be mandatory regarding any
    invasive surgery, or critical disease.

    Second (and all other) opinions should come from physicians
    that are not of the same association, group, or area of the others.
    Too often doctors know one another in small localities, and
    attempt to support one another. It's important to realize that,
    and ask physicians outside that group.

    The Lymph node's job is to capture bad things in our body;
    it's part of our immune system. Finding bad things inside the nodes
    isn't necessarily a "bad thing", it can mean that instead of the
    cancer cell getting lost someplace where it can't be found easily,
    it's been trapped and couldn't go further... That's a "good thing".

    Not everything will look so good with cancer, however...

    You really need other professional opinions, and soon. If the
    delay to get into Anderson is going to be long, try to locate
    another experienced cancer specialist in a neighboring town.

    Asking nurses and hospital staff, can sometimes reveal the
    "better" specialists, since the hospital gang sees things that other
    people do not.

    Make sure Mom always has someone going with her to each
    medical visit, to insure all that's said is remembered. Take notes,
    if possible.

    Cancer usually takes time to grow to a size that endangers our life,
    so don't get panicky, just get other opinions.

    My best to you all!

    John
  • John23
    John23 Member Posts: 2,122 Member
    John23 said:

    jennifer -

    Re:
    "my mother has been battling cancer for almost 2 yrs now

    she has been off of treatment for almost 3 months

    we are trying to get her into M.D. Anderson cancer clinic "


    Are there other cancer specialists in your area? Second and
    third opinions should always be mandatory regarding any
    invasive surgery, or critical disease.

    Second (and all other) opinions should come from physicians
    that are not of the same association, group, or area of the others.
    Too often doctors know one another in small localities, and
    attempt to support one another. It's important to realize that,
    and ask physicians outside that group.

    The Lymph node's job is to capture bad things in our body;
    it's part of our immune system. Finding bad things inside the nodes
    isn't necessarily a "bad thing", it can mean that instead of the
    cancer cell getting lost someplace where it can't be found easily,
    it's been trapped and couldn't go further... That's a "good thing".

    Not everything will look so good with cancer, however...

    You really need other professional opinions, and soon. If the
    delay to get into Anderson is going to be long, try to locate
    another experienced cancer specialist in a neighboring town.

    Asking nurses and hospital staff, can sometimes reveal the
    "better" specialists, since the hospital gang sees things that other
    people do not.

    Make sure Mom always has someone going with her to each
    medical visit, to insure all that's said is remembered. Take notes,
    if possible.

    Cancer usually takes time to grow to a size that endangers our life,
    so don't get panicky, just get other opinions.

    My best to you all!

    John

    Lori-S
    Good show! You were posting as I was typing!

    (I think you get a gold star, or sumptin')


    (haha)

    John
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    John23 said:

    Lori-S
    Good show! You were posting as I was typing!

    (I think you get a gold star, or sumptin')


    (haha)

    John

    Woo hoo John
    Can we make that a platinum star so that it doesn't clash with the damn oxy they are giving me? LOL
  • Nana b
    Nana b Member Posts: 3,030 Member
    Lori-S said:

    Woo hoo John
    Can we make that a platinum star so that it doesn't clash with the damn oxy they are giving me? LOL

    Welcome
    Welcome! You have gotten some good advice, all I can add is love! Give lots of it, don't act like she's dying because she isn't. Help provide good healthy food and supplements. A good prayer wouldn't hurt!

    Be strong, but don't forget to cry....it's ok and good for the soul,,,just don't stay there! Laugh,
  • Mellow Mel
    Mellow Mel Member Posts: 11
    God Bless You :)
    Your mother seems like such a strong woman! She is so blessed to have a daughter like you, as well as, loving family to be right there by her side! I will pray that everything works out. I am new here too, and here on behalf of my husband, Mont who has Stage 4 colon cancer. Everyone here is great,so, you have come to the right place!
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Welcome Jennifer!
    You have come to the right place!
  • Luv2lunch
    Luv2lunch Member Posts: 270
    Jennifer,
    Welcome to the

    Jennifer,
    Welcome to the board. I am fairly new also. But I can tell you there is no better place to be if you have to go through this. I also am taking care of my Mom who has rectal cancer. I came here not knowing anything but the people here are so wonderful and have so much great advice.
    We will be praying for you, your Mom and family to get through this.
    Linda and Ellie
  • Jaylo969
    Jaylo969 Member Posts: 824 Member

    God Bless You :)
    Your mother seems like such a strong woman! She is so blessed to have a daughter like you, as well as, loving family to be right there by her side! I will pray that everything works out. I am new here too, and here on behalf of my husband, Mont who has Stage 4 colon cancer. Everyone here is great,so, you have come to the right place!

    Welcome!
    Welcome Jennifer and Mel. Good to meet you.

    -Pat
  • chicoturner
    chicoturner Member Posts: 282
    Welcome Jennifer and Mom!
    Welcome Jennifer and Mom! you are so blessed have each other! Use this site, say what bothers, scares or confuses you. We love happy news too! Move some of this aside and remember the things you are thankful for! Best to you. Jean
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Sorry
    Sorry to hear about your mom. Hoping you can get her into MD Anderson. I've heard great stories about that hospital. Please keep us informed. You are a wonderful daughter trying to gather information for her.

    Kim
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Hi
    Hi. Welcome to the board, a great place for information and support.I'm glad your mom's oncologist was so insistent! I pray she will find a clinic that will provide her with some help.

    *hugs*
    Gail