New to forum and scared

Here it is... If my cancer is not everywhere they will do total hysterectomy, colostomy, if in bladder remove bladder and another colostomy. I live alone and don't have family able and close by... they are sick themselves. I am very nervous and anxious and scared. I have a 30% chance if it is not everywhere, but that's a 30% chance! I am just waiting on date of surgery because my oncologist surgeon is trying to get him, urologist, gyno, and plastic surgeons ALL together for surgery. The wait is killing me. Anyone that has a story and the chances were low I would love to hear them. Thank you

Comments

  • horsepad
    horsepad Member Posts: 146 Member
    I think we all have stories. 

    I think we all have stories.  Waiting to find out what will happen next is the WORST!!!!  You think negatively too much.  I like my story because it has a happy ending (remission).  I was diagnosed with stage 4 cancer, it had spread to lymph nodes and liver.  My chances of survival were are 12-15%.  My husband committed suicide during my treatment and I was left alone to fight cancer, raise 2 grandchildren and manage a 70 acre farm.  A few months after my husband's death, I had a liver resection which increase my odds of surviving 20-30%  Today, 3 years later, I feel great and I am still in remission.  I know the odds are stacked against me but I have the Lord at my side to comfort and guide me.  You will get through this, I know it's hard but try to think positively.  Be grateful for all you have, good or bad.  Personally, gratitude for what I have has helped tremoundously.  Best of luck to you. 

  • Diane Johnson64
    Diane Johnson64 Member Posts: 3
    horsepad said:

    I think we all have stories. 

    I think we all have stories.  Waiting to find out what will happen next is the WORST!!!!  You think negatively too much.  I like my story because it has a happy ending (remission).  I was diagnosed with stage 4 cancer, it had spread to lymph nodes and liver.  My chances of survival were are 12-15%.  My husband committed suicide during my treatment and I was left alone to fight cancer, raise 2 grandchildren and manage a 70 acre farm.  A few months after my husband's death, I had a liver resection which increase my odds of surviving 20-30%  Today, 3 years later, I feel great and I am still in remission.  I know the odds are stacked against me but I have the Lord at my side to comfort and guide me.  You will get through this, I know it's hard but try to think positively.  Be grateful for all you have, good or bad.  Personally, gratitude for what I have has helped tremoundously.  Best of luck to you. 

    Thank you so much for

    Thank you so much for sharing! God has me I know and I am thankful for blessings everyday. So happy that you are in remission. God bless and thanks again ... nice to hear.

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    Diane....

    Hi, and welcome to our family here but at the same time so sorry for the need.  Fear is a tricky thing, I'm not going to stay don't be frightened because once it is there its so hard to just turn off, but do take comfort in knowing we are here for you all the way!  As horsepad said  we all have stories, some seem more difficult than others but the truth is one can measure something like that. It is encouraging though to see some who have been diagnosed with later stage cancer doing so well today. WAY TO GO HORSEPAD !!!!!!!!!!!

    I was diagnosed with Stage 3b with pelvic lymph nodes involved. I began with a clinical trial but after some complications half way through continued with protocal treatment of chemo/radiation. I did have surgery for what was supposed to be a temporary colostomy prior to beginning but due to radiation damage was unable to have that reversed. I am now almost 3 1/2 years post treatment and doing better than ever and probably much healthier than I was for years. The ostomy is not a problem for me.

    Looking back, I wish I had had a hysterectomy prior to treatment as both my mom and grandmother died of ovarion and pelvic cancer of unknown origin. My doctors have thoroughly (believe me) examined me and agree that a hysterectomy now would be a very complicated surgery due to severe internal stenosis from radiation. When I began treatment I was soooooo sick that it was important to just get started.

    There are several different kinds of ostomies. The most common to treat anal cancer would be a colostomy(colon), there is also an ileostomy(small intestine), and urostomy(bladder), some of these can be reversed within months even several years later but depends on individual situations and how the surgery is initially performed. I have met a few people that have 2 ostomies, and while certainly some adjustment period, in time becomes a managable part of life. (We are here for you when and if you cross that bridge as well)

    The waiting is so hard, most of us have the same feelings even down the road......always a little worried to get those test results.  Your doctors need a little time to coordinate and thats what you want. Try somehow to keep your mind busy......I usually go on a cleaning frenzy, but don't know if your feeling up to that. Get involved in a good book, movie, cooking, whatever you can do during the wait.

    Please stay in touch, and I will have you in my thoughts and prayers as you move forward.

    Katheryn

  • 0626june
    0626june Member Posts: 73
    Hi Diane,

     I was diagnosed stage 3b due to pelvic lymph node involvement in April and underwent chemo and radiation. I don't really like those percentages they give us. The thing about the percentages is, they don't take into account who you are, so ignore that 30%...it really means nothing.  Try to think that you have 100% chance of getting through this...it will be difficult many times, but you will eventually come out the other side, victorious.  Keep us posted, you can say ANYTHING here, and, as much as possible, lean on us.  there's a wealth of experience and wisdom here.  You'll find all different types and degrees of faith here. I'll be sending you healing energy.   June

  • mp327
    mp327 Member Posts: 4,440 Member
    Diane

    I'm sorry that you are facing all of this and I can imagine how very scary it is.  However, you have the strength to get through this!  Dig deep because it's already there.  Do not give too much thoughts to statistics or odds--people beat those every day.  You can be one of them if you fight hard and stay strong.  I wish you all the best.

    Martha

  • pializ
    pializ Member Posts: 508 Member
    mp327 said:

    Diane

    I'm sorry that you are facing all of this and I can imagine how very scary it is.  However, you have the strength to get through this!  Dig deep because it's already there.  Do not give too much thoughts to statistics or odds--people beat those every day.  You can be one of them if you fight hard and stay strong.  I wish you all the best.

    Martha

    Diane

    I am sorry about your situation, but glad you have found us because we will all be supporting you wherever your journey takes you. The trouble with statistocs is that they really are just figures. None of us know which statistic we will become. Plus there are so many variants that lead to the figures. So!Hold your head high & get ready to fight. This is another battle, but it can be won. Whenever I see my oncologist naturally she asks how I am. I always tell her 'I am fine unless you tell me differently'.  Yes I get scared at reviews & scanxiety, but neither I nor you are a statistic. We are people on a journey. 

    Hugs on their way to you

    Liz x

  • sephie
    sephie Member Posts: 650 Member
    wrong statistics

    i was treated in 2009 at MD Anderson..... i never heard that low of a statistic..... 50%, 60%, 75% for different stages.....so do not even listen to the statistics..... there are sooo many people supposed to die in 6 months from other cancers  and they live a lot longer.......i realized that you have a lot to deal with but u can do it.....sephie

  • sandysp
    sandysp Member Posts: 868 Member
    sephie said:

    wrong statistics

    i was treated in 2009 at MD Anderson..... i never heard that low of a statistic..... 50%, 60%, 75% for different stages.....so do not even listen to the statistics..... there are sooo many people supposed to die in 6 months from other cancers  and they live a lot longer.......i realized that you have a lot to deal with but u can do it.....sephie

    What a great topic and responses

    I really appreciated everything said here. The fear and worry we all understand. What stories you have shared who responded. I am so sorry about your husband's suicide, Sweetpea. How you ever survived all this, I will never know.

    I had to laugh about "I'm okay unless you tell me I'm not okay." (not direct quote). How true that can be sometimes.

    It is really hard to be in this illness or any situation one day at a time. I have been fretting about how to plan in the event they do this, or that truly making my husband nuttier than he is already. 

    These statistics are confusing. I have also met many people who have defied all odds. My aunt went into remission from distantly metastasized colon cancer and is alive and well forty years later well into her eighties. 

    So thank you everyone for your messages of courage and hope. I am going to refer back to these posts whenever I need inspiration. 

    Sincerely,

    Sandy

  • tallorder5793
    tallorder5793 Member Posts: 67
    horsepad said:

    I think we all have stories. 

    I think we all have stories.  Waiting to find out what will happen next is the WORST!!!!  You think negatively too much.  I like my story because it has a happy ending (remission).  I was diagnosed with stage 4 cancer, it had spread to lymph nodes and liver.  My chances of survival were are 12-15%.  My husband committed suicide during my treatment and I was left alone to fight cancer, raise 2 grandchildren and manage a 70 acre farm.  A few months after my husband's death, I had a liver resection which increase my odds of surviving 20-30%  Today, 3 years later, I feel great and I am still in remission.  I know the odds are stacked against me but I have the Lord at my side to comfort and guide me.  You will get through this, I know it's hard but try to think positively.  Be grateful for all you have, good or bad.  Personally, gratitude for what I have has helped tremoundously.  Best of luck to you. 

    I am new to this site and

    I am new to this site and inspired by your story. I am also coping with Stage 4 cancer, with spread to lymph node and liver. I am not a candidate for liver surgery... per doctors... due to initial tumor spread in the liver. Though these tumors have been significantly reduced through chemo. I try to keep a attitude and also pray for remission.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Plan ahead......

    From off the top of my head, take charge and plan ahead for what is coming. Don't just let things happen around you. Speak with the doctor and with the Customer Services department of your insurance company and Patient Advocate/Social Worker at the hospital where the surgery will be performed. Arrange for a transfer from the hospital to a rehabilitation center once you are ready. And then arrange for home health aides and nurses after that. If your insurance will not provide for these services, see about applying for Medicare/Medicaid - the hospital Social Worker can help with this. (You wouldn't happen to be a veteran, would you? The VA provides more coverage than Medicare.)

    ADDENDUM: The planning will also help the time go faster and will ease the aftermath of your surgery. By the way, I think you mean an ileostomy will be performed if they remove your bladder.

  • MKW213
    MKW213 Member Posts: 29
    Diane

    I agree with what everyone has said. It's hard to add anything else. I was told by a social worker to use the "low beams", i.e. not to look so far down the road if I didn't have to. Sometimes you have to put those "high beams" on. And low beams is easier said than done. I was diagnosed in April with grade 3b with pelvic lymph nodes and my doctor wouldn't even give me percentages. He simply said he didn't know, which looking back I SO appreciate him saying. He examined me last Friday and although I "only" had to have chemo and radiation, no surgery, the lymph nodes are gone and the tumor has shrunk so much he wasn't sure he was examining the right person.

    And yes, waiting is the absolute worst. I used some meditation tapes I found on Amazon. They help somewhat, but anything is better than nothing. God bless you and keep us posted.