stage iv mother newly diagnosed

jessicavk
jessicavk Member Posts: 1
edited March 2014 in Colorectal Cancer #1
Hello,

This is my first post and I'm just looking for any kind of hopeful stories to keep us going. My mother (age 59) recently underwent surgery (last week) to remove a grapefruit sized tumor in her colon and they discovered that it was also outside the colon, fused to one ovary and metastasized to the bladder and liver and lymph nodes. I am new to all the cancer lingo so my description may be a little off but we do know it is in her bladder and liver which is what worries me most. They removed what was in the colon and also removed the nearby ovary. The doctors have not talked to us much which is frustrating. She is starting intensive chemo once she is healed and also radiation which is all good news but I find myself just assuming the worst and thinking she may only have a year or two at the very most. No doctors have told us this but that's what keeps popping into my head. This cancer grew very quickly. She had a colonoscopy five years ago from an experienced doctor and it was totally clean...and now this...The surgeon seemed to think this fast of a growth is basically unheard of, which is also making me assume the worst if it continues to spread and grow at this rate. They said they could not do anything more with surgery and I get the impression radiation cannot be used on the liver? Is this correct? Is it possible for chemo to shrink what is in the liver enough for it to be surgically removed? I'm just having trouble finding any portion of this to be optimistic about, which I need to be for her sake. She is single and lives alone and my sister and I (both in our 20's) are really the only family she has so I feel like the pressure is on us to help her be positive and get the most from her treatments.

Any stories or advice would be helpful. Thanks.

Jessica

Comments

  • sladich
    sladich Member Posts: 429 Member
    #2
    Hello Jessica,

    I was diagnosed in September 2004, at age 48, with Stage 4 colon cancer. They found a lemon-size tumor in my colon. My lymph nodes were clear; however, I had a tumor in my lower left lung which I had surgically removed. At the point of diagnosis, my liver was clean. I went through 6 months of chemo only to have the cancer come back in my liver. I had a liver resection in November 2005. I went through more chemo, only to have it reappear again in my liver a year later. I underwent two chemoembolizations and one RadioFrequency Ablation (RFA) on the tumor in my liver. I did not have any systemic chemo after this treatment. I went almost a year and had another recurrence in October 2007. They found a tumor in my left lung. I underwent a lung RFA. Right now I'm clear. There is so much more out there for colon cancer patients. Hang in there and I'm sure your Mom will make it through. Keep us posted.

    Debbie
  • betina61
    betina61 Member Posts: 642 Member
    #3
    Hi Jessica, I can not tell you to much myself, because I am stage 3 but I am sure that a lot of stage Iv survivers will chime in, there are so many sucsesful stories on this board that I'm sure that will lift up your spirit and your Mom's. Sending positive thoughts for you and your family.
  • Kanort
    Kanort Member Posts: 1,272 Member
    #4
    Welcome, Jessica. I am so glad you found our site. Being an advocate for your mother is the first step on helping her battle this disease. I am only stage 3 and am four years out from treatment. Hopefully, there will be many more stage 4 survivors who can answer your questions. Debbie has given you much hope which is what you and your mother need right now. Arm yourself with as much information as you can and be an active participant in decision making.

    Bless you, your mother and your sister as you deal with this illness.

    Hugs,

    Kay
  • pamness
    pamness Member Posts: 524 Member
    #5
    I, too, was only stage III, but there are many stage IV survivors on the board that I am sure will respond. I have no doubt that your mother has some options. Why have your doctors not talked to you. Are you at a major cancer medical center. There are many good ones, if you aren't you should probably go and get some more information. There are stories on this board that are unbelievable. If you look at Mrsgrandlake - I think that is right - a fairly recent posting, the information from people who have survived this is very uplifting.
    I wish your Mom all the best - there is lots of support and help available and treatments that do amazing things. Keep your spirits up this will help you and your Mom. I think you will get postings from many peoplemore experienced than I.

    Pam
  • mikew42
    mikew42 Member Posts: 114 Member
    #6
    Hello Jessica,

    I was diagnosed in Feb. '04 with 9 nodes positive and 3 mets to liver. I was 41 at the time. I had seven months of chemo and RFA to the liver mets. Just got my latest CT scans yesterday and all clear for 3 1/2 years now. Yes, it is possible for chemo to shrink the mets so that they can be surgically removed. Or an alternative is to have them ablated, RFA. As Debbie said, there are many options today for treating this horrible disease that weren't available just 10 years ago. Take care and keep us posted. Mike
  • dn220
    dn220 Member Posts: 79 Member
    #7
    I was just recently diagnosed with stage 111 had my resection done on the 4th of March but I also have renal cell carcinoma and had my right kidney removed in July of 2007. You have come to a good place for info, support and caring people. I just had my 1st folfox6 treatment. I was treated before surgery with radiation and chemo consisting of Xeloda. I had my pump taken off today and will be getting this chemo treatment every 2 weeks for 6 months. I know how hard this is for you with it being your Mom but just remember u have to be strong for her. My daughter is my youngest and only child left at home, she just turned 17 my oldest son lives about 6 hours away and my middle child is a Marine and has been in Iraq since I have been sick(coming home Saturday, yeah) so believe me I know how hard it can be on family but just try to be strong and understanding for her. Medicine has come a long way over the years and as the others have said there are lots of Stage IV survivors here.
    Deb
  • apache4
    apache4 Member Posts: 272 Member
    #8
    I am close in age to your Mom, age 64, with two children and Stage IV with many,many mets in liver. I was diagnosed 6/06 so have survived two pretty good years so far. I had a colon resection to remove the tumor and a liver biopsy to confirm the cancer there. About two weeks later, I had the minor surgery to put in a portacath. This is very important as it keeps veins from collapsing during treatment. They just access the port each time instead of poking around for a vein. Please find out about this or tell your Mom to ask her oncologist. I cannot have anything done with my liver as there are too many mets...radiation and surgery are not my options. Chemo is "it" for me and I was told I would be on it "until I could not take it anymore". I had 16 rounds of what is usually the first line of defense which I hope your Mom will tolerate as well as I did. I had a brief break as the tumors apparently "died", but they came back and I was on a second chemo for 8 rounds which ended yesterday. I will now start a third chemo in about three weeks (have a trip to Ca. planned to visit daughter and family). The tumors did not respond to treatment #2 and have grown larger. Not good news. You will find that this is quite the experience. I know my kids get upset when I have to give them crummy news like I did yesterday, but we kind of deal with it by being happy for each day. No one knows when or how many years are left for them. Try not to dwell on that part...it is hard and your Mom will have to make her own decisions about how much chemo she is willing to have...quality vs. quantity of life, etc. My kids and I have spoken of these issues and they respect my decisions. That is vey important.
    Is she otherwise healthy? Does her life experience give her enough background to understand all the Dr. stuff? That also influences how much you need to advocate for her. I have been independent for so many years that I just handle it all myself and go to and from treatments independently, etc. There is still plenty of life left to live even while on chemo.
    Also, it has helped me to deal with it as a reality and not to minimize the seriousness of the diagnosis. Being positive is important,but being "up front" and real is also important.
    It would be great if you introduced her to this site and she used it herself. If she is not computer savy, help her out with that. The computer is a great way to stay connected as there are also other sites with communication, photos of fellow survivors, stories, etc.
    I hope this helps...let your Mom know that people like myself are willing to help and answer questions and that we all pray and encourage each other. She is not alone.
  • kristasplace
    kristasplace Member Posts: 957 Member
    #9
    Hi Jessica, and welcome! I understand how scared you must be. Cancer can be horrifying, ESPECIALLY for our loved ones dealing with it. I agree with apache that it is very important that loved ones keep a positive attitude about the cancer. It isn't a death sentence. Stage IV does not mean terminal anymore. As others have said, there is sooo much hope, and so many success stories on here, you and your mother can use that as strength as so many of us have.

    Please keep us updated, and know we are always here to lend support!

    Many hugs,
    Krista
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #10
    Hi. Welcome to the site, but sorry it's under these circumstances. I urge you to go back and read previous posts. Also personal web pages. I won't go into detail about our story (hubby stage IV , liver mets and now NED no evidence of disease after liver resection which initially was not possible or even plausible) but if you care to go back and read my previous posts and web page. Keep the faith, keep hope alive because many advances have been made and there are many stage IV survivors here.
    God Bless,
    Diane
  • doris2657
    doris2657 Member Posts: 38
    #11
    Hi Jessica
    I'm also stage 4 colon cancer,at first they thought I had ovarian cancer then they found out I had colon cancer that spread to my ovaries,I had 2 major surgeries with in 6 weeks,I have a daughter that is your age,the first thing I want to say is find different doctors my doctors have involved my whole family they answered every question my husband or kids had,my onc told them to call anytime day or night,are you near a big cancer center I live near MD Anderson.As far as not giving you a time how long my doctor wont do that either because like he says we are going for complete remission tomorrow I will start my first round of chemo,and my hubby and kids will be there with me like I told my kids when we first found out you have 2 days for crying and anything else you feel you need then we put it away and live as normal as we can,only God knows what will happen,God bless you
  • katienavs
    katienavs Member Posts: 88 Member
    #12
    Hi Jessica,
    I hope I can offer some hope. I was diagnosed stage iv in June of 2006. I underwent thirteen rounds of folfox chemotherapy, five and a half weeks of chemoradiation to the primary tumor (not to the liver) and two surgeries. I am thirteen months out of chemo and am cancer free.
    I had four rounds of chemo before surgery and the metastases in my liver had shrunk by 90%. The typical radiation that can be done to other parts of the body isn't done to the liver but there are some other options in addition to chemo. One is called sirspheres and one is called radiofrequency ablation.
    I am sorry you haven't been able to talk to the doctors much. I know how frustrating that can be. My best advice is to assert yourself as early as possible and demand they take the time to answer your questions.
    There is certainly a lot of hope to be had and the more you have the easier the journey will be. Please don't hesitate to ask any other questions. Good luck with everything and try to keep a smile on yours and your mom's face as much as possible!
    Katie

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