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cbcardb12
cbcardb12 Member Posts: 84
edited March 2014 in Colorectal Cancer #1
Hi Everyone,

My 57 year old husband was diagnosed with colorectal cancer with liver mets on 3/2/09. Since then, we have been in a whirlwind of biopsies and chemo. The medical onocologist said that there is no cure, and my husband has 2 to 2 1/2 years of "quality life" left. He never said what would happen after that time, but I had been doing a lot of research and knew what he was saying. My husband didn't know. I insisted on a 2nd opinion, and made the mistake of forwarding the 2nd opinion doctor the exact medical records, slides, everything! So of course, she came to the same conclusion, but was very, very blunt in telling my husband that he had 2 to 3 years and then would die. She said that after the chemo drugs stopped working, he could come back to them because their real claim to fame were the clinical trials that they do for patients that had run out of options. I asked about a liver resection, and whether he would have at least 12 lymph nodes checked. She bluntly told us that he could never have a liver resection because there are too much of the cancer in his liver, and it doesn't matter whether he has cancer in his lymph nodes because of the cancer in his liver. I was so completely blown away and he looked totally devastated. Now, he is depressed and I'm worried that he will think that it's not worth it to try to beat this. I am giving him to time I know he needs to come to grips with what she said, but for me, this was just science and their statistics and averages. My husband is not a statistic and he is definitely not average.
How do I make him understand and believe that science does not have the final answer? Only God does, and he has to know that yes he is in the fight of his life, but I firmly believe that his total willingness to fight, both with learning everything he can, but by also getting his body in as good a shape as possible. He was already in pretty good shape, but he was overweight (260), now down to 200, and looking so sexy! The weight loss got rid of the need to take high blood pressure medicine, and he was walking a lot, but now he doesn't want to do anything.
Any advice? Sorry for the long post. Guess I needed to get it all out.

Comments

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Don't give up
    I know both of y'all must be so devastated at the bluntness of both doctors. I think in most cases the medical professionals believe they're doing the best thing when they tell you "the truth," rather than that they're being deliberately cruel. However, I also believe that things can often be much better than they anticipate.

    Hopefully Emily will post about juicing, which she believes in very strongly, and she can give you the particulars about that. You also might want to check into the recent posts about tumeric and try something like that.

    If your husband can keep from getting too discouraged, I would proceed with exercise and healthy eating and praying (if you're a believer) and try to find a doctor who will be willing to provide some treatment.

    Please keep coming here and let us know how things are. I am a praying person, and I will pray for both of you.

    *hugs*
    Gail
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    No need to give up!
    I'm not sure what we are to call you since you didn't leave a name... but welcome to the most supportive board on the internet! You are going to get a lot of support and advice here and you will feel a whole heap better, so make sure you come back and come back often!

    You asked for advice on how to help your husband see that there is a reason for fighting and surviving. Is there any way you can get him interested in coming here and reading the various topics and posts here? He doesn't have to ask questions or post anything until he's feeling comfortable to do that... but I bet if he just reads all the various posts, he will feel better and realize that there is no such thing as "hopeless"... it ain't over until it's over :)

    I can totally understand though why he feels devastated. When I first met my oncologist, not only did we click right from the beginning, I could tell that she was extremely smart and well-educated, and for whatever reason, I knew that I could trust her and she would never lead me astray. I made it through 9 months of chemo and 6 weeks of daily radiation... and then, a couple of months later, a PET scan had shown that the cancer had spread to my right adrenal gland and my lungs. My oncologist was very good in that she said we would treat both areas, but before we knew it had spread and were waiting for the biopsy results, I insisted she tell me what the prognosis would be if the results prove it had spread. She didn't want to tell me... she said we'll cross that bridge when we get to it. But I insisted. She said that the news wouldn't be great...if the biopsy proved the cancer had spread then that would mean I have advanced colon cancer and the statistics show that I would have 2 months - 2 years (max).

    So when you say your husband was totally devastated, I know EXACTLY how he was feeling. It's like you leave your body... you just can't absorb those words, yet you know they are devastating. And of course, we are taught to trust our doctors that they know what they are talking about... and for the most part, they do.

    I was told this 15 months ago. If we are to go by those "well-known statistics" then that means I should only have about 9 months left, and no more options for treatments. Well, I proved them wrong! We treated the right adrenal gland by surgically removing it. As far as the lungs go, there were 12 nodules there, but even the doctors don't know which ones are cancer and which ones may be scar tissue. The largest one which measured 19mm lit up the PET scan so it was cancer... we had that one ablated (zapped with radio frequency waves.. similar to microwaving). The remaining 11 are either not growing or growing soooo slowly, they can't biopsy them or zap them. So we are in a "wait and watch" mode... and have been getting CAT scans every 2 months for the past year. Now, my onc says that if any of the nodules are cancer, they are indolent (very lazy) and since there is no sign yet of metabolic activity, the next CAT scan will be four months from the last one... so it will be in July.

    I am obviously no where near being on my last legs and have run out of treatment options! We haven't even started treating them yet because they are so indolent and small. But if we believed the statistics, I could have just shriveled up, become a hermit, and waited to die... because the statistics said that was what was going to happen.

    So you have to get through to your hubby that statistics are nothing but numbers... and numbers that are soooo out of date! I am going to assume that he has medical insurance of some sort, so is going to be covered to get whatever treatments his oncologist recommends? Keep in mind that statistics are done randomly and there are so many folk out there who DON'T have insurance, so can't afford to go to doctors, let alone get the treatments. So unfortunately, they do die. There are also a lot of elderly people who have this cancer and they die because their systems just can't handle the damage the disease does or be able to handle the treatments (if they can even afford them). But statistics don't differentiate between those who have insurance and those who don't. Someone who is strong and healthy vs someone who is elderly and frail. So hubby has all of that going in his favour... he's not elderly, he's strong and healthy and he has insurance... so he certainly does not have to be an unfortunate statistic.

    I'm not a praying gal... but I am a believer that thought plays a huge role in our lives and well-being. The cliche "Be careful what you wish for" or "Be careful what you think" is very true! Any thoughts we have will come back tenfold... any thoughts others have for us, will have the same affect.

    And with that, you can tell him that I am sending him healthy, healing and peaceful thoughts from Canada ;) The first step is to get over the feeling of panic and devastation and believe that he is not going to be a statistic! Send those thoughts out and that will be a start... because getting over the panic and devastation is a huge thing. But it will happen :)

    Hugggggggs,

    Cheryl
  • cbcardb12
    cbcardb12 Member Posts: 84
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    My First Post - Part 2
    Thanks Everyone!

    I realized after sending the post that I had not signed our names! We are Carolyn & CB. You all have so made me want to cry. Your posts are so wonderful & inspiring, and I am going to get him to read them. I want you to know that you have lifted my spirits also. I feel the same way that you all do. This is God's plan, and it will not be over until He says it is. My cousin reminded me that the sickest of us are not necessary the ones that leave here first. None of us are guaranteed tomorrow, and we have to live like this could be the last day.

    Thank you so much for reminding me of that.

    Hugs,

    Carolyn
  • KathiM
    KathiM Member Posts: 8,028 Member
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    cbcardb12 said:

    My First Post - Part 2
    Thanks Everyone!

    I realized after sending the post that I had not signed our names! We are Carolyn & CB. You all have so made me want to cry. Your posts are so wonderful & inspiring, and I am going to get him to read them. I want you to know that you have lifted my spirits also. I feel the same way that you all do. This is God's plan, and it will not be over until He says it is. My cousin reminded me that the sickest of us are not necessary the ones that leave here first. None of us are guaranteed tomorrow, and we have to live like this could be the last day.

    Thank you so much for reminding me of that.

    Hugs,

    Carolyn

    Carolyn.
    NO ONE human knows how long we have on this earth....

    You have already learned a valuable lesson in this, to live every day to the fullest! We, as cancer survivors, get this advanced warning more often that many...like accident victims and other health concerns...

    That said, statistics for survival, at their best, run about 1 1/2 to 2 years BEHIND actual. So, basically, they don't keep up...I have a patient partner that was originally dx'ed 'no surgical candidate'. Within 3 months of intensive chemo, he got his surgery, and a liver resection that took 60% (!) of his liver. It's the most incredible organ...it grows BACK!

    Have faith and hope and peace, dear one, and welcome to the semi-colons!

    Hugs, Kathi
  • kimby
    kimby Member Posts: 797
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    Welcome
    Welcome, Carolyn. I'm so sorry that you need to be here. I hope you find our little "home" helpful and welcoming. Please stick around!

    First, I really REALLY believe that your husband needs a new oncologist. I fired several until I found the right doctor at the right facility. I need a doctor that offers hope. My entire team is aware of my feelings on the matter and they accept and encourage me to remain hopeful in the face of my own mortality. Your cousin is very wise. None of us know when we are done. The thing with canzer is it gives us a chance to prepare for the inevitable. Every human being is terminal; we're all one day closer to death. canzer doesn't change that. That doesn't mean I intend to die soon or from canzer. Actually, (despite popular medical opinion and statistics) I've decided that I don't want to die from canzer. So, I'll die from something else. I'm thinking 30 more years....maybe a heart attack while doing something kinky with my husband....sorry, that's another story.

    Keep looking for that right "fit" for doctor AND facility, if your husband is willing. Optimism does exist in the medical community.

    The liver is a pretty amazing organ. Although it's true that most livers never become resectable, it isn't true that it's either that or chemo. Systemic chemo can and does shrink liver tumors to become resectable, although that has not been my experience or that of 'most' of us out there. It happens. There is also: radiation, stereostatic radiation, RFA, chemoembolization, HAI pump, sirt spheres, terra spheres...the list goes on. Also, since the liver regenerates, more and more people are becoming candidates for these and other therapies. You can have radiation, for instance, wait for liver regeneration, have sirt spheres, more regeneration, and have the hai pump implanted. Yep, long haul and not everyone is willing/able to do all that. I'm not saying you should or shouldn't. I'm saying your husband has CHOICES. There are options.

    Your husband's better overall health will help his ability to fight this, but it will also help him get past the depression. This stage was the toughest time for me. Coming to terms with my life being turned upside down. He now has a new focus that he didn't get to pick. The loss of control, the fear...it's truly overwhelming. He will get there. My husband was just there for me. He didn't push me to feel one way or another but loved me right were I was at. I know it wasn't (and isn't) easy for him, but that is what he still does. As a 'lovegiver' (I hate the term caregiver...I'm not in final stages and I don't need daily nursing care - geesh!) you have a really tough role. I believe it is so much harder for you (and my husband) than for me or your husband. I have something to focus on and fight. I have decisions and appts and scans and treatments. My husband gets to watch all this helplessly. He gets to see me cry, hurt, get ill. He gets to support but it isn't his fight. I see the pain in his eyes as he worries about me. I hear the pain in your words here, as you worry about your husband. Good luck to YOU and to your husband.

    If you want to read our 'stories', get updates on our progress, see posted photos, or read our blogs just click on our pictures or user name to the left. It will take you to our expressions page. There is a wealth of information posted by our members here that I think you will find helpful. Many people, I'm sure, have told your husband it's ok to get mad, sad, scared, whatever...well, duh! It's also ok (and recommended) to have FUN! Try to have fun, laugh, live and dance! Will it extend his life? Who knows....but it makes me WANT to live life! Grins and giggles therapy!

    Kimby
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    Hope
    Carolyn,

    You can click on my story by selecting my name to the left but short story is this. The original oncologist we met told me I was not resectable (I had 5 bilobar liver mets, largest being 5.5 cm). He told me I had 2 years.

    We sought a second opinion at a national cancer center (MSKCC) and the oncologist there told me that she could not give me a prognosis as everyone is different. As Kimby put so well, there are lots of options out there for dealing with liver mets and the liver is a magnificent organ.

    After 5 treatments of FOLFOX my liver mets shrunk about 80% and on 2/20/09 I had my liver resection and colon surgery (as well as had an HAI pump implanted for adjuvant therapy). My last CT scan on March 16 indicates I am currently NED. I will continue 6-7 more months of chemo to hopefully annihilate any microscopic buggers that are floating around.

    So in 4 months I went from one doctor telling me I was inoperable to having my surgery. I pray every day I will stay NED and I exercise and juice to help my body's immune system fight. When I go to treatment I meet people in the waiting room ALL THE TIME who had livers covered with mets and after treatment are either NED or getting ready for re-section.

    So make sure any opinions you get about resectability come from a surgeon (preferably one who specializes in liver mets) and not from an oncologist. And if your husband isn't currently resectable NOW that does not mean that he won't be resectable after chemo treatment.

    Amy
  • pamysue
    pamysue Member Posts: 105
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    cbcardb12 said:

    My First Post - Part 2
    Thanks Everyone!

    I realized after sending the post that I had not signed our names! We are Carolyn & CB. You all have so made me want to cry. Your posts are so wonderful & inspiring, and I am going to get him to read them. I want you to know that you have lifted my spirits also. I feel the same way that you all do. This is God's plan, and it will not be over until He says it is. My cousin reminded me that the sickest of us are not necessary the ones that leave here first. None of us are guaranteed tomorrow, and we have to live like this could be the last day.

    Thank you so much for reminding me of that.

    Hugs,

    Carolyn

    Carolyn
    Sometimes I feel like this disease is harder on the people who love me than on me. This board is full of support and great advise for both patients and caregivers.

    Take good care of yourself. You and your husband are in my thoughts.
    Pam
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Welcome
    I want to welcome you and your husband to this board. I'm sorry you had to find us this way, but you have come to the right place. Here is where you will find a lot of support and information. Never ever give up. We are always here to help and listen.

    Kim
  • maglets
    maglets Member Posts: 2,576 Member
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    Welcome
    I want to welcome you and your husband to this board. I'm sorry you had to find us this way, but you have come to the right place. Here is where you will find a lot of support and information. Never ever give up. We are always here to help and listen.

    Kim

    welcome
    Welcome Carolyn: there are so many wonderful people on this forum. I hope you will find a home here.

    Carolyn I was diagnosed in 2006 with liver mets from the colon. I was given a complete total for sure death sentence! Three surgeons turned me down as a candidate for re-section. I was diagnosed in spring and told to hope that I would make it to Christmas 2007.

    Well guess what? I am here....I have had 2 liver re-sections....I am currently doing chemo...oxalyplatin and xeloda and I am going strong. actually I have done 2 sessions of chemo but still here. I don't like the chemo and this round is making me kinda nauseous all the time but so what? It will end and I will have a little free time until the next round of whatever.

    Please tell your husband not to give up.

    Hugs and cheers to both you and your DH

    ~mags~
  • snommintj
    snommintj Member Posts: 601
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    maglets said:

    welcome
    Welcome Carolyn: there are so many wonderful people on this forum. I hope you will find a home here.

    Carolyn I was diagnosed in 2006 with liver mets from the colon. I was given a complete total for sure death sentence! Three surgeons turned me down as a candidate for re-section. I was diagnosed in spring and told to hope that I would make it to Christmas 2007.

    Well guess what? I am here....I have had 2 liver re-sections....I am currently doing chemo...oxalyplatin and xeloda and I am going strong. actually I have done 2 sessions of chemo but still here. I don't like the chemo and this round is making me kinda nauseous all the time but so what? It will end and I will have a little free time until the next round of whatever.

    Please tell your husband not to give up.

    Hugs and cheers to both you and your DH

    ~mags~

    Two years?
    I know everyone is tired of me always posting my story but I try only post it when necessary. My original diagnosis was 2-3 months. Several Drs told me to go home and settle my affairs. I had 6 tumors over 5 cms. Plus others. I responded well to chemo and later qualified for resection. 2 resections later I'm almost NED. I was declared NED for about 3 weeks. Then the Dr's saw something really small in my left lung. It could be nothing. So just because you have a 2-3 year prognosis now doesn't mean that will be your prognosis after treatment. Plus, 2-3 years from now will see many new developments that will probably buy more time. Good Luck, keep us posted
  • sheri22
    sheri22 Member Posts: 273
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    Positive posts
    Carolyn
    First of all you are right only God kmws the outcome, 2nd of all I was also diagnosed with stage 2 3 yrs ago then Jan 22 09 was diagnosed with stage 4 met to lungs
    dr was very blunt with me told me stats cause I had to ask, to make a long story short CE was 125 in Jan now down to 12 my ca has shrank in colon and lungs. No mateer what anyone says there is always hope if you dont give up I believe in prayer and have an attitude I only have ca on chemo week the rest of the time it is my life, check out some of these posts that are positive on here then have your husband chck it out I was really depressed until I realized the stats are NOT accurate they are really outdated lots of luck hope this helps you and your husband
    hugs

    Sheri22
  • sheri22
    sheri22 Member Posts: 273
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    snommintj said:

    Two years?
    I know everyone is tired of me always posting my story but I try only post it when necessary. My original diagnosis was 2-3 months. Several Drs told me to go home and settle my affairs. I had 6 tumors over 5 cms. Plus others. I responded well to chemo and later qualified for resection. 2 resections later I'm almost NED. I was declared NED for about 3 weeks. Then the Dr's saw something really small in my left lung. It could be nothing. So just because you have a 2-3 year prognosis now doesn't mean that will be your prognosis after treatment. Plus, 2-3 years from now will see many new developments that will probably buy more time. Good Luck, keep us posted

    Not tired of your posts
    Snommintg
    I certainly dont get tired of seeing you post you are an inspiration to a alot of us I still have my crappy days chemo week and I read a good post and it gives me that hope and attitude again to keep fighting. so keep posting

    Sheri22
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
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    You've gotten some great answers here
    I just wanted to let you know that I'm thinking of you, Carolyn and CB, this morning and lifted you in prayer to our Heavenly Father.

    God keep you in His hands today,

    Diane Tavegia
  • Sandi1
    Sandi1 Member Posts: 277
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    Welcome
    First of all Welcome. When my husband was first diagnosed,Stage 4 with mets to the liver and lungs, he had surgery to remove tumor in his colon, but had to many tumors on his liver and lungs to have those removed. I thought that my life had ended, the surgeon told him, if you had come to me just 5 years ago with this I would be giving you 5 months to live, but now with all the advances of chemotherapy you have a good chance of beating this. Well, Carolyn, it has been 8 months since my husband was diagnosed and here we sit with my husband having no evidence of cancer in his body. Sure, we went through hell to get to this point, colon resection surgery, port insertion and removal then another port inserted, then 6 months of aggressive chemo - all the while my husband continued to work full time and fight like hell. He was determined that it was not his time to go, and he wasn't going. What i'm trying to say is, no matter how bad it may seem there is always a brighter side - have your husband read some of the posts on here, it will give him encouragement to fight. When I first came on, it was the answers and encourgement I received on here that helped me get through this, if not for the people on the board I would probably be crazy right now. Treatments have advanced so far even in the last few years, your husband has a good chance of becoming NED (no evidence of disease), so have him read some of these posts, or you read them to him like I did for my husband, and don't let this disease run your life - you run the disease.

    Good luck to both of you, I will keep you in my thoughts and prayers.

    Sandi
  • cbcardb12
    cbcardb12 Member Posts: 84
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    You've gotten some great answers here
    I just wanted to let you know that I'm thinking of you, Carolyn and CB, this morning and lifted you in prayer to our Heavenly Father.

    God keep you in His hands today,

    Diane Tavegia

    Thank You
    Hi Diane,

    Thank you so much! Have a wonderful, blessed day. Everyone has been so helpful already. I plan on letter him read all of the post this week.

    I appreciate all of your kind words.

    Carolyn
  • jenalynet
    jenalynet Member Posts: 361 Member
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    Hello
    I was diagnosed Stage 4 in oct. 2005....I was told that I would not live long either. I am still alive and still fighting this disease. I hope your husband decides to fight this because there is always hope. They said I couldn't have liver resection also but after chemo my tumors shrunk enough to do the resection which I am so thankful for. Hugs to you, Audrey.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    snommintj said:

    Two years?
    I know everyone is tired of me always posting my story but I try only post it when necessary. My original diagnosis was 2-3 months. Several Drs told me to go home and settle my affairs. I had 6 tumors over 5 cms. Plus others. I responded well to chemo and later qualified for resection. 2 resections later I'm almost NED. I was declared NED for about 3 weeks. Then the Dr's saw something really small in my left lung. It could be nothing. So just because you have a 2-3 year prognosis now doesn't mean that will be your prognosis after treatment. Plus, 2-3 years from now will see many new developments that will probably buy more time. Good Luck, keep us posted

    In Fantasy Land...
    I know this is mean, but there's got to be a part of you that would like to dance on those doctors (who gave you 2 months to live) graves. I know I would. I'd love to dance on the grave of the clown who missed mine for so long.
    -p