Recently Diagnosed Stage 4


I'm 51 and a father of four (17,16, 8 and 3).  I've also been diagnosed with stage 4 bowel cancer with mets in my liver.  At first I had a CT scan with contrast which showed the thickening of the bowel and some lesions in my liver and involvement of lymph nodes. I had a sigmoidoscopy where they found this ugly doughnut looking partial blockage in my sigmoid colon.  They also found a couple of polyps that they removed.  A second sigmoidoscope procedure fitted a stent but it caused a fair bit of tenesmus straight away and it was pushed out of the structure completely and had to be retrieved.  Not a pleasant event as it was sharp and spiky and stuck in my rectum.

I'm due to start Chemo (Oxyaplatin drip and Capecitabine tablets) on thursday and I'm nervous as to what to expect.  My main problems have been with hard to control bowel motions and abdo pain from wind along with incredible tiredness.  I think the abdo pain and near incontinence might be dealt with by diet and I suspect the tiredness is related to anaemia.  I'm praying that the Chemo helps as I really want to see my 3 year old grow up a little.  He's so little. The others are just old enough to understand if not actually cope with it all.

My wife is struggling the worst.  She is terrified and heartbroken that she will lose me and can't seem to find anything hopeful to ease her emotional distress.  I hate seeing it knowing there is practically nothing I can do but cuddle her.  She has seen me go downhill since the beginning of February and she is really panicking.  She has already been a mountain of support but I need her strong for when I start to panic - which I'm sure I'm going to at some point.  I'm hoping that reading some of people's stories on this site might help her understand that it's not an instant death sentence - or not yet anyway - and that people have had good results. 

Anyway, I wish you well with your own journeys as I begin mine...


  • Trubrit
    Trubrit Member Posts: 5,800 Member
    Welcome to the forum

    You will find stories on this forum that will not only give you hope, but make your journey less stressful. There are many Stage IV folks who are doing well, and many more who are continuing with treatment and making it through.

    I remember they gave me precentages when I was first diagnosed. They weren't good, but I decided that there was no reason I should'nt be in that small percentage that survived, and that, my friend, is the mindset that you and your wife need to take. 

    The odds are stacked agaisnt us, but there are folks beating the odds every day, and absolutley no reason why you shuoldn't be one of them. 

    It is totally normal to panic, and not know how to deal with the fear and emiotions that come with a new diagnosis. You will find that starting treatment will help alleiviate most of that fear, the rest you have to work on yourself. Know that stress and fear are not healthy. Cancer thrives on it, so you eliminate as much of it out of your life as you can. Sure, the fear is there, but keep it to a mininmum. I used to allow myself 10 minutes a day to cry, think 'what if?', worry about my kids, my husband, myself, and then I would take a deep breath and move on. It worked for me. Find something that works for you.

    I remember well my first chemo treatment. I watched as each person in the waiting room was called back. They went through the door and I sat there wondering what was happening behind that door; and then it was my turn. Its scary! And then, when you walk out that door, having sat through your first treatment, you will think 'well, that wasn't bad at all'. Unless something like an allergic reaction, happens, chemo infusions are easy. They will hook you up (do you have a port) and you just sit there and read, or snooze, or talk to listen to music or whatever takes your fancy. They unhook you and you go your merry way. The side effects after the treament, well, thats another story. 

    I was on the Oxaliplatin. You may experience a tingling or tightening in your throat, and a sensitivity to cold drinks. You may want to keep a pair of gloves in the kitchen, because you will probably experience that same sensitivity when getting items from the fridge. I even had problems holding cold cutlery and utensils.  Take good care of your hands. Try not to get cuts or sores. Use moisturizers. Once a sore starts, healing is slow. Slather your feet with moisturizers also, as the Oxi will dry out the skin and once they crack, its hard to control. 

    As you know, there are a slew of other side effects, but the sensitivity to cold will probably be the first to hit you. 

    I hope you can get control of the bowel also. Keep a record of what you eat, that will help you see a pattern and then eliminate or add foods that help or don't help.  In fact, keep a record of absolutely EVERYTHING that happens to your body, and go over that record with your Oncologist when you visit with him before chemo.  

    Good luck with everything. Visit often, and we will help you through this. 

    Sue - Trubrit

  • gfpiv
    gfpiv Member Posts: 59 Member
    Hi there

    Hey Mart, sorry you had to join our exclusive club.  As I just mentioned on another thread...have you looked into HAI treatment?  It can really be a lifesaver under the right conditions (it was for me).  In general, folks with mets limited to the liver may be considered decent candidates - though if your lymph node involvement is significant or if you have other issues that my preclude this from being a possibility.  Would love to see you get some more quality time with your family - I have an amazing 10-month old daughter that I am able to enjoy thanks in large part to HAI, what a blessing she is.

    As for what to expect from chemo - it really does vary greatly by person.  For me, the 5-FU/capecetabine really was a cinch.  But the Oxaliplatin can suck - true, the shooting pain from cold things and the cramping went away after a couple days, but you and your onc have to be very careful that the neuropathy in your hands and toes isn't lasting the full time between treatments...because by then there's a serious chance of permanent neuropathy once you are done treatments.  For me, this Ox neuropathy got worse, peaking ~7 weeks AFTER I stopped Ox treatments.  It eventually declined, but I still have some minor residual and permanent neuropathy in fingertips and feet.  Given what I know now, I wouldn't have done 12 full txs of Ox - especially since the VAST majority of the benefit IMHO is gained in the first 6-8 txs; thereafter the risk of permanent neuropathy gradually overtakes any added benefit.  I probably would have done 6 to 8 full txs of Ox, then maybe a couple reduced doses.  But who knows, you may react better to the Ox than others.

    As for the emotional side - you will likely find you have more strength than you think, as you get used to dealing with this.  And I understand your wife's feelings of despair and helplessness at times, mine felt similarly at first.  I was lucky enough to get miraculous results from treatment, I'm hoping you will too.

    Anyway, feel free to PM me with q's on anything.

    Best wishes,


  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Sorry you had to find this

    Sorry you had to find this group but welcome. As mentioned, there are a number of people on here that started out stage four and are doing well for many years. That being said, you can never assume that your journey will be the same as someone else's with the same prognosis, whether good or bad, because it's different for everyone. As Sue mentioned, try not to allow stress to become too bad. It will reduce your body's ability to fight. Do not go by numbers on the internet, much information is old or unfounded or specific to one person.

    I started out as s stage 3 and then recently was diagnosed with lung mets. If I'd had them at the beginning I'd have been a stage 4, too. I just finished radiation for the lung spots a cuple of weeks ago and today I am living pretty much the same as I ever did. I expect to be around for a long time.

    Do read some of the stories on here, they will really encourage you. They are making strides in cancer research every day. Cancer is no longer the automatic death sentence many people perceive it to be.

    Best of luck and try to stay positive, it really helps.


  • John23
    John23 Member Posts: 2,122 Member


    Sorry you found the need to be here, but welcome.

    You might want to fill out your profile page when you're in the mood. Once you post your history it will save you from having to repeat it over and over!

    And of course, you should click on other's monikers and names to see their profile page, blogs, etc. It will give you a better idea of who is who and what each of us has been through without having to ask.

    You're at the beginning of your journey, and it can be a long ride. For most if us, it never really ends; once you have been diagnosed with cancer, the worries are always hanging in  the shadows, lurking, ready to pounce when you least expect..... And like most of us, a hangnail will cause you to worry that it could be cuticle cancer... It's paranoia at it's best!

    Always seek a second opinion. The opinions should be from colorectal surgeons that are NOT of the same group or organization. Even your best favorite physician of near family closeness can make tragic mistakes. A second opinion can help avoid tragic outcomes. (trust me) Get a second opinion prior to treatment!! No physician worth having should feel insulted by a patient seeking another opinion! Most physicians learn of new treatments from other physicians, and usually through a patient that sought that "other opinion". (you can read of my experience with my favorite Gastro doc and how I may die due to her error of judgement).

    The liver is the only organ that can rejuvenate itself; it can grow back even when 75% has been chopped off. The live controls and regulates damned near every chemical in your body. Serotonin and Melatonin is balanced by your liver. The balance is what keeps everything from mood swings to heart beats regulated. You can expect many changes while going through treatments for cancer in the liver, so don't build fear around the confusion, things get better in time.

    Resection(s) (removal) of various sections of intestine can result in an ostomy, and that is no "big deal" in face of everything else. It may damage your ego temporarily, but it only becomes a big deal if you make it a big deal.

    Your interest should be in the surgical removal of your cancer, and at almost any cost. Chemicals and radiation do damage to good cells as much as the bad cells, and although it may be the choice of many, there are always other options if one chooses to go that direction. But the most important thing, is to get the tumor(s) out as quickly and assuredly as possible. That is where the experienced colorectal surgeon fits into the picture. Ask nurses regarding their opinion for "good colorectal cancer surgeons". They see it all and may be able to offer good suggestions.

    Your wife should go with you to every medical meeting, to take notes and ask questions. Your spouse is a major part of your life, and needs to be part of the healing and fight. It's tough, that feeling of helplessness, but although one may not be able to help removing the cancer, they can be of help in bolstering the ego and drive needed to do the battle to the best. There's a need to know how much help that "just being there" can be; it should be underscored and made known.

    On what may be a morbid side of all of this, it has to be said:
    Get your papers and life in order while you have time. It's a very sobering experience, and the documents will get soaked with tears, but getting things like wills, and deed changes, etc., along with plans regarding what to do with one's remains (I just got through with crematorium assignments), takes a ton of weight of the survivor's back if things go sour. It's not what anyone desires to face, especially at the beginning of this journey, but once done, everyone will be glad it's out of the way.

    There's a kind of relief; a quiet calmness that comes from getting things in order. All the sadness and fears that one feels not knowing one's destiny; being faced with the true mortality of one's being, and being able to move forward into battle, manages to have a more positive effect than can be appreciated prior to having faced it head-on. Making out paperwork brings the reality to the forefront, and once faced, it is easier to move forward. It's difficult, but can make things much easier to cope with for everyone involved.

    No, you have not been handed a "death sentence" any more than life itself carries it's own death sentence. There's no expiration date that's been emblazoned on your forehead during the middle of the night. You're just beginning a very new experience; a journey that can be as life changing as you allow it to be, or desire it to be.

    You didn't cause this debacle, and there was no way to avoid it; it happens.
    It has occurred throughout history, to good, bad, young, old, religious and atheist, to clergy and devil worshipers....... it happens.

    Get other opinions from colorectal surgeons that ARE NOT of the same group or organization prior to any treatment!

    Take some time to read the profiles of others here, and their "blog" if they entered data to one. You're not alone; what you are about to go through has been experienced by many, many others. Many are still poking around many years after their bleak diagnosis.

    For what it's worth? I was diagnosed stage 4 in 2006 with a prognosis of three to five years IF I did chemo and radiation (and that was after surgery). I did neither.

    You haven't been "time stamped". Lean forward.

    You'll be fine!

    Best wishes,


  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    Sorry you need to join our

    Sorry you need to join our group Mart, but if you've read down to this, you know there's experience and good advice here, along with people who know specifically the types of distress that come with this stuff. My story's on my profile, my journey's past 8 1/2 years and hopeful. Your's and your wife's stress levels can be tempered by many things like meditation, but I found help with anti-anxiety drugs, which at this point are rarely used. It doesn't get comfortable by any stretch, but you do acclimate to the new normal. Read the stories with your wife, it will help, and let us know how things go....................................Dave 

  • vtspa6
    vtspa6 Member Posts: 172
    Please tell your wife that

    Please tell your wife that chemo does work (at least it is for my husband).  His mets went to the lungs.  Chemo got rid of the tumor in the rectum and in the lymph nodes.  Plus it has shrunk the mets in the lungs by half and that was after 8 treatments!  It sure is an emotional rollercoaster tho!  Glad to hear you and your family have support especially with small children.

  • lizard44
    lizard44 Member Posts: 409 Member
    Sorry you had to join us

    but as others have said there are  quite a few long-term stage 4 survivors here.  I was diagnosed with  rectal cancer  with mets to the liver almost a year ago.  My treatment is ongoing, but I initially had 8  neoadjuvant chemo  treatments with FOLFOX plus Avastin prior to 28 chemo-radiation treatments, and I'm now back on  a modified chemo, with the Avastin, but without the oxaliplatin. My best advice for  the oxaliplatin is to avoid any cold foods or drinks. That was hard and I was craving ice water last summer, but I managed to get along without it.  Always wear gloves when you're reaching in the fridge or freezer- I even  wore them in the grocery store to reach into the frozen food bins.  I  received infusions of a steoid and anti-nausea  meds  at the beginning of each infusion session and they definitely seemed to help-- I never had nausea, for which I'm very thankful. The diarrhea  is a problem, but  if you carefully watch your diet you can often find what triggers it.  I had to give up my much loved caffeine,along with most fresh fruit,  and things like cabbage, brussells sprouts, broccoli, etc.  and that really seems to help.  Also, I take probiotics, which also help, and  when nothing seems to be working, there's Imodium.  The neuropathy wan't bad  during the treatments, but I  had it afterwards, and still do,  to some extent, mostly in my feet, but it's more an annoyance than a  big problem, thank goodness.

    The treatments aren't   pleasant, but it's important, I think, to stay active, or as active as possible. I've learned that if I pace myself rather than fighting the inevitable fatigue, I can do most things I could do before-- it just takes longer. Right now I'm trying to tackle weeding the garden by hand- one small square at a time.  Breaking tasks down into small increments, with  resting time in between seems to help. As others mentioned  it is hard not to get depressed and anxious, but try to not let thinking about cancer and all it entails take over  your brain.   Try as much as possible, to live as normally as you can.  Plan for the worst, as John said, but also hope for the best. There will be ups and downs and anxieties, but  just know that you can get through them.  The hospital where I get my treatments has support groups for cancer patients and caregivers.  I've never attended them myself but have heard others say they found them quite  helpful, so you might ask if there's something similar in your area that you and/or your wife could attend. Good luck to you and your family as you begin the journey, and please check in  to let us know how it's going for you.


  • SilentRenegade
    SilentRenegade Member Posts: 123
    Not a death sentence

    My dad was diagnosed at 65 with mets to the liver and lungs. Chemo and radiation killed the tumor in the colon and rectum and shrunk/eradicated most of the Mets. Then they got pissed - his colon and rectal tumors are still gone - he never had surgery. At the same time, they noticed his thyroid was weird... First onc ignored it. Finally it took over his neck - Stage IVA Medullary Thyroid Cancer. This was after he almosg bled to death due to ulcers in his colon (Avastin - rare side effect). We switched hospitals all together at this point. Later had a stroke - mets to brain - first hospital said nothing they can do, hospital he's being treated at said these were easy. You wouldn't know he had a stroke. His cancer seems to come and go as it pleases. He responds ridiculously well to radiation - it wiped out quite a few tumors. He's only had one surgery and that was on his thyroid (followed by 3 days in the ICU). He is still active considering - it's been almost 3 years. There's a lot of hope honestly... You're gonna have great days and holy **** am I gonna die days, but take it day by day. Listen to your doctors, but also follow your gut. 

  • MS2014
    MS2014 Member Posts: 58
    Keep the faith

    My mother and I have been battling for two years and we are still on the run: At first everything seems dark but you will find that are different lines to follow,you will see  that some unresectable cancers can be resectable, that are microspheres treatment,....that maybe you will have the chance to join a clinical trial.......

    First steps could be terrifying and are the most difficult but believeme in some point you will find stength to keep going. Remember that in some tiem you will become a little expert and you will see it is not a death sentence as you say

    All the best in your journey