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Thread: Dad diagnosed with Stage 4 Colon Cancer

  1. #1
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    Dad diagnosed with Stage 4 Colon Cancer

    Hi all,
    My dad is 53 and has just been diagnosed with Stage IV colon cancer and it has spread to his liver and lungs. It's all very new. He'd been very sick for a long time, but avoided the doctor and once he finally went when the pain became unbearable they made him have a colonoscopy, where they found a 5cm long tumor and basically diagnosed him with cancer on the spot. He's had some blood tests and a CAT scan, and met with his surgeon today who gave him the bad news. I guess the next step is more tests, PET scan (what is this exactly?), and then he'll see an oncologist. I had a bad feeling over the past couple of weeks during all of the waiting, but still thought maybe things would be ok and it wasn't true. Now I'm scared beyond belief. No one this close to me has passed from cancer, and I'm so scared, I can only imagine how he feels. I live in Boston, and he lives in Pennsylvania, and now of course I want to be at home with him... I really don't know what to do or how soon to go home and spend time with him. I feel like I want to know every detail at every second of the day and my anxiety is driving me crazy. I'm trying to have hope and be positive, especially for him, but also trying to be realistic. What are the chances of him fighting this? I mean I guess at this point treatments will only help prolong his life, but nothing will cure this, right? It's also scary for me because I was diagnosed with colitis when I was 19 (I'm 23 now) and have had regular check-ups and colonoscopies over the years, but now it's scary to know that I am at a higher risk.. but i guess as long as I keep on top of it and continue to monitor my own health then that's all I can do. I'm sorry if I sound silly, and I don't even know what to say, I guess I just needed to vent to people who understand where I'm coming from, and could really use some prayers. Like I said, it's all so new and this is only the beginning, I can only imagine what the road ahead is going to be like.. and I'm not looking forward to it. If anyone has any input or advice for me, I'd really appreciate it. And thanks for letting me vent.
    Best wishes,
    Elicia

  2. #2
    Senior User Alllison's Avatar
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    I am so sorry that you and your family are going through this. This has been a wonderful site for me to "vent" and answer questions that I have!!!!!! It is a scary situation to be in but there is always hope so don't ever give up!!!!!!!! The PET scan is an excellent scan to detect where the cancer hot spots are. They inject a sugarized liquid/dye and the cancer pulls the sugarized liquid out of your system so when they do the scan, cancer spots "light up" on the scan (this is just a rough description.) My husband and I recorded all of our doctor's appointments because there was so much information to take in. We also got a 2nd opinion. We have a wonderful local general oncologist but we went to a local university hospital to meet with an oncologist that specializes in colon cancer for our 2nd opinion. We have been working with both and that has been wonderful!! I figure the more heads that are put together, the better my treatment options. It is very scary when you read the statistics on-line about Stage IV so just don't look at them. I personally know two people that were Stage IV colon cancer and have been cancer-free for over 5 years. I also know people that they told they were given 6 months to live and that was several years ago. It is a long journey and the surgery and chemo are no fun, but you will find a great support system in there. Sending prayers your way to you, your father and your family. Prayers have brought me such peace and I hope they do the same for you!!!!!!!!
    Age: 38
    March 18, 2012: Emergency Appendectomy w/ Adenocarinoma & Carcinoid Tumor;Adenocarinoma spot on liver (Stage IV)
    April 2012: Micro Liver Ablation/ Folfox 6 Chemo begins
    September 23, 2012: Last Folfox 6 treatment
    October 2012: Otreatide scan all clear/ MRI - spot on liver barely perceptible
    November 28, 2012: Liver resection (15%)- Clear path report
    December 7, 2012: CANCER-FREE!!!!!!!
    March 1, 2013: Clear CT scan
    June 14, 2013: Clear MRI-
    August 2013: 3 spots found (1 on each ovary/1 in rectouterine fossa)
    Sept 2013: Folfiri +Avastin begins
    Nov. 2013: PET & CT =1 spot undetectable and other 2 spots 40% shrinkage
    March 2014: Finished 12 rounds of chemo
    April 2014: Total hysterectomy, partial rectum resection
    May 2014: NED
    June - July 2014: 25 rounds of pelvic external beam radiation (precautionary)
    August 2014: CT scan = NED
    Nov/Dec 2014: CT/PET- enlarged lymph node on ascend. colon
    Dec 2014: begin 5 FU, Leuc. and Avastin

  3. #3
    Super Moderator Top User Baz10's Avatar
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    Elicia,
    Sorry to hear of your dad's diagnosis which brought you here.
    It's a great forum for help and support with many very knowledgable members.
    First,
    Whoa, your dad has been diagnoses with stage 4, slow down he hasnt passed, so don't get ahead of yourself.
    There are many on here diganosed stage 4, who have or are undergoing treatment and are living to be able to help existing and new members.
    To be totally frank, stage 4, isnt a good prognosis, however it isn't necessarily a death sentence, it depends on quite a number of factors.
    A pet scan is a CT scan with mildly radioactive contrast solution containing for simplification sugar base as cancer cells use sugar in a different way to normal cells and the cells (in bulk not individual cells are highlighted.
    When they have the full diagnosis, they will formulate a treatment regime.
    As Allison said, she know a number of people that are living 5 years after diagnosis, I personally know of 7, one has been cancer free nearly 12 years after finishing treatment and this lady plays, tennis, walks miles and just gets on living a normal life.
    Yes she has a colostomy bag, but isn't shy about it and says jokingly it's her second dog that's more attached to her than her Spaniel.
    I'm afraid your dad and the family are in the hurry up and wait situation, as everything seems to take ages, which adds to the anxiety.
    I agree with Allison about taking notes and having a second person at each appointment as the volume of information given can be overwhelming.
    If you don't understand the medical terminology don't be afraid to ask them to give it to you in plain language, not medical speak.
    Wishing your dad the best possible outcome and whenever you want to vent, scream or lose your cool, don't apologise just go for it, we're here to listen and support you however we can.
    I'm sure other members will chip in when they pick up your post.
    Best wishes
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20.
    Stop grumbling Baz, your still alive and kicking so far.

    Motto
    Do what I love doing, when I can until I can't.

  4. #4
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    Hello Elicia!

    I also have a 23 year old daughter and I have Stage 4 corectal cancer. My daughter wanted to move back home and take care of me also. I told her that me knowing she was settling into her new life and was able to support herself, meant more to me than having her home. Because I did not have to worry about her. But there would be times during my treatment when me and her mother would need her to come home and help. So be prepared to the same for your father.

    The first few weeks after finding out are by far the worse. The first Dr. I talked too said there was nothing that could be done and I should go home. Get the second opinions and find the treatment team you are comfortable with. The good news is that now they know what is wrong they will start to make him alot more comfortable.

    I am trying to say that do not write your father off just yet. Treatments have come a long way, and you are at the beginning. This will be a marathon not a sprint. Alot depends on where the mets are located in the liver and lungs. The Pet scan will provide alot of information.

    Your are in our prayers.
    Age 48 Male
    5/18/12 - Family Dr ordered emergancy CT and colonsopy
    5/23/12 - Diagnosed with Stage 4 Rectal Cancer w/mets in Liver
    6/28/12 - Combined lower bowel resection and liver resection.
    9/7/12 - Last day of Chemo. Folfox Blood Clot in Leg.
    1/25/13 - Last day of Second Round of Chemo Folfox
    4/25/13 - Ostamy Reversal
    9/9/13 - Clear Scan-High CEA
    9/16/13 - Pet Scan shows 4 new spots in Liver
    10/3/13 - Second Liver Resection removes tumor #6,7,8,9.
    11/1/13 - Started FolFiri
    5/13/14 - Pet scan shows 3 large tumors in the Liver. Time to see Surgeon again.
    6/12/14 - Third Liver Resection removes Tumor #10,11,12.
    7/16/14 - Started Xeloda and Avastin
    9/22/14 - Fistula goes septic. 2 Major Surgeries later Permanent Ostomy.
    10/8/14 - Blood clot in Leg.
    12/19/14 - Started Xeloda and Avastin again
    5/22/15 - 3 new tumors in my liver. No surgery this time.
    6/25/15 - First Procedure of trial study using micro-spheres(Y90)

  5. #5
    Moderator Top User esk2poo's Avatar
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    Elicia,
    You have been given some great information here already so I am saying prayers for you and your family.
    God bless,
    Allen
    Stage 3B Colon cancer 8/23/2011
    Resection 9/15/11
    Folfox starts 10/31/11
    Dehydration,blood clots, numerous hospitalization due to complications
    Gall bladder/ hernia repair, 4/2013
    Melanoma sole of right foot 2010
    Clean scans so far.
    12/14/14 that little puppy in my avatar went to heaven

  6. #6
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    Try to relax and breathe a little bit! Probably soon you will know what the treatment regime will be. If your dad chooses to have treatment (remember he will have the choice) then you will know more about the prognosis after the treatment starts.

    One thing I would like to touch on real quick is the importance of you continuing to have your colonoscopies done. Remember if detected early, the prognosis is better, and if you have them often, then the polyp or cancer can be removed earlier, if you ever even get a tumor or polyp.

    I have (or should i say had) stage 3 rectal cancer. I had chemo and radiation and when I had surgery, there was no longer evidence of disease. Now I am having additional chemo to help reduce the risk of the cancer coming back.

    Good luck to you and your family. Be there for him but try not to smother him. When we have cancer, we do like to feel as normal as possible

    KC

  7. #7
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    Hi everyone,
    I just want to say thank you for listening to me and responding with your knowledge and positive thoughts, I am overwhelmed and must say I feel a huge sense of relief after reading all of your posts. It's extremely comforting to hear of all of these wonderful people who are fighting to live everyday and beating this awful cancer, even when the cancer is extremely advanced. I now have high hopes that my dad can battle this, and this is NOT a death sentence. I can stay positive and continue to support him in every way possible.
    I will definitely mention to him recording his doctors appointments; he's a musician and obsessed with technology so I'm sure he has a thousand different devices he'd love to use to record his feedback from doctors. He just bought a blackberry tablet and is looking forward to using that to keep his appointments and information organized LOL.. gotta look on the bright side of things. I just hate how sad he sounds when we talk, and I hear the fear in his voice. Obviously I can't imagine how he feels or what he's going through, but the worst part is that there's nothing I can say or do.. this is just reality. I just wish I could give him some sense of comfort. Now I'm just trying to plan a visit home to visit for a little before everything really gets going...
    Thanks again for all of your positive posts and I appreciate the thoughts and prayers more than I could ever put to words.. it means the world. I will surely put all of you and your families in my prayers as well. I'll be sure to update with any new information I might have. Take care.
    Thank you so so much.
    Elicia

  8. #8
    Super Moderator Top User sheila's Avatar
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    Elicia- Im sorry to hear about your dads diagnosis- hes not very old yet and thats a plus for him
    my mom wasnt diagnosed untill age 73-74 going on 61/2 years still here how long? we dont know but when she first went in we thought we lost her right then she waied untill it was an emergency.
    then we got the 6mo to a year then after several treatments they said be prepared but she has been amazing them since- were having some problems again at the present moment but she still up and about. dont ever give up and dont ever put your expectations too high. take it as it comes and do the best with it. hang in there
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  9. #9
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    Hi everyone,

    Just an update on my dad. He finally had his PET scan, and the report said there are innumerable spots covering his entire liver.. (they couldn't even give a number?!) the biggest measuring at 44mm, mets bilaterally in the lower lobes of the lungs, biggest measuring at 17mm, and some mets in the lymph nodes that are above the original tumor in his rectum. They also noted that there are some physiologic changes in the bladder and urinary tract, but I'm not even exactly sure what that means...?

    He found a great doctor, Dr. Edith Mitchell, at Jefferson University Hospital in Philadelphia PA, and met with her last week for the first time and loved her, which I am so happy about. I wish I could have been there though. She wants him to get another PET scan at Jefferson because she doesn't think his is detailed enough and thinks they have a machine or two that are more advanced. From what he tells me, she said although this can't be cured she believes she can help give him some more time.. (hoping for 24 months), so he has a couple more tests this week and then goes in on Monday to have his chemo port put in and then he'll be starting with chemo in hopes that will shrink things. He is in immense pain and has been for weeks now, and she gave him a patch to relieve the pain which he says has been helping a little. She also mentioned that she'll write him a recommendation for permanent disability because he'll never be able to work again, especially because of the damage in his liver... ?

    This is just killing me to be honest. I'm a mess and my range of emotions are insane. Everyone I talk to says 24 months is a great goal especially considering how advanced his cancer is, so I guess it is, but I'm sorry... that is not enough for me. I know that's just an estimate and no one can put a timeline on his life, and I know it all really depends how he responds to treatment, he could respond well and live longer, or he could respond poorly, so I guess we won't know until he begins. When I think about the fact that he will never work again.... that just breaks my heart and makes it all too real. When I logically think about it though, no matter how long he lives even if he was 95, I'd never be ready to lose him and it'd never be long enough, but I don't know... I'm just so sad.

    Does anyone have any insight, particularly referring to his liver. They say his ENTIRE liver is covered, so what does this mean? Is chemo the only thing that may help? what is the goal here? is this REALLY bad like they make it sound? I mean clearly it isn't GOOD, but I don't know. I hate this waiting game and I hate that all of this is out of my control. I'm so angry, yet sad and anxious all the time. I get these crazy overwhelming feelings that out of nowhere take over my entire body and I literally have to stop, talk to myself, and just take deep breaths to calm down. I already go to therapy thank god LOL.

    I'm also just so scared.. of what's to come and everything. I have absolutely no idea what to expect when he's on chemo. Like i said before, I live away from him so I feel like I'll be so shocked when I see him next. I don't know how sick he's really going to be and if he's going to lose his hair and stuff. I'm just so sad for him. I visited him 2 weeks ago and he's already so sick and in so much pain, how much worse can it get? Or is it completely different? Can anyone help me with what I might expect when he's on chemo?

    Sorry this is long and so spastic and all over the place. I was kind of just ranting everything that came to mind.

    Thanks for listening
    Elicia

  10. #10
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    Elicia, this is the place all of us vent, ask for information, rant and rave. Think of us as an extended family that will not show up for Thanksgiving dinner.

    Now to answer your questions. I hate to put it to you this way, but so much depends on how he reacts to the chemo. Or to put it differantly, how his cancer reacts to the chemo. The good news is they will now start to get his pain under control. As to how much time, only God knows and he does not answer that question for us. If the initial treatments go very well, they may try to do selective surgeries to slow down the cancer and improve his quality of life. Chemo can do great things for some people and then do very little for the next person. So many answers for your questions is "depends on how he/it responds to the chemo" and it is differant for each person.

    Friend of mine had almost the exact chemo treatment I did. She was sick for 3 days afterwards, could not get out of bed for another day after that and lost her hair. I worked during my chemo and lost no hair. Set short term goals and celebrate them. Forget 2 years, 5 years etc.! Pick something that is a couple of months away, let that be your goal. Celebrate when his quality of life improves. Do not pass up any opportunity to bring joy into his life.

    Sorry I cannot help more, others will have more to say, and will say it better.

    Prayers will be said for you.

    Strike
    Age 48 Male
    5/18/12 - Family Dr ordered emergancy CT and colonsopy
    5/23/12 - Diagnosed with Stage 4 Rectal Cancer w/mets in Liver
    6/28/12 - Combined lower bowel resection and liver resection.
    9/7/12 - Last day of Chemo. Folfox Blood Clot in Leg.
    1/25/13 - Last day of Second Round of Chemo Folfox
    4/25/13 - Ostamy Reversal
    9/9/13 - Clear Scan-High CEA
    9/16/13 - Pet Scan shows 4 new spots in Liver
    10/3/13 - Second Liver Resection removes tumor #6,7,8,9.
    11/1/13 - Started FolFiri
    5/13/14 - Pet scan shows 3 large tumors in the Liver. Time to see Surgeon again.
    6/12/14 - Third Liver Resection removes Tumor #10,11,12.
    7/16/14 - Started Xeloda and Avastin
    9/22/14 - Fistula goes septic. 2 Major Surgeries later Permanent Ostomy.
    10/8/14 - Blood clot in Leg.
    12/19/14 - Started Xeloda and Avastin again
    5/22/15 - 3 new tumors in my liver. No surgery this time.
    6/25/15 - First Procedure of trial study using micro-spheres(Y90)

 

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