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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 found; met. Adenocarinoma spot on liver (Stage IV)
    April 2012: Microwave 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 pathology 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 w/ 40% shrinkage
    March 2014: Finished 12 rounds of chemo; CT scan showed clear ovaries with shrinkage in spot near rectum
    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

  3. #3
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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.
    13 Aug Pain Management dept
    18 Aug ENT.
    Wait, watch and learn (Not too much I hope)
    Stop grumbling Baz, your alive and kicking and too much to do in my life.
    Motto
    Do what I enjoy doing, when I want 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 47 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
    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
    2/7/14 - Pet scan shows several areas of concern. Now we wait and see.
    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

  5. #5
    Moderator Senior 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.

  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 47 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
    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
    2/7/14 - Pet scan shows several areas of concern. Now we wait and see.
    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

  11. #11
    Senior User Buzzard's Avatar
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    I'm not a doc, not by any means, but my impression is that a body and tumor that have never seen chemo before often react quite well to chemo initially. In other words, it's not unrealistic to hope that the tumors can be shrunk considerably in the coming weeks and months. So while a total cure may fall under the category of divine intervention, the proper chemotherapy regimen can prolong life-and give a decent quality of life-for quite some time.
    Hang in there, all is not lost. And besides, optimism feels better than depression any day.
    DX with Lung Carcinoid Tumor 12/04
    Double Lobectomy 3/05
    DX with Rectal Cancer 12/26/07 Merry Christmas!
    Radiation/Chemo 1/08
    Rectal Resection 3/08, permanent colostomy. Stage 2C
    More chemo 5/08
    Chemo fries bone marrow, 9 days in hospital isolation 7/08
    Recurrence confirmed in pelvic region 12/09
    Tumor radiated with Cyberknife treatment 3/10
    Recurrence/metastasis in pelvis/abdomen 11/10
    Xeloda/Avastin 12/10 to 01/13
    Progression to lungs found 1/13
    Erbitux 01/13 to 01/14
    Acute renal failure, six days in hospital, all chemo stopped for now, 11/13
    Restarted Erbitux, lower dose 12/13
    Kidney function dips again, chemo suspended again. 2/14
    New chemo regimen of low-dose Irrenotecan started 4/14.
    Sounds like a lot of fun, doesn't it?

  12. #12
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    Elicia, just wanted you to know I am praying for you and your dad. Hope is what keeps us all going. We should all make sure our loved ones know they are loved everyday, no one knows when our time may be done.
    Everyone here gives you wonderful information. Hugs, Sharon

  13. #13
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    Hello Elicia,

    It seems like we are on the same boat. My dad, who is 54 is also just diagnosed of colorectal cancer- we just did a CT scan and it seems like his cancer has mets. to the liver already... there's a nodule that's around the size of an egg (at this point, we don't know what it is until we do the PET scan). We are waiting to do a PET scan at this point and aren't too sure what's going to happen yet. To be frank, i can't give you any information that many of the folks here can give you, but I just wanted to let you know that you aren't alone - a lot of us have a similar situation, don't give up yet! I can definitely relate to your emotions.... I too, am very scared of getting colorectal cancer later on as well... I have a very strong family history of colorectal cancer and all my family members pretty much found out when they are in stage 3/4. Anyways, I just wanted to give you a shout out to let you know that you aren't alone.

    -Char

  14. #14
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    Thank you so much everyone for the info, insight, and prayers. It means a lot to my family and I.

    Ckong - so sorry to hear about your dad and that we are in a similar situation, but you're right, in a way it's nice to know you're not going through this alone... although I of course wish neither one of us (or our fathers) had to be dealing with this. Please keep me up to date with your dad's diagnosis and treatment plan, etc.. and know I'm thinking of you and sending prayers your way.

    Also, I just need to vent right now and am really looking for some advice or insight if anyone has any. As I said before my dad met with his oncologist at Jefferson in Philly last Thursday (almost 2 weeks ago) the 20th. She said they'd start with chemo and whatnot, and she wanted him to have another cat scan done of his lungs. She recommended that he be part of a clinical trial that is comparing to different drugs to see which is better I guess... I'm not sure of the names of the drugs, but from what I understand, they are both used already, but this study is just to see which works more rapidly with someone at his stage or something along those lines... she said it'd be random which one you had and he wouldn't know and that the only real difference is the one makes you lose your hair pretty quickly, and the other happens more gradually if at all. We were all kind of unsure as to why she wanted him to be apart of this trial... does she truly think these are the best drugs for him? I guess I always thought about people doing trials when there weren't other options available, or you had already tried them and nothing helped. My dad's gf then called the doctor's RN to ask a couple questions and find out more about the trial and why they recommended this for my dad... she said she wasn't sure which trial the doctor wanted so she'd find out more and get back to her. By Thursday she still hadn't heard back so she tried calling again then and on Friday and still.. no response. So unprofessional in my opinion. Even if she didn't have an answer, couldn't she have least gotten back to her to let her know she didn't forget instead of plainly ignoring her calls?!?!

    Meanwhile, my dad was in on Thursday to meet with a surgeon that would be his if he needs surgery after chemo, and then to have some other blood done. The week before they had drawn 7 vials of blood from him and were about to again so he asked why they needed to do it because he'd had so much drawn the week before, and then they looked into it and were like oh yeah you did have this done so then only needed to take a small amount more for some other tests. Does this seem weird? and a little unorganized maybe?? Thank god my dad asked or he'd had blood drawn for no reason!!! He then spoke with his nurse and asked if she could have the doctor call in a refill on his vicodin because he might run out over the weekend, but may be ok, he just wanted to be safe. She said she needed the doctor to sign off and asked if he'd be around the following day.. and he replied that he wouldn't be and so pretty much no guarentee that she could get this done for him. He left kind of annoyed and called his original gastro doctor who first diagnosed him and asked if he'd be able to send over a prescription just incase, and what do you know... the following day the prescription was ready and sent from HIM! not his doctor at jefferson. Is this ridiculous or am I over reacting???

    My dad then went in this past Monday to have his chemo port put in and after they mentioned he needed to schedule the cat scan of his lungs, and they wouldn't schedule it for a whole week! They said because the doctor had to order this and then it takes time for the pre authorization to go through insurance.... now I could be wrong... but why wasn't this ordered initially after his first meeting with the doctor when she said he'd need this so that it could have been scheduled and done ASAP. At this point I feel like everything is dragging on and being delayed and I just want him to begin treatment! And so does he! He is beyond stressed out, for obvious reasons, and all of this mess is just causing unnecessary stress for him, which I feel like can not be at all healthy or helping him when he begins treatment. His gf then went to another building to find the nurse that had been ignoring her and she said that the clinical trial doesn't even start for TWO WEEKS. is this insane? or am I crazy? I just don't understand why they'd recommend that when it doesn't start for two weeks... is it normal to wait that long to begin treatment or does this seem drug out at all? I don't know.

    I'm really disappointed as of now with jefferson and feel that there is no sense of urgency and compassion for my dad. Yes, I know they are busy and have a ton of patients, but doesn't it need to feel somewhat personal and shouldn't he feel slightly important and comfortable??

    So he's scheduled for a CAT scan next week... and then who knows what the next step is. I'd like to think chemo, but what's his actual treatment plan? I believe he doesn't want to be a part of trial if it doesn't start for 2 weeks... but how many more appointments will there be before he begins treatments ya know?.. It seems there is no plan or guidance and they are just stringing him along. With cancer, there is so much that is unknown, the least they could do is guide us and give us the answers that they DO know.

    Ok... sorry for the long rant. As you can tell I'm extremely angry and upset about this... and not to mention confused. I could very well be overreacting but does anyone have any insight to this experience? Is this typical protocol and do things tend to take this long or what? I don't know.... ugh. I just want him to be treated. Why wait?

    -Elicia

  15. #15
    Senior User Alllison's Avatar
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    Apr 2012
    Location
    Princeton, North Carolina
    Posts
    259
    So sorry you and your father are having to deal with all this. In the beginning, it seems like we play the "hurry up and wait" game until our treatment begins. Even though he is scheduled to begin treatment, it is never too late to have a 2nd opinion. I've heard/known several folks that were not pleased with their original oncologist and ended up finding someone much better. Would your father be a candidate for one of the Cancer Centers of America? I have read on a couple of blogs about people that went there and found it to be a very nurturing environment and it offered a lot of extra perks (accupuncture for pain/nausea, a nutrionist, etc.) After my diagnosis, I had a 2nd opinion at a UNC Cancer Hospitals and now I have a wonderful team at UNC as a wonderful local oncologist. They are coloborating on my treatment which gives me peace. I hope things improve and hopefully everything will settle down once his treatments begin.
    Age: 38
    March 18, 2012: Emergency Appendectomy w/ Adenocarinoma & Carcinoid Tumor found; met. Adenocarinoma spot on liver (Stage IV)
    April 2012: Microwave 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 pathology 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 w/ 40% shrinkage
    March 2014: Finished 12 rounds of chemo; CT scan showed clear ovaries with shrinkage in spot near rectum
    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

  16. #16
    Regular User
    Join Date
    Jan 2013
    Location
    NJ
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    Elicia-
    This is my first time on here, and already I have found comfort from reading all the support and expertise that people give.

    Unfortunately, I am with you. My dad just just diagnosed with colon cancer last Friday (seems like years ago) He had a CT scan for an unrelated problem and they found this instead. He is 76 and has had no symptoms. They told him and my mother that it has spread into his liver and perhaps his lungs. He has not been told what stage it is, but everythin I am reading points to stage iv. He goes for his colonoscopy (his first) Thursday morning. I am terrified and am trying to be strong for him and my mother. I also have two little girls so crying around them isn't an option.
    I am anxious for the colonoscopy to be over and to have a plan. I want answers and just find it so hard to look at my dad when he has this inside of him and outwards, he looks fine. Just wanted to let you know that you are not alone and hopefully we can be there for each other.

    Jocelyn

  17. #17
    Newbie New User
    Join Date
    Jan 2013
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    5
    Hi Elicia,
    I'm in the same situation like you . My dad was diagnosed with colon cancer stage 4 , 1 year ago . When he was first diagnosed he removed the tumor and had 2 operations so he could prevent ileostomy . Then he did radiation and chemo but nothing worked and the tumor appeared again. So last month he had another surgery ,this time for the ileostomy. But he did some tests and other stuffs and the cancer had spread into his liver,prostat,left kidney and god knows what else ..Also one of his urine bladder is blocked. Now he's in pain and we are thinking what to do with that. All this time we have been consulting with a few doctors in Istanbul and New York and they all said he can't be cured. We want to take him abroad so he can have another surgery ,this time to prelong his life but he can barely walk. I know how you feel .. My friends try to be supportive but I still feel scared and sad all the time..I can't talk with my mom because I wanna look strong in front of her.It's very hard when you know that someone so close can pass away soon .. Although it depends on the person and type of cancer. Dad's is very agressive said the doctors and during the chemo it didn't shrink or stop. Your's may be different, just don't lose hope.You're not alone

 
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