cancer is new to our family - not sure what to expect - Drs not giving much info?


My dad, who is in his late 50s, was diagnosed with colon cancer last week. They installed his stint, or whatever it is to do his chemo yesterday after he waited all day for the doctor to get there, then today he starts chemo. They did a body scan last week and today told him its stage 4 and he has a 2 cm mass in his lungs, liver, and colon. They want to do chemo every 2 weeks to see if it shrinks to do surgery.

That's all the information they're giving us.

We don't know what to expect, what to think, or what's going on. Hopefully I can find some help, hope, and information from others on this board to pass along to my dad.


  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Did he get a port in his

    Did he get a port in his chest? If so it helps a lot when they have to do IVs. They can just use that for the chemo which is a lot better than getting poked every time in the arm. The chemo shrinks the veins so having an arm poke can get pretty unpleasant.

    Everyone's journey seems to be different. I didn't find out what stage my cancer was until they actually took it out. I'm a stage 3 because I had 3 lymph nodes involved and the tumour had grown so big it had torn though the colon wall. But no mets were found at that time. Previous to the surgery I had 5 weeks of chem and radiation to shrink the tumour to give my surgeon big enough margins so he could take out enough area around the tumour. I've never had a full body scan or a pet scan. I also have an ostomy because the tumour had almost blocked off my colon.

    Right now I'm doing mop up chemo to hopefully kill any lingering cancer cells. My surgeon originally said that the whole thing would take 8 months but it's going to be more like 14 months by the time I'm done. My surgeon said he expects that I will be cured. I'm hopeful and usually positive but I'm also realistic and scared.

    You'll find that there is a lot of information on the internet that is completely useless and even merely self serving. The fact is that every cancer is different, every person that has that cancer reacts differently to having it and every person reacts differently to treatment. There seems to be no difinitive information or answers. It's very frustrating.  

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    your papers please

    You should have copies of blood work, scans and diagnostic results.  You are entitled to them, and any balking I would already be at a 2nd doctor's office.  Where you live may be a part of the scene.  

    Your father is getting chemo (?) for possible surgery, but other cancer centers (MSK, MDA, regionals etc) may be more aggressive about surgical removal of metastases and other possible chemo/multimodal treatments.   Finances and type of insurance coverage also impacts choices.

    You might want to read in the forums about cimetidine (Tagamet), vitamin D3, celecoxib, low dose aspirin, curcumin and PSK.  If you can get extra blood tests, CA19-9, ESR, LDH, CA72-4, 25 hydroxy vitamin D3, fibrinogen, quantitatve D-dimer have been helpful baseline data for us beyond "standard" e.g. CEA+CBC+CHEM14 or 20. Starting from totally screwed and surgery refused (fixed that).  We ordered from a privately arranged lab and paid ~$200 cash for them, no hassles or time lost.  When time is precious, sometimes a small amount of extra cash spent can help cut through a lot crap.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member

    You should be talking to an oncologist and they should give you a plan besides just getting treatment every two weeks.  Are they going to do surgery, wait for that, any radiation?  Make sure that someone goes with your dad to all appointments as he might hear things incorrectly or not at all especially with a new diagnosis.  4 ears are better than 2 always and always bring questions and take notes.  Don't look on the internet for information as it is outdated.  Sorry to hear about your father.  It's a scary road to travel but it can be dealt with.  Come here often as we have some very wonderful people here to help you and your dad through this.


  • Trubrit
    Trubrit Member Posts: 5,800 Member
    Step back and take a deep breath

    These first weeks after diagnosis, the brain just goes crazy and really doesn't think straight.  As soon as you can step back and take a deep breath, you will start to feel better and see things a little more clearly. 

    A nice notebook with pen should be at hand at all times. Any question, aches, pains, emotions, should be written down and gone over with the Doctor or chemo nurses at each chemo appointment, or if its a serious worry, call. 

    The 2 cm mass is either in his colon area, liver OR lungs. I would follow the advice above and have your father get copies of all his blood work, scan, path results. I presume he had a colonoscopy, so get results of biopsies too. That way everyone will be on the ball as to what exactly is going on. 

    You're a good daughter to care so much that you've come looking for information. This is a good forum, many people here with lots of experience here to help you and your father. 

    Come often, let us know how we can help you. 


    Sue - Trubrit

  • Michelle0922
    Michelle0922 Member Posts: 8
    My dad has stage 3 colorectal

    My dad has stage 3 colorectal cancer and had surgery on October 6 followed by 2 other resect surgeries. We learned of his cancer in June, but I think I'm still processing it all. My dad isn't a big talker, doesn't ask questions of the doctor and hasn't understood enough himself to provide me with much insight. So, in my efforts to cope and understand I started digging into this whole colorectal cancer nightmare and stumbled across this forum. I was pretty emotional when I started reading the kind and thoughtful comments posted in response to my first post. It helped to be surrounded by others who are making the same journey.

    I found the resources from the Cancer Treatment Center of America to be helpful. They have good information about stages and treatments that were helpful.

    I'm glad you found the forum. I hope the best for you and your dad.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Jessica

    Sorry you had the reason to find us, but now that you have we will try to help in any way we can.  It will help us to give better info if we know a general location  of where dad is. 

    Apparently your father had a port installed...about a quarter sized device which is placed under the skin near the collar bone which has a tube which goes directly to a vein/artery.  This device is used for chemo delivery in order to prevent over use of the arm veins.  He should have been given a numbing ointment to apply to the skin over the port prior to anyone accessing the port either for chemo or blood draw.

    Next, persons listed on the HIPA form are the only ones who can get info from doctors (assuming dad is in USA).  Whoever that is should be attending doctor's appointments and treatments with dad so that questions can be asked and information gotten.  It is always good for that person to also carry a notebook to make notes for later review.  Believe me, it is difficult for patient or care giver to remember things said or questions needing to be asked.

    It seems that things are moving at a fast pace since he was only diagnosed just last week.  You may want to ask about what chemo is being given (they should be providing that info at the time of infusion anyway) and what side effects may occur and what to do about them.  Also you need an after hours number to call in case a new side effect comes up and needs to be dealt with before the next office day.  It will probably be an oncology nurse who will help you after hours unless urgent to contact the doctor.

    Now, take a deep breath...your family has had a great is all unknown territory but we will help as we can with info and emotional support.  Don't be afraid to ask any question...there are no dumb ones...we all have heard this diagnosis either as patient or loved one...we understand where you are at this early point.

    Marie who loves kitties

  • Akroger
    Akroger Member Posts: 88
    Almost exact same situation

    Jessica, it sounds like your father's profile is exactly like my mom's when she was diagnosed in January 2013. Same age, same stage, same organ metastases. Only difference was that her tumor was 8 cm, (on the colon), but at the time it was really the liver mets that we were freaking out about, because they were so pervasive that her doctors worried that this would actually be the most dangerous element for her. Twenty two months and dozens of chemo and radiation sessions later, my mom has recovered to a point that my father and I never expected could have been possible. Whatever your father's condition might be now, I want to reassure you that getting better is DEFINITELY possible.

    In addition to metabolic and her complete blood count tests, you want to be sure to ask your father;s oncologist about his CEA level. CEA stands for carcinoembryonic antigen, and in short it's a cancer marker in the blood that for many colon cancer patients is a strong indicator of the severity of their cancer. It can fluctuate a lot with treatment; my mom's began at above 2,600, and at it's lowest point dropped to 31. Now it's back up to about 500. Usually, when the level increases it's an indication of increased activity in the tumors (not necessarily just the main one in the colon) and the doctors will perform CT-scans to determine exactly what is going on. For my mom, it's usually a very accurate indicator, but it isn't for everyone, so while helpful, it should also be taken with a grain of salt.

    On metabolic indicators, my mom's greatest difficulty has been keeping her pottassium level up. Pottassium deficiency leads to a lot of weakness because of its harmful effect on muscles, and during my mom's worst points it was her pottassium that was the biggest problem. Gatorade, potatos (even potato chips!) bananas, and if necessary, pottassium supplements prescribed by your doctor - my mom's at her best when she's well hydrated and her pottassium levels are normal, even if she's not eating much (chemo really kills the appetite) so I recommend you keep an eye on those two things above all.

    Did the doctors indicate which chemo regimen they might want to try? My mom began with Folfox, which worked wonders for her, before the effectiveness kind of fell off late last year. Then it was found that she'd developed a tiny brain tumor too, which was immediately excised with gamma-knife radiation, and it hasn't come back since.

    Depending on the pain level that your father experiences related to bathroom issues, a colostomy could be a good option for him later down the line. My mom got one in April, and it took some getting used to, but ultimately it's changed her whole life, and the benefits have been enormous while the inconveniences are relatively trivial. I knew nothing about these things when my mom was first diagnosed, so while I hope that your father's case won't be so severe, it's good to educate yourself as much as you can early on.

    Surgery was not an option for my mom due to the sevreity of her metastases. Personally, I wanted to look into second opinions, but my mom is unbelievably stubborn in general, and with the shape she was in last year, the thought of going to yet another doctor in a different hospital was a total nonstarter. Given how well she's doing now, I like to think that this turned out for the best. Don't get me wrong; she still has her bad days, aches and exhaustion, but she is more vibrant and energetic now than I have seen her in literally years. After watching her for over 4 months in a near-death like state last year, I consider it as little short of a miracle.

    We live in New York City, and my mom is getting treatment at the NYU Langone Cancer Center. The quality of the doctors early on makes a huge difference. I wish all the best for your father, and by extension you, and encourage you to share and ask as much as you can on this board. It's definitely helped me to get through a lot.

  • Akroger
    Akroger Member Posts: 88
    Just edited my previous entry

    Colostomy, not colonoscopy! How confusing that must have sounded Undecided

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    I am sorry to hear about your

    I am sorry to hear about your dad. Unfortunately that is usually the way it goes for most of us in the begining. Your in shock and the doctors don't seem to tell you much other thatn where to go and when for treatments, scans etc. The best thing you can do is write a list of questions before the next time you see his doctor and take notes at the appointment. We are all here for you as well and can hopefully help through our own experiences.

    BTW I was diagnosed stage IV as well 9 years ago. So there is plenty of hope for your father. There are others on here that have survived longer than me at stage IV.