New here with questions

RacheleC Member Posts: 5
edited March 2014 in Colorectal Cancer #1
My dad (54 years old) was diagnosed last year at this time with stage III colorectal cancer. He had surgery to remove the mass and 12 lymph nodes, 3 of which had cancer in them. He went through chemo/radiation after the surgery, just as a precaution the doctors said. They felt confident they had removed all the cancer with the surgery, but just wanted to be extra careful, they said. Well, it turns out, they had not gotten all the cancer, and the chemo (5FU) and radiation did not work. During his exam after the chemo/radiation the doctor saw a small spot on the CT scan, so he ordered another PET scan. That showed a very tiny "hot spot" almost exactly where the cancer had been removed. They indicated it may be scar tissue, so we waited 6 weeks and then did another PET scan, which showed the spot had grown. He was given the option of waiting to see if it would grow more (WTF?) or to start a different kind of chemo. He decided to go ahead and start the chemo, so about six weeks ago he started camptosar (90min x once a week, 4 weeks on, two weeks off for 6 months). He's now starting the second month.

I've been reading some of the things you have posted here, and it seems like some of you are doing other kinds of chemo drugs. I'm curious about that. My dad, it seems, is really just going along with what the doctors suggest, he doesn't seem to be asking too many questions, is not doing any research on his own...I'm wondering if there are other things we could be doing, or asking the doctor for.

How bad is it that the cancer was still there after the first round of chemo? Does that mean that his chances for beating this are low? I'm confused. And scared. I just hate this. My mom is beside herself. My dad has always been the strong one. He still laughs and jokes about this, but you can tell it's getting to him. The other night he said that he feels "anxious" all the time. Do you think he may be having anxiety that he needs treatment for, or is it a side effect of the chemo?

Can you guys help me figure out what questions he should be asking the doctor? We live in Iowa, is it possible that our doctors here don't have the most current information, should we be asking for something specific?

Thank you for any help you can offer.



  • Hi Rachel and my name is Monika. My husband Bert, age 51, was diagnosed stage III colon cancer July 2003. It was in the right colon, at the ileocecal value (where the small intestine connects to the large intestine). 4 out of 7 lymph nodes were positive, which places him at high risk for recurrence. More nodes should have actually been taken as there is great risk it could have been in more.

    Be that as it may, Bert is still on a regime of 5fu at 1000 mg combined with leucavorin, initially at 1000 mg, but reduced to 250 mg because of sever colon infection and partial small intestine blockage half way through treatment.

    My advice to you is research, explore, ask questions, get second and third opinions, and encourage your mom to help so that she and you can be your dad's strongest advocates. It won't be easy and the answers won't always come overnight (God knows I feel more often frustrated than not), but knowledge is power. I would also suggest that you have your dad looked at at a major cancer center. I'm not familiar with Iowa, but I'm sure there must be some good ones there as well. I have found that in taking Bert to USC/Norris Cancer Center instead of just going along (which for the most part we had been doing while waiting for my insurance to pick Bert up) with what his HMO covered and deemed as protocol, the doctors at major or university cancer centers tend to be more aggressive in their treatment of patients, more up to date on the latest developments, which they don't mind trying, and are actively involved in ongoing research or cutting edge,if you will, where they see first hand the advantages/disadvantages of some treatments versus others. There are a number of different combinations of chemo out there...Camptosar or CPT-II being one of them. There are also a number of alternatives (I'm sure you'll be hearing from Emily on this Board regarding this is....she's great). I have heard that Oxaliplatin works just as well but is less toxic. This is what the University Center is planning to put Bert on for the last two months of his treatment....something giving him a small added edge to prevent recurrence and which according to them he should have gotten from the get go, something that the HMO and his current onc weren't going to touch because stage III treatment protocol is mostly 5fu/leucavorin.

    Lastly, I would like to pass along to you that don't ever, ever give up. Support your dad and let your him know that you are with him all the way in this. Rally your mom and as hard as it is not the be anxious all the time, please try your darndest not to be. It will make you crazy, worthless as far as a support system is concerned, and destroy all the good moments. And sadly, that feeling is also conveyed to patients who pick up on our emotions real quickly. Believe with all your heart that your dad will get well and he will pick up on that too and begin to think along those lines and it can make all the difference in the world. I lost my father 12 years ago and never got an opportunity to fight with him. I guess I'm making up for lost time...I'm fighting two has lung cancer, husband has colon caner. I can tell you first hand that the road ahead is bumpy, rough, and full of pot holes but there will be many good days, weeks, months when life can be pretty darn good and normal.

    Pray hard (God will hear you), keep posting on this board (we will hear you too):-), wear a smile on your face as many times as you possibly can, get the best treatment you possibly can for you dad, and leave the rest in God's hands.

  • efw
    efw Member Posts: 20
    Hi Rachele. I'm a former Iowan myself, but now I live in Minnesota. I'll always consider myself an Iowan, though. Go Cyclones!! Anyway, I was diagnosed with Stage III colon cancer last January, with 27/29 nodes positive. So it's not looking to good for me, but I'm always trying to keep up on any new tests or treatments. I finished chemo in August and had a colostomy reversal in September. My chemo consisted of 5-FU, leucovorin, and oxaliplatin.

    Now my CEA appears to be rising. It was 2.5 after chemo, and in November, it was 3.7. My onc says he'll do a PET scan if it increases again (I had blood drawn yesterday and meet with him tomorrow to discuss the results). I've already mentioned a new test called the GCC-B1 test to him, which is supposed to be a better indicator of the presence of cancer cells than the CEA, but he said he doesn't do that test. However, to obtain it, your doctor simply calls the company that makes it, draws your blood for it, and sends it back in to the company for the results, so my plan is to keep pestering my onc to do that if my CEA has increased again. If he won't do it, I'm planning to get a second opinion from Mayo.

    So far, I've been doing my own research, but following what my onc has said (but I've also agreed with what he's done so far, too). Now that we may see things differently, I'm going to start being much more demanding. I think that's what all of us need to do. I'm 30, and I'm going to do everything I can to make it another 50 years!! I don't know how far away you are from the Mayo Clinic, but that may be the closest major cancer center for you. It certainly can't hurt for your dad to get a second opinion there. I know that the small town in Iowa where I grew up didn't have any hospitals I would've wanted to rely on nearby.

    I hope for the best for you and your family.

    Emily (now there are two of us Emilys!)
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    Hi Rachele,

    I was dx Stage III colon, lymph pos two years ago. I'm the "other" Emily Monika mentioned. I will echo Emily's suggestion to go to Mayo since it is almost next door to Iowa. I go there also. I love the Mayo Clinic b/c of their set up with getting testing done in the morning and meeting with your onc with the results in the afternoon. No waiting. They are so professional since they deal with so many internationals, celebs, big wigs etc but they make everyone (my experience) feel important. It is a beautiful place to go, too, which is nice when you spend as much time as we cancer patients do at doc appointments.

    On the down side they give little to no info about nutrition and cancer which is where I get on my soapbox. (right gang?? heehee)

    I chose to do no chemo when they prescribed adjuvant chemo to "clean" up any renegade cells. I said no thank you. (watched sister die of this....chose different route). I do only alternatives and for two years all my PET and CT scans have all come clean. My CEA is a non factor since my tumor did not give off markers.

    If you are interested in researching other cures try The guy cured his colon cancer with diet. She cured her breast cancer with diet. May give you hope if other venues are exhausted and don't work.

    If I may pass on any advice it is to get your father off of all sugars and whites immediately since cancer feeds on sugar. Starve the bugger!

    Beating Cancer with Nutrition by Patrick Quillin is an exceptional book for ALL cancer folks. It tells you which supplements will enhance which chemo/rad treatments etc and kill which types of cancer cells. A must read IMO.

    Empowering oneself, I think, is the first step towards healing and curing.

    peace, emily....the alternative one! :-)
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    Hi Rachele,
    You need to be commended for searching for information for your dad. I was stage 4, and was 33 when my whole experience took place. This Dec 2nd, I turned 36, and am officially cancer free. Mine spread to my liver and two lymph nodes. Every day I am really in disbelief about everything I have gone through. I don't know if the fact that your father's cancer has returned despite chemo means it's fiercer, or just needing a different chemo. I had 5 FU, and camposar. It worked, and maybe by your father getting the camposar now, that will help.

    Make sure he keeps his spirits up...or drink some spirits to forget about the whole damn situation! If I didn't have my kids to motivate me through this, I don't know if I would have fought as tough as I did for myself.

    Please keep us posted regarding your dad's health...let me know if I can do anything. All my surgeries were at the University of Chicago...they are excellent. Since you're in Iowa, maybe a road trip may be in order?

    Take Care,