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his surgery story

Galliano
Posts: 46
Joined: Mar 2004

My husband's (Mike) surgery was on April 23rd. He had a tumor inside his liver, lodged between the portal vein and the vena cava. Surgeons weren't sure how operable this would be. They weren't able to do their 1st choice which would have been a resection. Part of the tumor was attached to the vena cava. Instead they did a radio frequency ablation to the tumor. Films afterwards showed both main veins still open, so surgeons consider the surgery a success. As they say, there is no way to know for certain if anything else is going on, so he will need to keep up with all the routine tests. This surgery has zapped him tremendously. Horrible back pain has been his biggest complaint. Meds don't help. He has other pains as well. He forces himself to walk every day, forces himself to eat as his appetite has disappeared (he lost 20 lbs in 6 days). He can only lay on his back which is very uncomfortable. He doesn't sleep well. His moods are more down than up. At least they removed his staples the other day. He can't lift for another 6 wks, and he feels useless. I try to be as encouraging & positive as possible. We need to set up an appt with his oncologist to see what followup is next. Chemo? Radiation? Something else?? I don't have a clue. I will welcome any/all suggestions. I feel knowledge is power, and the more I know before we walk into that office the more confident I will be. Thanks for listening, and thanks for sharing your thoughts.
Pam
p.s. His orig dx June'01 colon cancer, followed by resection, later 10 mos. of chemo

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Dear Pam,

I'm sorry that I don't have any input to give, but I do offer prayers. It sounds like Mike is a real fighter. Forcing himself to eat and walk when he really doesn't feel like doing either shows his commitment to get well. He is blessed to have such a wonderful and caring partner. I will keep you both in my prayers.

Kay

Galliano
Posts: 46
Joined: Mar 2004

Dear Kay
Thank you for such nice comments! He is a fighter, I think, so thank you for reminding me to notice that part in him. Thank you also for the prayers--I do believe it helps BIG TIME! And I'll pray that you get blessed even more-so for being such a kind person.
Pam
p.s. Happy Mother's Day!

carmen07
Posts: 120
Joined: Apr 2004

I am fairly new to this site. I am glad to hear that your husband's surgery was a success. My husband is scheduled for liver resection at the end of the month. They are going to remove the entire right lobe. He had two small lessions at the time of his colon/surgery. Our oncologist told us that he will be treated with 8 rounds of chemo after surgery. Will probally start him with the same treatment he was on which is Folfox regime. Than will probally introduce Avastin.
I just found a new blood test on the internet approved for testing reoccurence in colon cancer. The test is called TDT PCR. (GCC-B1). It is suppose to detect cancer more accurate than CEA. Thought I would share with you and anyone else interested. Will definately bring up to our doctors. Cost is 495 dollars for blood test approved in Feb. If you type in TDT PCR blood test for colon cancer it will bring you to the site.
I hope your hubby gets stronger each day and most of all that he will be forever cured!!!!!

Tessyann's picture
Tessyann
Posts: 56
Joined: Apr 2004

We asked our Onco about (GCC-B1) over a CEA and he told us it was a waste tho it does give a higher accutate then a CEA it still doesnt let them now where and what so tho he was willing to do it if we paid the cost he still rather use the standard CEA and scan .

Tessyann's picture
Tessyann
Posts: 56
Joined: Apr 2004

Oh and I thought I add this... I even went and spoke to John Marshall down at Georgetown about this blood test cause a rep from the company that makes it was at a colon group and the rep claim he was involved with it... and when I asked him about he also didnt think the test wasnt worth it and wasnt involved at all with its testing . but still its not saying you shouldnt we almost did anyways just cause we knew Ben had cancer but it couldnt be found I think the test is best used when CEA counts are given what appears to be false readings..Which as we all know can and do happen as well as sometimes CEA dont climb when there is a recurrance too.. like on my other post I think I agreed with the dark ages cause NO test is 100% fool proof when your dealing with colon cancer. Know you body signs... and yes like Gallo said go with your instincts if something doesnt seem right or feel right make them hear your voices.

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hya Pam---give Mike our best girl and tell him that the time will come when things improve.He sure is gunna be a bit moody Pam --gee--Jen put up with my moodiness for ages!I guess the worries and the surgery go hand in hand and boy did I feel really useless waiting around for about eight weeks to be able to do anything strenuous.I was really cheesed off 'cos I was not allowed to drive!
Mikes reaction is normal Pam and it is tough to see him this way but hopefully things will improve with time.
You make sure you take care of yourself 'cos you won't be much use to him if you get crook!
Our luv n huggs to you both--kanga n Jen

Galliano
Posts: 46
Joined: Mar 2004

Dear kanga n Jen
You have such a gift for making people feel better! (And I love your 'voice'--you have such a way with words!! :} Thanks for input on moodiness; he is getting less cranky now. As for me, right b/4 his surgery I went to see my doc and told him my stress level was about to go off the charts, and that he better check my BP and give me something if need be. It was HIGH, he gave me 4 wks of meds, I go back to see him next week. I somehow was wise enuf to realize that if I had a stroke or heart attack I wouldn't be able to help him. Maybe one of the many angels I believe in had a hand in that one! Anyway, I do feel better, so thank you once again.
luv n huggs right back at ya!
Pam

carmen07
Posts: 120
Joined: Apr 2004

I am going to ask my onco. The site says that it is much more accurate. The cost of the blood test is 495 dollars. Its suppost to dectect cancer cells one out of 10,000 cells. Just approved I believe back in Feb. Can only be used after surger for mets colon cancer. None of these test are 100% and I agree with you that you know your own body the best. Thanks for the info.

Galliano
Posts: 46
Joined: Mar 2004

To Carmen07 and Tessyann
Thank you for your comments, and when we go see his oncologist in a few weeks, I will ask her about that blood test. I appreciate your input!!
Pam

KrisS
Posts: 232
Joined: Apr 2003

It is good to hear that Mike made it through surgery in OK shape, and is getting up and about even if it is uncomfortable. Having lost my appetite for a few weeks after surgery, I can sympathize with how frustrating this can be. I find it easier to eat with loss of taste. Your husband sounds like a very strong person, and that will help a great deal.

He has got to be feeling down with the discomfort and difficulty sleeping. I woiuld push the surgeon and/or his oncologist for more answers about his back pain. It may be that this is not uncommon for pain from the liver surgery to be felt in the back, but if not, perhaps he have a separate back problem, related or unrelated to his tumor or the surgery- a disk, an infection, or something else irritating nerves from his spine? I had severe back pain due to some lymph node enlargement near my spine stretching the adjacent spinal nerve. A patient with pancreatic cancer who I know was laid up with severe back pain due to a chip off of some benign bony spur. A pump with a narcotic pain reliever helped him a great deal. Maybe an MRI or repeat CT scan would be helpful to further evaluate this possibility? Consultation with a pain management specialist may be in order, if current pain medication is not working. These people have extra training in methods of pain control.

As for the future, I would suspect that they will recommend chemotherapy. It will be interesting to see what your oncologist says about the new test.

I suspect that since few tests are perfect, oncologists who worry that there is a moderate risk of a few tumor cells still floating around after a surgery or recent treatment will not have a negative result from a new test sway them from treating as they otherwise would. I suspect that the new test will be more accepted in patients with a low risk of recurrent disease to give extra peace of mind.

Radiation is used to treat focal disease that would be difficult or impossible for a surgeon to remove, or to treat areas where the pathologists find that tumor cells extended very close to the edge of a piece of tissue removed.

Best wishes,

Kris

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