My sister has colon ca; need experienced advice

nursey_girl · May 25, 2005

I'm very sorry to hear about your sister. My father has recently been diagnosed with inoperable cancer, (liver, lung, and brain.) I know it's overwhelming, and to your questions, I have no answers. I'm a bit overwhelmed myself. My dad refuses any treatments at this point, and it's to the point that I have to bite my lip and just move with it. I do know that the Cancer Treatment Centers of America have been a great help to me as far as advice and options. They are a great resource, and if I had a choice, my father would be there. At least check into it, couldn't hurt. I wish you the best...

**canoehead, BSN, RN** · May 25, 2005

I'm not an oncology Rn but my gut feeling would be to get the colon CA out of there, and let the surgeons do what they can with the rest, and THEN start making decisions. Surely they can get the bigger parts out and will have a better idea of what they are dealing with. Plus the one surgery will give her more time to make decisions- no matter what the final outcome is.

Good luck to you and to her.

DDRN4me · May 25, 2005

I am also not an oncology nurse but have had a couple of relatives who survived colon cancer after colectomies...my thoughts and prayers are with you and your family.

Home Health Columnist / Guide · May 25, 2005

some links to help you and family:

colon cancer: the basics

what is the colon? what is colon cancer?

national cancer institute - colon and rectal cancer home page

american cancer society homepage

nccn patient guidelines

colon and rectal cancer treatment guidelines for patients

make sure homecare arranged at discharge. needed to muscle in to get homecare arranged for one of my staff's fathers this weekend with stage 4 lung ca just diagnosed. she said it's really helped her and dad understand what's happening.

Cassinia · May 25, 2005

I've been an oncology nurse for many years, am currently a case manager who works with oncology patients, and have been through this on a personal level as well.

First, the sites given to you by NRSKAren are good sites, I use them at work. If you are looking for trial studies you may also want to try http://www.clinicaltrials.gov or http://www.cancernetwork.com (which also has generalized information about the dx, tx, etc.). The emedicine site has some good information as well. If you have a chapter of the American Cancer Societly around you, visit them. I use to go in the one by me frequently to get information for me and for my patients.

My feelings would be if it's operable, get whatever they can out of there and get a good picture of what's going on inside the body. Look into the different types of tx...chemo, radiation, ablation, trials. But remember, not all treatments are for all types and locations of cancer. Discuss this with the doctor. Wait for the staging from pathology, it'll be more informative and the doctors will be able to develop a plan of treatment. If she's going to have chemotherapy, get a port in her immediately! I've dealt with too many patient's whose doctors don't use ports and their veins get fried. A port will be more comfortable for her in the long run. Where I worked, if a pt was dx'd with ca, a port was immediately placed.

As for her not having insurance. When she's adm to the hosp, get ahold of the social worker and question her about what's out there for assistance. Get your sister sx'd up for Medicaid, Public Aid, or whatever your state provides. If your sister goes into chemo therapy and needs medications, check out http://www.healthwellfoundation.com. or http://www.uneedpsi.org They are independent groups which helps cover medication costs for people being treated for cancer. Or, contact the company who is providing the drugs, Lilly who makes Gemzar (a chemo drug) has a program. Many companies like Pzier and Parke-Davis have programs, just to name a couple.

Like I said, I've been there myself as a family member and everything is going to be happening quickly at first. Get a notebook to keep with you to write things down! Write down questions you have for the doctor, write down things the doctor tells you, write, write, write, it'll help you keep organized and focused.

Remember, I know it's scary and it sounds like you've had a bad experience in the past, but there are positive outcomes. I've had patients beat the odds in many different ways. One young man we had, early 20's and newly married, dx'd w/testicular cancer and treated. Was told he couldn't have children. Two years later he comes to the until bringing his infant daughter. A lot of time as nurses, we only see the negative outcomes, I can't tell you the number of times I've held a dying person, and forget there are the positive ones out there. Hang in there, fairestar, you at least have one nurse here rooting for you and your family.

talaxandra · May 25, 2005

Hi fairiestar,

I'm sorry that you and your family are going through this.

Like most other respondents, I'm not an oncology nurse, so my advice is going to concentrate less on interventions for your sister than it is advice for you.

Before that, though - what is "once they cut into you you're gone"? I haven't heard that before, though I have heard (about neurosurgery patients) that "once it's hit air, the brain is never the same."

It may be confusing that you've been told they can't cure the cancer, but at the same time they want to operate. From what you describe, the aim of surgery would be to debulk (remove as much as possible) the tumour, to reduce your sister's pain, to minimise the risk of bowel obstruction and other complications.

The surgeon's right that they won't know exactly how much the tumour has infiltrated other organs until they go in, but it certainly sounds as though it's stage IV.

I'm thinking of you and your family at this awful time.

My experience with oncology patients

The first thing is

wiegel34 · May 25, 2005

My younger sister was just dx with colon ca (with mets to rt.side of liver which surgeon says is inoperable); he's rushing her into surgery this Fri.(5/27/05) She's in shock,as am I. I'm only M/S rn; don't know much about ca tx; we've all heard the 'once they cut into you you're gone' story; how much truth is there to that? The surgeon would barely answer any ?'s with anything other than "we'll know more once we get in there", even to stage level,which after doing my own research,even I could tell it's stage 4. I've read about Avastin; we haven't had time to talk to an oncologist,that appt. was set for day surgeon set up for op. to remove 1/2 of her colon. FYI: tumor is 2 in. in ascending colon;has broken thru colon wall & mets to rt. liver (2 small spots). I know it's bad;I need help to advise her!! Should she go thru with the surgery? What about ablative options for liver? Clinical trials? Please!! there's too much garbage to shift thru to get to helpful info on-line and we don't have time! I'm appealing to my sisters-in-nursing; I lost my closest sister (also an RN) to lung ca 6 yrs. ago and have spent 6 yrs. in acute depression because I couldn't help her; I know what's going to happen now; I just want to help Theresa (my sister) get the best tx. another FYI: she has no health ins. she's been unemployed d/t health for yr. and couldn't get tx/diagnostic care d/t no ins. I'd appreciate any info/advice, thanks fairiestar

I have been an Oncology nurse for 4 years. Colon ca is treatable,even stage 4.She should definetly go ahead with the surgery.

there are new treatments everyday. The standard treatment is a treatment called FOLFOX, It is leucovorin,5-fu, and Oxaliplatin,At times they also use a 24 hour 5-fu pump, to suppliment the bolus 5-FU. The most important thing right now is to find an Oncologist that you trust,keep yourself involved in the treatment plan. She will qualify for Medicade to pay for the treatments. A positive attitude is very important. Cancer is sometimes not curable, but it can be treated as a chronic illness for years. More and more people are living with cancer,now than ever before. She will need a Mediport even if her veins are good. Chemo is very hard on the best of blood vessels. She has had the cancer for a long time before it was diagnosed so there is no reason to think that all decisions have to be made right now. She will need to heal from the surgery before any chemo is started ,so there is time to find a good oncologist.

God bless and keep a positive attitude. A good internet site to research is;

The American Cancer Society, site and also,The Cancer Source.

fairiestar · May 27, 2005

Thanks to everyone for your thoughts and info; the info helped us make the decision to ask for 2nd opinion. 1st surgeon was not very nice;it was "we're cutting out 1/2 of your colon this Fri'; every question we asked received"won't know til we get in there"; no informed consent period, no explanations, no options; we hadn't even talked to oncologist yet but he didn't care. I was still too in shock then; got mad that night and spent the night on-line; called onc. in AM and said I wanted info. before my sister had surgery; laporascopic colon resection vs open; ablation; Avastin; clinical trials,etc,etc. I was mad! But the onc. was great; is setting up appt for 2nd opinion with one of the best surgeons in area and then to discuss options. Please pray for my sister?! I kind of lost touch with religion after my other sister died and am afraid I find that difficult now. Again, thanks to all, fairiestar

dfleur · May 27, 2005

I am very sorry to hear about your sister and i really hope the surgery will give you more answers.

I have been working in the oncology inpatients ward for the past six months and although i have little experience i can very much understand the feeling that you have of not knowing what is going on or who to turn to.

I can also understand how you must feel since this is not the first case in your family.

you have to continue to ask questions to try and get hold of all the information that will help you understand your sister's situation more.

My thoughts are with you and your sister.

Best wishes

leslie :-D · May 27, 2005

hi fairie,

my heart goes out to you and your sister. i do understand your anguish as last year my sister was dx'd with advanced breast cancer that had spread to 4 of her lymph nodes. her prognosis was poor...15% survival rate.

she had a porta-cath inserted with alot of encouragement from me. there will be those doctors that state the chemo can be administered peripherally- get her the porta-cath. my sister was very grateful that she did and didn't even know it was there.

her chemo regimen was intensive and done q 2 weeks followed by 7 weeks of radiation qd. no matter how fatigued she was, she dragged herself to work as it was a distraction from her disease. i never showed my emotions except for one time that i broke down in front of her- but i do know exactly how you're feeling. i did alot of research then realized i didn't like what i was reading so i stopped.

today, lisa's cancer is all gone. her hair is growing back. she has her spunk, her beautiful smile and a newfound love of life. she beat the odds.

there are also cancer support groups out there for the patients as well as their families/loved ones. so what i'm telling you is don't look at the numbers- stay away from the internet, and find God again. feel free to pm me anytime.

with peace and prayers,

leslie