OT What would you say?

[carbonman]

My sister has survived the initial surgery for colon cancer.
They removed as much as possible. There is still cancer there.
It has not, as far as test/images show, invaded any other
major organs. The stent in the liver bile duct is working.
The blood thinner meds start again today.
She is scheduled to start chemo on 9/5. She is going to tell
them she wants to wait. She asked what I thought.

I told her I would want the unknown behind me. Get that first one
over w/and know what I'm up against. I also told her that I would
want to know that I am taking the fight to the cancer.
I would want to know that I am a fighter and not a victim.

I have never been so close to this before.
What would you say?

[Pugsy]

I would agree with you.
Truly caught between a rock and a hard place in this situation.
She needs the chemo...I would want to see if it is really as bad as it sounds and really something that I couldn't tolerate. Might allow a little time to recoup from the trauma of the surgery itself though. But not so much as to keep putting it off too long.

My heart and prayers to you and your sister for having to go through this difficult time.

[nanwilson]

Me too..whatever it takes to get back to healthy.
I have a friend that has recently gone through the same thing, surgery, chemo the whole nine yards. When asked how he is doing he says "ya do what ya gotta do"!...he is doing just fine, no further sign of the colon cancer.
Tell her to just do it, too many family and friends love her and want her to stick aroung for a loooonnnggg time yet .
Cheers
Nan

[BlackSpinner]

I would simply ask her questions and feed her back her answers - sometimes when we hear our words coming out of someone elses mouth we hear them more clearly ( the phrase to use is "I hear you saying ....."). You need to find the real reason for her choices.
However, she has to come to her own decisions and that is the hardest part for you, recognizing she is an adult and in charge of her own life, stepping back.

Everyone needs to make it clear they are honoured to help because she may feel she needs to protect you from her issues. She maybe wanting to put off the chemo so she won't put more stress on you. Sometimes people who are sick (especially when they have been healthy most of their life) need to be reminded that other people are desperate to help, that helping means a form of stress relief for them, that the opportunity to provide a service to someone you love shouldn't be denied. (Sometimes you really have to give them a swift kick and tell them to stop being selfish about letting people help - can you tell I am talking about my family?)

[Suzjohnson]

Same as you, carbonman! I would want to get it done and behind me. Get all the feeling crummy over with asap. But, that's just me and what I would do doesn't make it right for anyone else. You've got a big heart, carbonman, and I know you will always do the right thing by your sister. Have faith in that.

Suz

[PST]

Best wishes to your sister and you, Carbonman.

I know this is difficult to do, but I think the best course is to try to disengage from the emotions cancer raises and look with cold rationality at the costs and benefits of chemotherapy under the particular facts of one's case. Chemotherapy brings substantial discomfort and some danger, but its effectiveness is well established for certain stages and grades of colon cancer. There is no right answer in principle, only a right answer for the circumstances.

A few years ago, following surgery for colon cancer, I had to decide whether to undergo chemotherapy. I was very fortunate that the tumor was at what they call Stage II, which is to say that it had worked its way through the wall of the colon, but had not spread to any surrounding tissues, not even to the lymph nodes, or to any distant locations, as far as could be determined. I read everything I could find, and it appeared that medical research could not demonstrate a statistically significant increase in five year disease free survival rates from chemo for people diagnosed with Stage II disease. So I walked into the oncologist's office for my first visit determined to question aggressively whether I ought to have chemo. To my surprise, he told me that he recommended against it, explaining that there were not enough proven benefits for someone with the stage and grade of cancer I had to justify the known and potential unknown dangers of chemo. If I had had Stage III disease, I would have gone for chemo in an instant, because the survival benefit is well attested. If I had had Stage IV disease, I would almost certainly have wanted chemo as well, because even if my prognosis remained poor, I could expect periods of remission in which I could continue to enjoy life. My experience contrasted with that of a couple of people I got to know through a colon cancer forum who had the same stage disease I did. When they asked whether they should have chemo, their doctors gave them answers like, "I have teenage children, like you, and I would like to see them graduate and get married, so if it were me, I would do absolutely everything I could." That kind of emotionally loaded comment is not the kind of advice we need from doctors. The patient is going to pay a price in suffering for chemo, and he or she needs to know what the return will be for paying this price, even if it must necessarily be couched in terms of probabilities. Do I get a 20 percent chance of a cure? Do I get a 50 percent chance of a six-month life extension? With information, one can weigh both sides and make a choice. I would not be influenced by considerations like showing cancer who's boss.

One of the revelations of taking part in that forum was seeing how much could be done in cases that were, in the final analysis, terminal. Many people survive for years with advanced colon cancer, and it isn't just futile bedridden survival. They often talked about the very normal lives they were living between rounds of chemo. Different chemo regimens work differently, and someone may get a long period of remission from one, then the cancer re-emerges, and they get more remission with another. Even if the victories get shorter and the options run out, they have bought lots of good quality time for their nausea, hair loss, and peripheral neuropathy. On the other hand, a time can come when people reasonably say they don't want to endure it again for a small chance of a short extension.

So I think it has to be a data-driven decision, based on the facts of the particular case, and that the most important requirement is a trusted doctor who will deliver the necessary information straight up and holding back nothing so the patient can decide if the benefit justifies the cost.

EDIT: I reread the original post and I think I may have misunderstood the issue. I thought Carbonman's sister was questioning whether to have chemo, not just when to start.

[carbonman]

As always, you guys are the best.
Thanks!

@PST Very good reply.
She is stage 4. I don't see that she has any yes/no choice for chemo.
She has a good oncologist. The choices will be made w/her direction.
I don't think I presented a picture of showing cancer who is boss,
more a feeling of I am a fighter not a victim. But these are my thoughts,
looking from the outside, not facing the road she has ahead of her.
You have given me good food for thought. Optimistic but seeing
the possible hard reality, too.
I appreciate your thoughts very much.

I am going to suggest to her that she go visit the chemo center now.
See what it looks like, smells like, talk to the people that are there.
Find out from them what it's like. Get it first hand.
If she can't fight for herself, I will. I don't know what else to do.

[the_nap_ster]

My husband and I are in this situation now. He was just diagnosed with Multiple Myeloma.

The oncologist said listen, some people in your shoes put chemo off and do watchful waiting, but the risks of putting off chemo are high. The longer cancer goes unchecked, the more havoc it can run on your body. He said, take some time to discuss it with you wife. Edward grinned at him and said we don't need any time -- my wife has already decided what we're doing!

And he was right. Any chance to kick this cancer down is what we're doing. Delaying treatment only lets the cancer get the upper-hand.

If she is scared of what the chemo is like, the suggestion to go visit other people going through it is a great idea. Because cancer is like a mountain. It's not going anywhere on its own, and if you don't make plans to get over/around/through it, you can't move forward.

All of your family is in my prayers.

[carbonman]

Action kills fear!

Her visit w/the oncologist was good.
Blood looks good. No time to waste.
Chemo starts Tues. next week.
After she left the doc, she went over to the
chemo ctr. Met all the nurses and techs.
Talked to the folks that were there getting treatment.
Helped her fear of the unkown.

Once again, cpap therapy going far beyond blowing air up my nose.
I am so thankful for this forum and all my friends here.
Thank you for your thoughts and prayers and
know that they are returned in kind.

[DoriC]

Sending prayers your way. Chemotherapy has come a long way and depending on the cocktail used, there are many new meds to combat the nausea and weakness and other symptoms. I've seen quite a few friends come through chemo with just the first day feeling lousy and then they're OK again until the next round. It's always easy to tell that to someone else and my heart goes out to her. I know you're giving her a lot of comfort.

[newhosehead]

Sent you a pm

[jnk]

PST's reply is golden.

I have found that when family members and friends have asked me similar questions, the reply that seemed most comforting to them and useful to them was one that said, in essence, 'I think you are thinking very clearly about your choices and I will say so if it ever sounds to me like you aren't.' It shows support and encourages them to keep talking, since it lets them know you are listening closely and reacting honestly, not just telling them what they want to hear, which can be their unspoken underlying fear in their situation.

It is my belief that one of the most valuable assets to someone in that situation is to have someone who will go with them to the appointments to take notes, as verbatim as possible, on the discussions that take place between the docs and the patient. When emotions run high, it can be difficult for the patient to hear accurately what the docs say and accurately to remember later what the docs have said.

I always find your posts on the difficult matters in your life, and the lives of your family members, to be encouraging to me in that the posts have such a ring of the thoughts of a caring, helpful, thinking family member. You sound like one of those people who do not realize just how much of a blessing they are to the people around them, family or not.

[Suzjohnson]

PST's reply is golden.

So is yours.

Suz

[chunkyfrog]

Having a friend who has been through chemo;
I would like your sister to remember that much of what we hear about negative chemo stories
is not necessarily representative at all.
A few loud negative voices easily drown out the many positive voices.
Reporters automatically lean towards the sensational, even without meaning to cause harm.

[JohnBFisher]

Faith means living with uncertainty - feeling your way through life, letting your heart guide you like a lantern in the dark.

Your sister is very fortunate to have a brother to cares enough to want to do the best he can to help provide some guidance. Know that she and you will be in our prayers and thoughts as you face this uncertainty. Know also that all uncertainty stands mute in the face of love. Love that shines out to provide comfort of others. Love that takes the time to understand the need of others. Love that allows you to say "Lord, make me an instrument of They Peace ..."

Both of you will be in our prayers.