more chemo

[Purplemom]

We went to see mom's oncologist today. We were there one week ago and were told things were stable and to follow up in 3 months. Because we were concerned about some of the wording in the new PET scan the onc said he would speak to the radiologist.

He told us the radiologist had compared her recent scan to the one before treatment not the one right after treatment. So the results are worse not better. There has been some growth in the last 6 weeks. He said this is considered a recurrance and he wants to try a second line chemo. topotcan?

He said there is only a 20% to 30% chance of response to this.

She is suppose to start in 2 weeks. I feel so terrible. For the week she thought she was better she seemed brighter than she had been in a long time. Now she is so down. She really doesn't want to do the chemo again.

I know she wasn't listening when we were discussing the chance of response. Also, she has never read the statistics on small cell, I have always been afraid that the more she knows the less she would fight. But is there a point when she should know more and if so when? I have so many questions buzzing around in my head but no answers. Part of me feels she is an adult and should be able to make an informed decision and the other part is scared she would not want to try anymore if she knows everything.

[Don M]

I am sorry you all had this letdown. My mom is 83. My siblings say she worries about stuff too much. If my mom was in your mom's situation, I would let her know anyway. I would want to know if I was in your mom's situation. It is really tough either way whether you keep her fully informed or not. You all have my prayers.

Don M

[cindi o'h]

I appreciate your dilema.

How about if you ask her how much she wants to know.

Ask her how much control she wants to have over her treatment or disease.

You could say something like, "IF there were a chance that you could survive this disease by doing tons of chemo, would you be willing to go through suffering? If so, how much?"

or..

"IF you were told that there probably wasn't anything that could be done to prolong your life, would you want to TRY something/anything anyway?"

I know I didn't put these questions together very tactfully, but you probably get my drift. "If you could, would you.....?" This is a format to find out what her thoughts are.

Good luck. I know this is tough.

Cindi o'h

[trish2418]

I'm so sorry your mom's news wasn't better. As for telling your mom or not, I would say to trust your instincts. You probably know her and what she can handle better than anyone. You're both in my prayers.

Trish

[Don Wood]

Tell your mom my wife is on her fifth chemo regimen and still going strong. She has lasted 4 years so far. We have never been guaranteed any chemo would work, but so far most of them have. Don

[kamataca]

Cindi has some really good suggestions...that's why we love her so!

I think that we have to give our loved ones the right to make their own decisions. It is so hard to accept some decisions (as when my grandmother, for her own reasons, decided to not do any more chemo), but we have to respect their wishes.

Your mom might surprise you. After seeing what her own mom went through, my mom originally refused to do chemo. I was crushed--wishing she would at least try. At the time, I told her I would respect whatever decision she made. She eventually decided to do chemo. It was on her own terms, though, and not something we made her do. She is doing beautifully right now, and I am so thankful.

I'm sorry this is such a tough time for you right now. You and your mom are certainly in my prayers.

Kelly

[Carleen]

This is just my opinion, but I would lean towards the feeling that your mom should be informed and allowed to make her own decisions. She is an adult. But just because you give her the full scoop on the disease, that doesn't exlude you also giving her the full scoop on survivorship too. Temper the harsh realities of this disease and it's outdated and antiquated statistics with the truth of hope and strength that you see in real life from people here.

It is ok to tell her that most people don't survive extensive SCLC, but at the same time give her the big BUT there are people you've met here who are beating it and for long periods of time with treatment. It may be smaller odds than we wish and pray for. The survivors may be 1 in a million, but isn't your mom a 1 in a million person, and there is nothing anywhere that says she can't be one of those miracles. Then let her decide.

I know it is so hard to contemplate a decision to stop treatment, but trust me, if there comes a time where your mother passes from this or any other reason, regardless of her decision you will feel more comforted knowing that you did what is best for her and what she would want for her quality and quantity of life.

Live life with no regrets, and that means doing anything and everything for anothers' happiness, selflessly and lovingly. I know you want her to continue to fight, for your own heart and your own needs and also for hers. And she may surprise you with her strength and her love for you which may lead her to decide to fight too.

Pray on it, search your heart. I'm sure you know what you should do.

[tatlyn]

I understand your struggle and I sympathize. When in doubt, I always err on the side of imparting the positive and discarding the negative. I don't, won't buy into doom and gloom predictions and I've always encouraged my Dad to do the same. Had he based future treatment on the predictions of the surgeon who first diagnosed his lung cancer, my Dad likely would have foregone treatment altogether or in the alternative, had the treatment but with a mindset that it would be futile. Something lacks when a person enters a battle with the belief that they will lose it. If I'm reading your post correctly, your Mom made the decision herself to have more chemo based only on the information that there had been a reoccurrence and not on any prediction of success or failure therefore, I would encourage her to be hopeful. I wouldn't perpetuate the Doctor's doom and gloom by relaying his statistics. I like Don Wood's response.

Best to you and your Mom,

Lynda