Jim's thread prompted this ? The "What If ?"

No, Cora, we don't have that
No, Cora, we don't have that discussion. As I've mentioned, my husband was diagnosed as Stage IV June 21. Our treatment plan is for the best quality of life for the longest period of time. At first, before I adjusted to the new normal, I would ask the oncologist questions like "what if this doesn't work?" She told me we just have to take it one step at a time. And, of course, I've come to realize that is the only way to go. So far this first chemo cocktail is working, he has no swallowing issues any more and can eat anything, and feels good. We've taken trips and always have some goals and plans ahead. Are we being foolish Pollyannas with our heads in the sand? (Oops-- mixed metaphor :-) ) No. We know the nature of the beast. We are just SO GRATEFUL for the way things have gone the last 5 months. It would just seem really ungrateful to spend this precious time discussing the "what ifs." Nothing to be done about it now, anyway.
Angie

chemosmoker said:

Decisions
Cora,
We discussed EVERYTHING. And still do. Everything , all the time.
There are no decisions made "permanently" as everything could/can change.

God Bless

Eric

The Conversation
Cora, this is an interesting question to ponder on a monday morning. Especially as I am coming off a treatment from last Thursday that has me feeling less than chipper. In the beginning, as in the time of initial diagnosis, it never occurred to me to just throw it in. As a stage IV, I knew that there was to be no surgery and chemo/radiation and paliative care was the best it would get. I spent some time thinking thru the consequences of my two viable options and decided to go for it. I have never regretted my decision and am holding the line. I admit that I am a lucky EC patient because other than fatigue which I have learned to live with and plan my days activities accordingly, I have very little side effects. I had been thru 4 different chemo drugs before my hair came out. The current one got the hair. My weight is stable to within 4 pounds, and the initial treatment gave me the opportunity to eat again. That has now been taken away with the narrowing of my esophagus but in perspective, there is more to life than eating a burger. I am able to take care of myself, I still have 2 of my horses to look at everyday and I am going to make the graduation of a good friends oldest daughter in late May. All that said, I have talked with my doctor, medical power of attorney and my attorney about the future. At the moment, as long as I am well tolerating the chemo and the drugs are keeping the cancer under control, I will keep on keeping on. When things change, I will have the conversation with the three above folks as well as my life partner and take a different path. We all know it will come but in the mean time I am trying to milk as much pleasure out of each day and hour as I can. Sam

Cora, Even though it's been
Cora, Even though it's been four years since I was diagnosed and I am now NEd, I know the possibility of reoccurence is a reality. I do think about the what if's. I discuss this with my family and my husband. They listen more than putting their oppinions in. They realize they have to let me make my own decisions. I truly don't know what I would do. Quality of life is so much more important than quanity. The first go around I missed so much of my grandchildrens growing up. My continued low counts kept me away from them a lot. I still miss the time I could have spent with them. I do not want treatment that's going to keep me down if there isn't much hope, and if it comes back, it is usually with a vengence.

I started post op chemo after surgery because of two active lymph nodes. Two weeks later chemo was stopped because of a blood clot in my jugular vein. At that time my oncologist said chemo was destroying me and his exact words were, "it was time to turn loose and let God". I truly beleive I would still just "let God". Like Eric, I want to enjoy God's beautiful surroundings and be able to enjoy the time left being around all my loved ones.
I know either way is very rough and I'll pray that God shows me the right way and that my family respects my decisions.

Sandra

paul61 said:

A very thought provoking question
Cora,

You raise an interesting question about treatment for recurrence. I think most cancer survivors would have to admit to spending some amount of time thinking about what they would do if they had a recurrence.

From my perspective, I think the question of treatment would depend on where the recurrence was located and what the treatment options were. If for instance I had a recurrence similar to Jim’s I would definitely have treatment because I know someone who had the same issue, (a recurrence in a lymph node in his neck), that had surgery to remove the node, and had chemotherapy and is back to NED status again.

On the other, had if I had a recurrence in a iliac or inguinal lymph node, I would assume that the chance of the cancer showing up in my liver, pancreas, or other organ was much higher, and I would have to think about treatment for the recurrence.

If we had perfected targeted chemotherapy I would feel better about treatment for recurrence; but given the current state of chemotherapy, I think there is a limited chance for it to work if the initial treatment cocktail had not been effective. I tell people that chemotherapy is a bit like killing your crab grass by setting your lawn on fire. You hope you kill the crab grass and enough of the lawn survives to grow back again.

I have to admit I did not have a positive experience with surgery or chemotherapy so that may affect my willingness to repeat it.

On the question of, have my wife and I had a “what if” discussion. I have tried, but my wife is reluctant to go there. She is one of those people who believe in moving forward with a positive attitude with full confidence in a positive outcome. I am fortunate that she has that perspective, because I need that, I am one of those people who hopes for the best but prepares for the worst.

I think our approach is to wait and have the conversation if we have to and hope we never do.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Very thought provoking indeed!
Paul brings up a good point about the personalities. I can only speak for the course of treatments as far as the what ifs go, but my sister will look at EVERYTHING...the biggest example is on Dec 14 Dad has the endoscopy to see what is going on with his valve or his stomach and why he wasn't "passing" the food through. Mom and I (and dad) are going with the Pyloric Valve just needs some Botox to relax and not thinking about the what ifs...My sister on the other hand is a nervous wreck thinking about ALL the other possibilities of what may be wrong and OMG, if that isn't it, he can't handle another surgery!!! What ifs can drive you and everyone else around you bonkers.

I am very much the stay positive until we know what the problem is and how it can be fixed. Yes, there is always that worry that it is worse, and yes, you should think about it. But, you have to stay positive and trust that God will not give you more than you can handle. Sometimes His tests push the limits, for sure.

I am probably naive and I can't speak on a spousal part, but when we learned of Dad's cancer and the four of us were together, there was more conversations said, (and not said in so many words) of what this may mean. And Mom "can't drive the motor home without Dad, so the only option was to beat it. Period."

Beth
Daughter of Roy
10/07/11 Robotic Ivor Lewis
NED

paul61 said:

A very thought provoking question
Cora,

You raise an interesting question about treatment for recurrence. I think most cancer survivors would have to admit to spending some amount of time thinking about what they would do if they had a recurrence.

From my perspective, I think the question of treatment would depend on where the recurrence was located and what the treatment options were. If for instance I had a recurrence similar to Jim’s I would definitely have treatment because I know someone who had the same issue, (a recurrence in a lymph node in his neck), that had surgery to remove the node, and had chemotherapy and is back to NED status again.

On the other, had if I had a recurrence in a iliac or inguinal lymph node, I would assume that the chance of the cancer showing up in my liver, pancreas, or other organ was much higher, and I would have to think about treatment for the recurrence.

If we had perfected targeted chemotherapy I would feel better about treatment for recurrence; but given the current state of chemotherapy, I think there is a limited chance for it to work if the initial treatment cocktail had not been effective. I tell people that chemotherapy is a bit like killing your crab grass by setting your lawn on fire. You hope you kill the crab grass and enough of the lawn survives to grow back again.

I have to admit I did not have a positive experience with surgery or chemotherapy so that may affect my willingness to repeat it.

On the question of, have my wife and I had a “what if” discussion. I have tried, but my wife is reluctant to go there. She is one of those people who believe in moving forward with a positive attitude with full confidence in a positive outcome. I am fortunate that she has that perspective, because I need that, I am one of those people who hopes for the best but prepares for the worst.

I think our approach is to wait and have the conversation if we have to and hope we never do.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Asked myself this a million times!
When Lee was first diagnosed, we were either totally uneducated, or in complete denial. Even though we were told from day one that it was uncurable and that he had 9-18 months to live, we figured, 'no way, we're gonna beat this thing, and be part of the survivor crowd'. He was feeling so great, normal and all was well in the world up to the day of chemo. Aside from a wee bit of problem swallowing, there was nothing wrong that we could see. He was still eating whatever and whenever he wanted, just had some discomfort. This went on for about 6 months before he went to the doctor, assuming it was GERD. What a shocker that one was!!!

Anyways, we did not even consider not doing chemo at that time. We didn't even think of 'no chemo' as an option, because like I said, we were going to beat it, surgery or not......

Lee was so very sick, starting almost from day one of chemo, and never regained quality. Sure, he had some good hours, and even a few good days, but overall it was horrible, and tore my heart out to see. I think when Eric came along, that was the first time we even considered that that could have been an option. I don't think Lee would have gone that route at first, since we were so optimistic, but we realized it was there. I still remember replying to Eric's first post, thinking he was crazy, not wanting any treatment, and begging him to reconsider!!! Now, I think he's not so crazy after all.

Lee even was game to start another round of chemo, but since the doctor would not give him a feeding tube, he was so weak, dehydrated, starving and vomiting constantly, he decided to quit after only one week of treatment. Had he been given the feeding tube earlier, who knows what would have happened, but I think that he would have tolerated the chemo better. now, wether or not he would have had quality is another question.....

Anyways, if it were me, and I had to make the choice, I guess I would go for the initial chemo, and see how it went. There are so many of you that seem to breeze through it, with minimal side effects! Unfortunately that was not Lee's case. I think if I were as sick as Lee was, I definitely would not put myself through any more torture, especially since it was spreading like wildfire at this point. (at the end, it had spread to liver, spleen, bones, spine and who knows where else, they didn't even do any testing to find out, just xray of spine and ribs.) I suppose it didn't really matter at that point anyways, since treatment was not an option any more.

That is such a hard question to answer, and I suppose that there is no answer. There are too many variables. Lee and I discussed everything, over and over again, to exhaustion. He was not ready to go as soon as he did, and the suddenness of his decline was shocking, but he was fairly prepared, having made his will, lined up buddies to make sure the house does not fall in on my head, my computer is well maintained, and all accounts in order, passwords and whatnot all at my fingertips. He did not discuss funeral arrangements, which in retrospect, I wish he had, that was so overwhelming for me to do by myself, with no idea what kind of ceremony, or any of the hundred things you need to decide at that time. I tried to bring it up a few times, but he only said that he didn't care what I did as far as final plans. Of course it's difficult conversation to have, and now that it's all done it doesn't seem to matter anymore, but at the time, every decision was so difficult, I just wanted everything to be so perfect for his celebration of life.

Anyways, I'm starting to ramble on now, so I'll just sign off, as always, be well my friends,
Chantal