Mom does not want to have Surgery

[tk1235]

We just got back from the doctor's office and Mom is really scared to have the surgery. I don't know what to do. When she asked the oncologist what choices she had he told her that the surgery was not the last resort, she could continue with radiation and chemotherapy. Basically, she would receive one cycle of Cisplantin and Etopocide and radiation and then would follow in four weeks with Taxotere once a week every 3 weeks. I know everything that has been said on this board says that surgery is the best option but Mom believes that the chemo and radiation will do the same thing. It might not cure her but it could be controlled. She is scared that she might have a stroke on the operating table or some other serious side effects and would rather go through the continuation of chemo and radiation. I am on an emotional roller-coaster right now. The doctor says that ultimately it is her decision. She thinks I am disappointed because she doesn't want the surgery and I am truly on the fence because if something bad should happen during or after surgery I would not forgive myself. The doctor believes that the thing in her chest was an infection as her white cell count was normal today and she even looked alot better since she had been taking the antibiotics for 14 days. He also said that the surgeon would not know until he actually got in there what this thing was or how much of Mom's upper lobe he would remove. The tumor has shrunk and the lymph nodes are not involved anymore. I really think all of these doctors shoot from the hip when it comes to this disease. He basically said that the medical profession try different combinations of treatments as no one cancer is the same. I am really frustrated. But, I think that I have to let Mom make the final decision. I called the surgeon today and asked him to call me as Mom was having a change of heart, but he hasn't called back. Has anyone been down this road? Thanks to everyone that answered my previous post.

Terrye

[Nick C]

Terrye,

I am truly on the fence because if something bad should happen during or after surgery I would not forgive myself.

Terrye, why? You didn't make your mom sick. You aren't the one who is operating. You can't blame yourself or take credit for any eventuality.

But, I think that I have to let Mom make the final decision.

My experience, you have to let her decide. My role was to make sure her decision was made with ALL the information available. And then she made the call.

When she finally decided, I wept like crazy. Any decision she made I would NEVER be comfortable with because I wasn't comfortable with the situation period. But today, I have no "I should haves". She called the shots. I gave her the support to do so.

I do not have the same "medical situation" so I can't really help you there. But I wanted to share my "child with a parent with a difficult decision" perspective.

If your mom is missing a key piece of info in her decision making, then make sure she has it...but she will decide, and whatever that decision is, support it.

But, I think that I have to let Mom make the final decision.

I have to tell you my experience here. Mom was not sure what to do. And what she needed to hear from me was "I support your decision no matter what." However I followed it with "But whatever your decision, please know I will cry like a baby when that day comes, because none of it is the answer I want." And when she decided we sat down, she told me how she wanted to proceed and I wept. But today, Mom is gone but I bare none of the "I should haves". She ran the show. But she made no decisions based on fear of

And definitely talk to the surgeon. I would think he/she would at least have an idea of what the surgery would be like prior to the actual incision. There is too much screening technology out there not to have a good idea of size and location and what the procedure would entail...I would think.

[Treebywater]

Terrye--

Have you all gotten a second opinion? It sounds like you don't feel 100% comfortable with the knowledge-base of this doctor--and as so many people here can attest, there are many, many doctors who just don't know enough about Lung Cancer.

Maybe it would help your Mom to decide if she heard from another doctor (who.... perhaps would be someone you were both more comfortable with) that this is the course of action. At the very least, it might help allay some of her immediate fears more time to get more information.

Absolutely support her 100%. But help her get all the information she needs to make this decision. I think it's also important for you to validate her fear. It is ok for her to be scared of this surgery. From what I understand it's a pretty darned major operation. But, it very well could be her best shot.

(((((hugs))))) to you and to your Mom.

[Ry]

I vote for the second opinion also. If she is afraid of surgery she may be a candidate for cyberknife or RFA...never know--another doctor may have a better idea.

[j's girl]

The path you are on is very familiar to me. Mom had the same difficutly making this decision. When faced with this choice, at this point in the treatment plan, we were told that statistically, survival rates were about the same, either way - surgery or chemo. In my Mom's case, her oncologist said that given the amount of chemo she had left to take and the amount of cancer that was there, he wasn't optomistic. It sounds like your Mom's oncologist is more optomistic and that is good!

We had a surgery date booked and Mom didn't make the actual decision until the day before surgery. We sat down and wrote out the pros and cons of both options. But in the end, Mom always chose the most agressive options and for her, there really wasn't a choice. If she was going to fight it, she had to have surgery. It doesn't sound like this is the case for your Mom.

Talk to the surgeon. I talked to Mom's surgeon while Mom listened in on another phone. You and your Mom should make a list of questions and concerns to talk to him about. Let him know that your Mom is listening in and tell her to jump in if there is something she needs clarification about.

Mom's white count was really high too. We were told that lung infections are common because the tumor can block off part of the lung which becomes infected. It's a good sign that her count is normal now!

I also know what you mean when you talk about not being able to forgive yourself if something happened. Even though Mom made all of the final decisions, she always knew where I stood on things. When her 2 hour surgery took 5 hours and when complications arose afterwards, I had so wished I would have convinced her to go the other route. It's gut wrenching, but I also have to believe God will make the final final decision. Your Mom will make the right decision. There are never any wrong decisions. Support her, love her, and she'll do what is best for her.

Hope all goes well and keep us posted,

Shauna

[Suzie Q]

Terrye,

This is so difficult - to stand back and accept whatever decision your loved one makes. Your job is to advocate for her and make sure she has all the info necessary to make an educated choice. Shauna's idea of writing out the pros and cons is a good one; you could push it further and add risks of surgery vs chemo. Chemo is risky, too, and either one or a combination of the two has benefits as well. If she elects to not have the surgery, it does NOT mean she doesn't want to fight the cancer. It just means she chooses to do it a different way.

It really bugged my mom that her LCa was inoperable (she had multiple cancerous tumors in both lungs plus a subcarinal lymph node). She really wanted the primary tumor out! But her onc explained that the horse was already out of the barn, and FOR HER, it was better to look at systemic therapies that could eradicate or control the cancer cells already in circulation. Surgery would not improve her survivability.

A second opinion never hurts. They often come to the same conclusion, or at least they confirm what the patient already was thinking about doing anyway.

Best wishes to your mom, and please stop beating yourself up over this! You are doing a great job; your love for your mom is evident!

[kristicaregiver]

Terrye, I think even though we can think semi-logically during this time. Our mothers can only do what they know is best. I had a doctor early on that knew my mother tell me the week of diagnosis to not "let them" do chemo and radiation and that it would be fast and furious and just go for pain manangement but I couldn't tell her that? She did opt for chemo and rad which really didn't benefit her except to make her THINK that she was doing something to participate in the fight. Because she was so young, 61, it seemed logical to her. Take a deep breath and just respect her wishes, whatever they may be. Hugs, Kristi

[Don M]

Terrye:

I think cyberknife surgeons will kill off the tumor if they are satisfied that it is under control from prior treatment. They like the tumor to be rather small. I am not sure what the upper size limit is. They would probably recommend conventional surgery as a first choice, but will treat if the patient refuses surgery. Here is a link where you can ask questions about it.

http://www.cyberknifesupport.org/forum/default.aspx?c=4

Don M

[Donna G]

One of your posts say that your Mom is 78 years old.

If she has decided that she will take chemo but does not want surgery do not get upset. When they went in and did surgery on me all they found was scar tissue, no live tumor. Perhaps your Mom is right at her age.

Donna G