Tuesday, March 11, 2008

my choices for treatment

 I saw the surgeon yesterday and he gave me two options: 1) chemo therapy then surgery to remove more lymph nodes (because cancer was found in the two nodes previously removed), or 2) surgery first and then chemo. I opted for surgery first because I thought I might be stronger now, rather than later considering the MG 

myasthenia gravis)

However, this surgeon (who has done an excellent job with my first surgery) believes in removing the lymph nodes ("cleaning out" the area, as he puts it) and that is a controversial issue. Other good doctors do not believe the same way, are more conservative about taking out lymph nodes. We do not know how many lymph nodes are cancerous.

I know my surgeon wants to remove all possible cancer cells in the lymph nodes, but to remove all lymph nodes almost guarantees that I would have to live with lymphedema (swelling of the arm and chest area) the rest of my life, due to lack of a lymph system in that area to remove fluids, with attendant pain and other debilitating factors, to a greater or lesser degree. Removing fewer nodes gives me the possibility I won't have lymphedema.

When I went home after my appointment, having signed a paper stating I would agree to the surgery, I had no peace, only fear. This fear and anxiety intensified as I read medical articles related to the removal of lymph nodes and lymphedema. The decision I made would be life altering. I may have a better chance of removing all the cancerous cells, but I would very likely live with pain and debility the rest of my life. I needed time to consider my options.

I have reversed my decision to have this surgery first and informed the doctor's office. Now we move to chemo therapy, giving me a chance to do more research and get a second opinion as to the surgery.

This has been a wrenching decision! Though I can be objective and assertive when it comes to advising others, I find it very difficult to do the same thing for myself. I tend to defer to "authority" figures and doctors to me are authority figures. I think it has alot to do with the fact that my dad was a doctor, and that we were raised to respect all persons in authority. This is not a bad thing, but when it comes to choosing what is best for my own medical care, taking responsibility for it, this can be a hindrance.


Your prayers are needed as much as before! If you have experience with this issue, please drop me a line. I will be gathering as much information, even anecdotal information, as I can in my decision making process. I need wisdom for seeking a second opinion from a surgeon. There is also the issue of insurance approving whoever I go to. I don't know if my insurance would approve of me going outside the Loma Linda system to seek treatment since I have begun with them. And I am not unhappy with Loma Linda per se. They are doing an excellent job. I'd prefer to stay with them.

I need wisdom and guidance. The only thing I know to do with certainty, is to seek the face of the Lord, who promises to give just what we need.

Pray God continue to hold at bay any cancer spread, to contain it and by the chemo therapy eliminate it. Pray God give the oncology team (including the neurologist for the MG) wisdom in selecting my chemo drug "mix", suitable to eliminating the cancer as well as mixing with the MG drugs I'm on. Pray I remain strong during chemo therapy and have a minimum of side effects. Every kind of stress weakens me and could become life-threatening.

You are part of my "life-line" and I deeply appreciate you!

Jacque




3 comments:

Marsha said...

I have no advise for you my friend. I have not walked your path. But I know the One that is carrying you. I will ask Him to speak clearing to you as you rest your head upon His breast.

Please know I am praying daily for you. I love you my sister.

Lynn said...

Jacque,
You are doing great being your own advocate. Listening to your body and the peace within will definitely guide you. May God grant you peace in your final decisions and may He hide you under the shadow of His wings to give you His comfort and protection.

I had a sentinal node dissection and they removed the five closest lymph nodes to the tumor. Is that an option for you? Asking the surgeon to remove fewer nodes and testing them before removing all of them. If they are clear then you can feel more comfortable about going on with the chemo and regular follow up without as much impact with lymphedema. If they aren't clear then removing the rest would be a clearer decision point for you at that time. It may mean another surgery so that is a consideration.

Also there are some relatively easy exercises to help your arm recover. Lymphedema isn't a given but it can have an impact. My mother is a 32 year breast cancer survivor (YEAH!!!). She does have lymphedema. She has really learned to live with it without too much concern. Only a few times has it really been an issue.

Keeping you in my thoughts and prayers.

Love
Lynn

Unknown said...

Dearest Jacque,
I've been following along your blog and praying for you quietly, but feel that I must speak now to agree with your decision. My mother had all her lymph nodes removed and developed very painful lymphedema that in effect, crippled her. I won't go into all the bad details, but the cancer became nothing as she suffered from the pain in her arm, and eventually, her leg too. Even morphine was unable to assist with the pain.

You are not on this path alone. I'm glad you are listening to the voice of God. I will continue to pray for your healing. You have been a wonderful example of courage to me for years. I pray that you will continue to be a wonderful example for many years to come! You are very special. Love, Susan