Need advice on finding the best treatment

billsfriend · New User Joined: 16 Feb 2008 Posts: 2

Hi everyone,

My step dad has just been diagnosed with stage IV non small cell lung cancer. He is in otherwise very good health, very good spirits, and wants to do everything possible as far as treatments go. Because they were not able to access the lymph nodes they wanted to for a biopsy, they removed the upper lobe of his left lung and he is recovering from that very well. During the surgery they were able to get samples of the lymph nodes.

Frankly we are not the least bit happy with the care he has received up to this point. It took six days to get the results of the lymph nodes biopsy back and to get an official word from the oncologist as to what stage it was. In my opinion that is way too long, considering the urgency of the situation. His bed was broken for several days as well and my mom finally had to "blow up" on the staff to get him a new one. He also had an intestinal blockage issue for several days which, in my understanding is a very serious problem and it took 48 hours for him to get X rays and to get a doctor to look at them. My mom doesn't feel confident to leave him alone for even a few hours. The good news is that he will probably get to go home in a day. Right now he is scheduled to begin chemotherapy in a few weeks at the same hospital. I don't know if they are understaffed or what but at this point I could care less. He is a fantastic person and we want him to have the very best care possible. We are strongly considering making a change to get better treatment for him. He has fully covered with excellent health insurance. He was admitted to the current hospital because his GP recommended it.

My question is, what could we do to find the best treatment available for him? We are in the east Tennessee area if that helps.

I would sincerely appreciate any advice that anyone could give me on this.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1265

Hi,

Sorry about this diagnosis and I understand your frustration about the whole situation. I find it odd that they removed an entire lobe if they suspected Stage IV from the beginning. Did he have PET scans prior to surgery?

A good site to check out pursuing a facility or doctor can be found at:

http://www.cancer.gov/cancertopics/factsheet/Therapy/doctor-facility

Things oftentimes move slowly during the initial testing and staging of lung cancer. They didn't have instant results on the type and cell differentiation for my husband either after he had a wedge-section biopsy. They know that the patient has to heal before beginning a chemo regimen. From surgery to first chemo, our time frame was about 2-3 weeks.

As a bystander, my advice would be to get him on the first chemo regimen through your current oncologist, then you can seek other opinions. Most first-line treatments are pretty much the same everywhere you go. Typically carbo/taxol, maybe with avastin thrown into the mix.

Good luck and God bless.
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

billsfriend · New User Joined: 16 Feb 2008 Posts: 2

Hi pbj,

Thank you so much for the response. They did not do a PET scan before surgery but they did do XRays and CAT scans. They probably should have.

I think before the surgery they were hoping for a much lower staging number.

I appreciate your advice on starting the first treatments with the current oncologist then looking for someone else. I will pass this info along to my mom.

If anyone else has any other input I would like to hear it as well.

Thanks again.

petersimon

It sounds like the hospital your stepdad is in provides marginal care. It also seems that they didn't do much of a work-up prior to doing something so drastic as removing a lobe! Doing a PEt scan is the norm.

If I were you, I would immediately contact the Vanderbilt-Ingram Cancer Center in Nashville and make an appointment for him to get a second opinion as to what his treatment from here on in should be. Second opinions are also the norm, so don't worry about upsetting his current doctors. A second opinion is the ONLY way to determine if he is currently getting the best care.

You can get more information about the Vanderbilt-Ingram Cancer Center at http://www.nccn.org/members/profiles/vanderbilt.asp. There you can find out about what services they offer in addition, what clinical trials they might be carrying out and so forth.

I would suggest that you RUN, don't walk to do this, if you want the best possible care for him.

I hope this helps.

Peter
PS I was succesfully treated for a stage IIIb tumor and believe me, I know how hard it is to get good information. Post here if you have any other questions.

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