Feeling Very Frustrated!!

[Kslilsis4]

Hello, Everyone.

I have been reading post for a few months under my husbands sign on, David W, decided it was time for me to get my own identity.

As you all know David's newest tumor was found in the adrenal gland 2x2 cm, the onco thinks it is malignant because it wasn't there before the last ct scan. I am so frustrated with all of this.

We keep thinking that we have a plan and then boom, oops, sorry change in plans. I guess I should be greatfull that they are trying different things, but it just keeps us guessing all the time.

If the lung cancer tumor is not responding to the chemo drugs, then all they have to offer is Iressa, and if that doesn't help, Where to then?????

They don't want to do surgery now because of the new tumor in the adrenal gland. The thoracic surgeon previously said that if we could just get some shrinkage then he would operate and remove the left lung and the lymph nodes.

I told David that we should get another opinion from M.D. Anderson in Houston, I have heard a lot of good things about them. We'll have to see if insurance will cover expenses or not.

Sorry to rant and rave, but just thought I would get this off my chest.

Thanks for listening.

Nancy W.

[bart ziggie ( Greg )]

Kslilsis, first of all welcome aboard officially. I certainly can relate to part of your post. This is the rollercoaster effect that all of us know all to well. I too am faced with a rather dire situation regarding my treatment. I have had a full blown major recurrance with multiple mets. The biggest problem being is i am only a little over 2 months out from treatment. My treatment options are very slim. The statistics if you dare to look at them are very bad. I choose not to buy them. I along with my drs. have got to decide on a last ditch salvage chemo regimine. We dont know if my body will even tolerate any treatment at all. So i am facing the proposition of being told that there just isnt anything else we can do. I certainly hope that is not the case for me or David and you. I think you are on the right track getting a second or even third opinion. Dont give up hope. It is difficult to digest bad news day after day i dont care who you are or what is wrong. It is hard. We survivors and family, caregivers, etc..... know this all to well. As far as being sorry for your ranting and raving i dont think you need to apologize for that. You are feeling exactly what you are supposed to be feeling. This disease sucks ! Fortunately we have this board to come to and rant and rave all that we desire and have people tell us " i know the feeling " keep posting its good to have you aboard.

Regards

Greg

[Nancy O.]

Hi and welcome. It sounds like a second opinion is in order. Everything about this disease is so confusing, and overwhelming. Just go with what feels right to you and good luck.

[bobmc]

Hello Nancy;

Welcome and my very best to you, I'm a firm believer in getting second opinions. I got one and although it did'nt change anything it did provide me additional comfort with the knowledge that I was doing all I could.

Now MD Anderson is one of the top cancer treatment facilities in the country so if you can, I would be making the calls and getting the appointments.

again welcome and let us know how ya do!

you and Dave will be in my prayers

God bless and be well

Bobmc- NSCLC- stageIIB- left pneumonectomy 5/2/01

" absolutely insist on enjoying life today!"

[john]

Here is a list of NCI designated cancer centers. Not sure if the one in Iowa is closer than MD anderson, but you might want to look at cancer centers that are closer. The ones in the list are all designated by the National Cancer Intstitute ( part of NIH - national institutute of health)

Ray A has the same problem as you. He had tumors on both adrenals though. I did a search on the web a while ago and sometimes surgery is still done if there is only one adrenal gland involved.

http://www3.cancer.gov/cancercenters/centerslist.html

Best of luck

[Don Wood]

This IS a frustrating disease, and it takes us through quite a maze. We have to adapt and learn to ride it out, always moving with hope. A second opinion is a good thing. Go for it. And this is a good place to vent -- we all understand and don't mind, because we will have our turns. Don

[Fay A.]

Don't forget the National Institute of Health in Maryland. It's my next stop on this lung cancer journey.

Fay A.

[norme]

Welcome to the board,

I would say to go wherever you feel will give him the best treatment. A second opinion is alway good. I am so glad I took buddy for one. I was just playing along with the chemo onc until I spotted something I thought wasn't quite right and am glad we changed.

JOhn always comes through with places to go. Check out his web sights and see if there is anything closer that deals with the treatment needed....

Call the insurance co and see if you can't get approval now. No time to wait doing by mail.

[Kslilsis4]

Thank you all for letting me vent, I do feel a lot better. I just refuse to settle for one onco's opinion, or lack of. I got to thinking about this, and none of the oncologists are seeking to check for bone marrow problems, david has been complaining of his ribs hurting. He still has a tickling cough that they dont seem to be worried about. He did get some kind of desolving pills that will numb the throat.

Thank you all for your support and prayers. I keep you all in my prayers too.

God bless.

Nancy W.

[Ry]

Hello Nancy,

Welcome to the wives club. I understand your frustration and just want to add a little to the excellent advice above.

First of all, you need a second opinion especially about the surgery. Our first oncologist told us that surgery was not possible for my husband before even getting an opinion from a surgeon. We made him have a surgeon review the scans and he said he would not operate. We then went to our family doctor and he referred us to the University of Michigan hospital for another opinion. While they agreed that surgery was not possible, they stated his treatment was a standard protocol and they would do the same thing. We were glad to know we were on the right track.

BUT, one thing that did happen was that by having someone else review his scans they picked up something the others did not, an enlarged adrenal gland. While we were scared this was a met for awhile, it was not. My point being it's always good just to have another pair of eyes look at the scans. It may not be a met. I'm sure you've read the responses to David's post regarding the adrenal gland.

I wish you both all the best.