looking for an answer

[jamie]

My dad has IIIb LC. His doctors havent given us much information, and all this is pretty new. Quick situation info... Dx 2/5/04, IIIB, some lymphnode involvment (doctors didnt say how much), non operable no signs of cancer otherwise. PET scan shows "something lit up in neck" but doctors not concerned. My question is for anyone who can tell my why my dad is inoperable. Im pretty confused. Originally they told us the goal was to shrink his grapefruit sized tumor with chemo and radiation, and go from there. Monday they said it had shrunk in half! Great news or so we thought. My dad then asked about surgery, and they looked at him like he was crazy, then informed him he was never a canidate for surgery! He said he felt like he was slapped in the face with cancer again! Here he thought (and so did I) that he could beat this,,, and now things again look bleak. Anyone who can fill me in? Like i said, This is all really new to us . Jamie

[Connie B]

Hi Jamie.

I am so sorry to hear what you and your dad and family are going through.

MY TWO CENTS WORTH: GET A NEW DOCTOR A S A P

This journey is more then anyone can handle with a GOOD doctor or medical team, but with a BAD team you don't have a prayer.

GOD BLESS AND GOOD LUCK!

Stay with us on the board, you'll learn LOTS, and get much needed support!

[Elaine]

Jamie,

I feel the pain and the rightful anger in your words. One thing I have learned recently, is that many Doctors aren't the b est communicaters. I am in a similar position, State IIIB/IV and am also inoperable--due to both the size and the location of the tumor. That is what I was told.

However, you and your dad and other family members have a right to a second opnion and also you have the RIGHT to have the FIRST opinion explained to you clearly and completely. DOn't settle for less. You may have to move on if these doctors won't respect you and your father enough to treat you as intellegent human beings who have BRAINS and EMOTIONS.

Let us know how any of us can help. I have a lovely daughter who is about your age and my heart aches for you both.

Pls let me know if I can be of any help to you.

elaine

[Elaine]

Jamie,

I feel the pain and the rightful anger in your words. One thing I have learned recently, is that many Doctors aren't the b est communicaters. I am in a similar position, State IIIB/IV and am also inoperable--due to both the size and the location of the tumor. That is what I was told.

However, you and your dad and other family members have a right to a second opnion and also you have the RIGHT to have the FIRST opinion explained to you clearly and completely. DOn't settle for less. You may have to move on if these doctors won't respect you and your father enough to treat you as intellegent human beings who have BRAINS and EMOTIONS.

Let us know how any of us can help. I have a lovely daughter who is about your age and my heart aches for you both.

Pls let me know if I can be of any help to you.

elaine

[MO_Sugar]

Jamie,

It could be because of many reasons that surgery is not an option. Shrinkage is wonderful thing however and it sounds to me like they are getting the beast under control that way right now.

Prayers that they will give you the needed information to help you and your Dad get through this. Remember THEY work for YOU!! Ask the tough questions and make them answer.

God Bless,

MO

[Ry]

If the tumor has not shrunk to a point where they can get a clean field around it, they will not operate. If he has the maximum amount of radiation surgery will not be possible (the area will not heal) so if you want a second opinion on surgery he will have to stop radiation at some point to be evaluated.

For my husband surgery was not possible because his tumor was too close to the vena cava. All the best to you and your dad.

Rochelle

[Guest phyllisb]

Sorry to hear that you are going through all of this. One of my nurses once told me that you could ask 5 different doctors for an opinion and you would get 5 different answers. Unfortunately, you end up doing a lot of your own research which is stressful since time is such an issue. You should get a second or even third opinion. I have seen at least two different surgeons (which of course include a throat surgeon). I have seen at least 5 different oncologist (specialists for the most part in head and neck) and some were good and I was happy with the info and some were horrible and I was a basket case. I was told that I was inoperable. I was told that if my tumors shrunk it would be a maybe. I was also told which made sense that surgery on my lungs would remove so much tissue that my quality of life would suffer horribly, but I have 12 tumors in two different lungs. I am now going thru carbo/taxol to hopefully shrink the tumors and then hopefully have rfa to remove the remaining cancer. Of course I would think your dad has a lot more options than me. Doctors are just plain confusing most of the time. Good luck.

[Guest phyllisb]

Sorry to hear that you are going through all of this. One of my nurses once told me that you could ask 5 different doctors for an opinion and you would get 5 different answers. Unfortunately, you end up doing a lot of your own research which is stressful since time is such an issue. You should get a second or even third opinion. I have seen at least two different surgeons (which of course include a throat surgeon). I have seen at least 5 different oncologist (specialists for the most part in head and neck) and some were good and I was happy with the info and some were horrible and I was a basket case. I was told that I was inoperable. I was told that if my tumors shrunk it would be a maybe. I was also told which made sense that surgery on my lungs would remove so much tissue that my quality of life would suffer horribly, but I have 12 tumors in two different lungs. I am now going thru carbo/taxol to hopefully shrink the tumors and then hopefully have rfa to remove the remaining cancer. Of course I would think your dad has a lot more options than me. Doctors are just plain confusing most of the time. Good luck.

[ejpritz]

I am so sorry for you. My mother had a tumor in each lung. She was told it was inoperable. We got a second opionion and she went to a great surgeon who told us it is operable. She underwent radiation and chemo, and one of the tumors disppeared and one shrunk significanlty. Her surgery was scheduled for yesterday(Tuesday). Then Monday night the surgeon called my mother and told her he now sees someting on her spine. He cancelled the surgery (the poor thing was already packed and so excited for the big day) and at this very moment she is getting a bone scan. A neurosurgeon will be looking at the scan and they will call us tomorrow to let us know if surgery is still an option. They are not even sure if what is on hers pine is cancer or not.

But my point is please seek another opinion. If we did not get one, my mother may not have even survived the past six months for all I know, or she may have been terribly ill. The first Dr. offered little communication and told her there was nothing that could be done. We started seeing this other one and he is being very aggressive. Though there was a huge setback with the spine, we are still in a much better situation then we were when this all first came about.

It may turn out that they say it is inoperable as well, but I can tell you from first hand experience I had a Dr. say it was inoperable and one say it is. Proof that you can get another answer.

Hopefully you willl get one that you are hoping for.

Where are you located?

[Tiny]

Jamie

Please be sure to seek out additional opinions as already suggested above (ASAP).

Another couple of thoughts: you might consider asking your dad to sign so that you can have access to his medical information. Some of us make sure that we receive a copy of ALL scan reports. Sometimes you may have to pay for them, but it is invaluable to be able to read the report in its entirety; that way you know that the doctor hasn't neglected to mention something that you may consider important. I also ask for a copy of the attending doctor's CHART NOTES a few days after my office visit (it may take a couple of days for the doctor's dictation to be transcribed and filed). Again, you MAY have to pay, but it is very reassuring to be able to verify that what is WRITTEN DOWN corroborates what was SAID (or HEARD ) in the office.

Welcome. Good Luck and Prayers.