Advice Needed

[niececola]

Good Morning,

My mom is scheduled to find out the results of her CT scan the first week of November. As some of you may know, my mom does not ask a lot of questions about her condition, so I am her spokesperson when it comes to the heavy duty stuff.

A few things have come to mind that I would appreciate your thoughts on:

1) Her diagnosis came as a result of a biopsy of her sternum. Upon meeting with the doctor at the beginning of all this, he said he will use that same location for all tests going forward to determine whether or not the chemo is working. I have read stories of people who have had CT scans and it was determined that the primary tumor had decreased but new tumors had developed in other parts of their bodies. My concern is that if he only does a CT scan of her sternum, he will never know if tumors are developing in other parts of her body, i.e. liver, brain, etc.

2) He has not yet discussed radiation with us. Isn't it quite common to do radiation and chemo together? The doctor has reduced her steroids and her back pain has stayed consistent, so I think it is his thought that the chemo is working. I think I am confused as to why radiation is used. It is only used for pain management? Is there no value in using it to get rid of the tumor or is that what the chemo is for?

3) At what point will they do a PET scan again?

I think this is all for now. I think I know some of the answers to my questions, but this board is so helpful in finding out what other people know and have experienced. I would like to go into my conversation with the doctor with as much knowledge as possible.

Many thanks!

God Bless,

Denise

[Ry]

I can only share that our oncologist stated that radiation works best in conjunction with chemo. Because John had vena cava syndrome they started radiaion immediately, we flew through the CT scan, biopsy, and were across town getting radiation by 4:00 that same afternoon. Went to the medical oncologist within 2 days to get chemo going as they said he should be on both. So yes, it's a question I would ask, why not both?

[Don Wood]

Denise, I can only share with you my wife's experience in the areas you asked about. (1) I would think more than the sternum should be scanned. Lucie has had bone mets in a number of areas, and some were found because they did a whole body scan of the bones. Her onc uses CT, MRI and x-ray where appropriate. He will have scans done in any area where she has had severe pain. But since she has bone mets, he does a full bone scan every now and then, even if there is no pain.

(2) Lucie's medical onc has her go to the radiation inc. whenever a tumor is discovered and it is causing severe pain or is threatening the integrity of the bone. Radiation and chemo can be done together, but he did not have every met radiated.

(3) My wife's onc uses primarily CT. MRI and x-ray for scanning. She has had only one PET scan in the past year and probably will have another in a few months. Her onc uses PET just to be sure there are no new surprises.

I hope this helps add to your info. Don

[niececola]

thanks Don and Ry! You have confirmed some of the questions that I need to pursue with my mom's doctor.

If anyone else has some more information to share, it will be greatly appreciated. I am going to call the doctor this week.

Thanks!

Denise

[rinksgal]

Darrell had 33 treatments of radiation to the chest area, along with chemo.. I think this was due to being in the mediastiaiumn area, and the largest tumor being 2.8 x 2.8 cm and not being able to remove it surgicially.. Darrells oncologist might be ordering a new pet scan or mri depending on what the ct scan showed that he just had done yesterday.. Get results on this on Thursday...

Good luck! Don't be afraid to ask questions and to question everything!!

Christy

[kimblanchard]

Denise,

I have those same questions. My mother was diagnosed in 9/03 with nsclc stage IV also with mets to her lymph. She has incredible back pain because that is where most of her large tumors are. She just finished her 2nd chemo/taxol treatment and either next week or after her 3rd treatment they will do a CT scan. I want to make sure they scan not just her abdomen but all areas. She has had no PET scan and I will ask when and if she should have one. As far as radiation, I have asked about that also, just to relieve the back pain. They told me that the area was so large (whatever that means) that they can only get small areas. I want to know why can't they do several small areas in the back? It is so frustrating....My mom has her dr. appt. tomorrow Wed. and I will be going in with a list of questions as always.

Kim

[LindaMRG]

Hi Denise,

Just wanted to give my two cents since Im the one asking all the questions for my dad.

Ask onc what you just asked us. Is this enough just to scan the sternum area. On my father they do the chest and down to pelvic area. He had one bone scan in June, after diagnosis in May.

My father never had radiation but is having it now. He's having IMRT. I'll be happy to supply more info if you are interested. Its a form of radiation where they target the tumor and surrounding tissue is not affected so he will not have the usual side effects from radiation. They will do this on his lung tumor and mediastinal node. He is not a great chemo candidate so this is a good option for him.

He had a PET scan upon diagnosis and after his chemo.

Keep us posted on onc's answers.