Dad Dx NSCLC 09/11/07 Question.....

[blackpup]

Hello everyone,

My father was Dx in september with NSCLC. The Dx was based on lung x ray. Following a bronchoscopy, the doctor ordered an cat and pet scat (taken in early november). He was told the he would be given those results in 3 weeks at best.

He was to begin chemo in the mean time, which should have began in early october (we were given a 3 week delay in mid september) We are now in mid november, and he just received a call from the pneumologist(which we were told that he would never see again), wants to see him again next week. Why would the pneumologist want to see him again? Is it a coincidence or is it related to the pet scan? I thought that the oncologist would be the one to give us those results. Before the diagnosis, I did not know very much about cancer, but I did try to learn what I could before meeting with the pneumologist, following the bronchoscopy test. The pneumologist would not tell us what stage my father's cancer had reached. He told me that the technical jargon would be of no use to me because I was not an oncology nurse. I did manage to make him tell us that my father had NSCLC (I had to ask him to precise what kind of lung cancer dad had) He also told us that the mass was 6x4cm and had metastised (who knows where, he did not know)but the lesions were 3cm?

I don't know what to do...I feel like we don't have any answers. It feeld like the diagnosis was a mistake, since no treatment is being offered. My dad's situation is deteriorating quickly. Any tips would be very welcomed

[recce101]

Hi, Jasmine, welcome to the LCSC!

I would find this sort of runaround unacceptable, and it appears that you do too. If this is the best your local area has to offer, your dad really needs to get to a comprehensive cancer center, where all necessary services are under one roof, the docs are on the same page, and things move quickly. After a treatment plan has been determined, it's possible to get the actual treatments (chemo or radiation) closer to home under the supervision of an oncologist at the center.

Since I'm stuck out here in the middle of the Pacific (not complaining!) I'm not very familiar with the centers on the mainland. But when the folks over there wake up, you should get some good info. If you can post your location, you might get some specific recommendations based on members' first-hand experience. I know it's a hassle to make a change, but it's still early, and treatment hasn't started yet. A number of our members credit the fact that they're still alive to their determination to seek a second, third, or even fourth opinion. You may hear from some of them too.

My best wishes and Aloha,

Ned

[trish2418]

Hi Jasmine, and welcome here.

I'm so sorry you guys are being given such a runaround by the "professionals". I'd definitely seek a second opinion, preferably at a major cancer center.

I'm sending prayers for you and your dad.

Trish

[Patti B]

Hi Jasmine

Sorry about the runaround you seem to be getting. I agree with Ned and Trish - you definintely need to get a second opinion if that is an option for you. My onc. actually recommends everyone does that just for their own piece of mind. It is totally unacceptable for someone to have to wait this long and to me, totally unacceptable that in his opinion you won't understand what he has to say. It is HIS JOB then to lay things out in a matter in which you WILL understand.

I also agree that once you can let us know your location, someone may know of a great treatment center near you where you will feel more comfortable.

Good luck and hope things start to turn around for you.

[Don M]

Get a second opinion at a comprehensive cancer center. They will explain everything to you and all the specialists communicate with each other well.

Here is a link where you can choose National Cancer Institute (NCI) approved Cancer Centers by state. There are other excellent comprehensive cancer centers not on the NCI list, but this is a good place to start looking.

http://cancercenters.cancer.gov/cancer_ ... names.html

Don M

[Patkid]

Just hugs and support and prayers.

P

[JB]

Do not pass go, do not collect $200. Go directly to someone who'll give you answers, and opinions. At the very least contact the oncologist they originally referred you to. IMO we all need answers ASAP at the beginning.

There are many many options, but you have to find the right Dr. for you. Please do so quickly. A well laid out understanding of what EXACTLY you are dealing with and a treatment plan is a great peace of mind at this stage in the game. Knowing and understanding the DX and the treatment options will truly allow you to better understand everything.

Wishing you all the best.

[Maryanne]

You must go for a second opinion NOW... you cannot afford to wait. This is his life and he must get treatment.,

I don't know what area you are from, but Don M gave you a link to area centers that are professionals in this area.

Please don't hesitate... every breath counts.

Please keep us posted.

Maryanne

[Ry]

Can't add anything else to the great advice but if you would give us an idea of where you live someone might be able to help you with suggestions.