How long for initial diagnosis?

[FGM]

First time poster - I haven't spent much time browsing the boards yet, but this looks like a great resource.

My question is, how long is typical to get a firm diagnosis after your very first doctor's visit? Three months ago, I reported an annoying dry cough to my pulmonologist. After an assortment of tests, including a CT scan showing at least one enlarged lymph node, a PET scan showing uptake in several nodes, and a needle biopsy, I was diagnosed with Adenocarcinoma, prob. Stage 3 or 4 (since it has spread to the lymph nodes), but they haven't yet determined the primary source (lungs are looking most likely, though). Mayo Clinic confirmed the local lab's findings.

Have just been referred to Oncologist, who is reviewing my history, but no appt. scheduled yet. I'm guessing I have another month or two of tests to pinpoint the original source and come up with a trement plan. At this point it looks like it will six months from my first symptoms until I get a clear idea of my complete diagnosis and treatment, does this sound normal?

I realize that there's no magic button to push and get a complete DX, but wondering about other's experiences at this early stage, and where to set my expectations. Obviously, I'm a little concerned that the disease has apparently already spread and six months seems like an eternity at this stage in the game.

I was diagnosed and treated successfully for Hodgkins Disease about 18 years ago, so I've been down the road before. Don't remember it taking so long, though, and I'm wondering if I'm getting the best care I can. Any advice appreciated...

Thanks,

Frank

[Ry]

I'd start pushing for the process to speed up. This is much too long in my opinion. You need to get things moving and get on with a treatment plan.

Welcome to our board.

Rochelle

[FGM]

Thanks, that's what I thought. Had to call back a few times, but I now have a slew of tests scheduled for next week, so things are rolling along.

I won't be quite the "patient patient" that I have been so far...

F

[Shelley (MLC)]

You know what they say about the squeeky wheel! I find that we get much more attention when I stay on top of the Docs. I'm glad things are moving along. Good luck with your tests. Please keep us posted on your progress. Shelley

[ernrol]

Frank,

From what you have told us, I would think your treatment should have already started. I would certainly call them and ask why it is taking so long. Keep us posted.

Stay positive,

Ernie

[Don M]

Hi Frank and welcome. Push for treatment right way. also go to Dr. West's site and ask him what the procedure would be for treatment if the primary cannot be identified. You have to register to post. At the very least though, I think they could do radiation.

http://www.onctalk.com/

Don M

[barbara5452]

Frank, my treatment started in less than a week after dx. But I had to do some pushing....

[JB]

Once Col's cancer was confirmed after the Brain Surgery, her treatment started in less than a week as well. She was supposed to be out of the hospital like 3 days after the surgery, but they kept her and started radiation right away and gave her her first chemo while she was still in there.

So many different experiences on here, you should get lots of good advice, and it will all probably say push them until you get the answers you need, and I agree.

[Patti B]

Frank -

Seems like this has been going on for a while. I was dx'd by CAT the end of last Sept, had pulmon appt the next week, tests the following week and started chemo about a month after dx. I always say that the patient MUST be his/her own best advocate so push on - and if you think they are not paying you enough attention - get a second opinion and find a doc who will. There are many fine doctors out there.

Godd luck - Patti

[fillise]

From the time my mom had her first tests until firm dx was about a month. So I think your process is taking too long--although I have heard of many folks having a long dx process. I'm glad you pushed and got your appointments.

Susan

[FGM]

Thanks to all for the info, confirmed my feelings. I had one test scheduled for today and two more for next week - once I showed up and explained the situation, they were able to do all three tests this morning, so I had a bone scan, MRI and CT scan all together. Long morning, but will be worth it. Should be meeting with the oncologist next Friday (or sooner if I can move it up, since we'll have our results sooner than expected). Things are definitely rolling along now...

Thanks again,

Frank

[palvis]

I had a cough for 3 years before I finally was diagnosed. Mine was found be accident even then. I was lucky mine had not spread and They were able to take the tumor out. I was a female non smoker age 39 so doctors refused to consider cancer.

I wish I had known of this site back then. I will be praying for you! Any questions just ask.

[babylove91297]

Waiting is the pits. I know. I first found out about the possibility that I had cancer in June of this year. I had a pet scan in July, told that if I had cancer it was a stage I. By the end of the month I knew that I had sclc. But still no treatment. I felt like at times that I was going to crack, just waiting for them to do something. I just started my chemo treatments this past Tuesday. I had a wait of nearly 3 months. I know for me, I wanted to be a part of the decision making with this. At first, I went along with what the doctors said, but the longer they made me wait the more impatient I became and I started pushing for my treatments.

I have 5 more rounds of cisplatin/vp16 to go, but I am already feeling better, just knowing that finally they are doing something other than making me wait.

You have found a great place here. There is an over abundance of hope flowing here, and the caring is endless.

Keep us posted.

God Bless,

Bobbie