Husband diagnosed w/ NSCLC inoperable

[indydorsey13]

My husband was diagnosed with NSCLC on Sept. 28th.....inoperable due to the fact that it's behind his heart, and possibly attached to his aorta..He has had many test, scans, e-rays, etc....lung scan today & pet scan tomorrow... I am concerned that it's 5 wks. since diagnosis, and no actual treatment started...His cancer is aggressive & fast growing... I left mes. with oncologist today about my concern....I would like to communicate with anyone who has had experience with this kind of cancer. (I think he will start chemo & radiation by the end of Nov.) His prognosis is not good... I am very concerned.

[Donna G]

Welcome and I am glad you found us. I wonder why they are taking 2 months from diagnosis to start chemo. Boy that sounds like a long time. Seems I had about a week of tests, the next week I met with the Onocologist, Radiology, and surgeon ( in hopes I would become operable which I did) then it started. Did you see anyone for a second opinion?

Keep us posted.

Donna G

[recce101]

Hi, welcome. Five weeks does sound like a long time to patient and family, but it's probably within the norm for the medical world. Why is it said to be fast growing — changes from an earlier scan? Appearance under the microscope, assuming there's been a biopsy? Let's hope today's PET will give them all the additional info they're looking for and treatment can begin quickly.

By the way, I deleted the email address from your post so it won't be visible to just anybody who happens to browse through the site. Getting on some lowlife's spam list can be a real hassle. Legitimate members can contact you via the PM or email buttons at the bottom of your post. Best wishes and Aloha,

Ned

[indydorsey13]

"Donna G"]Welcome and I am glad you found us. I wonder why they are taking 2 months from diagnosis to start chemo. Boy that sounds like a long time. Seems I had about a week of tests, the next week I met with the Onocologist, Radiology, and surgeon ( in hopes I would become operable which I did) then it started. Did you see anyone for a second opinion?

Keep us posted.

Donna G

[indydorsey13]

Just got home from husband's pet scan...We should have more answers from the result of this pet scan.... This cancer is a roller coaster... I am not sure why it's taken 5 wks. for him to get any treatment started....His next scheduled appt. is Nov. 17 for radiation / chemo consultation (?) He goes back to see oncologist on Nov. 20... We were told it's a fast growing cancer from the first biopsy.... I know his cough & chest pain is getting worse.... I will call again today for an answer as to why 5 wks., and no treatment started..... I am hoping that "maybe" someone is considering surgery again,and this could be the reason for the pet scan !!! ( I don't really believe that is a FACT though )...just wishful thinking...The oncology surgeon told us at one point ( last week ) that surgery could be done which would mean removing left lung......plan changed again within 2 days, and then a pet scan !!!! confused ! I am VERY new to this site.....like it, but am still learning how to use it to get the most from it.

[dianew]

I am not sure what's normal, but it took me 7 weeks before my first treatment. I know the PET scan was a big hold up because they wouldn't even schedule it until they got an OK from the insurance company, then the biopsy, first appt. with the onc., port put in, etc. -- it all took so much time to schedule.

I know this isn't any help -- none of us should have to wait so long to get a treatment plan in place -- but just wanted you to know you aren't alone with the delays.

I hope things get moving quickly - I think you will feel better once they do.

Diane

[Bruce u]

I had a chest x-ray in February for something else but the radiologist noticed a spot on my left lung. Between Doctor's leaving, surgeon going on vacation, all the different test, etc. I didn't have my surgery until September. So I can certainly understand that waiting is very frustrating.

[donnamex]

I will pray for you and your husband.... like your husband mine was told the new in March 2009 stage 3b lung cancer.. and i know what you mean it seems like forever... but it does seem to take time... but to us it seems to long.

just wanted to say ill pray for you..

Love donna

[jaminkw]

All we can offer you in this interim is encouragement and support and personal information that is relevant. It must be awful waiting so long for a treatment plan. Here we all know that you rarely start settling down into this journey until the treatment plan is in place. That's an important turning point. Hope it comes together for your husband soon.

Judy in Key West

[Trawna]

(((Indy))) Many of us have experienced similar delays. My husband was offically diagnosed with 3B NSCLC in October 2007 but treatment did not start until mid-January 2008, partly because his chemo was at one hospital and his radiation at another and they BOTH had to get their acts together. You'd think in this computer day and age that reports and scans and so on could be sent electronically betweeen hospitals and doctors, but apparently no. Anyway, the whole point is not to be surprised that it's taking a long time, but keep on their backs to get it started. Your description of what you are going through now sounds exactly like what my husbnd and a I went through. I will keep everything that I can crossed for you and your husband! This is a great site and I am glad that you found it, it's a tremendous help if only to talk to others who have been there.

Jane

[kukla]

Hi Indy - I am so sorry that you and your family are going through this. I don't know what's normal - it took two months to diagnose my husband with stage IV, but once they did it he had chemo the next week. Part of the reason is because his pulmanologist wouldn't give us the results of the pet scan but referred us to the onc, so my husband was officially a patient by the time we found out how bad it was.

It is such an awful roller coaster, especially at the beginning. Everything is hurry up and wait. Get the results of one test then wait......until they decide to do another test.

The one thing that has helped me as a caregiver is to be the best advocate for my husband that I can. I do a lot of research online, especially at cancergrace.org. If something seems odd, I call the doctors until I get a call back. And I call ALL of them - pulmonologist, onc, family doc. They don't seem to mind and are happy when I tell them I've read some new research.

I can tell you that, as an advocate, the info is scary. We were told 12-14 months and we are at month 14 with improvement. One of the most valuable things I've learned from this site is that the statistics are crap. What counts is how each person responds. There are a lot of great stories from folks on this journey who are doing well. So don't lose hope - each person is different.

Good luck and God Bless.

Kathleen