4 Months later and still no Treatment? - 1265543

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shanekelly
4 Months later and still no Treatment? - 1265543

Hey Everyone,

I'm a newbie here and i have to say this site and Forum is a gift from God. What a great place to share stories, advice and encouragement within the cancer community. Outstanding job to Doc West and his gang.

My Father was diagnosed with Stage 3 Squamous Non Small Cell Lung Cancer several weeks ago. He is getting treatment in St. John's Newfoundland at the Murphy Bliss Cancer Centre. My whole experience thus far has left me a little bewildered and discouraged. I'll be as brief as possible.

He got his CAT scan in early May after feeling some pain in his chest. He's 79, non smoker and in great shape. His GP saw the results and didnt think it was anything but sent it to a Lung Surgeon. Surgeon says its cancer but its localized and we'll do the lump removal but he does the biopsy anyways. Several weeks pass and we're told its in his 2 of his lymph nodes so no surgery. Then he goes to a chemo oncologist and is told he has a 20% cure rate, decent chance at 3-5 years and if nothing then 8-12 months. They plan out his chemo and radiation. Just yesterday he met with the Radiation oncologist and now she tells us she sees more cancer on the same CAT scan and cant do Radiation until she sees a new CAT scan to determine if its more cancer or just scarring after his 40 years of Rheumatism treatments.

We are almost 4 months into this ordeal and he hasnt even started treatment yet. And each appointment brings more bad news. Should this process work this way? How are we only seeing this "new" cancer now and not 2 months ago? I have to admit i'm losing faith in the quality of care he is receiving. it seems like we should have known all this before now.

Is this normal?

Best to all,

Shane

catdander
Reply To: 4 Months later and still no Treatment?

Hi Shane, Welcome to Grace. I'm very sorry we're meeting under these terms. I think we can get you some idea of what the normal timing is

4 months is so long to wait. Dr. Pennell wrote a blog on the subject of waiting as long as 4 months. I've pasted a link to it below and I'll ask him to comment. I imagine he'll post in an hour or so if he's able.

http://cancergrace.org/lung/2009/11/06/delays-in-treatment-for-lung-canc...

Best of luck,
Janine

shanekelly
Reply To: 4 Months later and still no Treatment?

Thank you so much for the response.

I didnt want this to turn critical against the folks working at the Murphy Bliss Center. THey work within a publicly funded, Federally mandated but Provincially administered health care system.

I've tried to get some benchmarks on the care they strive to meet and it seems like 41 days seems about the average. I feel we are far beyond that now from the initial CAT scan.

Something doesnt seem right and i dont know how i can best address this (Doctors, Administrators, etc) all the way from Texas.

Dr West
Reply To: 4 Months later and still no Treatment?

You're right that 4 months is a long time; sometimes the Canadian system can struggle with doing an appropriately timely workup -- the same can be said for other universal and relatively centralized health care systems, the American VA system, and plenty of others in the US as well.

That said, the whole process is likely to take many weeks to a few months even if everything is done in a very timely way, and the new findings add to the delay, but it's not necessarily that the delay caused the new findings. If his workup had shown what seemed to be easily resectable disease, that would have happened already. The "upstaging" process that requires more evaluations and more coordinated plans among many specialists is a product of what is being learned, and the treatment is being better tailored for his true clinical situation, as best they can determine. The adage of "measure twice, cut once" could be applied here (even if surgery isn't ultimately part of the plan) because it's far better to carefully assess the situation and develop the best treatment than to go in, guns blazing, with the fastest treatment only to find that they've done a surgery on your father that removed much of his lung function and introduced the risks inherent in a major lung surgery, but there was actually little or no chance of benefit from that surgery. Unfortunately, we learn of many patients whose treatments are rushed ahead of the information that should have been collected, and they suffer for it.

I can't say how much of the challenge here is foot-dragging and insufficient access to the specialists needed vs. just the time it takes to do the thorough workup required. I will say that his situation isn't rare, is one that is as long as it ever takes, and is still best served by pursuing the best plan for his true stage and not just the fastest one available.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education