Where do I start? - 1247262

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blaze100
Where do I start? - 1247262

I had mucus BAC 12 years ago. Dr's removed my URL and MRL, then followed up with concurrent chemo and radiation due to 0.1mm margin near Hilar.

This summer I started noticing a strange wheezing sound when I breath deeply. It feels like mucus in my right main bronchial tube. It makes squeaky noise when I breath sometimes, not all the time.

I've waited for it to go away. But it is not going away. I am afraid. My last CT was a few years ago. My yearly chest xrays have been OK.

I plan to make appointment with a doctor to discuss what's next step. My old pulmonary doctor has moved away, and I've lost contact with his replacement. Should my oncologist be my first stop?

catdander
Reply To: Where do I start?

Hello Blaze, I so hope it is nothing more than a benign allergy.

I will ask Dr. West, our founder and BAC specialist to respond.

Janine
forum moderator

blaze100
Reply To: Where do I start?

I realized after I wrote that I was just delaying the call I didn't want to make. So I called my oncologist office and am waiting for a call back. I'm guessing she will just order a CT and schedule an office visit.

I thought I was past this, but it is amazing how fast the fear can return. :-)

Blaze

Diagnosed BAC 9/2000
RUL amd RML removed 10/2000
10 cm tumor, 0.1mm margin
7 weeks Concurrent chemo and radiation 11/2000

Dr West
Reply To: Where do I start?

I do think that a CT is incredibly more informative than a chest x-ray. An unremarkable chest x-ray provides no real reassurance if my suspicion is high, and of course I'd have to share your concern if you're feeling some of the same symptoms you were experiencing as being associated with the original cancer.

Good luck. We'll be happy to try to address further questions down the road, as needed.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

blaze100
Reply To: Where do I start?

Thank you Dr. West. I am spending the weekend at the coast, and go in to see oncologist this coming Tuesday. Blaze. :)

Diagnosed BAC 9/2000
RUL amd RML removed 10/2000
10 cm tumor, 0.1mm margin
7 weeks Concurrent chemo and radiation 11/2000

blaze100
Reply To: Where do I start?

Just to follow up on my post. I had chest x-ray right away, followed by CT the following week. Both came back as "no change". That makes 12 years and counting. Yeah!!! Barb

Diagnosed BAC 9/2000
RUL amd RML removed 10/2000
10 cm tumor, 0.1mm margin
7 weeks Concurrent chemo and radiation 11/2000

Dr West
Reply To: Where do I start?

Truly wonderful news! Congratulations!

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

glenglen
Dr West

Dr West

In Aug 2014, I had an open thoracotomy with RMLobectomy. since it was stage 1a no Radiation or chemotherapy was recommended.
The pre-op PET stated no other concerning lesions are identified in either lung field, although there is minimal uptake in right apical scarring and a few other ground glass opacities bilaterally all of which appear stable anatomically.
( I had been having Ct lung scans since 2011 for screening of being a former smoker )

At the six month post-op scan in Feb/15, the surgeon did not address any issues.nor did the scan mention RUL.
However,on the 12 month scan in August. it states.....

"there is a nodule in the right apex which is seen in the coronal reformatted images at approximately measures 1cm in size. This is stable compared to the Feb. exam and it is growing and certainly new since the earlier from 2013. Giving this to suggest CT guided biopsy."

On Follow-up with the surgeon, he told me of this, as well as saying, that we don't know if or when the GGO's
may become tumours, that I was a ticking time bomb, however his recommendation is to do a diagnostic CT
at the end of Dec.

I was shocked and did not ask questions, and am seeing him again on Tue. to ask why we are just "watching"
this very dangerous tumour which after researching, I am calling this a pancoast tumour.
I am very uncomfortable with waiting, however would very much appreciate your opinion on this.

sincerely, Glenda in ON, Canada.

catdander
You've stated a nodule that

You've stated a nodule that is stable from Feb to August and only shows to be growing because it wasn't there in 2013. This suggests something that is very slow growing and may not be that can be watched in case it does need to be addressed. Dr. West does talk about this in a blog post he recently wrote. It specifically pertains to BAC because some forms of BAC are so slow that they never become a threat, however any type of lung cancer can be so slow that watching is better than invasive procedures. You can read more about it here, http://cancergrace.org/lung/2015/09/14/gcvl_lu-f03_indolent_lung_cancer_...
http://cancergrace.org/lung/category/lung-cancer/core-concepts/bronchiol...

Also not all tumors at the top/apex of the lung are pancoast tumors.

Of course if you're not comfortable with the care you receive it's usually possible to see a pulmonologist or oncologist, someone who treats and cares over time people with these problems. I'm very sorry that the surgeon would use the term ticking time bomb. That's not only incredibly rude and thoughtless but not the case. No one can say at this point that serious issues will follow or how serious. 6 years ago a surgeon told my husband he'd be dead in 5 years. He's been NED and without treatment for 3 years.

I hope you do very well.

Janine