Post BOT cancer PET questions, high SUV not at original tx site - 1251495

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txdoula
Post BOT cancer PET questions, high SUV not at original tx site - 1251495

Good evening, My husband completed extensive chemo and radiation to treat his stage IV BOT cancer with local mets, down the neck, but not crossing collar bone.. On his original pre-tx PET, he had a small low grade hot spot in the hillar region, though to be a nick from breathing tube during biopsy. Post tx PET at 14 weeks showed no evidence of original cancer (excellent news), however his chest lit up big time (SUV 19) in the chest,(SUV 7) in the abdomen. Whatever is going on in his chest is extensive, spread out, like a shotgun pattern. Radiologist believes it's either reoccurance, lymphoma or sarcoidosis. Husband feels perfectly fine, not ill, working and travelling full time. Med Onc, Rad Onc & ENT are all scratching their heads, unusual case, but leaning towards sarcoidosis.

1. Have you see SUV's that high in chemo induced sarcoidosis case?

2. They tried to get biopsy same day as hubby had not eating, but no anest. available. Now it seems it won't happen until after the holiday. If sarcoidosis, no problem, if either of the other 2 options, this lost time scares me...if this is cancer, it's very agressive, very active. Do you think it's ok to wait or should I press harder for an earlier biopsy?

catdander
Reply To: Post BOT cancer PET questions, high SUV not at

Hello txdoula, I'm so sorry you and your husband are going through such difficult times. I am only the moderator/reception desk around here and can't answer your questions. I do understand a lot about lung cancer and can sympathize with the fear and anguish you must be going through.

I will contact our head and neck specialist for input to your questions.

It sounds like it could be none threatening. I certainly hope it is.

Good luck,
Janine

Dr West
Reply To: Post BOT cancer PET questions, high SUV not at

Yes, I've seen sarcoidosis appear with a wide range of very PET-avid lymph nodes. I wouldn't consider a week or two an extremely long delay, and I'd be very skeptical about the premise that it actually represents an aggressive cancer if he's feeling generally well. That makes it pretty darn unlikely that there's a progressing cancer rampaging, but also remaining asymptomatic...

-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

dr. weiss
Reply To: Post BOT cancer PET questions, high SUV not at

The best way to know what a spot is is to biopsy it. EBUS, a type of biopsy done through bronchoscopy (where you're put into happy land with drugs then a tube is gently placed down your breathing tube) can often get at hilar nodes.

Many cancer patients find the holidays to be a difficult time. As a cancer doc, I hate the holidays because they make things slow down for my patients. I share your frustration at the lack of full resources over the holidays.

txdoula
Reply To: Post BOT cancer PET questions, high SUV not at

Gentlemen, first, thank you very much for the information, it was reassuring. As an update, my husband was extremely fortunate enough to get a biopsy last Tuesday. The pulmonologist reported that preliminary results showed every single sample contained granulomas...so it appears to be sarcoidosis, final results next week. What a HUGE relief!!!

That said, this is one more thing to figure out. We haven't met with the ENT/Med Onc again yet, but last time we met, it seemed the suspected this could be a reaction to chemo, but they had never seen it before. Is developing sarcoidosis post chemo common? Does it usually go away or last forever? How do they monitor for distant mets if the PET is lit up from sarcoidosis, does this mean a biopsy every 3 months? Any information apprecited, although, we are in a much better place, much calmer, now that we have the biopsy results. Thank you, Ana

Dr West
Reply To: Post BOT cancer PET questions, high SUV not at

I'm glad to hear that there was another explanation for these findings other than cancer.

No, sarcoidosis isn't a well established reaction to chemo, but we've seen sarcoidosis in quite a few of our patients who have received prior chemotherapy. Just doing a bit of a literature search, I see that it has been described in case studies, but I'm sorry to say that it isn't well characterized enough to say what to expect in terms of longer term results. Some but not all of the patients I know of who were diagnosed with sarcoid received steroids to treat it, and then it was really changes that didn't fit a pattern of sarcoidosis that prompted any further workup.

-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