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Shoosy1

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Hello everyone

I am a new member and I have to thank my darling wife for finding this site. She is my rock!!! Since October of 2016 I have been backwards and forwards to the hospital with recurring abdominal pains, bloating, nausea and vomiting. I have lost count of the MRI's, CAT scans and x-rays that I have been through. The majority of ER docs have gone down the road of diverticulosis and have viewed the scans with concentration on the GI track. They keep me in hospital for a couple of days, feed me drugs via IV then send me home. A few days or weeks later I'm back again with the same symptoms!! Nobody seemed to know exactly what was going on. Early August I was back again and was lucky enough to have a gastroenterologist on duty in the ER. He ordered yet another MRI, endoscopy, colonoscopy and barium swallow. Apart from removing a couple of polyps during colonoscopy he found nothing! Mid August I was back again and yet another MRI. I thank the good Lord that this particular ER doc did not just concentrate on the GI track but went above and beyond to study the whole picture. Then it came, "I'm sorry to tell you Sir, but we've found a mass on your left lung." I went cold and couldn't think of a thing to say. All I could think of was how the heck do I break this to my dearest wife? Ultimately there was only one way, direct and straightforward and draw our battle plans!

The next step was a needle guided biopsy. I was informed that the results would be back in 48 hours. Two days later I was informed that the local path lab could not be certain and had sent the specimen to a more specialized lab and this would take a further 5 days! I guess I don't have to tell the majority of you guys that the wait is horrendous! Eventually the report came back and I took it to my Primary Doc for translation. After all the waiting I braced myself for the worst but no, here we go again!!! It turns out that the lab did not receive enough tissue for complete analysis!!!!!! But hey, I am blessed with having an absolutely wonderful primary and he immediately referred me to an oncologist and a PET scan. I waited a week for the PET scan which was 2 days ago and now have to wait until Monday for the oncologist appointment. My wife is a little nervous that this doc is not board certified but at least we are hoping for some definitive answers. If it turns out that we get the worst news then my wife insists that we find a board certified oncologist.  Any thoughts on this???????

Thanks in advance for listening and we'll post developments as they occur.

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Hi, Shoosy and welcome. I agree the waiting is really hard.  At least the ball is rolling now. My personal view is that a board-certified oncologist is a good idea. Or, for the purposes of diagnosis, a board-certified pulmonologist.  Then, if you should need treatment,  probably other board-certified specialists. On the other hand, a non-board-certified oncologist might be OK. You could ask your primary why he referred you to this particular oncologist and not a board-certified one.  Are you in an area with limited medical resources?  If you're feeling uncertain about the testing and diagnoses you're getting. and if your insurance and other circumstances permit, you could consider a Comprehensive Cancer Center, at least for a  second opinion. You can find a listing of these Centers here:  https://www.cancer.gov/research/nci-role/cancer-centers

I'm sure other forum members will chime in with opinions about this.  You'll find a lot of information and a lot of hope here. Good luck to you and your wife.

Bridget O.

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Welcome Shoosy!

I was hoping we'd hear from you, in person.....

Now I understand your wife's anxiety.  There is no definitive diagnosis yet so let's keep hoping this is a exercise in anxiety tolerance.

In my unfortunate years of lung cancer experience, I've never researched physician board certification meaning and implication.  You've likely done a little research.  In case you haven't, here is a summary I found.  It is a relatively new thing in the medicine world starting about the about the late 80s. With that late start, I'd venture a lot of seasoned physicians already well established in practice were likely grandfathered into certification.  The process seems like a professional engineering examination that I am very familiar with but has a retest every 6 to 10 years depending on speciality.  As for your oncologist, perhaps he or she has not taken the examination yet.  I'm sure your oncologist is a licensed doctor else your medical insurance would not pay for the consultation.

Regardless of certification, the oncologist will be reading and translating a radiologist report of your PET scan.  So it is doctor explaining doctor speak to those with scanziety on loan from the Lord.  I'm not sure board certification is necessary for a PET interpretation.  Bridget's idea of a Comprehensive Cancer Center is a good one.  I'll add ensuring the oncologist you choose is a good listener and a good explainer, regardless of certification.  

Just some thoughts on PET scans to help you manage expectations.  The first PET scan, may be inconclusive. Why?  Well the test measures cell uptake of irradiated glucose after fasting in concert with the principle that metastatic cells demand from 5-to-8-to-10 times more fuel than normal cells.  Everyone's metabolic rate is different, and the radiologist will not have a metabolic baseline that is established with your first PET. So if a conclusive uptake is not seen, then scanziety will reign.  Even if metastatic disease is discovered, a PET scan will not reveal your type of lung cancer.  Indeed it may be another type of cancer lodged in your lung.  Perhaps something the GI tests did not reveal but migrating to the lung. Typing the mass is essential before a treatment plan can be developed and typing requires a physical sample (generally tissue). 

I sincerely hope your PET reveals you to be in NED (no evidence of disease) territory.

Stay the course.

Tom

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