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8MM nodule right upper lung - getting very scared


taxmeless

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Hi, I am hoping for some insight and advice. 30 days ago I went for low dose smoker CT scan as I just turned 55 and smoked for 40 years (stupid me). The scan showed I had a 8mm solid nodule with minimal ground glass attenuation ( I guess from reading online that means part solid with  very little GGO and that's the worse kind of nodule?).  My GP followed that up with a PET CT 1 week later that came back with zero uptake anywhere. Reading online a 8mm nodule has a very bad prognostication with PET CT due to its limited size. What's more, my blood tests came back with elevated liver enzymes and elevated calcium levels. I read online that high levels of these on blood tests reflect a potential malignancy that is now sending cancer cells throughout my body. I was following the Fleisher guideline and waiting 90 days from my first cat scan to see if it maintained its size. Then head to a cancer center for wedge biopsy if it didnt clear.

 

Now I wonder if its too late. That I am doomed.  I am so scared. Please help me. Should I just go to Sloane or Moffitt now and get a  VAT wedge biopsy or wait? Am I headed for death?

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If you do not have a lung cancer oncologist I would suggest getting one. There are great resources on the LUNGevity website. It is really scary to get an lc dx. Many lc survivors are living longer now though due to the progress being made in research & treatments!
I would suggest attending the LUNGevity Hope Conference in April. There will be many LC survivors there who have amazing stories of survival!
It is a good place to hear what is happening in lung cancer treatment! As a Stage IV survivor, attending did much to alleviate my fear and increase hope. (I have been Stage IV for almost five years)


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Taxmeless, We understand your fear because we've all been there. My best advice for you in your situation is to try not to get ahead of what you know to be happening. In other words, things that can only be confirmed by biopsy or scan, and not everything you read online. The unknown and waiting can be the most difficult time, so try not to let mere possibilities make it even harder. It is correct that smaller nodules are below the resolution of PET, but the good news is probably that there was not visible uptake in any other parts of your body that would indicate metastatic disease. I have not heard that elevated calcium or liver enzymes are indicators that cancer cells have already entered your bloodstream. In fact, I was diagnosed with stage IV (metastatic) NSCLC adenocarcinoma over two years ago, and my levels have always been within normal ranges. Your next procedure should probably be a chest CT scan with contrast that is able to detect whether there are more nodules, even as small as 2-3 mm, in the same lobe, any of your other lung lobes or in any lymph nodes. Always remember going forward that each of us is different, and our sharing our experiences does not mean you will have the same findings or diagnosis.  I had two needle biopsies after the "standard" 90-day wait and see because my CT scan showed multiple solid nodules and ground glass opacities in both lungs and consolidation (that looked like infection). Both were positive. I am glad that the use of low dose CT scans for folks at risk for lung cancer are becoming more widely used and are both detecting cancers early and concluding some suspicious nodules to be benign. I am only guessing that your use of "wedge biopsy" means that someone has suggested that if indeed the 8 mm nodule turns out to be the only one you have and has increased in size to 9 mm, for example, that they take a small wedge of that lobe and then, of course, biopsy the nodule within it.  Depending where it is located, a thoracic surgeon (interventional radiologist or oncologist) may be able to do a needle biopsy. My largest right lung nodule was also only 8mm but was behind a rib and breast tissue, but they were able to get enough to conclude the tissue was the same as the left lung biopsy which was clearly adenocarcinoma. I'm not personally a fan of the wait and see, but you must be about half way through the 90-days by now. So, I would have your PCP schedule, minimally, a consultation with either a pulmonologist (I'd have skipped that myself, but hindsight is 20/20) or thoracic surgeon and a chest CT with IV contrast and proceed from there.  I never mean to overwhelm a "Newbie" who, by definition, is already sufficiently overwhelmed, but we do want to allay your fears and give you some hope. Always have hope. Please let us know how things are going.

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Taxmeless,

Welcome here. A potential lung cancer diagnosis is frightening -- I've been there.  Cindy gave excellent advice and I agree with her discussion of PET and blood chemistry limitations on pinpointing metastatic disease.

If it were me, I'd press for a biopsy.  I'm glad your GP is taking an interest in your diagnosis.  Tell your doctor you are bothered by the 90-day wait and see if you can get to a pathology diagnosis via an accelerated biopsy.  Your GP might consider a thoracic surgeon consultation and I'd let the surgeon make the needle biopsy -- VAT wedge call.  A pathology determination is required in any event because if you have metastatic disease, knowing the type of lung cancer is essential before a treatment plan can be designed.

That said, I'd take some comfort in your zero uptake from your PET - CT scan.  

Now, some thoughts on doom and gloom.  Any probable cancer diagnosis is not a cause for celebration but by your description, your symptoms constitute an early find.  The low dose CT did exactly what was intended: set the condition for an early diagnosis and a easier treatment path.  I trust you've stopped smoking.  I say that not to preach but because I've known people who've gone through treatment and continued to smoke.  Their side-effects experience from chemo and radiation were almost unbearable.  If you have a VAT resection, you'll likely have post surgical chemo and surgical recovery complicated by chemo and smoking become a bridge too far.

Again, from your description of CT results, if you have lung cancer you are likely to stage at I or II.  Many of us here have late stage diagnosis and are still here.  So, if we can live, so can you.

My GP took a very active role in my treatment and I'm happy to learn your's appears to be also engaged.  Use your GP to advocate for an accelerated pathology determination by either biopsy or VAT resection.  Then, we'll know what we are dealing with.  That is what I'd do.

Stay the course.

Tom

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Hi,

I also had a small nodule(mixed groundglass and solid) and a 90 day wait. Something was there, and VERY slow growing.  Then a PET scan in which nothing lit up. I understand that because PETs show metabolism, slow growing cancers sometimes don't register on them. Because of where mine was, a biopsy couldn't be done without taking it out, and a wedge resection wasn't feasible because of where it was in relation to the blood supply in the lung. So I had a right lower lobectomy by VATs. There was an adenocarcinoma  (1.5 cm.)that came out with clean margins. Mediastinal lymph nodes were taken out also and were negative. So it was stage 1a. I had a  fairly quick recovery from surgery, and I don't need any further treatment at this time, just regular CT surveillance to watch for possible recurrence.  

About your fear of doom and death: Of course you're scared- it's normal to be scared with a possible cancer diagnosis. You're facing a lot of uncertainties. But that's different than being doomed. My situation was similar to yours and I don't feel doomed at all. I'm optimistic about living a good life for many more years . We're all headed for death, whether we have cancer or not. I don't think Im headed there vey fast, and I think you can realistically be hopeful that you aren't either. 

I like Tom G's suggestion about a thoracic surgeon consultation. I was seeing both a pulmonologist and a thoracic surgeon and found it helpful in understanding what was going on in my lung.  

Hang in there!

 

Edited by BridgetO
Fixed a typo
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Rose, Cindy, Tom and Bridget, Thank you for your insight. My brother in law is my GP but he is a cardiologist. He works at a very small general hospital that specializes in cardiac care with limited cancer experience. I have an appointment with a Pulmonologist at Univ of Miami on the 28th on his reco.  (it took 3 weeks to schedule one). I also sent my CDS to a pulmonologist at Sloane and am awaiting am appointment date. The Thoracic  surgeon at Sloane wont see me until it reaches 1 centimeter or until the pulmonologist gives him a push I guess. I was thinking of calling Moffitt in the morning, since it is closer to home but prefer Sloane as it is labeled the best cancer hospital in America. I gave up the smokes and changed my diet to fruit, vegetables, fish, chicken, nuts, ginger root, green juices, lots of water. I exercise 2 hours a day now trying to get in shape. I am so scared. Thanks for the support

Edited by taxmeless
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Taxmeles,

The 28th is almost upon us. I am aware of the Florida wait times to see specialists. My daughter who lives in Orlando traveled to Johns Hopkins for her brain tumor surgery. 

Depending on the location of the nodule, the pumonologist might get a sample by using a bronchoscope. Glad you stopped smoking. Let us know how the consultation goes. 

Stay the course,

Tom

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I'm reading about your beautiful diet of nuts, berries and fish while stuffing my face with a Quarter Pounder w/Cheese. :oops:

The others have already provided excellent advice. I'm glad your visit with the pulmonologist is coming up on the 28th. The wait time tests my patience, but my oncologist always reminds me that the window of opportunity will not be lost between now and then. :) 

Despite the CT, I remain hopeful that your nodule is benign. It does need clinical evaluation, and I'm glad you're seeing this through. God forbid, the nodule needs obliteration, early detection is the key to kicking it in the butt.  You are so very brave to do this. You are not doomed. 

Finally, I hope you don't beat yourself up about your smoking past. Celebration of your non-smoking present sounds a lot more interesting. <3

Meloni

 

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  • 4 weeks later...

Meloni, your response was funny and very appreciated. Diet, exercise, sleep, and lack of stress is key to keeping disease away. I hope you join me in changing your diet . The difference in just 30 days for me was amazing. Eating from the earth without processing or chemicals and avoiding red meat will extend your life. Love....

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Taxmeless,

I have heeded your excellent advice and am working toward a better eating lifestyle. I can already tell when I stop for a quick burger, that my body doesn't really enjoy it. That, along with the exercise routine will hopefully assist my new round of meds I've just started this week! Thank you for caring. <3

I've been off the boards lately, so I'll poke around and look for an update from you. Hope all is well. 

Mel 

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  • 4 weeks later...

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