taxmeless

Sorry Mally about your news. Basically you have your type of cancer and stage. Try to enjoy each day and stay the course.

Ok, against all odds my ebus on the PET SUv Max 4, 1,3 cm hilar R lymph nodes came back negative (Thoracic surgeon was nearly certain I was going to be positive and stage 2a or worse). That followed my ct that showed my SPN in lung declining in size from 7.2mm to 6mm in 45 days on its own (in volume terms that is a significant 42% deciline).. But I know every time I think I am ok, some bad report comes my way so I am still fearful. Will follow with another CT in 45 days.  In the interim, I still feel like my ride side is sore from my neck to my lung and cant help but be reminded of my problem each day. Draining on me. We watch and wait. But I will take that over confirmed cancer any day..

Ok, against all odds my ebus on the PET SUv Max 4, 1,3 cm hilar R lymph nodes came back negative (Thoracic surgeon was nearly certain I was going to be positive and stage 2a or worse). That followed my ct that showed my SPN in lung declining in size from 7.2mm to 6mm in 45 days on its own (in volume terms that is a significant 42% deciline).. But I know every time I think I am ok, some bad report comes my way so I am still fearful. Will follow with another CT in 45 days.  In the interim, I still feel like my ride side is sore from my neck to my lung and cant help but be reminded of my problem each day. Draining on me. We watch and wait. But I will take that over confirmed cancer any day..

Ok, against all odds my ebus on the PET SUv Max 4, 1,3 cm hilar R lymph nodes came back negative (Thoracic surgeon was nearly certain I was going to be positive and stage 2a or worse). That followed my ct that showed my SPN in lung declining in size from 7.2mm to 6mm in 45 days on its own (in volume terms that is a significant 42% deciline).. But I know every time I think I am ok, some bad report comes my way so I am still fearful. Will follow with another CT in 45 days.  In the interim, I still feel like my ride side is sore from my neck to my lung and cant help but be reminded of my problem each day. Draining on me. We watch and wait. But I will take that over confirmed cancer any day..

Ok, against all odds my ebus on the PET SUv Max 4, 1,3 cm hilar R lymph nodes came back negative (Thoracic surgeon was nearly certain I was going to be positive and stage 2a or worse). That followed my ct that showed my SPN in lung declining in size from 7.2mm to 6mm in 45 days on its own (in volume terms that is a significant 42% deciline).. But I know every time I think I am ok, some bad report comes my way so I am still fearful. Will follow with another CT in 45 days.  In the interim, I still feel like my ride side is sore from my neck to my lung and cant help but be reminded of my problem each day. Draining on me. We watch and wait. But I will take that over confirmed cancer any day..

Dear Mommy's girl,
 
Sorry for your mom's illness. Here is a link on reviews that may cheer you up.
https://www.drugs.com/comments/erlotinib/tarceva.html

Suzanne
Sry I didn't see this post sooner. For some reason I don't always get notifications on my phone even for people I'm following like you. I certainly do know about SBRT for stage IV lung cancer. I just had my second SBRT treatment yesterday. And I'm thrilled to have the opportunity to have this treatment. From all I've read this has better outcomes than either chemo alone or chemo/radiation concurrently. I'm scheduled for 5 total treatments. So 3 more to go and so far I've had no troublesome side effects. I have 1 nodule in my left lung and 2 in my right lung. They are treating all 3 each session. Had standard radiation for breast cancer last year. The difference as far as the experience goes is that standard radiation was 5 days a week for 6 1/2 weeks and the sessions themselves only lasted a couple of minutes each time. With the SBRT I only go twice a week for 5 total sessions, but they are much longer. Took about an hour and forty five minutes for the first one because they were still working on lining up perfectly. Yesterday took an hour or so. The only difficulty is having to lay absolutely still with my arms over my head the entire time. But no big deal. It's not like I'm in terrible pain or anything. And, in my opinion and also that of my Medical Oncologist, this is my best chance of good results long term. I've written all about the process of getting to finally have this treatment and how it's going in other places on here. Let us know what you decide.
Judy M

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OK, my last day at Mayo went much better. The doctor ordered a CT scan with contrast a day before the planned biopsy procedure for the Hilar lymph node. It showed that my 7.2MM  (The miami beach hospital radiologist mislabeled the nodule 8MM twice and missed the uptake on the hilar lymph node on pet scan and in my opinion should be fired for incomptence, thankfully Mayo Clinic is a world class hospital and identified it all properly) nodule had shrunk to 6mm since my 1st scan 45 days earlier.  What's more the ground glass attenuation surrounding the nodule had largely disappeared. He reassured me that the 4 uptake on the hilar nodule is most like an infection. A study done in Japan showed cases like mine with a subcentimeter nodule, with a uptake of 4 (mean) in the hilar nodule for stage 1  cancer diagnosed patients proved to be benign infections in over 80% of the cases.  So even if the shrinking nodule is cancerous it would not likely preclude me from surgery once we confirm the lymph node to be benign and that would likely happen when tested. But considering the shrinking nodule, he suggested we wait 90 days and retake the ct scan to determine if it continues to shrink and therefore cancer would be further unlikely. So with a little more good news, I may be on these boards for moral support vs being a paid member of the society of hard knocks.

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....

My prayers are with you today. I hope your surgery was a complete success and your recovery is relatively painless. May G-D look after you and your family.

Mally, sorry you had the unfortunate experience you are going through. My prayers are that your surgery and treatment will eliminate any future problems. Thanks for the support and response and wish you all the best.

Im new to this and dont understand any of the radiology reports or shrinking nodes etc but some on here will know exactly what these things mean so hang in there taxmeless and im sure you will get some sound advice ...my nodule size was stable for 2 yrs while being scanned for surveillance of a different cancer from 5 yrs ago and it had grown by 1.7 mm this time so then biopsy and pet scan followed and its a nsclc adenocarcinoma measuring 13mm which has been surgically removed along with a smaller nodule and now chemo so i know the fear and sadness of living with this monster called cancer but i like to think im living with cancer and not dying from cancer and that keeps me in a much better frame of mind so hugs to you and hang in there it may not be as bad as you are dreading .

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OK, I have posted before about having a low dose CT scan on 2/15 showing a 7.2mm solid nodule with GG attenuation in my RUL peripheral.  Followed by a PET that showed  MILD 1.5 SUV MAX uptake on nodule and a HIGH 4 uptake SUV MAX on my right lung Hilar lymph nodes . (The radiologist in Miami  Beach had it incorrectly labeled a 8mm nodule, and failed to find the Hilar uptake in his report and the resident and radiologist at the Mayo Clinic in Rochester upon review updated the information correctly).  While at Mayo on 3/28 I did a 2nd CT scan with and without contrast and the 7.2mm solid portion nodule reduced in size to 6MM and the GG attenuation largely disappeared. In volume terms that is a 42% reduction in 41 days plus the GG. So I went from despair about learning my lymph nodes were PET positive to relief my nodule was becoming much smaller.  I departed Mayo feeling like it was infectious or a reactionary nodule and I didn't have lung cancer.  I am returning on June 23rd for another scan to determine the progress.
My concern is that reading online it is reported that 20% of lung cancers have shown a decline in size before growing and cancer diagnosis. When I look at studies like the Nelson study, that exceeds the percentage of nodules that show decline in general. So now I feel it has no impact on my potential diagnosis. Any insights?  Does anybody has any research to support that a reduction in nodule size is a good thing and not insignificant? Please help me feeling sad now.
 

OK, my last day at Mayo went much better. The doctor ordered a CT scan with contrast a day before the planned biopsy procedure for the Hilar lymph node. It showed that my 7.2MM  (The miami beach hospital radiologist mislabeled the nodule 8MM twice and missed the uptake on the hilar lymph node on pet scan and in my opinion should be fired for incomptence, thankfully Mayo Clinic is a world class hospital and identified it all properly) nodule had shrunk to 6mm since my 1st scan 45 days earlier.  What's more the ground glass attenuation surrounding the nodule had largely disappeared. He reassured me that the 4 uptake on the hilar nodule is most like an infection. A study done in Japan showed cases like mine with a subcentimeter nodule, with a uptake of 4 (mean) in the hilar nodule for stage 1  cancer diagnosed patients proved to be benign infections in over 80% of the cases.  So even if the shrinking nodule is cancerous it would not likely preclude me from surgery once we confirm the lymph node to be benign and that would likely happen when tested. But considering the shrinking nodule, he suggested we wait 90 days and retake the ct scan to determine if it continues to shrink and therefore cancer would be further unlikely. So with a little more good news, I may be on these boards for moral support vs being a paid member of the society of hard knocks.

Taxmeless (I love that name BTW!),
You've got a lot on your mind with a biopsy tomorrow, so I'll be brief.  Stage IIIA is very treatable and survivable.  I was diagnosed Stage IIIB 13 years ago.  If Stage IIIA, you might have a favorable surgery situation.  You might be a candidate for CyberKnife surgery in two locations. Or a combination of surgery and CyberKnife. So nothing is off the table treatment wise, in my opinion.  Relax.  Try and get some rest.  We'll know more tomorrow afternoon.
Stay the course.
Tom

I posted before about a 8mm nodule found  by lung screen ct. Then had a petct that showed only minimal uptake  on the nodule without any furher findings as per the radiologist at Mount Sinai in Miami Beach. Told to wait 90 days and retake the CT scan. Feeling nervous I consulted with a pulmonologist and flew out to Mayo Clinic in Rochester mn based on my GP recommendation.   They immediately told me the petCT showed an uptake in my right 2 hilari lymph nodes with highest being 4 uptake and the radiologist completEly missed it back in Miami . Heading for a bronchial biopsy of the lymph node tomorrow morning. Feeling dejected to say the least. Very unusual for a 8mm nodule to infect the lymph node. Feeling sunk. Any inight would be appreciated. Also what can I expect going forward with stage 3a (at bestl )lung cancer? Thanks 

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

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

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.

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

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!