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LyndaT

No diagnosis yet

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Hi, 

So I'm guessing this is the group no one wants to have to join.

I went for a cardiac calcium scan and there were 2 incidental findings.  1.4cm nodule in my lower right lobe and a 2.9cm mediastinal lymph node lesion.  I am going for a PET scan on Wednesday and I am petrified, not of the test, but of the results.  I have been a 2 pack a day smoker since about 1974, ugh.  I really have no symptoms other than my regular smokers cough, which I do not think has gotten worse, and some shortness of breath with activity, which may be a little worse as of late.  The cardiologist, and my pulmonologist friend, seem pretty concerned about the lung nodule.  I am finding it hard to think of anything else now, and yes I have researched this like crazy on the internet.  I understand the downside of that, but I needed to do it anyway.  Knowing nothing would have been worse.  I have a really bad feeling about that 1.4cm nodule :(

Thanks for letting me rant, even before any diagnosis.

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Welcome and sorry. I am about 2 months into this journey and can totally appreciate your position. 

My advice....read thru all the posts and find people who have similar diagnosis and read their history.

This site WILL give you hope and make you feel better. A solid diagnostic and treatment plan WILL reduce your stress. Treatment for lung cancer has made a step change and the fact you may have caught it relatively early WILL improve your options and your quality of life.

But these are things you will find out as time goes by. Right now just focus on controlling your stress, educate your self on the disease, not the statistics and be a firm advocate for yourself.

Wishing you all the best. Where you are right now is the worst it will get IMO...and you WILL feel more in control as time goes by.

Peace

Tom

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Thanks Tom.

The only statistic I have seen that has bothered me is that anything over 1.2cm is 80% likely to be malignant.  I realize most of the other statistics are based on older treatments.  But the thought of this being lung cancer is just very stressful and thankfully I only have one more day until my test.  I have a nephew that had cancer and I do remember that the time before diagnosis and treatment plan was the most stressful. 

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Hello @LyndaT.  Tom has provided some great advice.  Tracking a lung nodule is stressful.   I wonder about the 80% number.  Where did you find that?  1.2 cm is still pretty small.  I’m glad you found us...and hope after tomorrow you don’t have to come back.  
 

Here is a good resource on nodules.  https://www.thoracic.org/patients/patient-resources/resources/lung-nodules-online.pdf

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https://www.brighamandwomens.org/lung-center/diseases-and-conditions/lung-nodules

Oh if that statistic is incorrect, I am thrilled.  I will be very happy to be wrong on this whole thing!!!

Thanks for the link.  I have seen that, and sadly, I believe I fall into the category of likely to be malignant.  Still smoke(although taking Chantix right now, better late than never I guess), my aunt had lung cancer and I'm 59, 3 out of 4 doesn't thrill me.  I realize I am just being negative now, but it's due to stress I would think.  

LOL I hope I don't have to come back too.  There are just some clubs you don't want to be in :( 

 

 

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Lynda, 

We have all been where you are.  At this point please try and do two things:

1. Stay off the internet.  Dr. Google uses out of date statistics that do not accurately reflect present rates on almost everything.

2.  Try not to get ahead of yourself.  The history you cite makes it likely that it could be a tumor, but not a fact.  Take it easy until you get a final diagnosis.  Then at that point, assuming it is a malignancy, you willl work with your doctor to understand the nature of the disease and a treatment plan.  Until you have real data all you will do to yourself is feel terrible and definitely "cathastrophize" all of your thinking (I had a PHD in this).  

Armed with a clear diagnosis you will ask questions of your doctor and you are most welcome here to ask any question you may have.  Whatever the diagnosis there will be someone here who also had that diagnosis and likely went through a treatment program similar or even identical to what your doctor would recommend.  So, you'll be able to get the benefit of people who will have made that journey before you.

I was in total fear of a diagnosis and of the surgery that was finally recommended, but the great folks here gave me a full roadmap to follow, calmed my fears and stuck with me pre and post operation.  We'll all be here for you.  Meanwhile, as Tom suggested, you can read some our stories under Introduce Yourself or Members Update.  You will likely be surprised by what you read and it may even help calm you down a bit more by removing fear of the future.

Last thing; please remember, it is said, "When you dwell on the future you become anxious and when you dwell on the past you become depressed.  Stay in the NOW, in this way you can control your reaction to what is happening around you."

We're glad you found us Lynda.  Be of good cheer this disease has had amazing progress made around its treatment and survivability.

Lou

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Thank you so much for your reply.  It was definitely positive and helpful.

I do not look at statistics online, I do however, read lots of medical reports and try not to read anything more than 3 years old as I know things keep changing.  I am very nervous but very happy the PET scan is on Wednesday so not much longer to feel like I am being tortured.  I will try to keep your advice in mind and live in the now :) 

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PET scans are done using a radioactive sugar substance.  It is given IM (very simple) and then you have to sit for a while (I had to sit in a dim room for 90 minutes) to let your body have a chance to absorb it (cancer cells seem to love sugar) and then a series of CT Scans are done and then read by the radiologist.  If certain areas show an SUV higher than 2.6 (SUV simply refers to a measure of luminescence) the doctors will look at that, along with other data to determine if the nodule is cancerous or not.  In my case the PET was inconclusive and the nodule was too small for a CT Guided Biopsy so I had to have an open biopsy (more on that later).

Lou

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To add to that. The PET/CT combo is different. They give you an IV dose of a radioactive tracer (D something) and you don't 1- have to starve 24 hours in advance and 2- drink anything nasty. Plus procedure is a bit faster.

This allow them to overlay the details of a CAT with the medobolic activity of the PET.

Only down side is the measurement of SUV pickup is not comparable to a normal PET. It is a better test for prepping treatment.

Will be thinking of you and wish you all the best.

Peace

Tom

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A better test for prepping treatment??? Do you think that means they are pretty sure it's cancer?  I think they believe it is cancer.

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Hi Lynda,

You’ve already met some pretty great people here, good friends to have in this situation, we’ve all been there.  
When looking to establish a diagnosis everyone has a PET/CT, brain MRI and a biopsy in a dizzying amount of time, then the hurry up and wait begins.  
Think of the PET/CT as a way of fast tracking the diagnosis of every questionable lung nodule.  
In the beginning the freak out meter is 110% for all of us.  When we think of lung cancer, what conjures up in our mind is the worst case scenario.  
I’m going to be straight with you, yes your doctors need to assess if the nodule is malignant.  Lung cancer can be treated today like any other chronic disease such as diabetes.  Many people don’t know this, there have been more treatment advances in the last five years than the previous five decades.  There’s a very sophisticated process that helps guide a personalized treatment plan.  People in this forum have been living with this disease for years and living well.  
 

It is our great hope and prayer for you that this is a false alarm.  Lou, Tom and Curt have given you some great advice.  Take this one test, one day at a time.  Break the day down by hour if need be.  You will get through this.  We’re here to say there are brighter days coming, in the meanwhile lean on us to help carry you through.  
Michelle

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2 hours ago, LyndaT said:

A better test for prepping treatment??? Do you think that means they are pretty sure it's cancer?  I think they believe it is cancer.

So sorry....I didnt mean to imply that. I meant to imply that it makes more sense to kill two birds with one stone. The PET/CT scan will cover both outcomes and potentially save a step depending on the result.

Having this test is a GOOD thing...not bad. Your in my thoughts

Peace

Tom

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Just wanted to share Lung Cancer 101 with you to give you as much information as possible. https://lungevity.org/for-patients-caregivers/lung-cancer-101

Please keep us updated on your test, thinking of you!

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Had the test and got the results from my primary over the phone, but going to thoracic specialist on Friday.

Lower right 1.4cm nodule - moderate uptake 3.7

This one is new - Right axillary node - mild uptake

The mediastinal node is a cyst.

Dr. recommended re scan in 3 months.  Nope, not waiting, going to see specialist Friday.

What do you make of this?  Should I be concerned about 3.7?

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I  think you should be concerned. It doesn't mean it's cancer, but it's suspicious. I think you're wise not to wait 3 months. When you say "thoracic specialist" is this a pulmonologist or a thoracic surgeon? Was the doctor you were seeing your primary care doctor?  The specialist will probably be able to give you more information based on the appearance of the nodules together with the PET results.  It's good you're getting in to see him/her soon, not so much because waiting a little would cause harm, but for your peace of mind. I look forward to hearing from you again.

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He is a thoracic surgeon.  Oh waiting 3 months on the advice of my internist (that I met once) was not going to happen.  I didn't even have an internist until I had to go for some vaccinations last week.  He saw the original CT report in my records and ordered the PET because my cardiologist was out sick.  The internist said nothing about the appearance of the nodules, which did concern me.  From what I am seeing 3.7 seems to be the upper range of inconclusive.  The recommendation on the report was re scan 3 months for lung, and biopsy right axillary node, which he did not seem to think was related????

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Hi LyndaT ... I feel for you and wish you weren't going through this. I have been hesitant to give my specific thoughts to others because they may prefer not being inundated with info. Im also a newbie. You had already indicated you've searched the internet quite a bit. I prefer lots of information as early as possible to be able to ask questions as soon as possible. I do know that you have to be careful with what you are reading on the internet. I think you should be concerned because the PET scan uptake is > 2.5; however, the node is relatively small which may be great for many reasons. Many small nodes are benign and we are all hoping that is the case for you. If it is cancer then a small node is good. My wife's pulmonologist had the best handle on what was going and maybe we just got lucky with him. Almost immediately he was directing what should happen next with my wife (testing, etc.). My wife and I try to think positive and deal with results as they come.

 

Steve

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Lynda,

Here is some insight into PET scan results and SUV uptakes.

An SUV of 3.7 is on the margin of concern. My best recommendation is that you consult with a medical oncologist and or a pulmonologist and solicit their recommendations about next steps.

Stay the course.

Tom

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So now that I am totally freaked out by these results.....I have an appointment with a pulmonologist this afternoon and a thoracic surgeon tomorrow morning.  I need many opinions before I do anything, including wait 3 months and be rescanned.  If everyone agrees on waiting, I will do that, if they don't all agree, I will have to make a decision based on what I hear.  

I thank you all for your feedback so far, it has certainly been both helpful and comforting.

Lynda

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Best of luck Lynda.  Since you have asked for opinions I have one.

Request that they do a full resection of the tumor and test it during the procedure. If it is not cancerous then they will do a resection and take a minimum of good lung tissue.  If it is cancerous they would most likely continue with a full lobectomy.

IMO....assuming I didnt miss something......this is the best and fastest route to "cure". Doing a biopsy is far from full proof, often enough give both false positives and negatives or "undetermined". Doing it as I describe may be more stress but would be the fastest.

FYI.....my nodule of the same size from 2005 came back as not cancerous via a PET scan. Just got a 4.9cm Large cell Endocrine tumor removed. Stage III at the moment and getting MRI tomorrow. I so wish I had had it taken out 15 years ago. Instead we watched it a few years and then collectively forgot it. Damn

Peace

Tom

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