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New here, waiting for answers and scared


Sheryl E

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Hi, 

I went in for a pre-op and had a CT of my heart done for heart ablation surgery.  The surgeon called me the morning  of my surgery and said my heart was beautiful but they found a nodule on my lung 10 mm that looked very suspicious for cancer.  He then sent me for a PET scan, called me the day after and said the PET scan shows the nodule still looking suspicious but my scan was clean otherwise.  I now have an appointment for pulmonolgy on July 15th.  I am so terrified, and so grateful for you all on here.  

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Hi Sheryl, 

You are not alone,  we have seen your experience quite often and understand how terrifying the situation is.  I recently found a good resource on lung nodule management that I think you might find useful in advance of the pulmonology appointment.  It's about an hour, there are some sound issues in the beginning but they improve.    Facts over fear, knowledge is power. 

 

 

 

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Sheryl,

We are glad you found us. "Very suspicious for cancer" is a serious descriptor and looking suspicious after a PET is no better. As for terrified, we understand! We've all been there.

So, here is how I would proceed.  I'd pray the 10mm nodule is indeed nothing to be concerned about. Here is my go to resource that explains pulmonary nodules and why they form. As you can see, they come in many types and sizes and most are not cancer. As for the PET, if you had more specific information about your PET, I might be able to explain "suspicious". Here is a blog I wrote some time ago that helps folks understand what a PET scan is, what is measured, and what standard uptake values (SUV) are of concern. It is a good idea to get actual copies of all scan and laboratory reports and keep them on file.

You might use the time before your 15 July consultation to read into lung cancer and here is the best resource around. I would also recommend asking a family member or a close friend to attend your consultation and even ask the doctor if you could record the session. The vocabulary of our disease is daunting and it is helpful to have a second set of ears or a resource to answer the inevitable what was said question that seems to occur on the car ride home. Know also that a biopsy is the only way a lung cancer diagnosis can be confirmed and that is unlikely to occur at your forthcoming pulmonology consultation. 

I do pray your pulmonology consultation results in a finding of no evidence of disease (NED). 

Stay the course.

Tom

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Thank you so much for replying.  Since it was the cardiologist that called, he didn't give me a lot of detail.  He just seemed very happy that the scan was "clean" other than the one nodule.  

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 iHi Sheryl and welcome here.  Terrified is a completely normal reaction to being told you may have cancer. Now you're in waiting mode, which can be very hard. Tom and Michelle have given you some really good information.  I only want to add that I was in a similar situation with a nodule discovered during a scan for something else. It was about the same size as yours. Long story short, It turned out to be a non-small-cell lung cancer, stage 1a. I had my lower right lobe removed by VATs (video assisted thoracic surgery) and I didn't need further treatment. Now, over three years later, I still have no evidence of disease (NED). I consider myself one of the "lucky" ones--if there is such a thing as lucky ones among people with lung cancer. Most  lung cancers don't have symptoms until they are advanced and more challenging to treat. These early small ones are often sucessfully treated more easily.  

Hang in there. I hope your nodule turns out to be benign. If not, I hope it's as easy to fix as mine was. Let us know what questions you may have and how we can support you.

Bridget O

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Sheryl,

     Most of us have all been where you are today and we all understand the fear of the uncertainty and the unknown.  I also remember how overwhelming that feeling can be.    Please know it sounds like you are in good hands and they are trying to move this process along.     The Diagnostic process is never nearly as "fast" as we would like and the wait for "results" can be hard and cause a lot of upset and anxiety.

    First, try to think "positive" and know that lung nodules can often be benign.   I know they may suspect cancer, but for now and until you  have that nodule biopsied, you just do not know.   Secondly, if worst care scenario it may be cancerous it's quite small and that's also a positive thing because it may indicate it was found early and early detection is always the best thing in any type of cancer.  It's also good new to know that your Pet Scan did not show any other suspicious areas.    

   You've also come to a wonderful group where you'll find lots of support for many of us who are living with Lung Cancer.   I'm now five years in with Stage IV (Non Small Cell Lung Cancer) an and I'm living life with stable cancer. a

   The entire LUNGevity team is amazing and they will be there to help guide you as you go through this. I WISH I had been as resourceful as you are know and had found LUNGevity early on in  my cancer journey, for me it came later, but I'm been very thankful and grateful to have found such a wonderful group -- they offer so much and have so many other resources, you can reach out too if needed.  Tom shared some wonderful links and I hope in reading those it will give you some more knowledge and possible some peace of mind.

   We will be thinking of you and hope you'll know more when you meet with the Pulmonary MD.   In the meantime, try not to take "one moment at a time" and feel free to pop in with more questions or just to "chat"!

   Take care,

    Lisa

   

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Sheryl,

Welcome to forum.  You've already received some great information and counsel from others, but I just wanted to welcome you and let you know that you are not alone.  We've all felt that fear and Michelle is correct..."facts over fear" is the way to go.  Keep us updated as you have your appointments.  

Lou

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Thank you for all for your sweet messages.  I look on here and read your stories and I really feel like you guys are already family.  Your stories make me cry, but also gives me hope.  I pray that we all find peace everyday as this is such a chaotic time and that we stay strong.  Thank you all again for the positive thoughts.  July 15th is pulmo appointment.  

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