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New here, not yet diagnosed but confused/ concerned


hollylee34

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Hi everyone. I’m a 44 year old female, an athlete and generally have considered myself to be healthy. I was never a smoker per se but did bum cigarettes from friends at bars when I was in college and for a few years after. A week ago I ended up in the ER for excruciating back, chest and shoulder pain that came on after a workout. In the ER they did a work up which included a CT. The CT showed trace pleural effusion in my left lung and around my heart, and a lump measuring 1.5 x 2.6 in my lingula next to the pericardium. The report described it as a lipoma or hamartoma and in fact the ER doc didn’t even mention it to me at all. I followed up with a pulmonologist a few days later, who said it probably wasn’t a big deal but he would speak to some colleagues about it. Fast forward one hour later, he has me booked with a thoracic surgeon to discuss VATS resection. I’m so confused and concerned— if this truly looked benign, how did we jump from no big deal to a resection surgery? He claims he still thinks it’s no big deal, but I feel like he’s trying not to freak me out. How concerned should I be? I hope this post doesn’t offend anyone as it’s about a likely benign lump, but I am scared he thinks it’s cancer and I just don’t feel like I know who to turn to with my questions. The doctor has offered all the assurances he can but it still doesn’t make sense. 

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Hi, Holly, and welcome. Apparently there is something he (or one of his colleagues) found suspicious about the way the CT looked. For instance, in my case I had a lung nodule that had grown a bit and had developed a distinctly spiculated appearance. At that point I was referred to a surgeon for a lobectomy. Due to the small size and the location, it was not possible to biopsy it, and my very experienced surgeon said it was suspicious enough to him that even with a negative biopsy he'd want to remove it. It did turn out to be cancer--very early stage.

You might want to ask your surgeon if it's possible to do a PET-CT to help narrow down the possibilities. That test isn't foolproof, but typically a cancerous area will "light up" on a PET scan.

Nobody wants to have to deal with lung cancer and hopefully your issue will turn out to be nothing. OTOH, if you do need surgery, it's not as awful as it sounds--my C-section hurt more, and longer. And I noticed no significant change in my breathing after my recovery.

 

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Hi Holly: Your best bet is to ask for a biopsy and a biomarker test. First you need to know (god forbid) that you have cancer and second it is important to know what type of cancer and if you have mutation. Also  seeking a second opinion from an oncologist is a good way to go. Let's hope it turns out to be not a big deal but you deserve to know more. I wish you the best. 

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Thank you both for the welcome and the prompt reply. The puzzling thing is, I asked my pulmonologist if any of his colleagues had seen any suspicion and he denied it. Instead, his answer had more to do with my age and health and “removing it not to worry about it” vs monitoring and more frequent radiation. I just don’t it understand though, it seems a big and unnecessary leap if it’s truly low risk, especially during a pandemic. I suppose I will know more next week when I speak to the surgeon, and I will ask about an oncologist too.

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Just an observation, but it sounds to me as if this pulmonologist is not very experienced with lung cancer (that, or he's a VERY poor communicator). Low-dose CT scans, of the type used to monitor lung nodules, isn't a great risk in terms of following their progression. People who are simply monitoring their nodules commonly get them annually; those who are diagnosed and being followed for recurrences get them every 1.5-6 months or so.

My surgeon was a surgical oncologist, which meant he was not only an expert surgeon but an expert in lung cancer.

I'd check out the credentials of whoever you are going to see, and if they are not experienced with lung cancer, try to get evaluated at a cancer center or a large hospital with a significant oncology practice.

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Either is a possibility :) I do know the thoracic surgeon I am speaking with is the medical director of the lung cancer research center at our hospital. So that’s positive at least.  

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Hi Hollylee and welcome! I'm sorry to hear you have this unknown "thing" in your lingula. If it were me, I'd want to know whether it could be biopsied short of surgery, by bronchoscope or needle. Many nodules can, some, like mine and LexieCat's can't be, dut to location.  I think LexieCat is right about seeing an expert (or two)  before agreeing to surgery, especially without a biopsy.

Bridget O

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Hi HollyLee, 

Welcome from me as well.  You've already had some great advice.  From what I can see, I think you need to trust your instincts and have an evaluation from an expert prior to surgery.  Gary's advice about biomarker testing is spot on.  The diagnostic work out can take anywhere from 4-6 weeks which is critical for a successful treatment plan. Keep us posted and we'll do our best to support you through the days and weeks ahead. 

Michelle 

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Hollylee,

I'm thinking your doctors are considering your effusion in combination with the nodule's location and size as a reason to suspect lung cancer. It is a small effusion but it is proximate to your lingua area. Effusions can result from large nodules, depending on the nodule's location. I'm not at all surprised that your ER doctor didn't mention it. He or she identified the problem and put you on the specialist track. It is often hard for ER physicians to tell someone about the possibility of lung cancer.

Nevertheless, I don't see a reason to rush to surgery. Your nodule is large enough to generate a reliable indication on a PET scan and like Lexie, I believe I'd press for that test before considering a resection. Your insurance might push back against the PET at this juncture but economically, a PET is far less expense than a surgical resection. So, I'd use that explanation if the insurance people get stubborn. OBTW, here is information about a PET/CT and why it is an effective diagnostic tool for metastatic cancer.

No offense taken at all. We all sincerely hope this turns out to be a no big deal find.

One more thing to keep in mind, the old adage of "see a surgeon and get a surgical solution" is grounded in truth. I think you have a good plan for seeing a medical oncologist, and I would try and find one you are comfortable with so the med onc can "quarterback" your medical team.

Stay the course.

Tom

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  • 2 weeks later...

Hi again everyone. Just a quick update. I have decided to move forward with removing the nodule, and the VATS is scheduled for tomorrow. According to the surgeon, removal  is protocol for a lump that was not there in prior imaging. (It turns out they found an old chest CT of mine from 12 years ago which did not show the nodule). That is why they offered resection now, although I also did have the option to do a needle biopsy. I chose this path so they could also better see the parietal pleura just in case it's still inflamed (although there's no longer any pain). All the above said, he is not concerned about the nodule's appearance, so we will see what transpires. As the lung cancer director of our major hospital here in the city, I feel I am in good hands and will hope for good news too. It should be a couple weeks until full biopsy results are available. 

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Holly: Good to know that you have a good plan in place. I hope your procedure is executed to perfection and wish you s speedy recovery. You are probably aware but make sure to also get the biomarker test done. I wish you the best.

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Hollylee34

Okay...of course we'll support your decision.  If you have never had this type of surgery before there are some tips and tricks that can help you get through it well and you can find them here.  Good luck with your surgery and please keep us updated.

Lou

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10 minutes ago, GaryG said:

Holly: Good to know that you have a good plan in place. I hope your procedure is executed to perfection and wish you s speedy recovery. You are probably aware but make sure to also get the biomarker test done. I wish you the best.

Thanks Gary! Yes, this seems like a key thing to ask about. I will request this now in the event the lump comes back as malignant. (I assume no point if benign, as the surgeon is expecting, but I plan to raise it anyway to be thorough.)

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Just a note--if the pathology exam shows no cancer, there's probably no need for a biomarker test. We'll keep our fingers crossed this turns out to be nothing. The surgery should be pretty easy--just make sure you do your breathing exercises and get up and around as soon as you can. All those things will help you with a speedy recovery.

 

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I’m in recovery and it’s mostly going smoothly. I’ll be wearing a mini chest pump for a few days but it’s fine. Pathology is back early as well and it was a strange but benign finding of “infarcted fat”. I want to thank everyone for all your great advice, including the surgical recovery tips, and wish each of you the best on your cancer survivor journeys. ❤️❤️❤️ 

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What wonderful news!! I'm sorry you had to have surgery for non-cancer, but no cancer is ALWAYS good news! You have the right attitude--don't ever second-guess your decision.

Have a joyous holiday--you really have something to celebrate!

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1 hour ago, BridgetO said:

Not-cancer is a great diagnosis! But what the heck is "infarcted fat"?

Bridget O

Great question! Apparently it’s some sort of inflammatory reaction that results in a lipoma which necrotizes. It can hurt a lot, and I think it explains the chest pain I’d been intermittently having. My surgeon hadn’t seen it in a lung context before but it happens in the abdomen, on the gallbladder and other such places. So weird. 

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