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Scared, Frustrated with not being able to make dr appt. need advice

Posted by dgulovsen @dgulovsen, Sep 13 3:35pm

I was diagnosed by accident with two ground glass lung nodules both size 5mm. I just had a lung CT scan and in 8 weeks one nodule is now 7mm and has a semisolid center of 2mm. I am really scared. I haven't heard anything from my Pulmonologist. I don't have an appt until Oct. Dr. Kyle Hogarth of Chicago and renown Pulmonologist says that an increase in nodule size plus it becoming solid is a reason to get in immediately for a discussion on how to proceed. I know he does bronchoscopies and I would like to get one. I live in CT so Yale is nearby. I tried calling to make an appointment with their lung nodule center, but I only get voicemail. It takes days for them to return the call and then they are just an answering service that tries to get ahold of the center. So far I have heard nothing back. Does my pulmonologist have to call? I'm at a loss and feel like I am totally on my own. Does anyone know how this all works with scheduling?

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dgulovsen | @dgulovsen | Sep 17 9:16pm
In reply to @cmcguire10 "Hi Thank you. I had a segmentectomy of Upper left lung. I am fine now. I..." + (show)
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Hi Thank you. I had a segmentectomy of Upper left lung. I am fine now. I am not disabled at all from the surgery or otherwise, Thank Jesus!
I do still get a nerve pain where my bra band rides on my incisions, but nothing I can’t tolerate or need any kind of pain reliever for. I was walking in the hospital as soon as they would let me out of the bed. It’s SO IMPORTANT to walk as much as you can. I can walk 5 mikes or more a day I can even jog (not interested in that really but I have done it) I go up and down the stair case in my house at least 6 times a day and I garden, bike ride, etc. After I got home from the hospital I was a little tired and by doctor’s orders not to lift anything heavier than a gallon of milk for a couple weeks. (I also had breast implants removed during the same surgery so I was under the knife for about 5 hours). I am 61 now and I feel great. I hope this helps. I know the before is scary and not having a plan going yet, but during this time, if at all possible, walk as much as you can. Do slow stretching, breathing exercises, etc. If you do that beforehand it will help in your healing journey afterward. It will be habit by then and easier to get back to.🙏❤️🙏❤️🙏🙏🙏

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Thank you. I am very active but should walk more. I build all day (home renovator) So I never sit down. I do know a little about increasing lung size from a scoliosis PT. She showed me how to increase all the tiny muscles in the rib cage to make more room for lung expansion. It is tough not knowing anything. Friday I hope to have some sort of plan to move forward.

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dgulovsen | @dgulovsen | Sep 17 9:21pm
In reply to @lls8000 "Oh @dgulovsen, Your frustration comes through in your writing, and I feel for you. Not knowing..." + (show)
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Oh @dgulovsen, Your frustration comes through in your writing, and I feel for you. Not knowing and not getting answers to our questions is so hard. I would recommend writing out your questions, so you don't forget anything during the appointment, and sometimes, making a list like that can help to not go over and over the list in our heads. Once it's on paper or in the notes app on my phone, it can stop swirling in around my brain. It's great that the office was able to move up the pulmonology appointment. Do they offer a waitlist in case there is a cancellation? Each step in the diagnosis process takes time. My lung cancer diagnosis took 2 months from my first abnormal x-ray to my first treatment, and I was symptomatic. Hoping that you are able to get the appointments and the referral that you're seeking. Hugs.

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its been 2 1/2 months since the first scan. It took 2 months to get in to the Pulmonologist. Then I was supposed to wait 6 weeks to get in to review the results- even though I can see all of the results online. Hopefully on Friday I will have some sort of plan. Just scared that its growing and is possible semisolid in the center. But maybe it was always this way and the first scan didn't pick it up well. I will post after I know something.

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dave56pa | @dave56pa | Sep 25 9:16pm
In reply to @cmcguire10 "Forgot to mention they did biopsy at surgery and I had adenocarcinoma and was stage 1b...." + (show)
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Forgot to mention they did biopsy at surgery and I had adenocarcinoma and was stage 1b. Driven by KRAS gene.

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@cmcguire10 hiya it’s Dave from Pa: that’s the fist time ive seen KRAS mutation mentioned. I’ve got mNSCLC adenoCA with KRAS and Tp53 biomarkers. Non operable so it’s radiation and chemo for me. Great to hear you’re doing well. Good luck DgA

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cmcguire10 | @cmcguire10 | Sep 25 10:42pm
In reply to @dave56pa "@cmcguire10 hiya it’s Dave from Pa: that’s the fist time ive seen KRAS mutation mentioned. I’ve..." + (show)
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@cmcguire10 hiya it’s Dave from Pa: that’s the fist time ive seen KRAS mutation mentioned. I’ve got mNSCLC adenoCA with KRAS and Tp53 biomarkers. Non operable so it’s radiation and chemo for me. Great to hear you’re doing well. Good luck DgA

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@dave56pa - Thank you! I haven’t seen it much on here either. I looked it up as soon as I saw my biomarker test results. There are even a few variations of the KRAS mutation. I pray that you will/are doing well with your treatments and I pray that they will work!🙏🙏🙏
I pray for you to have strength and courage as you fight this fight! God Bless you!🙏🙏🙏❤️

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dave56pa | @dave56pa | Sep 26 6:48pm
In reply to @cmcguire10 "@dave56pa - Thank you! I haven’t seen it much on here either. I looked it up..." + (show)
Profile picture for cmcguire10 @cmcguire10

@dave56pa - Thank you! I haven’t seen it much on here either. I looked it up as soon as I saw my biomarker test results. There are even a few variations of the KRAS mutation. I pray that you will/are doing well with your treatments and I pray that they will work!🙏🙏🙏
I pray for you to have strength and courage as you fight this fight! God Bless you!🙏🙏🙏❤️

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@cmcguire10 Tanx for the well wishes. I’ve got KRAS G12v and TP53 v157f among others. Not the results we were hoping for. But UPMC Hillman is a top notch research facility so who knows knows what they’re cooking up in their labs

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