Adenocarcinoma - newly diagnosed

Posted by Sandy @pixiedust, Feb 26, 2023

Hello. I am new to this group. Thank you in advance for any guidance and or support you have to offer. I have been diagnosed with adenocarcinoma of the upper right lung. Have had a bronchocoscopy, x-rays, CT and lung biopsy - which determined the diagnosis. I have an appointment this Tuesday for a PET scan to determine staging, and a breathing test will follow. The only symptom I have had is hoarseness in my voice. Otherwise I feel fine. I am simply terrified and still in shock.
Pixiedust

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Hello. I had my PET scan today and got the results back same day. This is the diagnosis: 1. Findings of primary right upper lobe neoplasm with low right paratracheal nodal metastatic disease. 2. No evidence of distant metastatic disease. I spoke with my Pulmonologist and he said this is considered stage 3A. He is contacting an Oncologist and hopefully I can meet with both of them either this week or early next. He suggested the Oncologist might want a biopsy of the lobe (mediastenoscopy?) or a bronchoscope/ultrasound & biopsy. Very overwhelmed. Has anyone had success with surgery at this stage?
Sandy aka Pixiedust

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@pixiedust

Hello. I had my PET scan today and got the results back same day. This is the diagnosis: 1. Findings of primary right upper lobe neoplasm with low right paratracheal nodal metastatic disease. 2. No evidence of distant metastatic disease. I spoke with my Pulmonologist and he said this is considered stage 3A. He is contacting an Oncologist and hopefully I can meet with both of them either this week or early next. He suggested the Oncologist might want a biopsy of the lobe (mediastenoscopy?) or a bronchoscope/ultrasound & biopsy. Very overwhelmed. Has anyone had success with surgery at this stage?
Sandy aka Pixiedust

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Hi @pixiedust, I wanted to check in with you. I'm sure @lls8000 and @flusshund can share more about your staging.

Did you get the biopsy done in the meantime? What is your treatment plan? And most importantly, how are you doing?

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Thanks for asking! I met with the surgeon. Here's the plan the surgeon and onco have laid out: 1. Onco will schedule an MRI to rule out spreading to brain. 2. If negative on MRI, surgeon will schedule a mediastinoscopy of the naughty lymph node (as well as a few others). 3. If he finds it has spread to other lymph nodes, there will be no surgery. 4. If only in the node that lit up on PET scan, they suggest a short round of chemo/radiotherapy first. 5. If all goes well, he would then schedule a surgery to remove the mass as well the lymph nodes. 6. Post sx, another round of chemo, rad and immunotherapy. 7. I don't have a timeframe yet, but suspect I will hear from Onco on Monday with a date for the MRI - after the MRI, a schedule for the short pre-sx chemo/rad. This is all happening so quickly and of course, I'm hoping the surgery will happen. If it's not meant to be, then we move on to the long term solutions. I am fortunate to have family and friends with good support and it's helpful sharing with all of you at Mayo Connect! At first I was completely overwhelmed and scared. But now that things are falling into place quickly, I'm not dwelling on it and keeping busy!
Thanks again...
Sandy

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Good morning! A couple of updates: I had the pulmonary function test on Monday - have not received any info yet, and I am scheduled for a brain MRI on Saturday. I feel that things seem to be moving but not fast enough. Also, still waiting for the gene marker results which don't seem to have come back yet...does anyone know how long that takes? Also, has anyone had a mediastinoscopy done? When I spoke with the surgeon he mentioned that would be done IF surgery was an option...

Thanks as always...
Sandy

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Good morning Sandy, thanks for keeping us posted. From what I’ve seen/heard the biomarker testing generally gets sent out to a specialized lab, and can take a minimum of 2 weeks. Good luck with the MRI, hoping for good news.
Take care, Lisa

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Good Luck to you Sandy! I had the EBUS bronchoscopy on my lung lymph nodes. 3 different ones. It wasn’t bad, just scary waiting for results, but they put them on the portal before I got to the parking lot to go home. My Segmentectomy is scheduled for next Friday, the 24th. I’m anxious and scared but also keeping myself busy by trying to get everything in place for my recovery at home. It’s been a whirlwind with all the appointments and still trying to work at my job. But I think if I had the time to just sit and think about everything, I might put myself into a depression and that would not be good for anyone. Sometimes I forget it’s NOT just affecting me, my husband and children (grown) are affected just as much as they have to also go through this with me. I Pray 🙏 that everything goes well for you and everyone else that is going through this! Not a community I ever wanted to be a part of, but so glad this community is here to talk with! God Bless you All!

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@pixiedust

Good morning! A couple of updates: I had the pulmonary function test on Monday - have not received any info yet, and I am scheduled for a brain MRI on Saturday. I feel that things seem to be moving but not fast enough. Also, still waiting for the gene marker results which don't seem to have come back yet...does anyone know how long that takes? Also, has anyone had a mediastinoscopy done? When I spoke with the surgeon he mentioned that would be done IF surgery was an option...

Thanks as always...
Sandy

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The gene marker test will probably take the longest, but it is imperative that they have that because it is so helpful to determine what is driving the cancer so they can treat it the right way. It's amazing what they can do now based upon markers and genes! I hope your MRI turns out well, and I'm glad things are moving along for you. I know what you mean about them not moving fast enough though! I think we all feel that way when were first diagnosed with cancer at the beginning, it's all the unknowns!
Angela
Angela

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@bellsina71

The gene marker test will probably take the longest, but it is imperative that they have that because it is so helpful to determine what is driving the cancer so they can treat it the right way. It's amazing what they can do now based upon markers and genes! I hope your MRI turns out well, and I'm glad things are moving along for you. I know what you mean about them not moving fast enough though! I think we all feel that way when were first diagnosed with cancer at the beginning, it's all the unknowns!
Angela
Angela

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Thanks Angela...words of encouragement are always warmly received! I also heard from my Pulmonologist and the pulmonary function test was almost near "normal" so it surgery is determined, good lungs will help!

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@pixiedust Sandy. Hello Sandy, I recall being terrified and in shock as well, in very similar circumstances. But, once I received the final diagnosis, that same day as the doctors came up with their planning for my treatment, a heavy weight seemed to fall down from my shoulders. That kind of turned a switch. A whole lot of frustrating uncertainty was suddenly gone. Despair seemed to turn into some kind of “looking forward into a brighter future”. When treatment starts, as unpleasant as it is, I got the feeling that something was happening at last. No more standstill, the world and planet Earth started to move and turn around again. I was diagnosed with stage 3 AAA. Tumor of 25 by 21 mm in right middle lung. After 2 rounds of chemo and immune therapy, the tumor had shrunk to 18 by 10. A champagne cork flew into the air. Will know next week if the 3rd round had a similar good result. Next step is surgery, 4 weeks from now. So hard to imagine I was once in shackles, the uncertainty was the worst… For me, my morale and confidence just got better, as time went by. I truly hope you might go through that phase as well. Hoping my story and my words might make it a little easier for you, to get you through this episode. Wally.

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@cornelius775

@pixiedust Sandy. Hello Sandy, I recall being terrified and in shock as well, in very similar circumstances. But, once I received the final diagnosis, that same day as the doctors came up with their planning for my treatment, a heavy weight seemed to fall down from my shoulders. That kind of turned a switch. A whole lot of frustrating uncertainty was suddenly gone. Despair seemed to turn into some kind of “looking forward into a brighter future”. When treatment starts, as unpleasant as it is, I got the feeling that something was happening at last. No more standstill, the world and planet Earth started to move and turn around again. I was diagnosed with stage 3 AAA. Tumor of 25 by 21 mm in right middle lung. After 2 rounds of chemo and immune therapy, the tumor had shrunk to 18 by 10. A champagne cork flew into the air. Will know next week if the 3rd round had a similar good result. Next step is surgery, 4 weeks from now. So hard to imagine I was once in shackles, the uncertainty was the worst… For me, my morale and confidence just got better, as time went by. I truly hope you might go through that phase as well. Hoping my story and my words might make it a little easier for you, to get you through this episode. Wally.

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Thanks so much Wally. It certainly does help...kind words and encouragement are the best! I will know more after the Mediastinoscopy next Wednesday...hoping for a good outcome.

Thanks again...Sandy

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