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Update - It's back


Deb W

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Hi friends,

It's been a while since I've written.  A little back story.  I was diagnosed with Adenocarcinoma and had surgery in March 2019 Stage 1B, no chemo or radiation.  Last week I had  my 1 year follow-up CT scan. Two of my lymph nodes were inflamed and there was another small nodule.  I went for a PET scan Monday and my oncologist called me with the results a couple of hours ago.  I'm still in a bit of shock.  It is his opinion that there is a recurrence because the lymph nodes are on the same side where I had the surgery and there might also be pleura involvement.  The issue at hand is whether or not they can get the tissue.  A CT guided biopsy might not get it because it is small and could be missed.  He said another option would be a video scope of the lining of the lung, but it might not be possible because of scar tissue from the surgery and the surgeon (the same surgeon that did my lobectomy and resection)  might not be able to get through it - also, it's a 2 day hospital stay and it's another surgery.  He said a CT guided biopsy might produce a false negative if they don't get it exactly on the right spot because it it so small.  A bronchoscopy would probably not be authorized due to COVID and it wouldn't give information on the pleura.  He is getting the genetic profile (I think that means biomarker testing) from my tumor from the past.  So, the cancer is staged at 3 for now, but if there is pleura involvement it will be stage IV.

Here's the thing...I just had an annual check-up and was feeling fine.  I did notice some shortness of breath while playing tennis in early March, but I attributed  that to humidity. I also notice  that I wasn't able to run as fast or far as before.  But, I did have wheezing that I hadn't had in the past.

I can't even think about treatment options at this point.  All I'm thinking about is how they'll get the tissue sample.    I'm wondering if I should put myself through all this testing or just have them treat the cancer since the oncologist and tumor board believes it is a recurrence.  

So thankful for this site and all of you.

 

Deb

 

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Sorry to hear about your results. I can understand you thinking of just going ahead with treatments. The waiting is always the hardest part. 

Rose

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Deb,

Virtual, germ-free hug first...  I'm getting a PET next Monday to confirm a "very concerning" findings on my 6 month CT scan - I hope I won't have to wait long for the result either cuz waiting sucks.

I totally get your "I can't even think about treatment options at this point." as that's how I feel at the moment.  I've decided I can only handle one day at a time as it's once again too dang overwhelming.  On that note, my unsolicited thought would be... I'd want to know exactly what it is I'm dealing with and I'm thinking that's why docs want to know as well so they can come up with treatment options.

another hug...

MB

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Deb,

Also very sorry to learn of your recurrence. Lung cancer is that way; almost out of the woods when the wolf attacks!

I've had four recurrences after NED treatments. After my first, my medical oncologist discussed the possibility of the recurrent cancer changing type and he characterized that probability of very low. I can remember referred to a number of studies performed for NSCLC (both adenocarcinoma and squamous cell) changing type upon recurrence and the probability was almost zero. So we began treatment (taxol and carboplatin) for 3 recurrent tumors in my one (and only) lung. He also told me about biopsy tissue storage. He said pathology laboratories are required to keep tissue samples used in performing type determination on hand for a long period. He mentioned the period but I can't recall the number of years. So, I'd inquire if the tissue was sent for biomarker testing after your surgery and if so, what were the results. If the tissue was not sent for follow on biomarker testing, I'd ask your oncologist to instruct the pathology lab to perform that testing. Your form of NSCLC is adenocarcinoma and both targeted therapy and immunotherapy are in play for future treatments so I'd take advantage of these new treatments.

A recurrence sucks but......

Stay the course.

Tom

 

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Just wanted to take a moment to say thanks to all for your thoughtful comments.  It turns out that the surgeon feels the video scope is too risky - so I believe him.  There is now another option - Endoscopy, but still no guarantees that he will be able to get tissue.  I am going to go ahead with that option, but now waiting for his office to call to schedule.  At this point, I'm not comfortable getting treatment without at least attempting to learn  exactly what we're dealing with.  If it doesn't work, I'll start whatever the treatment plan will be which I think is targeted therapy - I haven't started reading about that because, honestly, my brain is exhausted. I'm scheduled for a brain MRI Sunday morning....I absolutely hate those - even with Xanax I feel anxious.

MBinOregon - I am wishing you a good result...so nerve wracking.

I think I have clarity on the biomarker test.  The tumor tissue was stored somewhere.  He said he ordered the  testing the day he saw my CT - which leads me to the conclusion he suspected a recurrence at that time.  He doesn't have  the results just yet, but should have them in a few days.

Tom how scary that must have been...3 recurrent tumors and only one lung...can't imagine handling that.

Thanks again for your insights and comments.

 

Deb

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Hi Deb,

Im very sorry you’re having to go through all of this. I think you made a very wise decision by making every conceivable effort to clarify the diagnostic process.  I would have done the same.  
Now is not the time to be looking at treatment options, for now focus on getting through the MRI, we all  have been there.  Once the biomarker tests come back the treatment plan will come together. 
It sounds like you have a great team in place, let them do the heavy lifting right now.  In the meantime, get out and do something you love.  It’s the Joy Protocol, escape from the madness even if it’s just for a few hours.  
Keep us posted.  We’re here for you. 
Michelle

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Update -  brain MRI - clear!  So thankful. 

Endoscopy on Tuesday morning where they'll try to get tissue.

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Hi everyone,

Update:  The endoscopy result did show cancer in two lymph nodes.  Awaiting the official pathology report.  The oncologist says Stage IV.  Hanging in there and ready to fight this beast.

Deb

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Deb,

Urgh on the result 😟 but I love your attitude 👍🤗 I do think it matters.

Keep us posted and let us know how we can support you 🙏

MB

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