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Referred to Thoracic Oncologist


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Hi,

On May 2nd they found a mass on my right upper lung and since then I have had MRIs of the abdomen and brain. CT of the abdomen and chest, PET and had the biopsy on May 18th.

I have adenocarcinoma with spread to lymph nodes on right side. Mass is in right upper load.

I was anticipating that they could perform surgery. But one lymph node is near my collarbone so surgery is not an option and I am stage 3b.

I will be seeing a thoracic oncologist on June 4th.

The thoracic surgeon seemed to think they would go after the tumor with radiation and the rest with immunotherapy and chemo.

In your experience, is there an alternative to radiation for the tumor? Has anyone had immunotherapy and chemo and then surgery for the tumor? 

Also, do you have access to the test results right away? 
Thank you.

Best,

Karen

 

 

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Hi, Karen, .

Every cancer is different in terms of type and location, and every patient is different, too. Have they sent your tissue out for biomarker/molecular testing? Those might show whether you have one of several mutations that might respond to targeted therapy (a pill, rather than chemo). Most people with Stage IIIb aren't candidates for surgery. Whether you can get radiation will depend on the size/location of the tumor, among other things. I was strongly discouraged from radiation due to the location of my tumor--more than one doctor, including a radiation oncologist, told me the risk of severe damage to my esophagus was great enough that it probably wasn't worth the risk.

I believe they have to make lab results available within a certain amount of time, but I try to time my procedures with my doctors so I don't see the results before they do. It's easy to freak out unnecessarily unless someone is there to explain what the test results mean.

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Hi Karen, I am one of those Stage IIIB patients who was not a candidate for surgery. I had 6x chemo, 30x radiation (to both tumor and lymph nodes) and now take a targeted therapy pill daily for my EGFR genetic mutation. My particular mutation does not respond to immunotherapy. So, as Lexie says, your oncologist will need the results of your molecular/biomarker test results in order to create a treatment plan for you. My biomarker test results took about 2 weeks after my bronchoscopy. It's hard to wait so long but necessary. The good news is that after 14 months of treatment, I have achieved the goal of No Evidence of Disease (NED). 

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Karen,

Has anyone tried immunotherapy or chemo, then surgery? Yes, I did. That is how my treatment evolved. My diagnosis was Stage IIIB also and pre-surgical chemo did in fact shrink my single larger tumor enough to allow the thoracic surgeon to operate and remove my right lung.

I was scheduled for post surgical chemo, adjuvant therapy, but surgical complications kept me from having that treatment and likely as a result, tumors were found in my left lung.

Your surgical complication may be two tumors, one in the lung and one in a lymph node and those could be the basis of your surgeon's reluctance. However, the treatment that saved my life, after 5 recurrences was radiation, or CyberKnife, a form of SBRT.

As far as test results, they are normally posted to my practice portal as soon as results are available. Medical practices are getting much better about prompt reporting of results but that sometimes causes other problems. Folks don't know what the reports mean. We'll help you with that. If you have questions about words in a report, post the sentence or paragraph, and folks will chime in with the meaning.

I do hope your treatment plan is finalized soon.

Stay the course.

Tom

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I'd just like to add, though, that sometimes knowing what the words mean in a report isn't enough. Radiologists who read scans and write the reports are not oncologists. I'd much rather know what my oncologist thinks about my scan than what the radiologist thinks. Your oncologist knows you and your cancer better than anyone else. 

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I know that people tend to focus on certain technical items called out in a scan report, but your oncologist has the expertise to evaluate and interpret the results at each step of treatment. I have a general (not thoracic) oncologist, but he is very experienced. By now I have a lot of trust in him, so I rely on what he tells me rather than focusing the details of a scan report. My scan reports aren't even available until after he reviews them with me, so I already have an impression of what I'm looking at when I can access them. 

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Thank you everyone for all of your comments. It’s such an emotional roller coaster. I’ve been reading a lot of articles from this site and others just so I have a basic understanding. Your comments and clarifications really help me.

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7 minutes ago, TJM said:

Shhhhhhh. I like seeing the scans right away. Just read the impression section.

Dont tell anybody else....😉😎

Me too, can’t help myself. Plus it gives me some questions to ask. 
everything takes so long! Does anybody’s primary care physician get involved?

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10 minutes ago, TJM said:

Shhhhhhh. I like seeing the scans right away. Just read the impression section.

Dont tell anybody else....😉😎

LOL, to each their own. :) I know some people can't wait to see. I used to be the same way until I got some problematic scan reports and then it was like I couldn't talk to the oncologist soon enough. To make it easier on myself, I try to schedule my scans the day before the visit--that way it isn't killing me not to look. 

As for being able to ask questions, I just ask the doc to print out the report before I leave so I can see exactly what it says and ask any questions I want to.

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This doesn't really answer your question, but my situation seems similar to yours. I was diagnosed with Stage 3 adenocarcinoma in April. There is a very tiny tumor in my lower right lung, and involvement in a few lymph nodes near the lung. Three hospitals told me they could not operate because of one lymph node that, like yours, is near my right collarbone. Biomarker results came back in about 8 days, and they found the Ros1 mutation. I started Chemo two weeks ago (Cisplatin and Pemetrexed) and I didn't feel sick for more than a day and a half. We'll see how round 2 goes this Friday, and then there will be two more rounds after that, three weeks apart. I also started radiation last week for the mini-tumor and lymph nodes, and I think my biggest challenge is probably going to be esophagitis. So far, I don't feel anything, but I'm trying to brace myself. The doctors seem to think I should go on one of the targeted drugs for Ros1 immediately after treatment - not sure which one. As far as immunotherapy goes, no one has said a word about it, even though my results came back PDL-100% 

Good luck with everything and keep us updated if you can. 

KH

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@KarenR, my PCP initially diagnosed lung cancer from an Xray and then a CT scan she ordered after hearing crackling in my lung. She was not involved in my treatment. I recently saw her again for an annual exam, 15 months after treatment ended. Based on my labs, she recommended certain vitamins and electrolytes, but otherwise she is very pleased with my current health. So I won't need to see her until next year, while I get PET/CT scans at my oncologist's office every 3 months. 

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8 hours ago, hillham said:

This doesn't really answer your question, but my situation seems similar to yours. I was diagnosed with Stage 3 adenocarcinoma in April. There is a very tiny tumor in my lower right lung, and involvement in a few lymph nodes near the lung. Three hospitals told me they could not operate because of one lymph node that, like yours, is near my right collarbone. Biomarker results came back in about 8 days, and they found the Ros1 mutation. I started Chemo two weeks ago (Cisplatin and Pemetrexed) and I didn't feel sick for more than a day and a half. We'll see how round 2 goes this Friday, and then there will be two more rounds after that, three weeks apart. I also started radiation last week for the mini-tumor and lymph nodes, and I think my biggest challenge is probably going to be esophagitis. So far, I don't feel anything, but I'm trying to brace myself. The doctors seem to think I should go on one of the targeted drugs for Ros1 immediately after treatment - not sure which one. As far as immunotherapy goes, no one has said a word about it, even though my results came back PDL-100% 

Good luck with everything and keep us updated if you can. 

KH

Good luck to you and thank you. Please keep me updated as well. 

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Karen, first I want to tell you how sorry I am to hear this news!  No on should have to hear they have adenocarcinoma but they do unfortunately. Really throws your world out of whack!

I also am not a candidate for surgery but I have had chemo, radiation and immunotherapy.   I am not familiar with Ros 1 mutation.  I have EFR mutation. I was on Cisplatin and pemetrexed- then Keytruda. I also had a breakthough growth that they treated with radiation (cyber-knife).  I am not sure why your oncologist have not spoken about immunotherapy.  You should ask.  Always ask!  I don't know about anyone else but if I forget to ask it drives me crazy and I usually have to wait 3 months to get answer.  This is tough enough keep it simple.  

I do get my results right away because my hospital uses a  MY Chart app.  It is very useful but I am a nurse and when I read a test result I usually can tell if good news or not.  When I read good news great, but with bad news it can cause more stress as I still have to wait to see oncologist before anything is is set for treatment.  Waiting in these situations I find is awful!

Best of luck to you, keep us posted! 

 

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