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Mark C

Squamous Cell

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Hello,

I got the news on 2/13/18. Squamous cell nsclc. It barely showed on the CT scan, but my pulmonologist said he had a hunch, so I had a 

bronchoscopy done and they found it. I am a 54 YO male, 30 year smoker so I guess I should not be suprised, but I am still somewhat in shock. They are

telling me that a lobectomy, or complete removal of my left lung is necessary, but I won"t know if they can do that until my PET on 3/05. The waiting seems long. I 

am somewhat disappointed that it takes almost 3 weeks to get this test done, but it is what it is. I live alone, and have only shared this news with a few people, so I thought I would reach out 

to people who may be in the same situation. Guess that's all for now. Any info would be greatly appreciated!!

 

Thanks

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Hi Mark

Welcome to the forum. I'm glad you found us. I'm not surprised you're in shock, since you've just been told you have a life threatening disease. Waiting for tests and then test results is one of the most anxiety producing parts of this disease. 

I had adenocarcinoma, a non-small-cell lung cancer. I just had one cancerous nodule and I had a right lower lobectomy. The lobe (1/3 of the lung) was removed, along with a lot of mediastinal (middle of the chest) lymph nodes so they could be checked and fortunately edno cancer was found there. The surgery was done by VATS (video assisted thoracic surgery)- I had 3 small incisions.  The whole thing was much easier than I had expected.  If it turns out you do plan to have this kind of surgery,, I'll be happy to give you more  information about my surgery.

It's not clear to me from what you wrote whether you're confusing lobectomy (removal of a lobe) with pulmonectomy (removal of the whole lung. If you have only the one tumor that barely shows on the CT scan (and so I presume it's small), I'm not sure why they would need to remove a whole lung, unless there's something unusual, like maybe it's right on the edge between the 2 lobes. Right lung has 3 lobes, left has 2- part of the space on the left side is occupied by the heart. I didn't know this 3/2 business until I met with the pulmonologist about my diagnosis. Boy, I've learned a lot from having this disease!

This forum is a good place to find information, support and hope. Stay in touch and let us know how we can support you.

Bridget O

 

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42 minutes ago, Mark C said:

hank you Robert. I am hoping for great results, and I hope yours was too!!

Mark yes it was excellent except for a little lump below my right ear that the docs missed and the petscan picked up. Had couple of them removed over the years and tested so should be ok but they still want test done so very minor surgery involved Gp done the previous ones. Petscan takes around two hours to complete.

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Hi BridgetO,

They said it is right in the airway between the upper and lower lobes. They will looking to see if there is enough margin to just get the upper. We shall see.

I am very happy to have found this site, and I thank you for welcoming me.

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Hi Mark, I thought it might be something like that. On this forum you'll find folks,includinng Tom G.who live well with one lung. Have they explored the possibilty of SBRT (precision radiaion) instead of surgery, or does the location rule that out? Keep us up to date and let us know how we can support you.

Bridget O

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Bridget O, I have not heard of that but I will look into it when I talk to the Doc after PET scan comes back. 9 more days.....

 

UGH

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Hi Mark sorry I accidentally posted before I was finished writitng, The link above will take you to a place on the main Lungevity site where there's some basic info about SBRT.

Bridget O.

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Good Morning Mark (well it is here in Bonnie Scotland) Welcome to LCSC,

14th Oct 2008 I too was dxd with squamous NSCLC,so thats just about 10 years ago.I had a tumour in the airway leading to my upper right lung which caused my lung to collapse.Following all my tests,which included CT scans, Brontoscopy and some weeks later a PET scan,I met with my oncologist to discuss my devised treatment plan.There was local spread to my lymph nodes.My oncologist said I should have two cycles of what was called neo-adjuvant chemotherapy of two drugs cisplatin and vinorelbine,this he said was to reduce the size of my tumour which if successful would allow me to have a upper right lobectomy.Having received my two cycles I was sent for a CT scan to discover what effect the chemo had on my tumour.Returning for that result my oncologist told me he had never seen such shrinkage in a tumour before and that I was a suitable candidate for surgery ,also that my surgeon insisted I had the remaining two cycles of chemo in preparation for my surgery in January 2009.Just prior to the surgery I was now told I would have my complete lung removed.I was not unduly concerned about this change of tact,all I wanted was this tumour removed from my body.Well after the operation,I met up with my surgeon who informed me that the op was completely successful also that he found it only necessary to remove just less than half my upper right lung.In the UK our post follow up differs from the USA,we dont do CT Scans again,every six months for five years I had a X-ray and chest examination,each visit I was given the all clear,Finally after 5 years and no further treatments later, the oncologist who initially told me I had lung cancer said to me "Eric,we have checked all your results you are absolutely cancer free,I would go as far to say with confidence,you are cured,now go away I dont expect to see you again",we shook hands and parted as friends.

I do wish you Mark,every success with your treatments and that you make a full recovery.I am happy to answer any questions you have following my introductory story.

Best Wishes,

Eric.

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Hi again Mark,

I don't know if you saw the article about SBRT that Lauren cited in her Weekly Clip Report. Here's the link:https://www.healio.com/hematology-oncology/lung-cancer/news/in-the-journals/{ea2da7d0-cbee-4aba-bba7-5028dde05d69}/targeted-radiation-reduces-mortality-for-early-stage-lung-cancer

Bridget O

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On 3/7/2018 at 10:31 AM, Robert Macaulay said:

Have fun I was so stiff the day after must have been old age creeping in.  lol

Bob

Funny you mention that Bob, after my bronchoscopy, I was VERY stiff for a couple of days. Every muscle in my arms, legs and chest hurt like crazy. I could barley walk. After

2 days I was fine. I had told my doc about it and he just said he had never heard of such a thing. As far as the PET scan, I was fine. 

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I got what I assume is good news. I have not yet spoke to my doc, but I have read the report and it says there is no distant met anywhere in my body. It is

only on the left hilar node and left upper lobe, where it has been since we found it. I am guessing I am still a good candidate for surgical removal. I will report back after

I get a word from the doc. Any input is welcomed!!

 

Mark

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Wonderful!  I know it was a HUGE relief for me when the PET-CT showed only the one suspicious nodule glowing.  I really hope you are able to have the surgery.  When will you see your doctor?

I know I felt a lot better when I had a game plan in place.  It's always possible the plan may have to be adjusted based on what happens during surgery, but it felt good to know what the surgeon was planning/hoping to accomplish.  

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Marc,

Your read of the report indeed does sound encouraging.  Here is information on Stage III lung cancer that may help you in discussion with your doctor. (Click the text Stage III after the small right arrow).

You may be a candidate for surgery but may also receive chemotherapy after surgery.  Alternatively, you may be a candidate for precision radiation and then receive chemotherapy.  Then there is the classic first line Standard of Care conventional radiation and chemotherapy.  I hope for a surgery or cyber-surgery (precision radiation) solution.

Stay the course.

Tom

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Thanks Tom & LexieCat. I do feel more hopeful now. I am hoping to hear from the doctor today or Monday. Just having a plan will be great.  I know I still have a long road ahead,

but my fear of the cancer spreading all over has been somewhat alleviated.  Now it's time to get to work. Thanks again to everyone!! When I know what is going to happen, I will

report back.

 

Mark

 

 

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Hello All,

This question has probably been asked a thousand times, but I am going to ask anyway. I was diagnosed on 2/13/18, I have only had a PET scan (which was delayed  by a few days because of insurance), my MRI was supposed to be yesterday, but is delayed until 3/20, due to the wrong script from my doc., and my stress test (for surgery clearance) is on 3/19. My follow up appt. with surgeon is 3/26. My question is,  does this seem to be taking longer than it should? If we go ahead with the surgery, it may be mid April before it is done. That's almost 60 days!!! Any input would be greatly appreciated.

 

Mark

 

 

 

 

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Mark,

It's not uncommon for the time between initial diagnosis and treatment/surgery to take time.  In thinking about my mom's initial diagnosis, she was diagnosed in November and did not have surgery until the end of January. Then she did not start follow-up chemo and radiation until 6 weeks later when she was near-fully recovered from the lobectomy.  Although all of her tests happened quickly (this was before any molecular tests regularly occurred), she had to wait until her Rheumatoid Arthritis meds were out of her system before surgery could occur.  It was a very challenging time between diagnosis and surgery, but all turned out okay.  You might be surprised at how fast your surgery is scheduled after all tests are complete; my mom's cancer related surgeries/procedures have been scheduled very quickly once everything was in order (within 10 days at the most).  And we live in a relatively small town with limited medical resources. What I can say, is that the waiting is the worst part...waiting for test results, waiting for someone to call back, waiting, waiting, waiting....  I wish I had a magic wand to help you with the waiting, but I haven't figured out the magical remedy. 

I wish you the best in your upcoming tests and procedure.  I will keep my fingers crossed in the hope that your surgery will be scheduled in a quickness.

Take Care,

Steff

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Mark,

By way of comparison, I was diagnosed in early February and started treatment in early April.  So I think the delay you are experiencing is normal but it is certainly unsettling -- in the extreme!

Stay the course.

Tom

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