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jesslaa

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Hello everyone!

I am so very grateful to have found this group after a few google searches. My mother was recently diagnosed with NSCLC and everything has felt quite surreal for the last several weeks. Reading through everybody's stories and information has provided me with much comfort and reassurance for the myriad of emotions I have been experiencing.

My mum has been undergoing radiation for a grapefruit sized mass found on her lung for the last two weeks. She underwent her first 3 days of chemo (cysplatin) last week, and is so far only experiencing some insomnia and fatigue. She is scheduled to undergo radiation daily for the next two weeks, and has another three days of chemo scheduled during that time as well.

I was told that a "staging" cannot be determined until six weeks after her final day of radiation. This puts us at the end February. Is this a common timeline? All those medical tv shows led me to believe that this information comes quite quickly. It's been strange living in "limbo" waiting for information which may dictate future plans.

Thank you everyone

Love&light

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Hi jesslaa and welcome. 

I am sorry to hear off your mothers diagnosis. I went through the same thing a few months ago. I am unfamiliar with the Canadian medical system and the protocol it follows regarding lung cancer NsCLC staging. Although I am not a doctor, in the US they gave my mother a stage before surgery and before chemo based on Tumor size and lymph node involvement/node location. 

Did your mother undergo a medistinoscopy? 

God bless. 

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Good morning, Jess.  I'm glad you found this site - it has been very helpful to me.  My lung cancer was diagnosed during surgery; my cancer had spread to my lymph nodes so it was staged as III.  The doctor revised the staging because after surgery, but before chemo started, metastatic lung cancer was found in my thyroid.  Perhaps your mother's medical team is waiting for more information, such as any metastisis, before they stage.  That said, please don't let the stage number take over.  I pretty much ignore my stage IV diagnosis and am making plans for two trips in 2017.    

I also took the cisplatin, with alimta, earlier this year.  My biggest issues were fatigue and nausea, although I did develop neuropathy.  

Please keep us posted on her progress, and let us know how you're doing.

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@st Michael@skmcornett Thank you for your kind words, they are very much appreciated

I am sorry to hear you have both been through similar situations. It really is so bitter sweet to have a community like this where we can all sympathize with each other's experiences, isn't it? I wish you both the best.

I don't believe she has had the medistinoscopy that St Michael referenced. She did have an initial biopsy when the mass was discovered, and that came back with the non small cell lung cancer. Today I learned that the stage is "an informal stage 4."

I say informal because the mass is very close to her heart and thus non operable, but it has not spread elsewhere as a typical stage IV. I am trying to not fixate on the stage but it is quite terrifying to hear.@skmcornett I am happy to hear that tour staging has not impacted your outlook or future plans. I take much inspiration from your positivity, so thank you. I read an article on cancer.org and based on the information I've been given I would have said IIB. I guess that's why it's important to take context and the individual into consideration.

She is doing well. We were together over the holiday weekend and her energy levels and outlook were both positive. I am trying to stay cautiously optimistic but this all still feels quite surreal.



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@st Michael/index.php?/profile/12138-skmcornett/'>@skmcornett Thank you for your kind words, they are very much appreciated

I am sorry to hear you have both been through similar situations. It really is so bitter sweet to have a community like this where we can all sympathize with each other's experiences, isn't it? I wish you both the best.

I don't believe she has had the medistinoscopy that St Michael referenced. She did have an initial biopsy when the mass was discovered, and that came back with the non small cell lung cancer. Today I learned that the stage is "an informal stage 4."

I say informal because the mass is very close to her heart and thus non operable, but it has not spread elsewhere as a typical stage IV. I am trying to not fixate on the stage but it is quite terrifying to hear.@skmcornett I am happy to hear that tour staging has not impacted your outlook or future plans. I take much inspiration from your positivity, so thank you. I read an article on cancer.org and based on the information I've been given I would have said IIB. I guess that's why it's important to take context and the individual into consideration.

She is doing well. We were together over the holiday weekend and her energy levels and outlook were both positive. I am trying to stay cautiously optimistic but this all still feels quite surreal.



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Hi hi, I think what they may might have meant to say is "re-stage". They (most of them I thought) determine the stage initially after the biopsy using it and CT scans. TMN = Tumor Mets Nodes and that is the size of the tumor, if it's spread, and how many- if any - nodes are involved. I feel like I want it to be TNO but I can't think of what the O would be. I am only sure that this style of staging was used where I went, along with numerous other places here in the USA.

I am in Pennsylvania.

I can't swear to what exactly the re-staging is categorized as, but I do know that they need to wait 4-6 weeks after radiation to re-stage. I'm guessing stuff is too swollen to get accurate measurements before a healing period. In my case they were doing that to make sure that the plan for surgery a couple of weeks after restaging was done was still going to be on track. I did not read everything here after your post. I just glanced over the posts to see if anyone had already mentioned what I could add. If I duplicated anything, please accept my apology.

I did notice a mention of an inoperable tumor in your reply here. I also saw your concern about Stage IV. I can point you to dozens of people who have between 8 and 16 years of Surviving & Thriving after a Dx of Stage IV lung cancer. Mom can do this too!! The things cancer centers are finding out on practically a daily basis anymore are just amazing!!

Not that any 2 people ever have the same story, I can tell you that I was Dx almost 6 years ago (March 2011) T-3 M-0 N-0 = IIB and had cisplatin & etopiside with radiation and I had what the docs call a "complete pathological response" meaning it was "killed"!! They still did my surgery to remove "the shell of the tumor" and everything that it ever touched so that if even a microscopic bit of the smallest bit any microscope could see, it would be OUT! That surgery was done in August 2011 and thank God, it's still gone to this day!!

I hope that this information helps and that mom's treatment has the best responses possible!!

Take care,
Mitch & Mary

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Jesslaa,

You are most welcome here.

I want to reinforce a point Mary brought out.  Many of us on this site and others are alive and well after being diagnosed staged IV.  Staging for lung cancer, in my opinion, roughly translates to a determination if surgery is possible.  If the tumor is a single mass and there are no distant metastasis, then surgery may be undertaken and may be curative.  In my experience, I had a recurrence after what was supposed to be curative surgery, then twice more after 12 cycles of chemotherapy.  Lung cancer treatment can often be a long game, but, as Mary says your "Mom can do this too."  That is survive and thrive after a lung cancer diagnosis.

Stay the course.

Tom

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  • 2 weeks later...

Hi Jesslaa 

I hope your Mom is doing OK. I was diagnosed with SCLC in May 2016 and it was found by me having a allergic reaction to of all things a cookie. I have been through the Chemotherapy and will be starting Radiation in the next week or so. My tumor in the left lung was 6.3cm and after chemo it is now 2.3cm. So it works. My wife is my rock and living angel. Without her encouragement I would have just given up. Stay strong, and give love to your Mom every day.

Best wishes to you both.

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