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Neuroendocrine lung cancer .


Seventhson

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Hi Seventhson. I had a neuroendocrine carcinoid. Long story, but I had been followed for a few years watching a nodule in my right lower lobe. Lat Jan. it showed it had grown so a biopsy was done (I've previously have two separate breast cancers and thyroid cancer). It was malignant, but was a fibroadenoma, a type of NSCLC. So I had the surgery, which was only just possible because I also have COPD and asthma. When the lobe was sent to pathology a second tumor was found, and originaly diagnosed at SCLC. Plans were made immediately for me to get a IV port put in my chest, and to start chemo and radiation, 3 days in a row, every 3 weeks. But my oncologist had some questions so she sent the pathology to a tumor board which is affiliated with a large cancer center, and they decided it was not SCLC, but the nueroendocerine carcinoid. I understand these are fairly rare. But the good news is that removing it (and the lobe it was in) is all the treatment needed. A couple of months later I had the IV port removed as it never worked properly even for a blood draw, and was forming clots. So I feel OK from the lung surgery, though I have slightly diminished lung capacity. But now they've been watching another nodule in my right middle lobe, and just also discovered a suspicious lump in my left breast. So I am having mammogram and ultrasound on that tomorrow. But I am a survivor of all this! Best wishes with your carcinoid. You should be fine,

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Thanks so much. My pulmonologist had originally thought it was an atypical carcinoid. Had a biopsy and it is a carcinoid but will only meet my surgeon on the 10 of Dec. I have cough up blood and had some flushing with back pain etc. Have a lot of pains . Saturday past went to E.R. with severe pains due to a kidney stone. Came home with meds. Hope it passes soon. Have chills today so might be getting an infection. Did you have a cough or pains etc. Hope your tests go well. You have been through a lot but I can tell you are a survivor with a good attitude. I will be waiting to hear the best possible news from you. Prayers and strength your way. Thks for telling me about you. 

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Received a call from Halifax Nova Scotia hospital (3hr drive) confirming a C.T.Scan next week. I was unaware I had an appointment next week. But anyway I guess November 28 th I have a C.T. scheduled. I imagine it is the head scan to see if cancer has spread to brain. Nieghbours both in thier early 60s are not doing well. One has cancer spread to his bones now using a walker . Other had prostrate ca yrs ago. Now bone cancer. Not a long time expected for either. Say a prayer for their transition to be as gentle as possible. Thank you. 

 

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Your appointment is on the same day as my Uncle's for his Oncologist, who should have the results on his brain scan by then. Praying it has not spread there for both of you. 

So sorry to hear about your neighbors. I hope and pray their transition is gentle. Bless their hearts.

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Thks so much. Was to visit one today in hospital.  He just returned from Halifax from having radiation for pain control. Had been vomiting 3 hrs with oral meds. I told his wife you tell them he needs an injection. She said I just did. So stupid. But he is in good spirits. Hope it is all good news for us as well. I will say a prayer right now for you guys. God bless you and his angles guide you path through this. Strength and love. 

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Had brain scan and now waiting results. Power was off here today. Broke generator pull cord. Did too much now I am sore. My own fault. Hope everyone is doing good. Look forward to checking notes to see how everyone is getting on. Best of luck all.

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  • 2 weeks later...

Hi, Seventhson,

Just wanted to check in to see how you're doing? Please post an update when you can. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Seen my surgeon on December 10th and will be contacted in January for a surgery date. I will have the right middle lobe removed with vats procedure. Not sure the difference that will make in my lung capacity after surgery.  I guess we will see. 

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I"m so glad you can have VATS!  Removal of a single lobe should have little, if any, impact on your breathing (once you've healed--you can expect to cough a lot right after).  Breathing exercises are very important--make sure you do them.  Also, we suggest getting a foam wedge pillow--having a bit of incline will make it much easier to sleep right after surgery.

I think you'll be surprised how little the surgery impacts your life.

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Thanks . My work as a medic is sometimes hard and stressful. Hope I can still do it. I will shop for a wedge pillow. I can see where that could help. The surgery will be in January some time. Dad has been sick. Xray shows spot on lung. Prob fluid but who knows. Mom has a nodule in her thyroid and waiting for ultrasound.  If it rains it pours . Both are mid 80s. More worried for them than for me.. 

Thanks for your kind words . I appreciate that. 

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My functional lung capacity isn't much affected by my vats lower right lobectomy. My recovery was pretty fast, No reason to think you won't do as well!  Maybe better, since I hink you're younger than me.

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FWIW, I lead a horribly sedentary lifestyle--mostly a desk job--and just last month I climbed 700-some steps to explore a cave in Vietnam--it was daunting, but that's because I'm not in shape.  And this is with half a left lung.  You're having a third of your right lung removed.  I would be very surprised if it had any impact at all on your ability to do your job.

And thanks for the work you do.  I'm a retired prosecutor and I know what kind of work is involved in your job saving lives. 

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8 hours ago, LexieCat said:

FWIW, I lead a horribly sedentary lifestyle--mostly a desk job--and just last month I climbed 700-some steps to explore a cave in Vietnam--it was daunting, but that's because I'm not in shape.  And this is with half a left lung.  You're having a third of your right lung removed.  I would be very surprised if it had any impact at all on your ability to do your job.

And thanks for the work you do.  I'm a retired prosecutor and I know what kind of work is involved in your job saving lives. 

 

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Thanks. I hope all goes well. I am fully aware of the other small and tiny spots in my lungs. But for now all sounds good. I am setting up a home gym in my house. Time to take my life serious. I am bad for putting everyone first. I will always think of others. That's just me. But I need to do more for me. I seldom take vacation cause that money I could spend better or help someone with it. Guess we all rethink things. And for me that's a good thing. 

People see my bright jacket and lights at work. But your job is mainly behind the desk that no one sees. But that job is stressful , hard and never ending. It helps keep the world I live in a little more civil. Thanks for making my world and our world a bit better.

 Don't think I want to go up a mountain but want to see London Paris scottland and Ireland. Maybe next summer .

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I love  travel and thinking about planning for it.  Bob, that sounds like a great itinerary.  Maybe I'll start planning a trip. I can get months of entertainment from planning and reading to prepare, then there's the trip, and  more months  of recollections, taliking about it, enjoying photos and so forth. A lot of "mileage" from one trip.  I'm 73 and retired. I just started a part-time job for the winter, a big motivator being having some money available for travel. 

Travel will certainly take my mind off cancer.  Find what you love to do and look forward to it!

 

 

Quote

 

 

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  • 4 weeks later...

Still waiting to hear about a date for surgery. Had a cold but feeling better. Hate waiting. One of my neighbours was diagnosed with cancer less than six mths ago and past just after Christmas.  Another neighbour has cancer and prob less than 2 yrs.  A brother of a long time friend and an acquaintance has just been diagnosed with cancer and honestly it sounds like it may be guick.  A guy I have known for yrs and travelled with some in my younger years was found deceased in his apt. Mom has been falling asleep a lot for some time. A new doctor did some tests and she has a nodule in her thyroid . She is waiting for a date for a biopsy. Dad has a spot on his lung and is going to meet with a doctor in regards to having a scope. They are moving him up in line. Sounds like they think it may be cancer.  He is weak and lost weight.  Let's see what tomorrow brings.  Tring to stay positive and optimistically strong but must confess it's a little over whelming.  Seems like my world has or is dieing.  I accept death. Just would like it in lower doses at a time. Lol ease it on me. Not all at once. Anyway that's my update. Good to see some here have received good news. Makes very happy to read that. 

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On 12/15/2018 at 12:02 AM, Robert Macaulay said:

When Travelling abroad and taking out travel insurance make them very aware in the policy You have stated that you are a cancer patient no ifs and buts.

Thanks. I have insurance through work for 60 days in the states. I will have to check if it covers cancer pts as well.  You make me want to see the U.k. even more. Thks man. Love you optimism.  

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Svenson

In 2002 my wife sister came over to Canada on vacation she had cancer treated years  before. She took ill within week of coming from the UK. taken into hospital and they tell us it not good cancer returned, First thing i ask do you have insurance says yes. and i contact them with details. Hospital bill is $4000 a day plus and mounting.I get her out of hospital ASAP as i see AXA was stalling. She passed away within month and the total bills were over $100k and she was being treated prior to travelling to Canada. Ouch

Bob

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Then there is my father-in-law. He died recently at the age of 89. He was diagnosed with T-cell lymphoma 20 years ago and was "given" 6 months to live. He got into a clinical trial.  I would say it worked! 

 

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I talked to my surgeon's office yesterday. She says I won't be getting in to have my surgery this month. Hopefully in February. But no date cause might not be February either. If February it won't be first part. I asked if I could have my medical records transferred to another hospital for surgery. She started to inform me about this is the closest place and others are booked up too. I stopped her and said I was consulting the mayo clinic. She made it clear if I leave Canada for surgery it will be very difficult to obtain follow up care here. Like a threat. I told her it maybe harder to get follow up care if I am dead too. As it is it would cost about 140 thousands with the exchange on the money. Plus cost of follow up care. I contacted Cuba which is more affordable.  I will be forwarding my medical info there for consult with them. I don't qualify for the vaccine cause it like chemo won't work on my type of cancer.  Frustrating.  If it spreads then really I become a palliative care pt. If this is the case I think I should just quit work and go enjoy life now while I can. No point setting around waiting. There . All done venting. Feel better now. Lol. But seriously maybe I should go live a little while it's an option. 

 

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