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Wet Behind the Ears


Melanie86

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Hello Everyone,

I'm new here. To this website, and to the whole experience involving cancer.

I'm only 6 days in, since I've been told I have cancer. The night befor Christmas Eve.

I've gotten pneumonia 4 times this year, and 3 times were in the span of a month and a half. The 2nd last time my cough never went away, and the very last time I got it, it took almost 2.5 weeks for the fever to go away, forget about the coughing.

I was sent to see a respirologist, he wanted me to have a bronchoscopy, when I got the results, he showed me pictures of a tumour that's collapsed and completely blocked off one of my bronchials (which is why I kept getting pneumonia - prone to infection)

it's called a neuro-endocrine carcinoid tumour - rare, slow growing, usually in people ages 50+, usually found in the stomache area, spreads to the liver, releases hormones, doesn't respond to chemo/radiation well.

I'm just starting out. Tomorrow I get bloodwork done, when results are in I'm getting my first CT to see if it's spread, and to see the extent of the tumour in my lung. Then I'll meet my surgeon and find out the game plan.

Doctor said I'll be getting my RML removed if not half of my R lung.

Any advise in starting out? Tips for surgery??? How painful is it when you wake up? Enough to yell or cry?

Advise would be VERY helpful at this time.

Sincerely, Melanie

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Wow, so sorry to read of your diagnosis, but glad you found us.

I can't offer any information about your rare type of cancer, but I do know about lung surgery. I just passed the second anniversary of my own surgery which removed the upper lobe of my left lung. I've ridden my bicycle almost 7,400 miles this year, so while it is a tough surgery, you can make a great recovery from it.

This beginning will be the most scary time for you. Once you have a plan and get started with treatments, you'll feel a lot better about everything. Try not to worry about things too far ahead of time. Just tackle everything as it comes along.

Best wishes for you. Keep us updated as you find out more.

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Thanks very much!

That's funny that you live in "crowley" texas.... my last name is Crowley haha.

Okay, so it's not that funny... I'm just easly amused haha

Your riding has made me feel better about recovery. If you can ride that much, I'm sure I'll be able to sing and rollerblade and hike again no problem!

Thanks again,

Sincerely, Melanie "Crowley" :D

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Hi Melanie and welcome. I am so sorry about your bad news. It must have come as quite a shock for someone your age. I am however so glad they caught it early and are able to perform surgery. Many are not given that option. I had my right lung removed 4 years ago last Aug. and just recieved my latest scan results and they were good. So hopefully they will get that bugger out of you and that will be the end of it. Surgery is not easy but you will recover faster than you think.My prayers are with you for a successful surgery and for you and your family's peace of mind.

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I responded on your other post before I saw this - thanks for all the information.

I'm swimming 3 times a week and work about 80% time and go to school - 13 months after surgery now. I was working out a week after radiation ended.

They give you plenty of pain medication when you have lung surgery. Don't be afraid to use it, but I was ready to be off them within a few days of getting home. I ached in a way that responds better to ibuprofen. You might get resistance from doctors on taking aspirin or ibu. What you really want to avoid is post-surgery constipation. We have had lots of posts on this subject. We become awfully familiar quickly. The pain meds and inactivity really contribute. You can't believe how uncomfortable it can be!

Take good care of yourself and let others help. Yelling and crying are always options - but I hope you have much more laughter and love in your life.

Fingers crossed for tomorrow. As good as the news an be, please.

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Hey Melanie,

I had a upper left lobectomey, they went in between by ribs, sounds ugly, but with pain meds it really wasn't painful at all in the hospital, they had me on a epideral (?) block. They have new surgery now called VATS that isn't anywhere near as invasive. I was in the hospital for 5 days. I was out of work for about 3 to 4 weeks and started back part time. I worked part time through out my treatment. I had follow up chemo for 12 weeks, 3 days chemo, 3 weeks off, for 4 rounds. The chemo was just a precautionary measure, that got all my cancer with surgery. Wait and see what all the doc's say. Just being told I had "cancer" is what scared me have to death, it's just a word not a sentence as Katie would say. Once you get a game plan in place you'll feel better. Keep asking away!

Dana

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Melanie,

I posted on the other thread too, but you specifically asked about the surgery and the after affects here, so I thought I'd give you more info (at least that I have).

I went to a demo in Danbury CT where we watched a doctor perform a VATS lobechtomy. Back in the day I guess the surgery would have been a big incision and would have the discomfort which would come along with that. This doc does this procedure where they do the tiniest incision (2-3 inches if I remember correctly), remove the affected lobe, actually "bag it" in place to and remove the bagged tissue through the tiny incision.

This doctor said the majority of his patients take nothing more than tylenol after the procedure to assist with the "pain"...which he said is more mild discomfort than anything.

Amazing procedure.

Good luck and prayers to you.

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Wow, Nick!

The VATS procedure sounds good to me! Sign me up! Haha.

I just got my blood work done today, once the results are in I have to go for my first CT, then I'll meet my surgeon. My respirologist said that my surgeon sometimes does the VATS procedures. I'll be sure to let them know my preference!!

Thanks!

Sincerely, Melanie

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Melanie,

Welcome. Sorry you have need to find us, but glad you did. Take heart in what you posted about who usually gets what you have. You are young, very young. You will do well with treatment, bounce back better from side effects, etc. You have a lot of things to add to the "plus" column, it ain't all bad. Scary, yep, definitely scary, but take it little bites at a time, it's easier to swallow than trying to get it all down at once.

Try this for your surgery questions:

http://lungevity.org/l_community/viewto ... highlight=

Take care,

Becky

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Melanie, they'll let you know whether it'll be an option given what they see. Just wanted to let you know that surgery isn't (as strange as it sounds) the worst thing when you've joined our little club here. And that there have been amazing advancements.

We'll be keeping an eye out for updates.

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Melanie -

I just wanted to add my 2 cents about the surgery..

I ended up with my upper and middle right lobe removed, and it was my first surgery ever- I was terrified!! However, it certainly is doable, the pain isn't that bad since you have pain meds, and although its certainly not on my top ten list of things to do again --- it was not as bad as I thought it would be.

Wishing you the best- keep posting!!!

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  • 2 weeks later...

Melanie:

I am with Debi - it was my first surgery ever as well (and like her not on my top 10 of things I'd like to repeat) but I must say that it was very manageable. On my 3rd day post-op (they kicked me out of the hospital less than 48 hours after procedure-VATS though) I was out walking (did about 1/2 mile). I stayed on minimal doses of T3's for a week and then was off them completely.

Everyone is different and each surgery is different (even if they go by the same name!), but you definitely have the benefit of being younger. I am sorry that you have to go through such a rotten experience at such a young age though.

Take care,

Linda

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