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Candi

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It does now that you put it that way Judy. I sincerely do not believe I am in denial, I have abused my body with smoking and am one that has always accepted punishment for my actions (even when it broke my heart with repentance) but something about this just doesn’t seem right to me? All would have had to have been with me to hear the progressive conversations between myself and the doctors involved but I will just wait and see what the PET scan tells me on Wednesday. Thank you so much for the clarification Judy, I’m not sure what I would do without you ❤️

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I didn't even have a biopsy before surgery.  My nodule/tumor was right around 1 cm, but it had grown, plus had a spiculated appearance, so the recommendation for surgery was based on that.  They did remove a section of lung and examine it during the surgery, which confirmed the cancer, and the surgeon therefore removed the entire lobe.  

In your case, apparently the pathologist was able to determine it was adenocarcinoma, but not much else.  That might be based on the quality of the sample they were able to take in the biopsy--it might not have had enough cells to draw too many conclusions.  And actually, that's more than enough information, as augmented with the PET/CT scan results, to  make an initial treatment plan.  

But nothing is ever carved in stone with these things.  If you have surgery, they will remove lymph nodes near the affected lobe for later examination.  If they find any cancer cells then, it will indicate the cancer has started to spread and they will adjust treatment accordingly.  Not all cancerous lymph nodes show up on a PET/CT.  

For me, the most helpful mindset to keep is to stay flexible, hoping for the best but knowing things can take a turn unexpectedly.  I never assume I'm DEFINITELY in the clear, for good.

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Oh, and BTW, try to let go of thinking of this as a "punishment" for smoking.  Many, many people have lung cancer without ever having smoked, and most smokers don't get lung cancer, either.  Yes, it increases the risk, but NOBODY deserves cancer.

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Candi

Want to second what Lexi said. Many people who have never smoked get lung cancer. Personally, I had stopped smoking 17 years before my lung cancer appeared. 

Judy M

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I definitely understand that smoking does not have to be the cause, it’s just what the doctors were pointing to and I’m sure it doesn’t help matters. I’ll apologize ahead of time for “thinking out loud” on here and all of the info each of you have shared has helped tremendously, thank you so much for that ❤️ The statement I made earlier about something not seeming right is because when I was first admitted to the hospital, a chest X-ray was done 4 days in a row with a CT scan on the third day. No other X-rays were done the remaining 8 days. The doctors acknowledged the mass, blood clot and scarring they all attributed to the pneumonia. The mass did not grow and they said my blood work was normal not lending to any other possibilities. But they did want a biopsy of the mass to make sure. They day I was discharged, one of the doctors came with a professional urgency to get the biopsy done. He was then almost matter of factually like “yep, I’m suspecting cancer”. I wanted to ask “since when?” But I don’t question doctors usually. As LexieCat suggests, I will be patient and flexible until later this week, it just seemed odd to me.

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Hi Candi,

I also second what LexieCat said about lung cancer not being a punishment. I've never been a smoker and i've had it. I've also had breast cancer and cervical/endometrial cancer. I suppose some of my actions (like bad diet and being overweight) may have increased my rsk. But cancer isn't my fault. It's just the luck of the draw.  Might be related to my chromosomes  and/or environmental factors, who knows? A lot of people with similar chromosomes and environmental factors never have it. It isn't my fault, and it isn't your fault either!  Take it easy on yourself. You need your energy for dealing with this thing and for living. Don't waste any of it on guilt. Cancer is just an illness. Hang in there. We're all in this together.

Briget O

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X-rays aren't as good at imaging lung nodules as CT scans are.  It could be that the CT scan revealed other suspicious details (like the spiculation in mine).  It also could be that the size of the nodule concerned them (but at the same time suggested it was large enough to biopsy).  Was your doctor treating you then a pulmonologist?  

Obviously, you were there and I wasn't, but what you're describing doesn't sound especially "off" to me.  I think I'd just be glad they caught it.  

If you don't feel that confident in your medical team, this is a good time to look around at your options.  It's easier to change providers when you aren't smack in the middle of treatment.

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He isn’t a Pulmonologist Lexie however one of the other doctors were working closely with the 3 top Pulmonologist on the West Coast, sharing my X-rays and information in case I needed to be transferred to their care and none of them were suspicious of what they saw either according to that doctor. I won’t say I do not feel comfortable with the decisions made, but I will wait for the PET scan and appointment with the oncologist on Friday and then determine how I feel about their assessments.

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God Bless you Bridget! I am not sure how well I could handle being diagnosed as you have?! I suppose we do what needs to be done when it presents itself but still, oh my goodness. I appreciate you sharing with me, I have a peace hearing you say we are in this together, thank you so much. I hope to be an encouragement at some point as well. ❤️

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Hi Candi,

Exactly! We do what needs to be done when it presents itself.  That's the key-- it's not being heroic or brave, it's just putting one foot in front of the other.  You'll be an encouragement by hanging around here.

Bridget O

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Being healthy prior to your lung cancer diagnosis is a huge plus. It will help your body recover from whatever course of treatment is decided on.

Please ask if you have any questions...we are all here to support you as best we can!

 

Ro

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Thank you so much Roz, I promise to. This has been such an amazing forum, I’m so happy I found all of you ❤️

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Goodmorning Everyone,

I’ve been awake since 4:30. I believe the magnitude of what I may be facing is sinking in and I think about my son who is looking at me for hope, but I can’t promise that. Of all things I want to go out on my patio and smoke, that’s my quiet, relaxing place. I’m scared.

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I think there would be something wrong if you WEREN'T scared.  But I think you CAN safely promise hope.  That's all any of us really has--whether we have cancer or not.  None of us has an expiration date stamped on our foreheads.  Every day tragic, senseless things take people's lives.  That doesn't make hope unrealistic or useless.  Think about the kids stuck in the cave, and how hopeless that looked at one point.  A combination of courage, planning, and technology was able to bring them back safely.  Medical advances are happening every day.  We have Stage IV survivors here who have survived for 10-20 years and counting.  I'd say that's pretty good grounds for hope.

Everyone is different in how they deal with these kinds of situations.  It actually made ME feel better to do things to get some things taken care of that I'd been putting off--updating my will, etc.  Maybe there was an element of superstition at work--as long as I'm ready for it, it won't happen.  It also comforted me to think that if I got super-bad news, I wouldn't have to handle those kinds of tasks while battling cancer.  I also did some research, attempting to hit that sweet spot between learning what was useful and needlessly scaring myself.  I had a medical team I was VERY confident about--that helped, too.

Right now, there's every reason to believe your cancer is confined to that one tumor.  It's not huge, which means it's still a relatively early "catch."  You don't have the most aggressive type of cancer; you have one that is well-studied and for which there are many effective treatments--even if it turns out to have spread to nodes or elsewhere.  

So yeah, there's hope.  It's not always easy to navigate that path between denial and obsessing.  But there  IS a path, and the more you can try to find yours, the more you will have your head in the right space to deal with whatever comes your way.  

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Thank you LexieCat,

In times past I have been able to pride myself in my natural optimism. I’ve overcome some pretty large hurdles as I know a lot of people have, this one just seems so mysterious to me. I try to remain positive and hold to the words one of my professors shared with me yesterday, “none of us will last forever, that’s just part of life, but today, there is work to be done.” Then my lack of air, continual coughing and wanting to sleep reminds me that I have other things going on. My PET scan is on Wednesday, I will try to stay positive and place the looming negativity on the back burner until then. I appreciate you more than you know LexieCat and will try to absorb all of your positive affirmations. God Bless you. ❤️

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Hi, Candi.  I'm a little late to this convo as I've been out of town.  I see you've met some of the wonderful people on this forum who always bring good advice.  I've had the good fortune to meet a couple of them in person.  It's a good thing when we can meet with others to talk about something that so few truly understand.  I likened these other contributors to AA sponsors - I need them and their sage advice!

It's certainly scary as hell to hear the cancer diagnosis.  But, your positive attitude will carry you very far as you go through treatment, scans, and such. I have tried to find a silver lining at every turn.  I've tried to have a little fun with this, too.  When I went through chemo, my friends joined me at each treatment and we had theme days (Mardi Gras, 80's, etc).  When I lost all of my hair last year, I got a t-shirt that says "My oncologist does my hair" and I got him to pose for a picture with me wearing the shirt.  This is not to say that this stupid cancer can be taken lightly, or there aren't bumps in the road. But there is life to be lived and I just can't/won't give in to my fear.  I keep that fear stuffed far down, weighed down by an appropriate dosage of anti-depressant. 😁    

We're all here for you. 

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Susan

Off topic but I can relate to the comment you made about those on here being like AA sponsors. So true. Nothing like having people who have been down the road you're on and know exactly where you're coming from. Candi, I believe you said earlier that it was pneumonia that caused them do diagnose your lung cancer. Mine was diagnosed because of that also. The coughing, shortness of breath, weakness and tiredness would be there because of the pneumonia if nothing else was going on. Have had pneumonia more than once and it's tough to get over. Weakness and tiredness for me could last for weeks afterward. So, I hope they're dealing aggressively with your pneumonia and you're taking care of yourself. You really need that sleep. 

Judy M

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Judy and Susan,

I was just speaking with an RN at my insurance company who also is a breast cancer survivor and she said exactly what you have,  to have family and friends beside you is so important but there is something special about sharing these journeys with others who have been right where you are. I loved your stories Susan, they sound like things I would do lol. I am thankful that through most everything I remain positive and trying to my best here as well. One of my issues with positivity is long story short, my husband passed unexpectedly 2 years ago, I battled my way through court hell for a year and a half with some of his family and just as I was nearly wiped out financially and ready to fold under the weight, I won the court case and thought FINALLY I can begin again and start putting my life back together and now THIS??!! Good grief, I’m worn out from fighting!!! lol The pneumonia I had Judy was rare and there really isn’t an exact treatment in place so it was a rough go, 12 days in the hospital most of which on a respirator. The combination of all of the antibiotics knocked it out though they tell me but yes you are right, I am still very weak, a bit short on breath and need to relax often, hard for me to get used too :)  I got a phone call a short while ago and I’m scheduled for a brain scan at 1:15 so I guess the diagnosing fun begins. I’ll let ya know if they happen to tell me anything.

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One tip--ask when the results will be back, and when/how you will be advised of them; then, once you've met with your doctors, ask for copies of reports of any tests or imaging.  Even if your treatment turns out to be very simple, there will be a LOT of them, and no way to remember what they all said.  I keep all my reports in a folder, which my cancer center provided me with.  Every so often I want to refer back to previous scans (e.g., to track the nodules that do/don't appear on my various scans).  

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Candi,

Fear -- of course, I'd be very surprised if you didn't! 

Here is an essay I wrote long ago about surviving lung cancer. 

Fear is natural and expected.  That said, truthfully, I never conquered it.  My mistake was trying to conquer it.  I'm a retired soldier and conquering comes naturally but lung cancer resisted all attempts and my lack of progress in defeating fear and the disease led to a severe depression.  You are in for a wild ride treatment wise but don't forget the reason you are in treatment -- experience and cherish that extra life treatment often provides.  While in treatment, I forgot the reason.  The wrong question is to inquire how much extra life.

Read this, then watch the movie Shawshank Redemption.  It ought to be readily available on a CD at your local library.  My life secret is to forget the past, declare the future irrelevant and live in the day looking for little things that bring me joy.

Stay the course.

Tom

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Thank you so much Tom,

All of this still so new to me, I am absorbing everything being said like a sponge. I will be going over the notes in your essay many times, what a brilliant gift you have shared. I have seen the Shawshank Redemption, powerful movie and message. As I said, I am just beginning, I have not even met with an oncologist yet, however, my concern is the “wild ride” you speak of in treatment and the copious amounts of notes and calendars. This is not a way of life I would desire, not even for the sake of remaining in this life one more day. I cherish life and those I love, but this at least by description does not sound like any quality of life at all. I will cross that bridge when I come to it and who knows, I may feel completely different at that time? Yours will be a message I will refer to often as I wait to take my turn. You have been somewhere I have never been, so I will in faith read and consider all that you have shared. Thank you so much Tom. God Bless.

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Thank you suecris and Judy. I did have the PET scan yesterday and an appointment with my dr today. The preliminary report states the cancer has spread in my lung to additional lymph nodes and there are 2 spots on my brain. I see the oncologist tomorrow to see if there is a plan of attack. I’m feeling good (not that that can’t go south quick) but for now I’m doing good. :) Thank you so much for asking ❤️

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