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Lisa L

So frightened

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Lisa,

Of course you are frightened and anxious. Just take it one day at a time. Do you have someone to go with you to appointments?

Hope you find a doc that you have confidence in-that's really important. 

 

Ro

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Colleen I think we might be a lot alike on one hand I’m like I got this on the other I’m like but what if it’s actually the C word I will freak.  It is just unbelievable to me that I was just planning on taking my mom to Hawaii which was one of our favorite places and the next planning her funeral.  She was a young 84 and just didn’t wake up one morning, I haven’t even had time to really grieve because I’m dealing with this stupid nodule.  I do have a very special friend who has dropped everything to be by my side through this process so I am very thankful for that.  I love reading every post and am so thankful for this forum.  

Lisa

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Lexi, I talked to Stephenson Cancer Center in Oklahoma City yesterday and they take my insurance, I like the fact that they have all the specialist in one place and they are a couple of hours from Tulsa, they are considered the Big Guns as you would say.  I also spoke to the pulmonologist office today to see if they received the referral which they have and then said we will have the nurse call you ...I’m like thinking seriously let’s not get in a hurry people it’s only my life...geez ..so in your opinion should I just wait for the nurse here in Tulsa call me or should I just go with the Big Guns in OKC...I hope I’m not bugging I really respect your opinion.

Lisa

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I'm not the one who will have to travel two hours for an appointment.  :) 

I'm not trying to be a smartass or minimize your concerns, but that's sort of what it boils down to at this point.  You would probably do just fine going either route.  You said your local pulmonologist is good.  There's no reason that person can't provide the same level of expertise as the OC Cancer Center, at least at this stage of the game.  And there's no reason you couldn't switch to the OC Cancer Center if you wind up with an actual cancer diagnosis--if that's what you decide you want to do.  It may even be that the local pulmonologist could recommend a terrific local surgeon, which would be much more convenient if you have to have surgery and then something like my small complication pops up and you need to go back in, ya know?

I'm not saying you SHOULDN'T go with the OC Cancer Center, just that it probably won't make a whole lot of difference at this point, especially when you haven't yet been diagnosed.

Sorry to punt, but that's my two cents.  :)

 

ETA: Maybe you want to see how soon either place can get you in for an appointment. I don't think medically anything is terribly urgent, but I know this is eating at you, so maybe going with whoever will see you first will make you feel like you're at least doing something.  Remember, though, either place might advise "watch and wait"--in which case you can decide where you want to go for the NEXT scan.

 

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So latest ..the nurse at the dr. Office called and she is like no uptake on the Pet Scan so good news we will just set you up another ct in 3 months see you then.  Ummmm hold up I asked once again did you not send the scans and referral to the pulmonologist, yes but they are very hard to get into.  I almost screamed in the phone I know more about nodules then you do at this point and I don’t want to wait...I need a pulmonologist now!!!!!   Sorry for venting friends 

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I called the pulmonologist office and they said they have the referral and they will call me, that’s it.  I mean no urgency what so ever.  If I don’t hear from the pulmonologist on Monday then I am going to Stephenson in okc and if they tell me to watch and wait or do a biopsy or take it out then that’s what I will do.  I also asked the nurse if the nodule was the same size and she seriously rattled off something that sounded smaller than 9mm like 7 but yet I’m not even sure.  I’m over all of this. 

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Hi Lisa-The PET tech said nothing lit up and the nurse said there was no uptake-from what I understand that is great news. Try to calm down. I know you would like a pulmonologist to review all this to have a final answer.  Keep bugging them and think positive-you have had all good news so far.   Have a glass of wine for me🍷

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Do you know how soon you could get an appointment at the cancer center?  Did they say they could get you in right away?  There might be a wait for an appointment there, too.  

Also, do you know if the scan has been sent over to the pulmonologist's office yet?  If they have the scan, then they might have determined it's not an urgent situation.  I know it's frustrating for you, but when they found my first nodules, I actually found it reassuring that they weren't telling me to get in there the next day.  I think it was a couple of weeks before my first appointment after the initial scan.  And it was three weeks from the time I was told it was "probably cancer" until I had my surgery.  

Keep reminding yourself that this isn't an emergency, however urgent it feels to you.  The nodule is SMALL.  They don't grow that fast.  

Hang in there.  It's gonna be OK.

 

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I agree with LexieCat that they're not telling you to get in right away can be seen as reassuring. When I had my "other"  non-lung cancer, they WERE telling me to get in right away and I was in surgery within a week!  So I know this medical center can move fast when they need to, With the lung cancer, everybody was being laid back about it and I decided it was OK to be laid back too. I asked if I could postpone my surgery for a few weeks because I had a vacation planned. They said sure, no problem!  I had my trip, came back and had surgery. I don't think any harm was done by the wait.

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Ok ladies I understand what you are saying and you are right, I have got good news this week and I just need to roll with it and wait until I get in.  Barb I took your advice met some friends out and had a glass of wine well actually 2 but who’s counting lol.  Love and Light ❤️

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Lisa,  I understand exactly what your feeling and I remember wishing someone would feel the urgency I did. I finally broke down in my primary drs office and she put me on something to calm me down. 

I wish it was easier for you. 

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Lisa,

Glad to hear you went out with friends.  I put my life on hold for almost 4 years while in treatment. Much of that time scans showed no evidence of disease and I could (should) have enjoyed life. But I managed to fret and fume.  I missed a lot of opportunity to experience the joy of living.  

Round up some friends and go out again.  Tomorrow will be a great day for lunch at a sports bar (NFL playoffs).  

Stay the course.

Tom

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I have been trying not to think about anything this weekend but yet I am all over the place and can’t make decisions.  I had a hair appt.  and then I canceled it and then wanted it back. Just silly things like binging some Netflix which used to be my fav thing and now I can’t concentrate on one episode..I just keep thinking abt this stupid nodule.  How is everybody’s weekend?

lisa 

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Update, pulmonologist nurse called me today and said they will see me in April, whaaaaat April, she said because they looked at the Pet Scan and her exact words the Pet Scan saved you, no uptake whatsoever, I go but it’s spiculated and she said I was not out of the woods but because I was proactive and had a Per Scan that was clear and even tho it’s small it does usually light up, of course I wanted to say well Curt and Bridgette’s didn’t. She was actually very sweet told me she has been with him for ten years and if anything had a little uptake they would get me in tommorow.  So I guess I have to do the watch and wait.  I really wish I could be positive and just roll with it but knowing me next week I will probably see if I can get into Stephenson in OKC just to see what they say. One positive I haven’t had a cig a vape nothing since I found out abt this nodule. You guys are wonderful. 

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Well, the doctor apparently looked at it, and if you went in to see him/her, that's exactly what you'd be told anyway.  They wouldn't be able to tell anything additional by doing anything else at this point.  That's pretty much the standard wait time for a re-check.  

Remember, CT scans give you a dose of radiation, so you don't want to be having unnecessary ones.  The protocols for scanning are intended, among other things, to prevent dangerous accumulations of radiation.  And you don't want to have surgery to remove something that isn't highly suspicious for cancer, either.

If you feel the need to see if the cancer center can do anything any sooner, it doesn't hurt to ask, but it's probably a good idea to be prepared to hear the same answer.  Most likely there's no getting around a wait for a scan three months down the road.

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That’s good news.  That’s the same thing they told me after my PET.  It’s almost a year of following it for me.   I scheduled the wedge lobectomy today after I got a second opinion and got the same advice.  I’d rather just know at this point.  Hopefully you get a six month reprieve from constant worrying.  I was able to mostly forget about it and not worry until the next scan was scheduled. I didn’t start worrying again until the follow up scan was scheduled.    

Please make sure to put it on your calendar to schedule the follow up if you haven’t already.  Don’t leave it in the doctors hands.  Six months goes by quick.  It’s also great your not smoking or vaping.  Good for you.  That’s a huge accomplishment.  That will provide a lot of health benefits over the obvious ones.

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Hi Lisa-

Totally understand the frustration & fear of the uncertainty.  It’s scary.  My Mom had endometrial cancer in 2016 & they found some lung nodules during the scan-a-mania.   Same as you no uptake on the PET.  It’s been two years & those nodes are still hanging around with no cancer.  So we watch & wait.  Don’t let this get in the way of your life.  My mother hasn’t missed a single flea market or garage sale (we’re from Jersey so that’s a big deal! )

You’re doing everything that you can!

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Thanks Michelle, lots of peeps from Jersey on this forum, wish I wasn’t so far away in OK..love to have a cup of coffee with you friends..btw Michelle you are an inspiration!

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Hi Curt, why I’m awake this early I haven’t a clue..anxiety I guess, I was thinking abt you yesterday before you posted I feel like our stories are so similar and I am praying for good results for you.  This whole thing is so confusing to me because on one hand they want early testing but then when they find something because of early testing they are like ok well let’s just watch it and hope it doesn’t do anything. Why I’m confused abt your nodule is it has not grown in a year, don’t they just watch it another year and if hasn’t done anything they say it’s nothing?  Is it the spiculated thing? I swear if I never hear the word spiculated it will be too soon, if it wasn’t for that word I don’t even think I would worry abt this nodule but that is the word that keeps me up at night..uggg..anyway I hope you are taking those trips that you said you were going to do, honestly Curt for some reason I feel as tho it might just be nothing...keep me updated my friend. 

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Thank you Lisa.  We do seem to be on similar paths.  I’m hoping it’s nothing for both of us.  The early testing does create a lot of uneeded stress for the 60% of people that have nodules that are benign.  It does also provide a potential for a cure for the other 40% who do have cancer.  I’ve been told that some people can have lung cancer for a very long time and it never grows.  My grandmother had a nodule on her lungs for 20 years that never grew.  They found it when she was in her 70’s and they opted to not do a biopsy and just to watch it.  She ended up passing away in her 90’s, her passing was not related to cancer or her lung nodule.  Spiculated is the word that rings in my head as well.  When I went to Sloan Kettering for a second opinion they said that does increase the concern but they said they see plenty of nodules that are spiculated that are not cancer.  Whether or not it grows over time and whether it glows on the PET are more concerning. They have greater concern for me because of my family history.  My father passed away from lung cancer and three of his sisters have had it, two of them also passed away.  The one that is still alive had a lobectomy and has been NED since.  They gave me the option to continue watching it or go ahead and do the surgery.  I’ve been at this for almost a year at this point.  I’m ready to know what it is and what needs to be done going forward. 

My best advise is don’t think about it anymore.  Worry about it when your next scan comes around.  Until then assume it’s nothing and carry on with life.  Just make sure you do the follow up.  There was a part of me when the time came for my follow up that really didn’t want to put myself through it again.  You have to do the follow ups.  

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Curt makes a very good point.  In his case, there is an additional risk factor (family history) indicating a higher likelihood of cancer.

Lisa, try thinking about it this way.  If you hadn't gone in for your scan, you wouldn't even know this nodule was there.  It's STILL early detection, if it turns out to be cancer.  Your nodule is 9 mm right now.  It typically takes half a year or more (sometimes MUCH more) for a tumor to double in size.  So even assuming it's cancer, it's still likely to be WELL below the threshold for Stage I (3 cm) when you go back for your next scan.

Remember, there's a reason they don't recommend lung cancer screening for everyone.  It's precisely because of this anxiety and additional testing and, possibly, unnecessary surgical procedures.  There's always a need to balance the likely benefit against the risks.  That's how they develop the diagnosis/treatment protocols.

My cancer was "officially" (with a bit of disagreement from my surgeon) staged at Ib.  If it had been Ia, chemo is never recommended because the risks of chemo outweigh the probable benefit.  As it was, I was on the borderline, and Stage Ib is the only one where it's virtually a toss-up whether chemo provides more benefit than risk.  So I read up on the risk/benefit studies and opted not to have chemo.  

Cancer is scary--no doubt about it.  But it's important to try not to let the fears rule your decisions.  Some people insist on driving rather than flying because plane crashes are so scary.  Yet, the actual risk of driving vs. flying is much greater.  By driving, they actually put themselves at greater risk.  

Knowing the nodule is there is more than half the battle.  If it weren't reasonably safe to wait, your pulmonologist (who you said is great) wouldn't be telling you to come back in a few months.

 

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Curt I am trying to take your advice and just live my life and forget abt it until my next Scan , I do have a wonderful lady I originally called at Cancer Center Treatment of America that wants me to send her my scans and she will give to her oncologist nurse I guess a second opinion since I was a smoker ..so going to do that tomorrow I mean why not...and Lexi I feel as tho I should pay you I mean you are better than my therapist..thank you I’m just trying to just not think abt the dreaded nodule ..thanks guys ..love and light ❤️

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Take it one day at a time and make the best of all days. I know you are worried about this but be careful of Cancer Treatment Centers of America-I haven’t personally had experience with them but know someone who has. Also, google their reviews and learn as much about them as you can. Have a glass of wine 🍷 for me. 

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