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Lisa L

So frightened

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On 12/22/2018 at 9:32 AM, Lisa L said:

Hi I’m 52 and have been an on off smoker for many years.  My friend suggested her and I go get a lung and heart scan at Advanced Body Scan, which we did last Thursday ..well the next day my beloved mother passed away in her sleep and I have been devastated.  I just bury my mother and I get a call that I should be getting my letter and if I have any questions to call them, I thought that was weird and I get the letter yesterday, it says Spiculated lingular nodule 9mm with irregular margins in lingula ( suspicious, 15% chance of malignancy).  Of course I can’t call them because it is Saturday but I am having one panic attack after another and what I have read spiculated is not good. 

Only a PET scan and biopsy can give you the answer about if it is cancer so ask the pulmonologist to order the test for you good luck

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Hey guys I have a question? I am getting my pet scan tomorrow and I assume it will just be sent to my primary Dr. and it takes a week to get the results?  Also, I was supposed to get a referral for a Pulmonologist but I have not heard from anybody and I am getting nervous because at this point it has been almost 3 weeks since I had the original scan.  Should I just start calling pulmonologist’s in my network and explain to them what is going on?  I need advice because I do not feel like my dr. Is on top of it.  #scared

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I'd rather have a pulmonologist interpret your scan results than your primary.  I believe it only took 2-3 days for me to get my results for the PET.  

Unless your insurance requires a referral, I don't see any reason not to make a few calls, yourself.  A few days/weeks is not going to pose a problem, though I know you're anxious to find out what's going on.

Definitely get a pulmonologist in the picture, though.  I wouldn't rely on my primary for any of this stuff (though you do want to keep him/her in the loop).

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The days before scans have been the most anxious for me.  The days between them and the follow up are also very difficult.  I’m not sure I have any wisdom for how to deal with it other than just try to find distractions for a break from the worry.  Forgetting about it all together is a lot to expect, but looking for small breaks from it is a good goal to try and achieve.  Try staying with the things you do in your daily routine.

When my primary suggested I follow up with pulmonologist I jumped that step and went directly to a local hospital that had a lung cancer screening center.  I didn’t quality for the preemptive screenings, but given what I already knew and my family history they agreed to see me.  I did feel like I was running the risk of going to see a doctor that always sees cancer and may assume it is as opposed to one who always sees lungs and may assume something else.  I decided to err on the side of caution.  I’d rather think it was cancer and be wrong then think it wasn’t and be wrong.  My insurance company does not require referrals.  You do need to be your own advocate.  No one will have a greater level of urgency for your care then you do.  Even with your persistence the process will be frustratingly slow.  My follow up after my PET was a week.  There is a good chance even after this you won’t know much more.  I didn’t.  I’m six months in, three CT scans and a PET with no conclusive diagnosis.  They gave me the option of waiting another six months for another CT to see if there is any change.  I’ve opted to do a biopsy.  If it’s cancer they will do the lobectomy at that time. If it’s not they will only be taking a small 1 cm piece if my lung and I will have the peace of mind knowing it’s not cancer, and sill be 1 cm lighter 😀.

If you have a local hospital with a lung cancer screening program in place you may reach out to them for guidance.  I do also believe that you can make an appointment without the referral, you will just need to get it before your appointment so that your insurance company will pay for the visit (if they require referrals). 

You should also find the best in your area.  Most doctors refer people within their own hospital/doctor network.  Do your research and find the one you are most comfortable with that takes your insurance, not just the ones your primary refers. My process started in one hospital network in their ER, went to my primary network, to the cancer screening hospital and I’m now following up with and having the biopsy done at Sloan.

Another suggestion is ask for copies of all reports and for all your scans to be put on discs.  Read your reports with the doctor during your follow up.  The report is written by a radiologist.  The doctor will look at their interpretation, will look at the scans and make their own interpretation.  Make sure you go over the report with them and ask them to help you understand what it says if you don’t.  Ask them to have copies of your scans ready for you at your follow up.  You will want those if you decide to follow up elsewhere and gathering them later is very time consuming and can be frustrating.  

My last suggestion is write down your questions before your follow up make sure to go through them before you leave the doctors office.  If you have someone you trust to go with you bring them and let them know they are there to listen and make sure all your questions are answered.  Make sure whoever it is can keep a level head in a stressful situation and is a good listener.  If the doctor will let you them record the conversation.  It’s amazing how little you are able to retain when under that much stress. 

Good luck with your scan, think positive thoughts and let us know how it goes.   

 

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Ok so I just got home from the pet scan, Michelle the prayer posse must have been working because I was such a basket case I was claustrophobic and cried during the whole thing...the tech knew how upset I was so when I was leaving she handed me the disk winked at me and said I shouldn’t be telling you this but there were no hot spots not the nodule not even a little then she said they will probably do a watch and see..well that is all fantastic news absolutely and I have been on cloud nine but I also know that the nodule might not light up so I have a referral to one of the best pulmonologist in Oklahoma to see where we go from here ..I do not want to do the wait and watch.. because it is spiculated I want it out ..period..because of people like Bridgette and Lexi I know finding it and taking care of it early is a must ...but I will celebrate tonight that nothing (lit up)..you guys have been such amazing support for me..and I know you will be with me thru every step ..🙏

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Lisa,

Even if it's cancerous, watching it for a bit will not be dangerous.  It's pretty much SOP when the nodule is too small to biopsy.  I'd discuss it with your pulmonologist.  If s/he says let's watch it and check again in three months, that is a very reasonable course of action.  You don't want unnecessary surgery--that poses additional risks of its own.  

Pulmonologists are the experts.  If you have a referral to a great one, then you will be in good hands.

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I agree with LexieCat. I did the watch and wait for 3 months after my CT but prior to the PET. The 3 month CT showed a little growth. The PET didn't light up at all. But the doctors agreed that it needed to come out at that time I think partly because of its appearane and partly because I had a prior non-lung cancer and though this didn't look like a metastasis, they wanted to be sure. So I think watch and wait isn't a bad idea, especially if it's only 3 months.  So wait til you see what your pulmonologist recommends before you make any firm decisions. And bless that PET tech!

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Lisa-I know what you mean about being a worrier and every little pain is now cancer related.  When I get an ache or pain now, I think to myself that the Pet showed nothing anywhere except lung so its just old age.  Our minds are sometimes our worst enemies.

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So frustrated today.  I’m still waiting to hear from a pulmonologist because I do have to have a referral and so I called Cancer Treatment centers of Tulsa where I live and can you believe they do not have a contract with my insurance but they do in Atlanta.  My mind is my worst enemy today because i’m Just thinking where it is located they won’t be able to remove it and I don’t know why I am thinking that because nobody has told me that, I apologize I’m just a mess today. 

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OK, breathe.  At this point you don't need a "big gun" cancer treatment center.  One thing at a time.  Step one is to get a good pulmonologist.  That will be the person who can direct you from here.  Right now the task is to determine whether the nodule is cancerous. It isn't big, and there's no indication it's immediately life-threatening.  You don't want to ignore it (and, obviously, you aren't), but at this point it's not an emergency.  You have time to approach this in a reasonable, thoughtful way.

So concentrate on getting an appointment with a pulmonologist, and try to put the rest of your scary scenarios out of your head for the time being.

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It's natural to feel scared--lung cancer, or even the possibility of it, is scary.  At the same time, I think it's super important not to let your imagination run away with you.  Trust me, I had to make myself do the same thing--bring myself down to earth and deal with what was right in front of me at the moment.  

It really does pay off.  Otherwise you will burn yourself out and be miserable in the meantime.  Keep telling yourself, "This can be handled."

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Lisa ~ Hang in there!  I just got caught up on your posts (sorry... I've been gone and had to ship my computer off for repair before Christmas... using my son's!)  I, also, understand all of the fear, anxiety and self-talk you are going through. I'm glad you can verbalize it and share it here... I really think LexieCat should change professions - she'd make a great counselor!  Bridget is a calming influence as well. And, Tom, well he is the poster child for positivity!

I am so happy to hear about your PET Scan.  My little 8 mm tumor lighted up - a LOT - and they didn't think it would at that size. So, that sounds reassuring.

The waiting is the most difficult.  My experience with scans, etc. is that I will get them completed and then the radiology reports are loaded onto my patient portal for me to read - before I've talked / gone over them with my Dr.  That has been a problem for me... I have spent hours googling the terminology and trying to assess the reports myself.  I have to learn not to do that as I have gotten myself quite upset.  On the other hand, I want to go over the reports thoroughly as I know Dr's can miss things...

RE: Doctors... I've been confused on this issue as well and am still (even with the help from others here).  I did not have a reliable Primary Care Provider - mine actually left the clinic shortly after my first lung CT. I self-referred to a lung cancer prevention project in a larger city about 2 hours away.  Fortunately, my insurance did cover it, but it was unusual for them to have a self-referral.  I felt pretty lost in the shuffle there, however.  I was never sure if I was seeing an oncologist or pulmonologist... sometimes I just saw an ARNP.  I had to ask my new PCP for a referral to a pulmonologist - who I really like but he is incredibly difficult to get into (i.e. I had my lobectomy Oct. 1st and I can't get in to see this pulmonologist for a post-surgical breathing test until Feb. 20th!).  Everyone here keeps telling me I need an "oncologist" but I'm finding that really difficult as I'm not undergoing chemo or radiation.  I had a surgeon (surgical oncologist?) but I don't see him as being an appropriate source for me for future follow-up's on this...  My first scan / next appt following surgery with the surgeon is in early February... 4 months following the lobectomy.  I'm scheduled for a cat scan and then the surgeon 30 minutes later.  I found this really unusual and called the scheduler - She said the surgeon will have the CT results immediately after I have it done and that he will "read" the results to me at my appointment.  I have never had this done before - I've always had the CT done and then a radiologist does the report of the findings, which in turn goes to my Dr. / PCP and Pulomonologist.  Granted, my surgeon is the director of the lung cancer department at the hospital/medical center, but he's not a radiologist... I think there is a lot of confusion over who to see / turn to.  So I can understand your frustration.

I would agree about getting established with a good pulmonologist if you can... or, if there is a cancer center you can connect with.  I agree that you don't need the "big guns" right now, but do try to get a good pulmonologist in your area.  Have you called the American Cancer Society? 

I am a big worrier myself so I am, unfortunately, not the best person to offer you calm advice or comfort... but I do understand the emotions / reactions you are having.  Some days I am great and ready to take on anything... Other days I am weak, pessimistic, frightened and full of tears. I think this is a learning process for all of us.  The hardest thing for me is realizing this is really out of my control but I can work on how I handle all of this and my outlook.

Keep posting here... We are all rooting for you.

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Colleen,

I see a medical oncologist for my followups.  I totally loved my surgeon and would have been happy to stick with him, but here's what he said to me:  "I COULD do that, and if you want me to, I'll keep seeing you.  The thing is, if anything further happens, you aren't likely to be a candidate for more surgery at that time, but rather chemo."  And really, that made sense to me.  By seeing the oncologist for my followup scans, I'm establishing a relationship that will be beneficial if I ever have a recurrence.  

So that's one thing you might want to consider.  Of course, none of us ever wants to have to deal with a recurrence, but some people do have them.  I just think seeing the person who would be treating me for it if it happens makes sense.

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Colleen,

I also see a medical oncologist for my follow-ups.  

Before my second thoracic surgery, my surgeon ordered a CT right before the surgery.  A radiologist read the CT but the images were used by the thoracic and general surgeons to plan their surgery before actually cutting me open.  So, perhaps your surgeon has the same idea in mind.

Stay the course.

Tom

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C, you might ask your surgeon if he can hook you up with an oncologist for your regular scan followups.  I imagine they will recommend a scan every six months for now.  If you get an oncologist's name, you won't need the appointment for another six months after your scan.  So you shouldn't have a problem booking an appointment six months out. You want to be sure a copy of all your records (including previous scans) is sent to your oncologist.  Each time I see the oncologist now they go ahead and book my next appointment.  Then all I have to do is to make the appointment for the CT a week or so in advance of that, and the necessary blood work (needed because of the contrast used for the CT) a few days before the scan.  

A couple of times I've gotten the CT report before my appointment, but this last time I didn't hear the results till I went to the oncologist's appointment.  The scan had been interpreted by the radiologist first, but my oncologist always looks at it, himself, as well.

(Sorry, Lisa, we don't mean to hijack your thread!) :) 

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