Since my CT scan time is next week, I got to talking about the anxiety that seems to come with getting scans, whether we are fearful or not of "it" returning.

It's been 3 years and 7 months since I was dx. I do not live in fear of the disease returning. If it does, we'll deal with it, like any tough stuff that life throws at us. I don't want to waste days or hours or even minutes thinking about that possibility, and feeling fearful of it.

And yet, I must be honest in saying that the day of the scan, I am anxious. It's not the procedure that makes me that way. I lay down on a table/whatever you call it, they put in the IV, take pictures, squirt in the contrast, take more pictures and your done. But when they tell me I can get up, I have to ask for help, because I am always dizzy when I get up.

I'm not dizzy when I lay down and get up otherwise. It's not that I'm terrified, or anything dramatic. It feels like my sub-conscience self is thinking things that I don't even realize and my body tenses during the test which makes me dizzy.

I'm fine afterwards to. But after the last one, no one called me, and after a week my mind was nuts, and I called them feeling a sense of dread. Why didn't they call? Is it so bad they don't want to tell me? Those kind of questions raced through my mind.

The response I got was, "we never call unless we see something on the scan. You should just assume everything is fine if you don't hear from us." Bull! I asked her if she ever had cancer, to which, of course, she said no. I told her that if and when she ever does, she will call patients back with their results.

I will politely but definitely insist that they call me back this time, no matter what!

What do you think?

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

My CT scan is coming up the first of March and yes I get scanxiety every time. I have mine done at the local hospital and then a week later have an appointment with my oncologist for the results. A year ago I decided that I was NOT going to wait a week to find out the results. Even if it's bad news I'd rather know than just worry. So I asked my hospital if I could get a copy of the results and they said yes. The same afternoon that I have my scan I go back and pick up the results and don't have to worry another week.

Paulette

_________________
04/02/09 family doctor found spot on upper left lung on chest x-ray.
04/03/09 CT scan with contrast - shows 5cm tumor in left upper lobe.
04/08/09 Met with thoracic surgeon.
04/14/09 PET scan - cancer only in tumor. Echo stress test. Cartiod ultrasound
05/01/09 Vats surgery - Upper left lobe and wedge of bottom lobe. Clean margins and no spread to lymph nodes. Staged 1b because of size of tumor. In hospital 7 days due to fluid in remainder of left lung.
06/09/09 Met with oncologist - because of size of tumor adjuvant chemo recommended. Cisplatin/Navelbine, 4 rounds. Some problems 1st round but minor ones after that. Finished chemo August 24.
09/02/09 CT scan of chest with contrast - NED
03/02/10 CT scan of chest and abdoman with contrast - NED
08/25/10 CT scan of chest and brain with contrast - NED
03/01/11 CT scan of chest and abdoman with contrast - NED
09/19/11 CT scan of chest with contrast - NED
02/24/12 CT scan of chest and brain with contrast - NED
08/21/12 CT scan of chest with contrast - NED
02/22/13 CT scan of chest with contrast - NED
_______________________________________
10/13/86 Daddy died of lung cancer after a 8 month fight. Diagnosed 2/86.

I have my x-ray coming up in February as well and always get that scanxiety. Usually I have to wait between 10 and 14 days for my results. I notice every little ache and pain during that time. I don't feel quite as bad this time. I had an x-ray on my back in December and the radiologist noted that there were no metastic lesions to be seen. I will still get the regular x-ray because they compare it to a previous one and can notice any subtle changes. But it should help with the scanaxiety.

_________________
02/07 spot showed on chest x-ray
04/07 ct scan confirmed spot
07/07 pet scan could not confirm cancerous
09/07 had lobectomy of upper lobe on left lung.tumour was 2.1cm
10/07 lymph node samples were negative. classified as stage 1b.
12/07 Begin 4 rounds of adjuvant chemotherapy. Cisplatin and Vinerolbine on a 21 day cycle.
01/08 First 3 month chest x-ray was all clear.
03/08 After 3 rounds, cisplatin wil be replaced by carbo for the last round. Ringing in the ears is a side effect of cisplatn.
03/08/08 Had treatment yesterday of Carboplatin/Vinerolbine. So far feeling alot better than when I received the Cisplatin. Treatment lasted 2 hours compared to 5 hours for Cisplatin.
04/08 Chest x-ray. All clear.
06/08 chest CT Scan. All clear
09/08 Chest x-ray. All clear
11/08 Chest x-ray. All clear
02/09 Chest and abdomen CT Scan. All clear
04/09 Chest x-ray. All clear
06/09 Chest x-ray and abdominal ultrasound All clear
01/10 Chest x-ray. All clear

Judy - I think I want to be as almost anxiety free as you! I am still only about 1 and 1/2 years out from my second surgery. And even now I could work myself up to a good panic if my arm doesn't feel better (even though I know it's muscular from getting up close and personal with the ice). Doesn't stop the worry.

As I read your story about the scan I actually thought it might be more of an "over-whelming relief" rather than an anxiety since it happens right after the test. I know they don't monitor your blood pressure when you get a scan but it might be interesting to have it done "at rest" before the scan and "at dizzy" immediately after the scan. So ask some blood pressure like questions - is this the only time you lay flat and then get up quickly? (Don't try this at home though...) something to think about anyway.

Annette

_________________
5/5/09 Bad Cough - sent for xray
5/6/09 CAT SCAN
5/8/09 Pulmonologist - not good ordered bronch
5/14/09 Bronc 5/19/09 Breathing test & Results - NSCLC (Adenocarcinoma 3cm)
5/22/09 PET Scan - 5/27 referred to surg & onc
6/2/09-met with surg & onc. They say there are two spots. One small on left lung and one larger one on right lung 3.6 x 3.2 cm - they are pretty sure and approaching it as if it were two separate cancers staging the right at II and the left at I.
June 15 - RML removed - Pathology - margins clear and nodes clear. June 25 follow up with surgeon - doc agreed to stage I since it appears he got it all - June 30 return to work
July 7 Oncologist says Stage 1A - we don't recommend chemo for this stage
Aug 17 - surgery - again took ULL and some nodes -
Sep 8 to onc - Both sides IA - no chemo just watch closely
Dec 15, 2009 - CT Results - NED
March 10th, 2010 - CT Scan - Results - NED
June 15th, 2010 - XRay - Results - NED
Sep 15th 2010 CT Scan - Results - NED
Dec 2010 XRay Only - Results - NED
Dec 2010 MRI - Results - Clear
March 2011 - CT Scan - NED
June 2011 - XRay Only - NED
Sept 2011 - Scan & Vampires - Scared to death!!!!

I'm 15 years out from my cervical cancer but I still get anxiety when I get my yearly tests and with every blood tests. The percentage was very high that it was supposed to come back...even told to expect a full hysterectomy and radiation within two years....but that never happened....every year at test time I worry....

I get yearly ct scans now too...and just recently got an X-ray to check for pneumonia....each time I sort of catch my breath and there's wonder and worry until I get results. With the CTs I always wonder if this time genetics kicks in and they will find something in my lungs....

I've gotten very good at worrying alone and not showing my fears to anyone...

I think it's just something those of us affected by cancer have to face.

Hugs

That's been my attitude all along. I just don't get worked up about it. If it's bad news, I'll deal with it then. Until then, I consider myself cancer free.

Of course, I'm also the one who wasn't worried when they called me in for a CT scan before my lung cancer diagnosis...

_________________
Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com

I have had Pap smears of "concern" on and off for as long as I can remember. I live in Canada and very little is quick with out medical system. I had a Pap just before X-mas and was told to call in for the results before the end of January. So it's the last Wed. of Jan. and that's when my gynecologist works at the gyn. clinic at the hospital where I go for my Paps since he always does a colposcopy too. It's on my mind on and off since Christmas (only on and off since I had a "procedure" in August and I really thought all should be good this time at least) but that morning, my heart is beating quickly. I swear I could feel my blood pressure up. I do feel dizzy. I call shortly before my class comes in for the results and get shuffled through 4 hospital nurses till I arrive at the correct one. She tells me that the test came in but Dr. A. has a busy day and will return calls between 3 and 5. I know that's going to be a long anxiety filled day and I'll have to really work at being extra patient with the kids (and teachers around me in some cases, even the ones I like who want me to undertake extra things when I have a one track mind). I give them my cell no. and say I'll have that on at 3:00 and mention I'll be at my home no. by 4. OOPS - I realize later, we're not allowed to answer our cells anymore if we're driving. What if he calls between 3:30 and 4:00. So it goes on. Finally talked to the doctor and all was good -- this time.

I also remember waiting for my Dad's scans and it was pure "hell". Most of the time I waited 3000 miles away so I'd get the info. from my sister. I used to put on videos for the class that day around the time I hoped the email would come in so I could sit at the computer and compulsively check my email.. Oh, it's not easy.

I don't know why most hospitals/doctors don't have a system in place where you can get your results ASAP. Waiting for scans definitely has to have a toll on your health. It's the worst jumping for that phone every time it rings.

I don't post very often but I come to this site each and every day and say my prayers for all of you. I hate this disease.

Gail p-m

_________________
Dad dx. Stage 1 Lung Cancer -- Aug. 2000 -- lobectomy -- no other treatments; follow-up every 6 months with CT scan

Recurrance April 2003 -- Stage 4 with mets to bones (Adenocarcinoma with BAC features); Received 3 rounds of Carbo/Taxol --- very little change from chemo

Re-staged to Stage 3b-4 Sept. 2003

Received 35 radiation treatments; shrinkage of most spots; however, something "else" which wasn't there is now there and they're not sure what; another PET and CT in May

Aug. 2004 -- CT and PET -- STABLE; scans at 3 month intervals --- STABLE

May 2005 --- a new spot in the lung found when coughing up a bit of blood; spot showed on PET but not on CT; bronchoscopy confirmed recurrance but also seemed to stop the coughing up blood; oncologist decided to watch and wait

July 2005 -- coughing up blood again; put on Tarceva in late July

Aug. 2005-- many problems with Tarceva and it was discontinued; feeling better now

Spring 2006 -- rapid decline in weight though May 25 scan showed things essentially stable; feeling very weak, tired and unsteady on feet

Aug. 1, '06 - Dad passed away while fighting valiantly to the very end; he was still so strong physically and emotionally; an amazing 82 year old man; I miss him so much

**** Picture is of myself, Dad, and sister celebrating Dad's 80th birthday in Feb. 2004

I have taken scanxiety to the extreme-for several years after my diagnosis and treatment, I could not even go to work for the week before the scan. I always have my appointment on a Wednesday, and I would take vacation days for the week leading up to the appointment.

If I was at home and controlling my environment I was better, but at work, when you never know what is going to happen, i was just too on-edge to cope. I would walk out of work every afternoon in tears just from the pressure of having to keep it together.

I took xanax as needed, and sometimes, the only thing I needed was to know I could take something if I got too anxious. I still have a bottle in my cabinet, but I haven't touched it for about 4 years. I just feel better knowing it's there.

Of course, I hate that the whole thing gets to take over my life like that for all those days every year, but I don't know how to control it. Last year, when I wasn't working, I was feeling pretty confident leading up to the appointment, and I really didn't feel extreme anxiety like I had other years. I hope this year goes like that as well.

I have no solutions for this--I think it just comes with the territory. It is not in my nature to take things as they come. If I can worry about it, I will!

Luckily, at my clinic, you get your scan or xray prior to the doctor's visit, which is the same day, and then the doc gives you the results during your visit with him.

Judy, I would never stand for the old, "If there's a problem, we will call you-otherwise we don't call" part. First of all, things have been overlooked in doctor's offices in the past. I don't even know if that's legal anymore. Weren't there laws passed about mandatory notification of test results because things were slipping through the cracks?

In any event, I would take the proactive approach and not depend on them to call you, but call them daily until the results are in and you have them. There are a lot of people who just don't get it because they haven't been through all this.

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung

Wow, some of you guys have it so together at scan time. I have tried to tell myself that "what will be will be" and so on, but it just doesn't seem to work.

Cindy ... I can relate totally to the work thing. The last couple of years I was couldn't concentrate at work and felt totally inept as I wasn't sleeping well for the week prior to the test and then waiting the 5-10 days to get the results from my surgeon in Edmonton. This year I am hopeful it will be better as I am only self-employed at home now and set my own hours. As long as I'm not doing tax prep or paycheques I should be ok .

Paulette - you and I are the same - I was always waiting that extended period of time to get the results...so nervewracking. Anyhow, now I have the scan appointment (usually on a Wednesday) and then I make an appt. with my GP for 2 days after that. I still go see my surgeon, but I don't have to wait the extra week or two to know whether I have anything to be worried about in the first place. I can't see ever getting same day service, but I am happier with this arrangement than the one in the past. Good luck with your upcoming scan-keep us posted.

Judy - I never get dizzy before or after the test, so perhaps it is a blood pressure thing like Annette said? As to the "don't call us we'll call you" I worked in a surgeon's office and after one very close call of something getting filed by accident (the doctor unaware of results) that practice was changed immediately as humans can make errors and things do get missed (certainly not maliciously-it just happens). I ALWAYS get a copy of my reports too as I like to read for myself that I was told everything. I sound paranoid, don't I?!?

Bruce - good luck with the upcoming x-ray...keep us posted.

Katie - glad all was good on your end. Congrats on 15 years out...whoo hoo!

Bud - I have to work on getting myself to that Zen state like you and Judy. I know it's my mind, and I try to be reasonable, but then all reason flies out the window and I am left with a scared and nervous shell of myself. I think I truly believe I am cured, but in the back of my mind there is always that comment "With BAC it is not unusual to have it return 5, 10, 15 years later" ... that comment is always there and I don't get the all clear at 5 years. Oh well, I am fortunate that I have these years to worry about it.

Gail pm - glad your results were good too. I was sitting on the edge of my seat reading your post - the health care professionals only have to experience what we have and they would have a much different attitude, wouldn't they.

My scans are until May, and trust me I will be shouting out for support and love then.

Linda

_________________
46 years old at diagnosis
Lucky mom of a 16 year old boy and 15 year old girl

Mar-May 2006-3 CXR's performed; eagle eyed radiologist caught something not quite right-F/U done
May 24, 2006-CT scan-suspicious for lung cancer
June 1, 2006-Went to Vancouver for private PET scan-SUV 1.4; ? bronchioalveolar carcinoma or carcinoid
June 5, 2006-Met with surgeon-thinks 1A-surgery soon
June 20, 2006-Left lower lobectomy via VATS
July 5, 2006-Pathology back-stage 1A, pure non-mucinous bronchioalveolar carcinoma, 1.8 cm, well differentiated
Oct 13, 2006-CXR, good
Jan 16, 2007-CXR, good
April 17, 2007-CXR, good
May 4, 2007-CT scan-good
Sept 18, 2007-CXR, good
Dec 18, 2007-CXR, good
March 18, 2008-CXR, good
May 30, 2008-CT scan-good
Oct 21, 2008-CXR, good-graduated to 6 month visits!
June 5th, 2009-CT scan-good!!!
December 3rd, 2009-CXR-good
May 27, 2010-CT scan-good-moved to once/year CT scan & visit!

4 1/2 years from surgery-so happy to be here!!!

I suffer from major scanxiety. My dad is due for scans on Fri & blood work. The nut went yest for his blood work so he would not have to wait the weekend for his CEA number. I wish there were a scanxiety cure!

_________________
[size=84]Mom diagnosed 11/03; age 58; NSCLC IIIA
Carboplatin/Gemzar
3/4/04--lobectomy
5/04--completed radiation
5/05--coiling for brain anyerusm found on routine brain MRI
8/05--triple bypass
10/06--PET, brain MRI, CT clear
8/07--NED
Currently in remission/NED
2/12--Stage IV squamous cell, a new beast
4/9/12--My mom passed away

Dad diagnosed 9/06; age 65 (asymptomatic); adenocarcinoma with BAC features
9/06--Wedge resection of 1.4cm tumor
Lots of little nodules remain and a small thing on brain maybe
11/06--Stable
5/18/10--Dx with Macroglobenemia (indolent lymphoma) & nodule growth
6/10--IT'S BACK! Tarceva time
[/size]

Judy I have you in my thoughts and prayers. What day is your scan? I am on 3 year 9 months since dx. We must have been diagnosed around the same time.

I have major scan anxiety right now. I go for a scan March 8th and I am already not sleeping and needing sleeping aids. I do not do well with it. I have already shut down and I pretty much stay to myself praying I can keep my composure every day at work. I wish I could have Bud's and Judy's attitude about it but I just can not get over the fear of my cancer coming back. Exercising does help but I don't seem very consistent with that.

Well enough of that, phew I feel better now...

Libby

_________________
43 yr old female with a 12 yr old daughter.
May 2007 - Diagnosed with stage 3A Squamous Cell NSCLC.
5/15/07 - In hospital to have left upper lobe removed. Stage and cancer type was confirmed. Removed several lymph nodes, 2 tested positive for cancer. Home after 5 day.
5/24/07 Went to Oncologist. Did CT/PET scans (praying they got all the cancer out).
6/4/07 Got results, lymph node by main artery showed cancer. Can not remove due to location. Good news was that there was no sign so far that it spread any further than that. Set up an appointment with Radiation Specialist.
6/15/07 Receive chemo every week for 6 weeks ( Carbo & Taxol) and radiation 5 days a week for six weeks, (33 radiation treatments were planned). We stopped at 30 treatments because of 2nd degree burns on my back.
Finished radiation and chemo on 7/26/07. Was in hospital and had 3 ½ weeks off of treatments.
8/15/07 Started chemo every 3 weeks for 9 weeks with larger doses.
9/28/07 Finish final chemo. Will have scans done 11/6/07 and see Dr. for results on 11/9/07.
11/07 Received results, cancer free. Was told this was a good sign considering the stage. need to follow up every 3 months with scans.
8/09 - Now receiving CT scans every 6 months, just had one in Aug so far no signs of cancer. Made the 2 1/2 year mark. Still problems with inflamation with lungs due to radiation damage.
3/10 CT scan no sign of cancer. What a relief!
7/10 still going strong no scan for 1 yr now, next scan is March, I am nervous waiting so long but I will survive. I am a survivor.
3/11 CT Scan, No signs of cancer. Thank you God.