#4099 10-19-2004 12:45 PM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | Went in for the quarterly checkup and CT scan results today. Six months past surgery, and eight months past radiation, and the word was "everything looks great,BUT, we noticed one small dark spot on your lung." It's irregular in shape and too small to biopsy. The opinion of the board is that it's scar tissue, and the recommendation is to wait for the next CT scan, scheduled for mid-January when they expect it to be gone or unchanged.
I don't know whether to go nuts, or just try to relax and join in on the "watchful waiting". anybody had any experience with this type of indication on a scan? I'm afraid I won't sleep for the next 3 months worrying about this.
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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#4100 10-19-2004 02:27 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Chuck,
Isn't there some other test they can run to determine what it is? Three months seems like a long time to wait and see!! Might want a second opinion on this for your peace of mind. Hoping all turns out well for you.
Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#4101 10-19-2004 03:22 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Chuck, they need to hand out valium with these kinds of statements. Tough to wait another 3 months with that kind of news, I'd keel over from the stress..
Thing is, while spots on the lungs aren't a good thing, could be exactly what the doc's said it is. Maybe talk to another doc or two in the meantime, as Dan suggests. Let's hope it's just as the docs say and gone by Jan.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#4102 10-19-2004 03:24 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Chuck, have you ever had pnuemonia?
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#4103 10-19-2004 03:39 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Chuck,
I had a friend with very advanced esophageal cancer and after a radical amount of surgery, chemo and radiation he was given a very minimal chance of surviving. He finished treatment in May and had a chest xray a few weeks ago. His doctor told him either cancer has totally consumed his lungs or he has the worst case of pneumonia the doctor has ever seen. His statement was based several rather large dark spots on his lungs. After he had a scan, though, it turned out to be a severe case of pneumonia. The news totally destroyed Ernie and ended up to be not as bad as once thought. It was sad to see someone go through such a difficult time because of the doctor jumping the gun. It sounds like your doctor is being a little more diplomatic and I am hoping the end result is the same.
Try hard not to worry. It sounds easy and if you find the secret please let me know.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#4104 10-20-2004 11:04 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Chuck,
I have had 'squirrely' chest xrays and CT chest scans ever since I had radiation. If the upper part of your lungs were radiated, that may be the cause. They can scope your lungs the same way they do your throat, but the have to knock you out to do it. If you think you'll stress out oo badly or if doc not sure, I'd ask about it.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#4105 10-20-2004 01:23 PM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | Thanks everyone for your replies. I've never had Pneumonia, they asked yesterday if I'd had a recent cold or cough. At this point they say it's too small to do any other tests, so they recommend watching and waiting. I have a checkup with the Radiation Oncologist next week, and I'll have my wits about me to ask more questions. When they drop it on you like that, the mind goes kind of numb.
My biggest concern is that this hadn't shown up on any previous scans, and since I'm in a trial, I've had about six of them in the last 15 months. I did a lot of coughing in Feb/March, but had scans in April and July.
I tend to believe them when they say it's nothing to worry about, but then that's what my primary care physician said about the swollen lymph gland months before my cancer Dx!
Three months is a damned long time to worry about this though, so I'll try to push for something sooner, or a lot more information about why I shouldn't.
Again, thanks for the support. I knew I could count on the people here.
Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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#4106 10-21-2004 03:53 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Chuck, on my initial scan after diagnosis of c on tongue, docs saw a spot on my lung. Had a petscan, that spot did not show up as "hot". They have done other scans since then, and it had not changed, they said either scar tissue, or maybe from a bout with bronchitus. Hopefully, it still hasn't changed and is scar tissue...I know how you are feeling....God Bless, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#4107 10-21-2004 08:34 AM | Joined: Oct 2003 Posts: 89 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2003 Posts: 89 | It is very hard to sit still for 3 months when you hear a report like that!
I've also had some similar medical comments that say we can't be sure etc, but probably its scar tissue/radiation changes. (Though not on my lungs or chest).
Questions that I thought of, are:
1. if it is pnuemonia, bronchitis or such, is there any test, treament, or medication they could be doing? Would your GP or other doctor be better at listening to the lungs, for example, does it effect your breating & would some type of oxygen/breathing test help?
2. should you be watching for any worsening symptoms? You've been through a lot, it wouldn't be surprising if your immunity is down. If it is pneumonia you don't want it to get to be too bad.
3. I know CTscans, etc are expensive, but ask the docs whether a chest xray in a month or 6 weeks might help. Also, if it is really worrying you mention that to the docs, they may be more willing to order more tests, etc.
I've found that the waiting seems hardest/I'm the most anxious just AFTER a medical test or appointment, but that in a few days a get busy with other things and then I am not dwelling on it so much.
keep up the good fight!
michelle
History of leukoplakia <2001-2004. SCC lateral tongue 9/03; left radical neck dissection & hemiglosectomy 10/03, T2-3,N0M0; 28 IMRT radiation completed 12/03. 30 HBO dives Oct-Nov 04 for infections and bone necrosis -mandible.
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#4108 10-21-2004 12:47 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hi Chuck
My husband also had the scar tissue result on a CT ...and thats exactly what it was. Try not to panic. You will drive yourself crazy. Or is it too late....lol
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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