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#147064 - 03/12/12 09:07 PM How often are you guys usually scanned?  
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zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
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Joined: Nov 2009
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NW Ohio
I am going on three years out from diagnosis and will be three years out of treatment this August. I have had a PET scan prior to surgery, one three months after treatment, and have had six CAT scans that were all clear. I had my last scan this past November. I see my RO every 6 months, my chemo guy every 3 months, my surgeon every 3 months and my primary care physician every 3 months, as well. I was wondering how often most of you who have been out of treatment for a while, have scans now.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
#147068 - 03/12/12 11:19 PM Re: How often are you guys usually scanned? [Re: zengalib]  
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Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
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Toronto canada
Mine said no more after my first post treatment scan - I went through my family dr. For the one I had In dec. I told him I'd be back for one every 6 mos - he agrees.
My drs are happy to just do a scope and feel. I never see my MO - not since she discharged me after treatment - only my rads and surgeon/ENT every 3 mos. and my plastics guy every 6. My family dr. I see as needed, they believe too much radiation (MRI / CT ) isn't good.


Take care.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
#147071 - 03/13/12 12:24 AM Re: How often are you guys usually scanned? [Re: Cheryld]  
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,628
PA

The longer you are out from your treatments the less you have to get checked. Of course this is unless something isnt right. If you have a problem go to your doc, dont put it off. Better safe than sorry. Where you are with your doctors and scans sounds about right for being finished 3 years.

My main doc for all my cancer stuff is my ENT. My ENT just moved me from every other month to every 3 months. When I see him I am hoping to be pushed to every 4 months. I get CT scans every 6 months and seen my MO the same frequency. Im hoping to be moved to every 9 months at next week's visit. Of course that is if everything is ok with the scan. I see my family doctor only when something is wrong which is rarely. I no longer see my RO, havent seen him for over a year. He told me he would love to keep me as his patient but its really not necessary.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#147086 - 03/13/12 05:13 PM Re: How often are you guys usually scanned? [Re: ChristineB]  
Joined: Nov 2009
Posts: 493
zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
NW Ohio
I guess I was sort of concerned because my MO did not order a scan for May when I saw him in February. I will see him in May, as well as my RO, but he felt that unless I noticed something different, a scan wasn't necessary this time. My RO is also of the opinion re:Cheryl that too much radiation isn't good. My surgeon (the ENT) has been pleased with my progress. He examines my neck and the inside of my mouth very carefully as well. I also see my dentist every 3-4 months and he looks at my mouth very carefully, too. My dentist was the one who originally referred me for a biopsy, so he has been very involved in my treatment. My family doctor monitors my blood pressure and my thyroid. I was just curious as to what others have experienced in follow-up care.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
#147087 - 03/13/12 09:00 PM Re: How often are you guys usually scanned? [Re: zengalib]  
Joined: Sep 2006
Posts: 1,332
Pandora99 Offline
"OCF Canuck"
Pandora99  Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,332
Winnipeg, Manitoba Canada
My scans are getting further apart as well. I do understand that too frequent tests are not good for you, but it is scary when it happens! Sounds like you have a great doctor who is very receptive to seeing you right away should something arise so let that give you great comfort.

Donna


Donna,63, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!
#147088 - 03/13/12 09:29 PM Re: How often are you guys usually scanned? [Re: Pandora99]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
I was so tired of doctors that I "retired" my RO, MO, and primary and just see my ENT (who was the first to DX me as well as did the surgery )every three months. I get an MRI once a year although the MRI radiologist recommends every six months but I'm comfortable with my ENT's judgement.
Plus only having one MRI a year significantly reduces my routine pre-scan paranoia. So far, so good.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
#147091 - 03/14/12 01:35 AM Re: How often are you guys usually scanned? [Re: Charm2017]  
Joined: Nov 2009
Posts: 493
zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
NW Ohio
Thanks, guys. I appreciate your feedback.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
#147092 - 03/14/12 01:37 AM Re: How often are you guys usually scanned? [Re: Charm2017]  
Joined: Jul 2009
Posts: 1,367
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,367
Los Angeles
Zen - for the first two and a half years I had PET/CT at 6 month intervals. At my last one this past November, my RO said we could move to yearly. I do see my ENT though every 3 months for a general looksee - today in fact - and so far so good!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 8 years all clear in 6/17

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