| | Joined: Mar 2005 Posts: 9 Member | OP  Member
Joined: Mar 2005 Posts: 9 | I'm just curious as to how many of you would do radiation again given all the long term side effects. I know and understand that it is the best treatment avail for oral cancer, but long term side effects are so hard to deal with on a daily basis. Or anyway for me they are. Especially in Minnesota as we shift into the dryer winter air/climate. Winters for me are always a struggle. Actually any change of climate/seasons sets my mouth into a mess of soreness, inflammation. Along with that I tend to have more trouble swallowing. My pain doctor says that not one of his patients would do radiation again. I find that a little hard to believe, but some days.............
Donna
Stage IV SSC tongue
hemmiglossectomy/radical neck/free flap
peg tube
cisplatin/5fu
a shit ton of radiation.
17 yr cancer survivor and nobody thought I'd live 5 yrs.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I liked it so much I had radiation 5x. Only kidding on liking it, but I would do it again, if needed, and could be done safely. Some radiation effects started to kick in soon, and for the long term.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | 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 | I would do it again. Knowing what I do now, I think I can prevent the devastation I have experienced. Too bad we don't get do-overs in life.
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
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | If the science could be reasonably proven that would make it unnecessary, great. Otherwise I'd live with my decision to do it again. Although this time I'd get a PEG.
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 246 Likes: 1 | Uptown,
I'd be interested to know what you do differently now, based on your experience.
Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | There are only two ways to KILL cancer. Surgery or radiation. If it is not completely removed by surgery, radiation is the only proven option left. Simple choice if the goal is to be cancer free and live.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Not so simple when you talk about reirridation for any recurrences which side effects are then compounded, and may not be offered by some ccc anyway. When I went for Proton Therapy my RO advised me there was a 20% chance of carotid blowout, meaning death, due to all the radiation, surgery, which already carried their own risks such as ischemic events, and still do.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | 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 | [quote=travelottie]Uptown,
I'd be interested to know what you do differently now, based on your experience.
Lottie
[/quote]
I would have been much more aggressive in understanding and doing things to keep blood moving easier and I would have stopped the serum calcium loading many years ago. The calcifications have now created advanced cardiovascular disease.
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
| | | | | Joined: Oct 2014 Posts: 7 Member | | Member
Joined: Oct 2014 Posts: 7 | I'm only 6 months out but I don't think I could do the radiation again. If I did, I would opt for the PEG this time. I wish I had a PEG now.
Stacey
SCC Stage 3 Left Lateral Tongue and lymph nodes December 2013 -HPV (no risk factors)
37 years old at diagnosis
12/2013 Partial Tongue Gloss by local ENT(she said clear margins)
01/2014 2nd Partial Tongue Gloss and left Neck dissection with more disease found by doc at MD A
04/2014 finished 30 Rad Txs
04/2014 Hospitalized for radiation side effect. PICC line for fluids and TPN feedings
06/2014 PICC Line removed
09/2014 NED
| | | | | Joined: Dec 2011 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2011 Posts: 126 | Uptown, specifically what preventative measures would you take? I am almost 3 years out now and reading all of the long-term side effects some of you are having really scares me! Any preventative tips you guys can give me would be greatly appreciated 
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
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