#38229 02-23-2005 02:18 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | After having a substantial amount of radiation last summer (7wks) you can imagine my surprise at hearing that "re-radiation" may be part of a more assertive plan to deal with the cancer that was not held back in any significant way. Meeting with my surgeon yesterday (3wks post-op) confirmed that the cancer had invaded a well radiated saliva gland, the jugular vein as well as some other structures in my right neck. The muscle that was dissected was clear as were some remaining nodes, and provided my only margins. The aggressiveness of this disease is staggering, but I do need to consider quality of life vs the assault of another round of rads. I meet with the Rad Onc in two weeks. Does anyone have experience or knowledge of the practice of re-radiating? It was my impression from the doc that rads were a one time thing. Thank you in advance for your input. Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
| | |
#38230 02-23-2005 06:44 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Fran, I am really pulling for you!
When I had 37 rad treatments, both sides, I commented that this better hold me for life because I understood it was a one shot deal. My highly respected rad oncologist said "not necessarily." I didn't get to follow up and wish I had, but if he said that, I believe. I had IMRT, which might make a difference.
If you did not have chemo in conjunction with your rad, you might ask about that option. There have been two studies of which I am aware that indicated quite conclusively that the combination of chemo and rad extended survivial rates in advanced cancers. I, too, was stage IV with mets to nodes. It sure wouldn't hurt to mention this when you meet with your doc.
Let us know what you learn, and know you are in our thoughts and prayers.
Joanna | | |
#38231 02-23-2005 06:58 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | There have been some clinical trials going on about re-radiation and they have shown that there is far less less risk and damage than originally thought.
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)
| | |
#38232 02-23-2005 10:27 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 Gary, Is that only for IMRT? I'm going to be really pissed if they have now decided that they can reradiate an XRT area and I wouldn't have needed this surgery after all.
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
| | |
#38233 02-23-2005 05:30 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 | I believe it was for XRT. They already will re-radiate an area in close proximity to the original site with IMRT.
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)
| | |
#38234 02-24-2005 07:02 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | Because my primary was a midline structure, I am pretty sure the bulk of my rads were "field" or broad range with the boosts done by gamma rays?? Excuse my ignorance about the technical terms. So it would follow that if a re-rad was proposed it would likely be the IMRT type.(?) At this point I do not have the strength or bodily resilience to take on anything approaching my initial experience with rads; there's 30% less of me than a year ago! I will ask about the chemo-rad combo...heck at this point I'll ask almost anything. I do wish I had been on this board last spring, but better late than never. One certainly feels a lot more empowered when the feedback comes in. Thanks all, Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
| | |
#38235 02-24-2005 08:00 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 | IMRT is a lot less damaging than XRT but I lost 35% of my body weight. I refused to do the PEG thing and besides some folks have lost the weight WITH the PEG. When I was researching treatment modalities a few years ago I found that some individuals actually gain weight during IMRT radiation - but I am convinced that they are the exception. As I recall Danny Boy had the best IMRT experience on this site.
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)
| | |
#38236 02-25-2005 06:28 PM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2005 Posts: 663 | When we went to the Rad. Onc. he told us that it was a one time deal. That there was too much risk of damage to the spine.
This was reiterated by the ENT.
There is a man that we see at rad. everyday who is doing his second trip. He was first diagnosed in 2001 and this recurrance was diagnosed at Christmas. When he said this was his second time we were a little stunned based on what we had been told before.
He had XRT the first time and is now doing IMRT.
I wonder that since we are only IMRT if that has something to do with the non repeat information that we got from the docs?
Definately something to look into.
Cindy
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
| | |
#38237 02-26-2005 12:15 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Like I mentioned earlier - this re-radiation concept is in clinical trials so your docs might not have heard of it yet. The spine is at risk as you mentioned so they have to work around that by careful programming, beam blockers and various other techniques. Here are some clinicals trials: http://www.moffitt.usf.edu/Prevention_and_Treatment/clinical_programs/headneck/studies.asp http://www.ncbi.nlm.nih.gov/entrez/...&list_uids=2625112&dopt=Abstract http://www.moffitt.usf.edu/pubs/ccj/v9n5/pdf/387.pdf
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)
| | |
Forums23 Topics18,233 Posts197,097 Members13,278 | Most Online1,788 Jan 23rd, 2025 | | | |