#99742 07-18-2009 03:32 PM | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 114 | Thanks to all for keeping a forum like this for others.
I had surgery for cancer in bottom of mouth on 6/24 and am going to start radiation next week. Actually I am doing a simulation in prep for radiation.
No Chemo!
They also did the neck dissection on the left side of my neck. I don't know how to describe it except it looks huge to me. From base of left ear to just right of center of neck. (edited after original post)
My doctors are currently University of Virginia Health Systems. I am trying to keep everything in one house. I don't know if that is good or bad this early. (edited after original post)
I am confused about how much information even new people here have about their cancers. I have had surgery and I know only in layman's terms, if that, what is going on.
In my case, the doctor has told me that they removed all of the affected area and were able to get 5-9 centimeter margins around it everywhere except 1 centimeter in an area close to the front of my mouth.
For this reason they have advised the radiation treatments.
I saw the dentist Thursday and he thought I could get by with keeping my teeth. Even though the treatment was going to expose the front of my mouth with what he called a significant dose of radiation.
I get the feeling that doctors don't know what to tell patients and I know I feel like I have to learn the questions to ask to get answers for others that can help and advise me.
Anyway, This is me in a nutshell, I would like to post more in the appropriate forums about radiation and nutrition issues.
Again I want to say thanks for being here.
Last edited by hisnibs; 07-18-2009 07:58 PM.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Welcome to OCF. Sorry that you had to join us. This is an awesome place to be and a great palce for support. I did not have to go through radiation, but a lot of others on here did. They will be of great help to you during that time.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Well, iI had rads and chemo together and then had to lose my teeth in preperation for rad seed implants in my tongue, My margins after surgery were 1.5 and I was told they had gotten all of the cancer, Yea they did and did 2 more operations removing more tongue. I had so many biopsies that I lost count as I did with all of the 3 types of scan, MRI, CAT and PET Was to be spaced out for 3 days for implants which turned into 7 days, After I was around for a couple of weeks, I had to have a CatScan to be sure OC was gone. LOL So they found a reoccurence of an abdomial aortic aneurysm which i big time rarity. They took 3 more scans to be sure they were seein right, This past Jan the 19th , I went to Allegheny general in Pittsburgh and supposedly they were going to repair it. Well the Dr on a follow up told me he just did the top half because he feared if he tried the lower end, he might kill me. I was supposed to wait 6 months for the Oncologist and surgeon to do their thing and tthis surgeon is the one that fixed my esophagus in 1996. He scoped me to be sure things were ok, Was set up for the aneurysm job and I had an appt with the surgeon that did the implants, He saw bone sticking out of my lowerr rigt jaw bone and an infection where my nech was dissected. Now the aneurysm is on hold and I have to get hyperbaric oxygen treatments and am antibiotics for the infection,. what the future holds right now I have no idea but I will beat whatever it is and come out smiling. I hope this will be of some help to you and soor I might have gotten carried away with this post. Good luck and you can kick this stuff.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 114 |
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 114 | I'm amazed at the persistence and strength people show here. I have spent quite a bit of time today reading posts and others experiences. On the one hand I walk away feeling blessed and on the other I find myself freaking out over things I have not yet experienced. Thanks EzJim for your comments. They pull me out of wonderland and help me see my own realities.
Wishing you the best as well...
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 |
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | John Welcome to OCF. You will find so much support to help guide you thru this. Are you being treated at a cancer center? Im not familiar with any of the places in yoru area, sorry. Its important to be seen by a team of doctors which it sunds liek you are doing already.
Even without chemo, radiation is still a long, rough road. The closer you get to the end of treatment is usually when you start feeling the worst. One thing to remember with all of this, everyone reacts to things differently. Some people suffer alot and struggle while others sail right thru. Especially the people who dont have chemo, they usually get thru it a bit easier.
Several things to keep in mind. Nutrition and hydration are most important to help your body manage the effects of radiation and to heal. Your intake should be 2500 calories per day and 48 oz water, of course more is always encouraged. Most of us here have had to work at swallowing daily (if you are able) and also stretching our mouths open wide to make sure we dont develop trismus (constricting of the jaws).
Please feel free to ask questions. You will be surprised by how quickly you pick up the OC jargon we use around here. There are several places to get lots of info too. Of course the main pages of OCF has tons of info and a search function as does the forum. Take some tiem and read the "Draft Copy", Im not sure what heading its under. Also there is a list of abbreviations posted here too.
Best of luck with everything. ChristineSCC 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 | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 114 | My GP sent me to University of Virginia Hospital System (cancer center) in Charlottesville, VA. A teaching hospital. I am comfortable with everyone there. I have heard great things about the team around me. My only complaint is not knowing what questions to ask, which is on me to learn. Also, it is 2 hours from me. That is rough on the person (friend) driving me to appointments when I cannot.
Thanks for the info on calories and hydration. I was actually trying to lose weight to gain some benefit from this experience. Today I started thinking otherwise.
Thanks again ChristineB
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 251 | Hi, welcome and so sorry you have to be here. Here is the link to the "draft copy" that Christine mentioned. This may help you with the questions to ask your team. Getting Through It - Draft Copy I am in VA also. My best to you.
Catherine
2mm tumor excised 09/23/2008 (floor of mouth) SCC (superficially invasive, well-differentiated) Stage 1, T1N0M0 01/2009 and 01/2010 - PET/CT clear Four and 1/2 years - NED! "Detection can be easy, treatment is not!"
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | John,
Also get a dentist involved, hopefully one familiar with oral cancer and get started on a fluoride treatment for your teeth. I started 1 month pre Tx and I still use my trays every night. Teeth perfect.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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