| Joined: Jul 2009 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2009 Posts: 38 | Hello;
I am a new Base of Tongue, SCC, stage III patient. I begin RT and Cisplatin next week. Radiation will be 6 to 8 weeks followed by a neck dissection (I have neck lymph node involvement). My doctors are confident that I will respond to treatment and so am I. I am 49 years old and am expecting my first grandchild in November.
Mark BOT Squamous cell, stage IIIa
| | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2009 Posts: 88 | Mark,
Welcome to OCF you will find great information and support on this site. I live in OR too just down the road from you. My daughter is the patient, I'm curious who you are seeing as your doctors here in Portland.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06 SCC T4N0M0 with bone invasion upper maxillary Surgery 10/06 CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx Tumor board - No surgery to invasive for QOL 35 IMRT 3/30/09 Completed 5/15/09 8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Welcome to OCF Mark.
The road will be tough but being diagnosed with cancer doesn't have to mean the end of the world. Keep your chin up, the only thing you can control is your attitude and nutrition, the rest is up to your body and your medical team.
Good luck and be well
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | 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 | Mark, welcome to OCF. You will find lots of support and help here. Best of luck to you next week. Try to eat all you are able to now. Eat evcerything you crave and dont worry about calories. Once treatmetns start it can get difficult for some to eat.
Glad you have found OCF. Lots of info here with search engines on the forum and also on the main site. 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: 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 | Mark, Read up on HPV and I suggest you get tested.
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.
| | | | Joined: Jan 2009 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 71 | [quote=MarkInOregon]My doctors are confident that I will respond to treatment and so am I.[/quote]
That's the right attitude to have going into this. Many of us, including me, have gone through the SCC BOT/Lymph Node treatment. I would suggest you look at the signature lines of the members, find those of us who had this type of cancer and read the questions and replies that were posted during our treatments. I did this during my treatment last January and found it to be quite helpful.
You will also find that many of us did not need the follow up ND. I hope your ND will be based on follow up scans. Keep us posted on your progress.
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09. 3/5/09-CT 6/12/09-PET, PEG out 12/1/09-CT 12/6/10-PET 12-8/11-CT 1-4/13-CT (all clean) | | | | Joined: Jul 2009 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2009 Posts: 38 | Thank you all for the kind welcome.
Eating is already a challenge, sore throat was the major symptom that brought me to my internist and biopsy plus two days of dental work have made it even sorer. We are hoping to avoid the feeding tube but almost down to liquids and ice cream before first treatment.
My ENT is very optomistic but at my follow up to the biopsy he proposed we do the neck dissection even with a good result from RT. He said that statistically my avoidance of reaccurance will be improved 10% with the surgery. I am learning that Oncology is the baseball of medicine. Stats, stats, and more stats.
I'd be happy to share doctor referals when we get to know each other better via a PM. I'm a bit skiddish as it is sharing medical information on the internet but appreciate the depth of experience here.
Thanks again, all
Mark BOT Squamous cell, stage IIIa
| | | | Joined: Aug 2007 Posts: 83 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2007 Posts: 83 | Mark:
It appears your diagnoses is very similiar to mine (and planned treatments). I got through this better than most and almost 2 yrs out no real issues. So you can beat this. This forum and the people have great advise and practical experience. My suggestion is to gleam all the info that you can. No matter how great your docs are, the information here they can't provide....they have not gone through the treatments.
I also did a modified ND after treatments, my ENT like yours wanted to triple check, and also clean out any dead tissue. They decide on a case by case basis but with BOT with significant lump in the neck it seems to be the Std. Very minor surgery for me. My weakness at the start of /and during treatments were ice cream and milk shakes. Good luck in your battle.
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Mark: I have very similar cancer and finished treatment on June 22nd. This site was a great help to me. You can do this!!! It difficult, but everyone here will support and encourage you throughout your treatment and after.
I would reconsider your PEG decision. If your throat is already hurting, by week 4-5 it may be extremely painful to to swallow. Having a PEG is no big deal. It's important to keep you weight steady during treatment, and the PEG makes it a lot easier to do.
As you can see, I also had BOT cancer. Please ask any questions you want.
Sandy
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | As the others have said, welcome and sorry you are here! Love your attitude - positivity never hurts. The PEG issue is a very contentous one here - there are several who feel that if you don't have one you are forced to swallow throughout treatment, and there are those who probably would have perished without the PEG. We'll all different.
Agree with Christine - order the Chinese dinner for four - and eat it all yourself! Stock up as the weight will disappear.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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