| Joined: Aug 2009 Posts: 4 Member | OP Member Joined: Aug 2009 Posts: 4 | This is my 1st post? I think i am doing this right? My mom was diagnosed with, (prior to surgery) stage 1 oral cancer, on the left side of her tongue. She was diagnosed by her dentist of 40 yrs who is like a family member given his nature. He arranged for her Surgical (DDS) oncologist? appt at UCSF. We all went and he said surgery is the 1st course of treatment. The surgery was scheduled, they removed approx 1/3 of her tongue. I think she is recovering well. She is eating better, but not real solid food, which is to be expected. She doesnt seem to be losing any weight. When we went for the follow up when we were told she is Stage 4a, T4N1M0. The tumor was almost 2cm and they took out over 30 lymph nodes and found (1) to be positve and 2 cm also. As I write this, I realize there is so much I am not sure of, everything happened so fast. Diagnosed and surgery within 5 wks. They referred us to a radiation oncologist, however, the Dr. stated that she, (mom), was on the bubble as far as his recommendation of radiation. He stated that survival rates are 50/50. She is 72 and leads an active lifestyle. My folks live in a remote area of northern calif and I live in southern calif. We have discussed her doing radiation down south, but the Dr says there is nothing like home for recovery. She does have Rhumetoid Arthritis, but you would never know it when interacting with her, and we are concerned about that factor. Her surgery was July 30, 2009 and her Radiation consult is Sept 2nd. We have been reading so much internet info that it makes our heads swim. We have been discussing a second opinion for the radiation. Any suggestions? Thanks to all and well wishes.
Patty, daughter. Mom has Stage 4a T4N1M0, tongue primary, Dx June 09, surgery removed 1/3 of tongue and N/D July 09. Anticipate starting rad in Sept/Oct.
| | | | 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 | Patty,
On the bubble meaning that the doc thinks he can live with seeing if the surgery on her tongue and the ND were enough or concerned about the rad/chemo and her age?
Tongue primaries have proven to be tough in the recurrence dept and if she is a healthy, active 72 and if I were her, I would opt for the rad/chemo.
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: Aug 2009 Posts: 4 Member | OP Member Joined: Aug 2009 Posts: 4 | David, Thanks for your reply. I don't know if it is because of her age or not. Some of these questions are hard to ask in front of her, I don't want her to hear something that would discourage her. She is an upbeat person with a strong constitution, but even the strongest will has the down times. I worry that she will decide she has led a great life and doesn't want to go thru the pain and suffering of rad/chemo. Especially given where they live and the fact that the best option is for my folks to rent a place in town for the treatments rather than drive daily for approx 2-3 hrs one direction. That is why I suggested as an option that they consider moving down my way for the duration. Should I ask the hard questions? Thanks, Patty
Patty, daughter. Mom has Stage 4a T4N1M0, tongue primary, Dx June 09, surgery removed 1/3 of tongue and N/D July 09. Anticipate starting rad in Sept/Oct.
| | | | 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 | Look the Tx only usually lasts 6 to 7 weeks and her bad time will probably be from the 4th week of Tx until maybe 3 to 4 weeks post Tx so that's a drop in the bucket to the rest of her life. Her side effects from the rad and chemo will most likely be some dry mouth and loss of taste so again it's a drop in the bucket compared to the alternative.
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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Patty,
Sorry to hear about your mom.
Some people start to have side effects from the radiotherapy and chemo earlier in the treatment than others. There are no set times, no matter what age the patient. Mine started during the second week of treatment and lasted approximately 3 weeks after - about 7 weeks all up. I also had surgery before my treatments.
The distance they would have to travel daily sounds like a very long time. I think that would be exhausting.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Aug 2009 Posts: 4 Member | OP Member Joined: Aug 2009 Posts: 4 | Thank you Karen,
we have read about IMRT and Tomo radiation treatments. We are trying to do our homework before we meet with the Dr. All the questions seem to arise from our appt, and then it seems like we need to make another appt for the answers. This forum is tremendously helpful.
Patty
Patty, daughter. Mom has Stage 4a T4N1M0, tongue primary, Dx June 09, surgery removed 1/3 of tongue and N/D July 09. Anticipate starting rad in Sept/Oct.
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Patty,
The only way you'll ever know is to ask those hard questions. And yes, home is great, but so is being where your Mom can get the best care. One of the most common pieces of advice given on this forum is to be seen at a Comprehensive Cancer Center for treatment, not a single doctor who just parses out their piece of the puzzle. Radiation is tiring, but its very survivable and I think your Mom deserves to know all of her options.
-Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | 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 | Patty
Welcome to OCF. You will find lots of info here and also on the main pages. There are search functions on each. You mentioned lots of reading. I hope you find everything you need here. There members will guide you and support you thru this. There is alist of cancer centers listed on the main pages.
Since your mother lives in a remote area, it may be necessary to stay closer to where she will be treated. Another resource is the American Cancer Society. They may help with transportation once her treatment plan is devised. Driving 2 hrs each way would be difficult for anyone.
I wish you well and hope everything turns out ok for both you and your mother. 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 | | |
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