| Joined: Feb 2011 Posts: 7 Member | OP Member Joined: Feb 2011 Posts: 7 | My mother was diagnosed for Tongue Cancer in Jan 2011. She had partial glossectomy followed by 30 doses of IMRT and Weekly cisplatin. Her treatment ended May 2011.
Last week (Oct 2011) she went for a regular checkup where the oncologist found a small tumour (around 1.5 cm)on the other side of the neck. The Biopsy result turned out to be positive.
She did her PET scan today. Dr advised that surgery is the only option since she had already completed her radiation.
I am a bit scared considering the recurrence happened within a span of 5 months even after extensive therapy.
Also her radiation and chemo started 7 weeks after surgery, could this have been the cause of recurrence or failure of initial treatment?
Anxious and scared, pls advise | | | | Joined: Feb 2011 Posts: 7 Member | OP Member Joined: Feb 2011 Posts: 7 | Forgot to mention, they took out 30 lymph nodes during the initial surgery and 1 was positive, so possibly Stage 3 Cancer at initial presentment. | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Amit,
Welcome to OCF, glad you found us, sorry you had to!
At this point I would not worry about what the "cause" of the recurrence is, it happens and as many on these forums can attest to it can be beaten a second and even a third time. Let's focus on getting your mom through the recurrence as that's the only thing worth putting mental and emotional energy into at this moment.
Getting a second opinion from the best medical professionals available is THE most intelligent thing you can do for your mother at this point. Second opinions are just prudence anyway however another set of eyes here from the "BEST" cancer center in your area makes sense.
You are in India and I'm not familiar with your healthcare system however we do have posters on this forum (Eshwar!) that are and can help guide you in this arena. I've sent him a PM regarding your post and I'm sure he'll respond as he's awesome like that.
Most important thing for "you" right now is to breath and do not let fear and worry take over and just take things one step at a time.
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: 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 | There are many that have undergone a second round of radiation upon recurrence so it is possible but none of us here are able to tell you whether it's doable with her presentation. I would however seek additional opinions, if possible, to perhaps find a rad doc that may consider that as an option especially considering the alternative might well be death.
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: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Amit, my dad had a recurrence on other side of neck just like your mother however it was after 2 years and a big one (6 cms, it probably went undetected for few months due to scar tissue and otherise also it was asymptomatic). His treatment started with Pallative Chemotherapy (TPF regimen), followed by Radical Neck Dissection and 60 gy/30 unilateral (one side of neck) external beam radiotherapy. Its been few weeks since completion of treatment and my father still having tough time due to re-radiation.
Re-radiation (Neck) is usually not a preferred mode of treatment as it presents several complexities and has significant impact on Quality of life. It is a difficult choice for doctor to make, especially if it is an early recurrence. My dad's doctors checked several times with us if he has already completed 2 years from his previous radiation before deciding to go for it.
Considering the reccurence, chemotherapy alone will not help (otherwise also gold standard is chemo-radiation) and that leaves us with surgery as the best option. The Onco surgeon may be able to get other suspicious tissue samples and mark the tumor bed (they did for my dad: tumor had invaded his Cartoid artery sheath and prevertebral muscles) to plan any further course of treatment including re-radiation.
Treatment failure does leave us with lots of questions but there are no definitive answers. As Eric said, focus on treatment and beat cancer for the second time.
If you need any further help or guidance, please feel free to PM me, will give you contact details. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Just wanted to add that you need to start giving her nutritional supplements. Give her Prosure, Ensure, Resource. She needs to put on weight to go through the treatment and try to keep her motivated (emotional well-being will be your biggest challenge). Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Feb 2011 Posts: 7 Member | OP Member Joined: Feb 2011 Posts: 7 | Thanks Eshwar. Doctors at Tata Memorial Hospital (Mumbai) and Fortis (where IMRT took place) have ruled out re-radiation as it was completed only 5 months back.
We are just waiting for the PET scan+Chest X ray+ECG results and the doctors will give a date for the surgery.
I am praying that all comes up well in the PET scan and other tests.
Thanks for all the advise. | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi just wanted to say sorry about your having to be here. Everyone's right - the how isn't important - but a friend if mine who works fo a cancer dr. Once quoted him... "a recurrence just mean's they didnt get it all " it sounds like that may be the case. Often times when they do a neck dissection and surgery, they radiation the affected areas - they don't radiate bilaterally unless theres reason to. I now this because I had the same surgery your mom did and had I not asked very specifically what my baseline ct was like, I would have received radiation only to one side, as it was there was a very small node highlighting on the other side. so hey rewrote my plan to include both sides. Regardless a nk dissection is he best treatment a his point but I would ask if her first round of treatment included radiation on that side. Good luck.
Last edited by Cheryld; 10-25-2011 08:30 PM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Feb 2011 Posts: 7 Member | OP Member Joined: Feb 2011 Posts: 7 | The first round of treatment included radiation on both sides, hence re-radiation to the neck has been ruled out.
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Amit, your mom will be alright and I am quite certain that PET and other tests will come out fine. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Feb 2011 Posts: 7 Member | OP Member Joined: Feb 2011 Posts: 7 | My Mom PET scan results came out today. Good news is that except the afflicted lymph node in the neck, everything else is clear. Chest XRAY and ECG results are all good.
Surgery is scheduled for Oct 31, doctors mentioned that they will do partial glossectomy and remove lymph nodes upto Level 5. Based on the pathology results after surgery, they mentioned that they could advise radiation (nt sure how this is possible)
Thanks everyone for your help and support! | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Radiation is possible as this is the other side of the neck and did not receive the maximum dose. I am being re-radiated on the same side - different area. I should expect some damage but we'll just have to see. The alternative is not so appealing.
Your mom should be able to tolerate some radiation to this "other" side.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | The Oral Cancer News posted an article about re-radiation, which (who knows??) might be a possibility for your mom. You can read the article here: http://oralcancernews.org/wp/new-guidelines-for-reirradiation-of-head-and-neck-cancer/
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)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Well, I'm living proof that you can have radiation a second time and to the exact same side and even the same place after surgery for a recurrence even if you had the "maximum". So it shouldn't even be an issue if it's going to a different side and location. If they do decide to do radiation a second time, don't be worried by the high GY dosage numbers in the OCF news report. Those guidelines dealt with the situation where surgery for the recurrence was not an option. So the 50 to 60 GY makes sense. In my case, I only needed 25 GY the second time around (compared to 70GY the first time) So your Mom's doctors might use a similar smaller dose the second time. Charm
Last edited by Charm2017; 10-28-2011 10:21 AM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Amit, they will go for unilateral radiotherapy (One side of neck) like they did for my dad. Basically, they will target the tumor bed to leave no chances. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: May 2007 Posts: 132 | Hi Amit, I'm another who has had radiation twice to the same area. I had bilateral radiation as I had tumours on both sides of my neck and jaw. First time around I only had it to the left side of my neck, following a Selective Neck Dissection. My radiation TXs were less than 18 months apart. I had surgery to remove the affected nodes first, but my team didn't do a neck dissection on the right side as they believed that my neck would be too weak with too much tissue removed. I then had radiation twice daily for 3 weeks as an inpatient. I now have a permanent PEG as I have swallowing issues, but I can manage some thickened drinks and soups. I would say that despite this, and some speech problems, I have a very good quality of life. I travel, am physically active, have lots of hobbies and a good social life thanks to my family and some great friends. I'm very grateful to my Surgeons and Radiation Oncologist that they were prepared to go out side of what they normally regard as safe levels of Radiation TX. Without this 'unsafe' treatment I would almost certainly not have seen Christmas 2009.
I have had a total of 14 sugeries for OC (and 6 recurrences - 5 of which were seperate cancers and not remnants of previous disease - the other two were metastic disease to the neck and jaw)so my collaterol damage is not due solely to radiation!
The rewards of aggressive treatment far outweigh the risk of damage as most who have had it will attest. I have never regretted having the TX. I wish you and your mother all the best for the forthcoming surgery and whatever TX is decided on following this surgery.
Sue G
55 y/o SCC LL Tongue 3/27/07 Part. mandibulectomy 9/2/07 Left ND 5/12/08 RT/Chemo Rec LL Tongue 07/09 Part gloss 8/5 & 8/25 Surg 10/28/09 re mets to R neck & L jaw RT & Chemo finished 12/22/09 PEG fitted 05/06/10 L buccal SCC 10/10 freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | Joined: Feb 2011 Posts: 7 Member | OP Member Joined: Feb 2011 Posts: 7 | Thanks for all the information. Mom's surgery was completed on 31st October, and she will be discharged tomorrow. Doctors have removed all lymph nodes on the right side upto Level 5. Sugery performed was partial glossectomy.
Pathological reports are expected on Tuesday based on which doctors will advise further treatment, if any.
For all the cases mentioned above re-irradiation was performed at least after an year whereas in my Mom's case its just been 5 months since the Tx ended. So am not too sure about this, but lets see what the doctors have to say.
Thanks to all again. | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Amit: You have my prayers for good results. Hugs to you and your Mom. juliann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Feb 2011 Posts: 7 Member | OP Member Joined: Feb 2011 Posts: 7 | Pathology results: 2 lymph nodes turned out to be positive with Perinodal extension. Radiation doctors have advised unilateral electron beam radiotherapy approx 20-22 sessions. They will monitor how my Mom copes with it.
Praying to God everything would be fine. Rx to start in 2-3 weeks time as they are allowing tissue to heal after surgery. | | | | 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 | Im very sorry to read of the recurrence. Best wishes with everything you both are facing. 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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Amit: I am so terribly sorry about your Mom, but there still is something they can and are doing for her. I will keep both of you in my prayers. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I agree completely. I am very sorry about your mom, but they are treating her. Good luck and my thoughts and blessings are with you.
Last edited by Cheryld; 11-20-2011 08:32 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Amit, hope your mom has recovered from Surgery and doing well. Have you managed your trip back to India? Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
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