| Joined: Mar 2014 Posts: 6 Member | OP Member Joined: Mar 2014 Posts: 6 | Hi all First I want to thank you because I learned a lot from reading from your personnal experiences and advices. My brother (52 years old) was diagnosticed with oral cancer on his left tonsils and a metastase on a cervical ganglion in October 2013 .He since had 3 neck surgery couldn t get a clear margin and had radiation (70 Gy over 7 weeks) and 3 cycles of cisplatin.He just finished treatment didnt get Gfeeding -had to be hospitalised for severe pain and dehydratation.I just came back from visiting him and although he is weak I know he is going to gain his strength back.I can tell he is worried about the efficacy of the treatment and since there are no marker what are the best way to monitor that the cancer is not coming back.What is the schedule?and which test are done?Thank you so much for your answers.
51 years old brother Dx 10/13 ,HPV+ tonsil T1 N2 M0 3 surgeries 11/13 (no clear margin) 1/14 started rad:70Gy and 3 cycles of cisplatin finished treatement 3/14
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, cocofrance First of all, welcome to the OCF - glad you are here, sorry you have to be. It is wonderful you were able to be with your brother to help him. It must be hard to be so far away now. If you go to this page on the OCF website - http://www.oralcancerfoundation.org/treatment/guidelines.phpand scroll down a bit, you will find a .pdf on Treatment Guildlines. If you click on it and look at the follow-up recommendations, you will see that, typically, a physical exam would be performed every 1-3 months during the first year. In the US, it is common for a follow-up MRI or PET/CT scan to be performed about 3 months after the completion of treatment. It is possible for both of these to show false positive, but if they are clear it is a very good sign. Best wishes to you both. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Mar 2014 Posts: 6 Member | OP Member Joined: Mar 2014 Posts: 6 | Hi Maria Thank you so much for the advice.Will be most helpful.I think now that treatment is done he was expected his oncologue to reassure him and it wasn t the case last week.Doctor was vague if cancer can come back and where...He just finish his last chemo on 3/4 so I think he will get MRI or PET/CT scan in 3 months. Thank you so much for your response Corinne
51 years old brother Dx 10/13 ,HPV+ tonsil T1 N2 M0 3 surgeries 11/13 (no clear margin) 1/14 started rad:70Gy and 3 cycles of cisplatin finished treatement 3/14
| | | | 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 | Welcome to OCF. Im sorry your brother has been thru this.
The fear of a recurrence is something we all deal with. After going thru the brutal treatments its one of all of our worst fears.
After finishing rads, recovery can be a long road. It can get frustrating having ups and downs. Seems like every time a patient begins to feel human again, they will take a couple steps backwards. Usually after about 3 months post rads most patients are doing much better and 6 months post rads, they are even better. A complete recovery can take a full 2 years for everything to get back to as normal as it will be for the patient.
Best wishes to your brother with his recovery. 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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Cocofrance - welcome to the family. I am 3 months post radiation treatment (no chemo) and am seeing those after treatment effects discussed above, though they are only mouth and throat tenderness when eating. Improvement seems to be coming slower than I expected.
With multiple surgeries and then both radiation and chemo your brother may be uncomfortable for awhile to come.
If he is capable, get him to join this forum also. The direct contact between him and others will be beneficial to him in ways a caregiver can't address.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Mar 2014 Posts: 6 Member | OP Member Joined: Mar 2014 Posts: 6 | Hi Thank you for your responses.I just wanted to make sure that in France the follow up is to the same standard than in US.So it seems that a PET scan to be peformed 3 months after treatment and physical every 1-3 months and check his TSH level. What is your take on PET scan versus MRI or CT? Is it nocif for health? My brother english is not that great otherwise it would be great for him to join. Thanks
51 years old brother Dx 10/13 ,HPV+ tonsil T1 N2 M0 3 surgeries 11/13 (no clear margin) 1/14 started rad:70Gy and 3 cycles of cisplatin finished treatement 3/14
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | If where you are treated they have all three pieces of equipment then you are lucky. I hope others will weigh in on the benefits of one approach over the others.
Where I am treated they have only CT available; so I've never yet had an MRI or PET.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | There is general consensus or set standard for scheduled scanning after treatment with a PET/CT, MRI or CT scan, in absence of any suspicion for cancer. NCCN guidlines do recommend post treatment scanning, 3-6 months, but only for T3, T4 disease for oropharynx, larynx cancers, and oral cancer is not mentioned as one. It's basically up to the doctor, and hospital's policy. They do have other set scheduling for physical, visual and palpable examination the first year every 3-6 weeks, then progressively further apart each year, and chest x-ray yearly, TSH testing at least twice a year.
My scanning at several CCC seem to be 3 months post treatment, then 6 months after that. I never made it past that without a recurrence, but it would go to yearly, probably after the first year. Mine were all PET/CT scans, around 14, but one time I needed an MRI to help identify a smaller area that was too scattered on the PET scanning. My ENT wanted to do a CT last time, seems they alternate PET/CT then a CT, but my RO insisted on a PET/CT, which is highly sensitive, and can detect cancer as small as 5mm vs CT and MRI that is usually larger than 1cm. The PET did identify a tumor that was 3mm x 7mm in my cervical neck.
As to which type they use also depends on what thier looking for or at. In genetal CT is good for bone, is the cheaper and most often used. MRI is good soft tissue, blood, and vein lines, PET/CT the whole body. CT and MRI may show false positives after surgery since they may not be able to differentiate between that and a tumor, but the PET/CT works on metabolic activity, but can show false positives too due to being highly sensitive. In general, the least accurate is a CT, then an MRI and PET/CT, but again depends, and sometimes more than one type test may be required. Upon diagnosis I had a CT showing tumor activity, but then was a sceduled for a PET/CTto show the whole body activity, and scope larger than the CT.
I hope this helps.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2014 Posts: 6 Member | OP Member Joined: Mar 2014 Posts: 6 | Hi I can't tell you how much I appreciate all your responses. Thank you Paul for your detailed answer it is most helpful!I now have a better understanding of the follow up schedule. One more question I am going to throw there, he started to take some aloe vera berberis drops.I am a pharmacist and told him that I didn t think it was a good idea because I read that the aloe latex can be mutagenic.Anybody has an opinion? When you are not feeling good it is always easy to hope that you found the miracle drug . Best wishes for all of you.
51 years old brother Dx 10/13 ,HPV+ tonsil T1 N2 M0 3 surgeries 11/13 (no clear margin) 1/14 started rad:70Gy and 3 cycles of cisplatin finished treatement 3/14
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | As you well know, the problem with herbals and vitamin supplementation is that in general, we don't really know, one way or another. For example, if you google 'vitamin E neck and neck cancer' you will find a variety of studies with conflicting results. My husband's MO basically said no extra antioxidants DURING treatment. Since your brother is past treatment, it is probably not as critical, although the mutagenic part would flip me out. I know this isn't much of an answer. Before his death, my dad (who scorned the medical establishment) took all sorts of stuff. I would carefully look up each new item so see if there was anything alarming associated with it. If there was, I would print the article, and give it to him, but at that point it was his choice, and my nagging him would have been counter-productive. Take care, Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | 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 | I have sent you a private message (PM) a while back. Please take some time to review it and read thru the link. It contains important info, including how to add a signature. This is a very important tool in helping us to help you.
To get your messages, look next to the "My Stuff" tab, towards the middle of the top. You should see a tiny flashing envelope. Click in the envelope and you will get your messages.
As far as adding supplements to your diet, its best to check with your physician and use caution. What works for one person may not work for someone else. Your doctor has your complete medical history and knows you best. The doc also knows what things can interfere with your treatment and possibly cause a severe reaction. Even some vitamins are to be avoided during treatment as they can cause some serious problems with diluting the strength of treatments.
Best wishes!!! 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: Mar 2014 Posts: 6 Member | OP Member Joined: Mar 2014 Posts: 6 | Hi all would like to understand why some doctors want to leave the port in place for 2 years and some offer to take it out 2 months after completing treatment.Any thoughts? Thank you!
51 years old brother Dx 10/13 ,HPV+ tonsil T1 N2 M0 3 surgeries 11/13 (no clear margin) 1/14 started rad:70Gy and 3 cycles of cisplatin finished treatement 3/14
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | I had to keep mine until I got my final PET scan. My MO explained that they wanted the port available if my scan showed any remaining cancer (which would then require more treatment, including more chemotherapy.)
I had it removed as soon after my clean scan as I could arrange it, 10 days.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Mar 2014 Posts: 6 Member | OP Member Joined: Mar 2014 Posts: 6 | Hi Just wanted to post how helpful this forum is.In June my brother had a PET SCAN.It came back suspicious in throat and lungs.They did 3 biopsies in throat and gave him a course of antibiotic for the lungs to see if it will clear hoping that it was just an infection in lungs.Of course it was stressful to think that he could have a recurrence so soon after finishing treatment.Well it was helpful to see in forum that often the PET SCAN gave false positive.I kept repeating it to my brother and the family over and over until we got the results back and we were very lucky because when the results came back it was indeed a false positive! Thank you for the informations!
51 years old brother Dx 10/13 ,HPV+ tonsil T1 N2 M0 3 surgeries 11/13 (no clear margin) 1/14 started rad:70Gy and 3 cycles of cisplatin finished treatement 3/14
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 |
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | 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 |
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Huge sigh of relief for you all. Fantastic news. Thankyou for sharing.
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
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