| Joined: Sep 2013 Posts: 1 Member | OP Member Joined: Sep 2013 Posts: 1 | Hi, I've read this board for awhile but first time posting. I'm looking for some possible advice. My partner was diagnosed with Stage III tongue cancer (secondary to chronic gvhd due to a bone marrow transplant from childhood leukemia). He had a partial glossectomy, ipsalateral neck dissection and radiation with clear scans since Feb of this year. Last month he started having parasthesia on the side of his tongue where the tumor was removed. He went to see his oral surgeon and had an MRI and everything looked ok. He went back this month for a follow up and had severe pain at the base of his tongue with palpation. Dr said he wanted to do another MRI. I've noticed since then he has been complaining the pain is getting worse especially when he eats. He has also been getting more lymph edema. He had it severely after radiation and neck dissection, but hasn't had any issues with it for a few months until recently. His speech is also harder to understand although that has been the case for a few months. Are these common side effects or possible signs of a reoccurrence? Could it have come back that fast after a clean scan? He refuses to call his Dr and try to make an appointment because he says he would rather not know because he knows it will be bad news. Any suggestions for ways of support or encouragement to make the appt? I know it is his decision to make, but avoiding it seems like it would only be worse.
Thank you all for your help! This seems like a very supportive place and I know it has been very helpful to me reading it the past few months.
Last edited by Olak; 09-30-2013 08:56 AM.
| | | | 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 | Welcome Olak. Anything is possible, and may be nothing, but any symptoms, especially if lasting more than 3 weeks, should be brought to the attention of his doctor(s), which was done. I had recurrences only one month after a clean scan, others less than a few months, so time is no indication it's not a recurrence, not saying it is, but he needs to have an MRI, as the doctor suggested, to start ruling out cancer, if not, there will always be wonder, and what may be treatable now, may not be by waiting too long. Good luck.
Last edited by PaulB; 09-30-2013 09:29 AM.
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: 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! Glad you have found this site to get info.
Your partner needs to see his doc. Its important to follow up closely for at least the first couple years after going thru treatments. It could be anything or nothing more than scar tissue. If it would be a recurrence by not taking action could make something that is easily treated turn into very serious situation. Sometimes scar tissue builds as a patient heals and becomes painful. Best thing to do is go get checked and put those fears to rest by finding out exactly whats wrong.
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: 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 there - the lymphedema, and parathesia could very much be related to surgery and treatment. They cut your tongue and muscles in your neck and remove a bunch of stuff then then cook it!!! the parathesia could be related to nerves coming back to life - or nerve damage. Lymphedema could worsen it. Or he could have an infection. I'm going to triple the motion - it's possible it's nothing but he should see his dr. No need to suffer, and if he does have an infection it should be treated. Paul answered your question about recurrences and I know this is always a fear, but he needs to be looked at. Hugs and hoping for the best!
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
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