| Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2003 Posts: 235 | I received a call from my Mom's ENT today telling me that she wants to remove a 1cm lesion from her tongue as she suspects it's cancerous. Crap, as if the past ten years haven't been challenging enough with post treatment issues, now the possibility of a recurrence is looming. Apparently I was under the false impression that after a certain amount of time, the incidence of recurrence might dwindle. The doc told me she sees a bit of it and thought it could be due to the amount of radiation she received. I dunno.
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice. Died 10/13/15. What a long and difficult journey.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Sometimes it happens but this is not a recurrence it's a new primary. Things have changed in treatment hopefully it will be easier this time out.. Hugs!
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Survivors of cancer have a 14% increase risk of developing a secondary cancer due to treatment. For head and neck, it seems the risk increases every ten years, from radiation, but forget the starting percentages the first year. Hopefully it's all clear. Good luck.
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: Jul 2003 Posts: 235 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2003 Posts: 235 | Thank you for the feedback. I thought I had become pretty tough over the years, but again I was mistaken. A sleepless night filled with a big old mess of thoughts just proved that. Time for me to stop whining and pull myself together.
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice. Died 10/13/15. What a long and difficult journey.
| | | | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2003 Posts: 235 | Well, it's official. Cancer again. This time on the tongue. It's more advanced than anticipated. To think a couple of weeks ago I was this close to sending out 10 year anniversary cards in celebration of my mom being cancer free. This sucks. Looks like the options are going to be more challenging than the first time around. The surgical option basically removes a portion of the tongue rendering speech a thing of the past. The possible other option is chemo and radiation -- more toxic than the regimen used for the Stage IV diagnosis in 2003. If my mother is a candidate for this, which she may not be due to previous tx, this could possibly save her tongue. No idea on prognosis as we await a full path report and scan results. This disease is a bitch. Full recovery in her case was never achieved, perhaps due to her age (71 at the time) and the aggressive tx, but the side effects never ended and now to be faced with this crap at 81. It sucks at any age. I realize 81 is a full life, but the last ten years have been far from a walk in the park. Over the past decade I've made friends and lost friends on this forum. It's a great place and resource, yet sadly oral cancer still doesn't get the attention that it needs. Great strides have been made in getting the word out, but it still amazes me that I have to debate a physician about the dangers of HPV and its link to oral cancer. It's scary to know there are health care professionals out there who are still telling people it's still okay to indulge in a practice that can potentially kill them. I don't know where I'm going with this diatribe as my mom's initial cancer could may have been caused by my dad's second hand smoke or from my mom being a closet smoker for a couple of decades. I'll never know and it doesn't matter much. Last night my older sister gave me a lecture on how my mom's limited diet of chocolate ice cream didn't help her situation much. That's the sensitivity that I get from my siblings. Unreal. Instead of being concerned about her mother, she goes off on a rant about her diet. Truth be told, my mom eats a lot of ice cream because she barely produce saliva, she has difficulty swallowing and she hardly has any teeth left. Her options are limited, although she had a g-tube inserted again today. I don't post much for a number of reasons, but I continue to support OCF as I have since I was fortunate enough to find this site in 2003. I apologize for my rant, I suppose I find it cathartic. I'm frustrated, tired, sad. I wish you all well, I really do. Fight the fight and kick some ass. Best regards, D
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice. Died 10/13/15. What a long and difficult journey.
| | | | 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 | So sorry to see your mother is going thru OC again! Its bad enough to have it once but twice or more can be emotionally devastating. I wish you had a better support system. Its stinks that everyone isnt on the same page with their priorities. A cancer diagnosis can really bring out the worst in some people.
Wonders can be done with speech pathologists. You never know, she may be able to talk understandably after surgery. I had a friend who had a glossectomy removing the majority of her tongue and she shocked them all when she was still able to speak. With work her speech wasnt too bad. Ive seen some do amazingly well with a very small portion of tongue. Some get graphs or a free flap if a large section is being taken.
Hopefully your mother is being treated at a CCC. You may want to consider a second opinion too.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Sorry to hear of the cancer confirmation. Like any serous life event, blame is sometimes a normal reaction. I hope this passes, and all can work together.
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: 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 | So so sorry but at 81 or hell 71 anything she wants to eat or do for that matter is OK by me. Be sure and keep us posted on what they say next.
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: Jul 2003 Posts: 235 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2003 Posts: 235 | Thanks, everyone. I was on a roll last night. I have three older siblings who don't get involved much, if at all, and I know she could use their support. Fortunately I have a wonderful wife, OCF and some incredible doctors who look after my Mom. The docs are also great to me; they respond to my emails around the click and another doc gave me her cell number. That's pretty amazing. I'm certainly open to other doc's opinions and once we have the full path report and scan results I will most likely scour the country in search of feedback. I did that last time and fortunately everyone I spoke with, even internationally, spoke highly of the team that we're working with. Nevertheless, it's good to cover one's bases. Thanks again for listening and responding.
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice. Died 10/13/15. What a long and difficult journey.
| | | | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2003 Posts: 235 | I guess the docs consider this a new cancer since the initial was on the cheek and the new one is on the tongue. Initially I was told it was a 1 cm lesion, but apparently it's approx. a 4 cm tumor. Crap. Due to previous radiation and chemo, and a difficult recovery, surgery (removal of the better part of her tongue) seems to be the consensus with the possibility of induction chemo (Taxol). Not quite sure how it's staged at this point, I'm told it could be II or IVa. If the surgery and possible chemo don't do the trick, some follow up radiation could be used, but that evidently could be risky given past history.
I just learned there was "something" that looked suspect in May. Gotta admit, I'm scratching my head a little wondering why "something" that looked suspect wasn't acted on until two weeks ago. Maybe I'm overreacting, over-thinking, etc. I dunno.
Last edited by didier; 07-12-2013 02:33 PM.
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice. Died 10/13/15. What a long and difficult journey.
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