| Joined: Dec 2010 Posts: 24 Member | OP Member Joined: Dec 2010 Posts: 24 | Thank you so much Christine, Your endless support on this site is very evident from all the posts you made and the countless people you have helped. You are a true inspiration to me. I did check out the cancer centers site. I am currently going to the University of Chicago Medical Clinic, which is on the list, but not rated. There are no other centers within driving distance. Having researched my team of doctor's at U of C Medical, they do have impressive backgrounds. Perhaps I was too quick to judge my surgeon, I found out she was one of the doctors that saved the tongue of famed Chef Grant Achatz by a series of radiation and chemo combination treatment. Here is a link below with some details. http://www.uchospitals.edu/specialties/cancer/patient-stories/grant-achatz.html I realize now thanks to your comments and all the posts that I need to stop being a downer and get on top of this and trust the experts that deal with this day in day out. I am meeting with Dr. Blair on Tuesday to go through timing and exactly what needs to be done. I will post next steps next week. Thanks again for all your help.
2001 age 30 SCC on LS Tongue, non smoker, casual drinker. Partial glossectomy 2002-2006 yearly Lichen Planus, 8 surgeries, PDT for 6 mths 2007 1/4 glossectomy, neck dissection, radial forearm flap, 18 nodes removed, trach 2009 erythroplakia gums, 3x cut 2011 SCC gums,recovering surgery Feb
| | | | Joined: Dec 2010 Posts: 24 Member | OP Member Joined: Dec 2010 Posts: 24 | Thanks Slim for sharing your story and your words of encouragement. You are right, I need to be more open with my loved ones. I have always been holding back, fearing that I would be worrying them too much. I realize now that if I bottle everything up or minimize the details, I am worrying them even more.
It really is inspiring to me to hear from caregivers as well, you not only provide care for your loved oones, but also give a hoot about others facing the same struggles...it really is nice to see that people do care...gives me hope for humanity.
Thanks again, HGT
2001 age 30 SCC on LS Tongue, non smoker, casual drinker. Partial glossectomy 2002-2006 yearly Lichen Planus, 8 surgeries, PDT for 6 mths 2007 1/4 glossectomy, neck dissection, radial forearm flap, 18 nodes removed, trach 2009 erythroplakia gums, 3x cut 2011 SCC gums,recovering surgery Feb
| | | | Joined: Dec 2010 Posts: 24 Member | OP Member Joined: Dec 2010 Posts: 24 | Thanks Connie for your post,
Looks like you went through a similar experience. You are right, I told my wife about my fears and her words were that we are in this together, we will get through this, who cares if we go bankrupt as long as we got eachother.
Best,
HGT
2001 age 30 SCC on LS Tongue, non smoker, casual drinker. Partial glossectomy 2002-2006 yearly Lichen Planus, 8 surgeries, PDT for 6 mths 2007 1/4 glossectomy, neck dissection, radial forearm flap, 18 nodes removed, trach 2009 erythroplakia gums, 3x cut 2011 SCC gums,recovering surgery Feb
| | | | 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 | HGT, I am so glad to read of your complete turn around!!! Im happy you came clean and talked with your wife. I bet you feel like the weight of the world is off your shoulders. Best wishes with everything  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: 5,264 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 | HI... I'm a first timer too. Just starting the process and have to say as radical as it sounds - I am more than willing to do whatever it takes. I am fully prepared (on a mental level - as I know physically it will be gruelling) to have a Hemiglossectomy, and a neck resection if the doctor recommends it. To top it off Radiation will also be something that I seek out - also if recommended by the DR... and if not I will be wanting to know why. This is a battle. I feel do whatever you can for the best possible outcome. I know the route this particular cancer takes to spread. So if you have to remove healthy nodes do it. and a gland DO it. I am an actor so I admit I am worried what the scarring will look like but bottom line - I am wiling to deal with whatever the fall out from the surgery will be. I know if you are a husband and father or the soul income in your house hold it has got to be excruciating but I think family would be willing to give up a lot to have their loved one with them. So any advice for info for a newbie?
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: Dec 2010 Posts: 24 Member | OP Member Joined: Dec 2010 Posts: 24 | Hi Cheryl,
Are you going to Princess Margaret in Toronto? My initial problem was on the left side of my tongue as well. I had a radial forearm flap (tissue and skin from wrist to replace 1/8th of my tongue) procedure done a few years ago. It was recommended by a DR. at Princess Margaret, and I had it done in London, Ont. Although I thought it was overkill, it did give my tongue more mobility. Plus I can grow hair from inside my mouth (how many people can do that? lol)
All the best with the scans and your DR. visit, would like hear about your next steps.
Best, HGT
2001 age 30 SCC on LS Tongue, non smoker, casual drinker. Partial glossectomy 2002-2006 yearly Lichen Planus, 8 surgeries, PDT for 6 mths 2007 1/4 glossectomy, neck dissection, radial forearm flap, 18 nodes removed, trach 2009 erythroplakia gums, 3x cut 2011 SCC gums,recovering surgery Feb
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Cheryl, You sure are starting off on the right foot and with the right attitude to whip this stuff. I am in your corner from the get go. Just let your family know how much you appreciate them and their support. Making them feel good will enable you to feel much better and es[ecially when they treat you in a normal fashion. You sound like me and don't want pity but a little help at times . Heck, I still fight with this stuff and my family backs me but not against the wall. LOL Good luck and keep us informed about your progress.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | hgt - I'm so glad you have such wonderful support from your wife and your daughter. Even though we spare the little ones the details of an illness, they can be very perceptive in sensing when things are not quite right. And the words that come out of their mouths at just the right time can be a revelation in the compassion they feel for the people they love. You do have someone very special in that little girl of yours!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | HGT I want to give you hope. We are very similar you and I, very close in age, we have a young family and we both make our living in sales. Like you I worried that I wouldn't be able to return to how I made my living after cancer. What I've realized after I actually did become disfigured, my speech severely affected and suffering all of the side effects from radiation...is that it actually made selling easier. Trust me I don't recommend it to boost your career or anything but I'm just saying it's not the end of the world  I was a decent salesman that lead to some success in business. What I find now is that I have to use less sales technique to break down objections because people see the story my face tells. It's a powerful thing really and I find it very easy to get the answers I want...one of the reasons I wear my scars proudly. Do whatever it takes to beat this shit. Living is the goal, as long as you're alive you can figure out the rest  Good luck my friend, 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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | HGT, You have been given a lot of great info here. I am so glad that you are seeking out other opinions. I know this is no fun, but what is the alternative. I like you have young kids and am young myself. I also understand the fear of work as I am a teacher and have to talk everyday. However, I did not have a major surgery like you may be looking at, I am teaching again with an accent. The cool thing about, the kids noticed my accent right away and they thought it was cool. Yeah, some words I can not say and they have been awesome to finish the words for me. I say all this to say that you can and will get through this. We are here to help each other and support each other thought it all.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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