| Joined: Oct 2005 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2005 Posts: 47 | The cancer returned in january, they thought they got it all, but now they have found it in my jaw (just diagnosed last thursday). they tell me i need to have a part of my lower jaw replaced. i don't have to tell anyone here how scared i am. i will be talking to my surgeon and getting a second opinion this week. can anyone tell me what i can expect? My surgeon is at johns hopkins and will probably be going to GBMC in baltimore for my second opinion. any advice?
thanks so much Gina
scc 4/2004 r side tongue, flr of mouth. neck disection,4 lymph nodes 34x rad,3X chemo 10/2007 r cheek. remove w/graft. 40 HBO dives. 01/2010 r cheek. surgery w/graft 04/2010,surgery remove lower right jaw, reconstruct. 4x chemo 25x rad. clear margins. pet 8/2010 clear July 2012 right side bot cancer. surgery to remove, clear margins 4/2013 Surgery to remove cancer in lymph node near thyroid, clear margins 6/2013 start of rad 25X Chemo 7X
| | | | 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 | Gina, sorry you have to go thru this. Seems like lately there are several OCF members who have had this procedure, including me. I had this done in August and Im still recovering. I may have had a difficult time, so please dont worry it will take you so long to bounce back. I will post more later about what to expect. As in any OC, if you can eat right now is a good time to eat EVERYTHING!!!!!!  Gotta run to HBO. 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 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 | Ask what they will use to rebuild your jaw. Will it be made of steel or from part of your leg. Ask about if a neck dissection will be done. If they will be using a skin graft and where they are taking it from.
Can you please add a signature. Without knowing your history, its difficult to give you info. Have you had radiation? 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 2005 Posts: 58 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2005 Posts: 58 | Gina, I had a complete lower jaw replacement several years ago. They used a bone from my leg for a replacement. I am just fine! The recovery from the surgery was about six weeks and then I began to eat soft foods and gradually added different foods. Now, I eat anything and have no problems. Don't be scared it isn't the end of the earth and you will be fine. Best of Luck
Hacklene
Hacklene
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Hopkins has the top Head & Neck dept in the country and is rated 2nd in cancer care...hard to get better care anywhere really. 2nd opinions are prudent but I'd go with John Hopkins if it were me.
I had this surgery done myself and there can be issues with it, which is why you want the best possible team involved in getting the job done. Don't let fear get in the way of getting this taken care of...read the daily quotes dealing with fear in the Coping section for inspiration if you need.
Best Wishes,
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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Gina,
Good luck with your appointments in getting a second opinion this week.
Hacklene, It is always good to read about successful outcomes following this sort of surgery.
I'm interested in what procedures and treatments you have had as you don't have the information listed in a signature. Thanks
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | You just had 2 people that have had a rough go. Christine ans Eric have been fighting this and as you see, they are both knowledgeable about it. Charm is another great fighter so I am sure you will gain much information from them.
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: Oct 2005 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2005 Posts: 47 | thanks for the posts everyone. they definitely help. what i need to find out is this something that was here in january and my doctor missed it? i just had surgery in january. i am concerned.
i have not heard from my surgeon yet at johns hopkins (he has been out of town for the holiday). I hope to hear from him today. actually the second opinion is the suggestion of my other doctor, Dr. Sciubba. I don't fear the procedure, i guess i am more afraid of what i don't know. how long will i be off work? How painful and uncomfortable will i be? i don't know anything right now and i am driving myself crazy.
i definitely consider myself a fighter. thanks gina
scc 4/2004 r side tongue, flr of mouth. neck disection,4 lymph nodes 34x rad,3X chemo 10/2007 r cheek. remove w/graft. 40 HBO dives. 01/2010 r cheek. surgery w/graft 04/2010,surgery remove lower right jaw, reconstruct. 4x chemo 25x rad. clear margins. pet 8/2010 clear July 2012 right side bot cancer. surgery to remove, clear margins 4/2013 Surgery to remove cancer in lymph node near thyroid, clear margins 6/2013 start of rad 25X Chemo 7X
| | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Gina, have you considered Univ. of Md, Dr. Robert Ord is my doctor and he is truly wonderful, I can give you his # if you want. I will be having surgery again 4/16.....just let me know! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
| | | | 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 | Gina, your questions are good but very difficult to answer. Are you asking your doctors these questions? How much of your jaw is being removed? Will they also be doing anything with yoru cheek as you have had surgery there 2x already? Depending on how much is being taken compared to what was done before, thats the only way to tell you how bad it will be. If you had alot of work done before and the docs are taking alot now then it would be comparable. 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 | | |
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