| 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 | Agreed but often times it is the family that pushes for treatment. The one thing I would say is if it hasn't spread other than in that area (no lung mets etc...) maybe there is hope. Has the cancer broken through the surface of the skin or is it a lump you can see in the jaw area? This to me would make a difference. The tube should have been there from the outset to keep her hydrated and nourished, then chemo and radiation should have been done after initial surgery. It may take her weeks to put weight back on. During this time the cancer will be growing. Hugs to you. Hopefully she gains enough strength to get through it. Cancer is a wasting disease my friend was 65lbs when she died. she was literally a skeleton with skin. It was horrible. If she is already in this state it will be a LONG battle to get back to normal enough to fight. take care.
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: Oct 2012 Posts: 143 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2012 Posts: 143 | In late 2012 they removed a lump in her jaw bone. So her entire right lower jaw is gone. In April the cancer broke through the surface of the skin. 1 as big as a dollar coin and 2 quarter size. They will remove her entire lower Right face from the cheek bone to the jaw bone area. They will get skin from other parts of her body.
What is the difference between breaking the surface of the skin and the lump you can see in the jaw area?
Please explain to me what is going on. They had a conference call with the children and none of the inlaws were invited to come. So I am at a total loss.
Appreciate your input.
Joyce March 1940 to January 2014 A wife, a mother, grandmother and great grandmother. She fought oral cancer from late 2009 to Early 2014. 2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | 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 | Oh Ina! This must be so difficult for you! Im sure you are very worried and with only getting small bits of info you cant put them all together.
What it sounds like to me is that her original mandibulectomy did not get clear margins and the cancer came back. Its only been a few months since her big surgery and its already visible. To me that means they missed some. Thats why usually radiation will follow surgery to ensure it kills all the remaining cancer cells. From what you wrote it sounds like the skin is what will be removed and she will have graphs from other areas of her body. Since chemo alone doesnt kill oral cancer just sometimes it will shrink it, the cancer grew like crazy when the chemo treatments were finished. I hope the upcoming surgery will eliminate all the cancer this time.
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: Oct 2012 Posts: 143 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2012 Posts: 143 | We are waiting for the date when they will insert the PEG Tube. She is so thin and is malnourished. So there is no date for the facial skin surgery. I will keep you guys posted.
Joyce March 1940 to January 2014 A wife, a mother, grandmother and great grandmother. She fought oral cancer from late 2009 to Early 2014. 2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | 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 | The difference is it sounds very advanced if its broken through the skin. Plus this also leaves her open to infection. The surgery you are describing sounds horrendous. Are they still hoping to cure her? If not she is being out through necessary pain and suffering to what end? Admittedly she is probably sick and in pain already - but having them cut her open again just seems unnecessary if its not for a cure. I'm not surprised she's malnourished if she has no jaw and no feeding tube. I do agree the feeding tube is necessary. Hopefully this will buoy her strength. Most people here will tell you that I am an optimist and always push to do what you can but this just sounds so painful, I would be hoping that they are being realistic in terms of being able to heal her. The surgery is a good start but the next step should be rads and chemo... The question is can she handle it. Hugs and best of luck.
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: Oct 2012 Posts: 143 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2012 Posts: 143 | Thank you so much for all your help. Appreciate it so much. The doctors said they are CURING her but prolonging her life. Meaning they will do extra ordinary means just to let her survive, a year, 2 years. No promises.
As of last night, they were deciding on when the PEG tube will be inserted. But the doctors warned them that they can not wait to long since the cancer is so aggressive. However, with her condition of being malnourished she can not have surgery.
My father-in-law opposes to the surgery since she stop breathing several times during her last surgery. She was on a ventilator for more than a week.
Truthfully I do not have any say and they won't listen to me. I was even told before not to tell them any information that I get from the forum since they not want to know anything. That part i do not understand. But for each his own!!
Once again, thanks so much.
Joyce March 1940 to January 2014 A wife, a mother, grandmother and great grandmother. She fought oral cancer from late 2009 to Early 2014. 2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | 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 | I really think (purely based upon years on this site) that they need to forget the PEG; forget this surgery and try and make her as comfortable as possible until the end which I believe is very near.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Oct 2012 Posts: 143 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2012 Posts: 143 | David my in-laws are determined to go all the way no matter how much it cost and regardless of quality of life. For them length of time is more precious than anything. I do not have any say on anything. I am not even allowed to discuss anything we talk about here. So that's how difficult my position is.
But I thank all of you for all your help. I means so much to me.
Joyce March 1940 to January 2014 A wife, a mother, grandmother and great grandmother. She fought oral cancer from late 2009 to Early 2014. 2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Certainly I hope I'm wrong.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Oct 2012 Posts: 143 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Oct 2012 Posts: 143 | Is there a difference of Staging if the oral cancer has manifested in the face/skin? Or that would be the same extent as the lower mandible T4? I am not certain is there affected nodes, or if the cancer has spread to other organs. According to my husband there are no other organs affected by means of MRI. But without a PET Scan will the results be accurate?
Truthfully from former members of the forum, the prognosis of her condition is what? A year? 2 years?
Joyce March 1940 to January 2014 A wife, a mother, grandmother and great grandmother. She fought oral cancer from late 2009 to Early 2014. 2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
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