| Joined: Dec 2014 Posts: 24 Member | OP Member Joined: Dec 2014 Posts: 24 | My goal is to gather information, assimilate it and develop a strong, strategic plan. My story: I had a knot on the inside of my right cheek for about a year from a cheek bite that never healed properly. It was slowly getting bigger (but not fast and not much) and very painful. I tried everything before finally going to the dentist. He took a cursory look and said all I needed to do was get my wisdom teeth pulled. I pressed him - couldn't you remove it, or biopsy it? No, it will go back to normal after you have your wisdom teeth out. Since I make my living over the phone, it took me awhile to find the right time to get them pulled. As soon as the oral surgeon saw the 'knot' he said I definitely needed to get it biopsied. A few weeks later, I followed through and had it removed. Came back positive and I was referred to an ENT whom I happen to know from a previous visit. Scans are being set up this week (PET & MRI, with & w/o contrast), then staging. ENT also ordered the biopsy be tested for HPV. I am 52, healthy, non-smoker, non-drinker (now - I can't tolerate alcohol or wheat), exercise 3-4x a week (swim 10-38 laps) but could be more physically fit. I am trying to research how to prepare for C&R, wondering about getting a second opinion (what to look for, where to go in Orange County, CA), and what the best complimentary (naturopathic) practices are to support this condition and what is to come. All suggestions are welcome as this is new and very unfamiliar territory.
11/2014 - DX SCC, S3N0M0 Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative 2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later 4/6/15 - Begin 40 Rads & 4 rounds Cisplatin 5/27/15 - rads & chemo complete. 12/5/15 - PET/CT clear. Watch & wait...
| | | | 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, Heather! A second opinion would always be a good plan. Here is the NCI list of top comprehensive cancer centers. NCI CCC List In the meantime, read both here and the main OCF pages to better educate yourself. An informed patient makes for a strong advocate. Best wishes with all your appointments. 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 and welcome - I can't give you advice on the hospitals unfortunately - but there is a lot of info here on chemo and rads. It's highly unpleasant (okay it sucks in a big way) but you will get through it. Naturopathically my advice eat healthfully - bump up your protein, and avoid antioxidants. Ideally this is treated by surgery first, and hopefully they will sample some nodes as well. If there is any concern after surgery they will recommend rads and chemo, 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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome to OCF! This is the greatest and most valuable site for oral cancer patients. Thank goodness it is early days for you so you can research all the info here and take advantage of all the folks here on the forum.
One thing is not to get too far ahead of yourself and it is early for you now. Do read and get informed but until you have your staging, it is very difficult to know what the likely treatment options for you.
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Dec 2014 Posts: 24 Member | OP Member Joined: Dec 2014 Posts: 24 | Thanks folks - appreciate your words & encouragement. Great to know you all are there, venerable veterans of this process.
PET scan tomorrow, will update with results.
11/2014 - DX SCC, S3N0M0 Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative 2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later 4/6/15 - Begin 40 Rads & 4 rounds Cisplatin 5/27/15 - rads & chemo complete. 12/5/15 - PET/CT clear. Watch & wait...
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | If you can add at least your country/state then we can direct more specific replies. Treatment and insurance options vary a lot by your geography.
For example, scan results can be had inside a couple days in the USA, a couple weeks in the UK is not abnormal.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Dec 2014 Posts: 24 Member | OP Member Joined: Dec 2014 Posts: 24 | Thanks for the suggestion, I have updated my location (southern CA - OC to be more specific).
11/2014 - DX SCC, S3N0M0 Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative 2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later 4/6/15 - Begin 40 Rads & 4 rounds Cisplatin 5/27/15 - rads & chemo complete. 12/5/15 - PET/CT clear. Watch & wait...
| | | | Joined: Dec 2014 Posts: 24 Member | OP Member Joined: Dec 2014 Posts: 24 | Scans back, SCC has not spread. Doc thinks we can get away with just surgery (oral & functional neck dissection?), remove nodes for testing, etc. Reconstruction will require flap from wrist.
Has anyone had this procedure? Curious as to what to expect, outcomes, etc.
11/2014 - DX SCC, S3N0M0 Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative 2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later 4/6/15 - Begin 40 Rads & 4 rounds Cisplatin 5/27/15 - rads & chemo complete. 12/5/15 - PET/CT clear. Watch & wait...
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Great news that it has not spread. I've had the surgery you are about to have: removal of cancer from the inner cheek (buccal mucosa) and patching with a flap from the wrist. Of course there's a neck dissection too to check nodes and join blood vessels to the flap. In my case the cancer was at the back and bottom of the cheek and a tooth socket was involved so all my bottom teeth on that side came out. That was also because of the planned radiation therapy. Sounds as if you won't need that.
The surgery is a big thing, not as bad as a glossectomy but still requiring hours of intricate surgery and reconstruction which means it takes about three days to get over the anaesthetic. You will have your affected arm in a cast and a bandage on your thigh or donor site. This is where they get the skin to cover the area in the wrist where the flap graft has been taken. All the wound sites have drainage tubes and bottles so you feel like a walking Christmas tree for a while. (I always walk as soon as I can.)
For a lot of or most oral surgery, nutrition is via a naso-gastric tube for a week or so to give the mouth time to heal. It's okay. Lovely when it comes out!
In my case I had a shaving off the mandible too because the tumour was sitting close to the bone. Maybe it's because of this that I ended up with trismus or limited mouth opening. If you end up with this it's necessary to faithfully follow instructions for stretching.
Hope this is not too much information. Surgeons have this free flap surgery down to a fine art and it's really quite miraculous how they can remove a cancer and patch up the patients mouth, preserving function.
Keep us posted.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | 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 | Yes it's not a fun procedure but very doable - it is a fairly extensive surgery and recovery time is about a week at the minimum, but if you have a great surgeon (surgeons) it should be a fast recovery - post op. I've explained the procedure numerous times on here... If you can't find one of my earlier posts pm me and I'll recap it for you. Best of luck. And 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: Dec 2014 Posts: 24 Member | OP Member Joined: Dec 2014 Posts: 24 | Alpaca & Cheryld - thanks so much for the detailed info. The more information I have, the calmer I feel. I have what I believe is a great doc here at Mission Hospital with the Head & Neck group. Surgery is scheduled for the end of January.
Alpaca - they have mentioned shaving my right mandible to get a cleaner margin if needed. I am wondering how long until you are able to speak normally again?
Also - is there anything I can do to help prepare for this surgery ahead of time?
Thanks again folks - really helps to have your collective wisdom.
11/2014 - DX SCC, S3N0M0 Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative 2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later 4/6/15 - Begin 40 Rads & 4 rounds Cisplatin 5/27/15 - rads & chemo complete. 12/5/15 - PET/CT clear. Watch & wait...
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Hi Heather. I could speak right away after my surgery. It's possible they will give you a tracheotomy but in my case they managed to avoid it. I had that not very welcome device for my hemi-glossectomy and couldn't talk for the first few days.
From the marginal mandibulectomy I have no sign, just a softness on the jawbone where the flap has been placed.
The pain from the jaw can be referred to the ear, I've found, but I can't remember any bad pain from my surgery at all. Not in hospital anyway. After I came home I had to go into Emergency to sort out my medications because the pain manifested itself then, in jaw and ear, about 10 to 14 days after surgery.It was easily fixable with Oxycodone.
To prepare? Enjoy your food because you will be on soft rations for a while. Maybe look into mindfulness and other relaxation exercises for the week or two in hospital and during your recuperation thereafter.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | 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.. Based on location they may or may not trache you. Usually if they do it's simply to keep the stress on your healing sutures etc - to a minimum. If you have a trache you'll likely need something to speak with for the first few days depending on the type of trache. I would bring an Ipad or a pad of paper and pen. make sure they stay on top of any pain you have. We all handle it differently so I can't give specifics, but I was for the most part numb and didn't need pain meds after day two or three. I asked them to stop. But some people definitely need them.
sleep as much as you need, continue the healthy diet, and try to be patient - it takes time to heal.
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
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