| | Joined: Jan 2014 Posts: 7 Member | OP  Member
Joined: Jan 2014 Posts: 7 | What are the odds my husband and I would both have head and neck cancer and squamous cell carcinoma?
My husband, Mark, had stage 3 cancer of the tonsil 6 years ago. He was a smoker. Unfortunately, the radiation treatment damaged his spinal cord and he now has delayed radiation myelopathy.
I have stage 4 cancer of the right cheek, sinus cavity, upper jaw bone and a lymph node. I have never smoked. This was caused by oral lichen planus. I had surgery and reconstruction on November 18, 2013. My tracheostomy was removed a month ago. I am now eating soft food but still use my feeding tube for larger pills and capsules. I will keep the feeding tube in case I need it during the radiation treatments. I will be starting IMRT in two weeks.
I am thrilled to find a forum for oral cancer!
Karalee
10/18/13 SCC Stage IV, T4aN2bM0, right cheek, sinus cavity, upper jaw bone, 1 lymph node, HPV Neg, Non Smoker, Age 62
11/18/13 Surgery - composite resection right retromolar trigone and right selective neck dissection plus reconstruction, margin <0.1 cm
11/20/13 Emergency surgery for ecchymosis of flap
2/12/14 Start IMRT, 30 treatments ended 3/25/14
| | | | | 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 | Karalee, welcome to OCF! I have to say, you are the first one I have ever heard of where spouses both have the same cancer. Even though its in different locations its still considered oral cancer.
You will find tons of info and support here on the forum. Glad you found us to help you get thru this.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Karalee - Glad you found us! It's the best place to be for all the latest information and great support. Keep in touch and let us know how you are doing.
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: 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 (unfortunately!!!) Wow- twice in one family sucks... It is possible that the two are related but normally the type of cancer you have (cheek nasal cavity etc... ) is found to be NON HPV related. While your husband's tonsil cancer often is. So ultimately two different causes- HPV related cancer is often treated with radiation and chemo primarily - though they do generally remove the tonsils surgically first - if that is the primary. With your cancer the first line of treatment is definitely surgery, followed up by rads and chemo as a safeguard - I too had been diagnosed with lichen planus before discovering the tumor in my tongue. I am surprised they haven't already started you on radiation. Normally it is recommended to start within 6 weeks. Just to prevent any growth or spread of anything that may not have been caught during surgery. Mind you over christmas and stuff things do slow down. The one plus to your dance with this twice is you know what to expect (somewhat) It is different going through it - but at least you're not walking into it blindly. Hugs and welcome... plan for the worst - but hope for the best. 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 2014 Posts: 7 Member | | OP Member
Joined: Jan 2014 Posts: 7 | Cheryl, Mark did have just radiation and chemo. He did not have surgery. My surgery included more challenges than I could have imagined.
Yes, my radiation was going to be started 6 weeks after surgery but my RO was on vacation. This week I had to have a tooth pulled that was in the direct line of fire of the radiation would be killed. It won't heal if pulled after radiation. Now we wait another 2 weeks for that to heal. I am not having chemotherapy since my margin was <0.1 cm.
Thank you all for your encouragement and support.
Karalee
10/18/13 SCC Stage IV, T4aN2bM0, right cheek, sinus cavity, upper jaw bone, 1 lymph node, HPV Neg, Non Smoker, Age 62
11/18/13 Surgery - composite resection right retromolar trigone and right selective neck dissection plus reconstruction, margin <0.1 cm
11/20/13 Emergency surgery for ecchymosis of flap
2/12/14 Start IMRT, 30 treatments ended 3/25/14
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Karalee - You are more patient than I was, I hated all the waiting around, first for surgery site to heal, then for this, then for that. At least my RO didn't go on vacation.
But you seem to be handling everything pretty well. It may very well get more stressful later, but that's what we are her for.
Good luck with all that's coming and welcome to the family.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
