| | Joined: Jun 2015 Posts: 17 Likes: 1 Member | OP  Member
Joined: Jun 2015 Posts: 17 Likes: 1 | Hello My name is Charm,
My husband is Steve and he was diagnosed with lip cancer in situ in Feb 2013 and 8 months later diagnosed with stage 4 soft palate cancer/tonsil cancer with nodes involved. He completed treatment in Jan of 2014 (35 rads 3 seven hr long cisplatins). He developed osteoradionecrosis of the maxilla 30 HBOT and had surgery this past April. He just keeps moving forward. Last week the radiologist saw some red patches on his soft palate and wants to see him again in 6 weeks. The radiologist also ordered a low dose ct of his chest. I think that is standard. Steve just had a case of Thrush and I'm thinking the Dr.probably wanted to give a little time in between his next visit for the recheck. I noticed most warriors on this site have been treated for BOT cancer. I am just wondering if there are any stage 4 soft palate cancer patients. I just would like some feed back of how everything is going for them. I am having some fears and I can tell my husband is a little nervous. I admire all the strength of head and neck cancer patients and just wanted to know if anyone would share with me. Thank you, Charm
Last edited by ChristineB; 09-28-2015 01:32 PM. Reason: removed last name
Husband diagnosed 2/13 lower lip scc in situ 2 surgeries never scanned. 8 months later diagnosed soft palate scc stage 4A, tonsil and nodes involved. Hpv positive. Told by ENT small t1 tumor brought in to surgery for tumor removal and neck disection. Aborded surgery. Stage 4!! Finished rads and chemo Jan 2014. Grade 4 ORN of the maxilla, 30 HBOT , sinus surgery , maxilla surgery, buccal flap 4/2015. Doing good. 9-2015 red patch on soft palate , waiting to see.
| | | | | 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! We have members from all over the world who have had their cancers not just BOT but many had it on the soft palate, gums, lateral tongue, cheeks, etc. There are so many variables that go into the mix that often its comparing apples to oranges when comparing patients. We have several members who have had their cancer located on their soft palate so hopefully one of them will respond soon.
Thrush is common in OC patients. For most, thrush usually clears up in a few days with prescription meds like nystatin, ect. Some patients with weakened immune systems take a bit longer to kick thrush.
Im concerned that the red patches were not given enough attention, especially for someone with your husbands history. I advise to make an appointment with the ENT to check out those patches. My other concern is with your husbands history of recurrences that waiting 6 weeks is too long. The rule about mouth sores goes like this... Any sore in the mouth hasnt resolved itself within 2 or 3 weeks needs to be checked by a professional. You are correct, the chest xray is fairly common for check ups.
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 2015 Posts: 17 Likes: 1 Member | | OP Member
Joined: Jun 2015 Posts: 17 Likes: 1 | Thank you Christine. I think 6 weeks is too long also I'll have to see what Steve thinks about moving a little faster on it. I don't like to nag him. It's all so overwhelming.
Husband diagnosed 2/13 lower lip scc in situ 2 surgeries never scanned. 8 months later diagnosed soft palate scc stage 4A, tonsil and nodes involved. Hpv positive. Told by ENT small t1 tumor brought in to surgery for tumor removal and neck disection. Aborded surgery. Stage 4!! Finished rads and chemo Jan 2014. Grade 4 ORN of the maxilla, 30 HBOT , sinus surgery , maxilla surgery, buccal flap 4/2015. Doing good. 9-2015 red patch on soft palate , waiting to see.
| | | | | 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 | Im always very cautious about spots or lumps. Its so much better to get it checked out and find out its no big deal than to sit around worrying. I always err on the side of caution. Maybe if you present it to him like this... Lets get the spots checked out just to rule out anything serious. Why sit around worrying when a quick biopsy will tell us exactly what it is so it can get fixed while its small. You know him best and know how to manage these things.
Good luck:)
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Welcome!
Sorry to hear about the struggles of your husband. Ditto on getting some more exams before six weeks. Good luck
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: Jun 2015 Posts: 17 Likes: 1 Member | | OP Member
Joined: Jun 2015 Posts: 17 Likes: 1 |
Husband diagnosed 2/13 lower lip scc in situ 2 surgeries never scanned. 8 months later diagnosed soft palate scc stage 4A, tonsil and nodes involved. Hpv positive. Told by ENT small t1 tumor brought in to surgery for tumor removal and neck disection. Aborded surgery. Stage 4!! Finished rads and chemo Jan 2014. Grade 4 ORN of the maxilla, 30 HBOT , sinus surgery , maxilla surgery, buccal flap 4/2015. Doing good. 9-2015 red patch on soft palate , waiting to see.
| | | | | Joined: Jun 2015 Posts: 17 Likes: 1 Member | | OP Member
Joined: Jun 2015 Posts: 17 Likes: 1 | Christine mentioned in her post regarding my husband that his 2nd oral cancer was a recurrence. I have always thought that and not one of the doctors we were seeing would admit that to me when he was diagnosed the second time in 8 months. That had always grinded me. Steve seems good but very fatigued. Work is slow and he is stressed. He's still waiting for his Nov appt to follow up with the dr about his red patches and he doesn't want me following him around with the flash light looking in his throat. I treasure everyday we have together. And I must say for everything he's been thru he does live a qaulity whole life and we are great full. I will update the post once he follows up with the rad dr. Thanks for listening. Oh and his chest ct scan was good.
Husband diagnosed 2/13 lower lip scc in situ 2 surgeries never scanned. 8 months later diagnosed soft palate scc stage 4A, tonsil and nodes involved. Hpv positive. Told by ENT small t1 tumor brought in to surgery for tumor removal and neck disection. Aborded surgery. Stage 4!! Finished rads and chemo Jan 2014. Grade 4 ORN of the maxilla, 30 HBOT , sinus surgery , maxilla surgery, buccal flap 4/2015. Doing good. 9-2015 red patch on soft palate , waiting to see.
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Charm, adding my welcome to the OCF family. We're here for any help and support you might need.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | The reality is this... Most drs don't like to admit it... but an oncologist i know here actually said... there is no such thing as a recurrence - all it means is - they didn't get it all in the first place.
and often the second time around it usually rears it's head within the first 18 months - at the outside 3 years. Anything after that could mean its a super slow growing cancer or it's a new cancer.
I too would push to have the spots biopsied asap. Think about it - you wait for the thrush to go away and then have to wait up to two weeks for results... that's easily two months before dx if it is a recurrence.
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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