| | Joined: Nov 2010 Posts: 74 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Nov 2010 Posts: 74 | Bad news. The bump on my neck that I thought was Lymphedema was found to be more cancer. I had a needle biopsy and a ct scan . havent got results from scan yet so I dont know how far its spread. I am in shock. I just got back to work Monday. I am 2 months out of surgery.
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
| | | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | sorry for that bad news...but you are a fighter, you can fight some more. What kind of surgery did you have? Did you have a neck dissection ?
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi there - it's sucky news big time, but Ingrid's right you are a fighter, I'm not sure the extent of what has been done to you though you indicate surgery and rads two years ago. I'm assuming despite the fact that you're HPV positive, that's not the cause of your tumors, as you were also a smoker and location is usually a good indicator, (was it base of tongue, tonsil, or oropharyngeal? That's usually HPV related) regardless, you can get through this. They can radiate.... Again, or surgically remove the nodes in your neck. I can't remember where you said you were being treated but get to a ccc if you're not there... Hugs.l We're with you through this.
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: 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 | I am so sorry you must go thru this yet again!!!! Ive had it 3 times in 3 years. I know exactly how you feel! Everytime you get better and move on it comes back. Cancer sure has a way of forcing itself into your life, even when it doesnt belong there.
I hope you are going to a cancer center where they have the most experience in treating this. At least this time you know the terminology and have your doctors lined up which is half the battle. They should have also caught it very very early due to having regular check ups. So if you must worry, at least remember the positives of it. Plus this time around you have OCF for correct medical info and support.
Im in your corner, please just ask if you have any questions. 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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Oh no. Having just been and still recovering from the treatment for a reoccurrence ourselves , I know that this is gut wrenching news.
Shout and scream some. Cry. Then face it head on. Push for the best treatment to deal with this. Gather your support crew around. Fight.
I truly hope the scan shows no or minimal spread. I am in your corner , thinking and keeping you in my prayers,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Nov 2010 Posts: 74 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2010 Posts: 74 | I realize my signature is confusing. Heres a quick rundown. I was 1st diagnosed 2 years ago with a sore on my left cheek and my left gum. There was some lymph node involvement. I had surgery and then radiation. One year later I have tumor behind my left jawbone and more lymph node involvement. Had 6 weeks of chemo then surgery where they removed my left jawbone. They took tissue from my right thigh I found the spot in my throat last week, wasnt too concerned, thought it was Lymphedema but had it checked out . They did a needle biopsy and a CT scan. Sure enough biopsy showed cancer. Havent got results back from scan so I dont know how far this has gone.I should find out tomorrow.
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
| | | | | 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 | I am so sorry you need to go thru this again!!!! Your history starts out just like mine! We are both 3X survivors. This is the first time I have ever run into anyone who had it in the same areas as I did. My first round was a tumor in the middle of my left cheek and also up behind my top left molar. I was very lucky and have never had any lymph nodes involved. I noticed your signature says you are HPV16+. Was this in your original tumors? Or was this found in the 2nd round or all 3? Sorry I am just trying to learn more about the HPV+ diagnosis. Ive never seen a HPV+ patient have a recurrence, let alone 3 of them. Usually HPV+ patientss have OC show up in the base of their tongue or in their throat and recurrence is rare.. I wish you all the very best with everything you are going thru right now. It must have been a terrible shock to you to hear you had OC again. I hope it is in its earliest stages and will be very simple to remove. Im also hoping you will recover very quickly and be without pain. Im in your corner so please remember you have me to lean on if you need to. 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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Just want to say that Kris's base of tongue cancer was HPV positive. Yet he too has had a reoccurrence.
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | 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 | Was Kris's 2nd round also HPV+? From what I understand about HPV, its something that can come and go.
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 2010 Posts: 74 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2010 Posts: 74 | CT scan shows it hasnt spread to my lungs and seems to be just at the lump in my throat, I will be meeting with Chemo docs and possibly radiation.
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
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