| Joined: Oct 2012 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2012 Posts: 33 | I had a ct scan after a biopsy which showed a recurrence of cancer 5 weeks post-op. The ct scan showed that there is a tumor roughly the size of a lime on the back of my tongue (in my throat) protruding into my neck. I still have post-op swelling from the neck dissection which I thought was normal but today the RO felt it and said he could feel the tumor by touching my neck. He said he and the ENT were shocked that it came back so quickly. That's not comforting to hear.
Further surgery at this point is pointless because I need the radiation and chemo to shrink it and kill whatever is floating around in that area. He has decided to up my dosage to 7000 and for more than 7 weeks of treatment. He and the MO decided to give me Paxol along with the Cisplatin for longer than 7 weeks as well.
This was all so hard to hear after my first chemo treatment today. I was so tired and nauseated. Then I hear the beatch is back to get me. I just have to keep that image of me in boxing gloves constantly fighting her until she's a bloody pulp of a shriveled tumor, never to return again. I'm going to survive!!!
10/2/12 Surgery Dx Stage II SCC RLT 11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa 11/22/12 Hospitalized for infection incision at neck 12/5/13 PET scan tumor at BOT 12/26/12-2/27/13 RT and Cisplatin 4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU 7/19/13 Pet Scan possible recurrence 8/23/13 2nd op at MSKCC, CT Scan 8/31/13 MRI. Both show sizeable mass 9/11/13 CT-guided needle BX + SCC 10/1/13 Erbitux, Cisplatin and Taxotere 2/14/14 Passed away
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | So sorry to hear the news Katie but keep the gloves on for now...take them off if you have to! You are surviving!
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Katie,
I had to start a new round of radiation 5 weeks from finishing 33 treatments of IMRT (it didn't get all the cancer). I know how disapointed you are and how tough this decision can be. We fight so hard to gain the upper hand on this disease and then have to get back in the ring so quickly.
I remember thinking "if I could just have a little more time out of treatment". Of course that's not in the cards so we put on the gloves and get back in the ring.
I'm 11 months out from that round with the beast and am still pulling clear PET scans so it was worth it. I hope you get good results from your latest efforts. Good Luck.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Katie
Sorry you are joining the recurrence club. Hang in there. You are getting a normal dose of radiation (7000 rads or 7000 cGY or 70 GY) similar to what most posters have had here, which is good, because once you get over 77 GY (or 7700 rads or 7700 cGY), the chance of necrosis goes up . Personally, the lower number of Gray (GY) seems less scary than the 100 times bigger number some radiologists use.(1 GY equals 100 rads or 100 cGY). Good for you in having that visualization technique of the boxing gloves,Keep punching and you will beat this. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Katie - think of us all as your corner men and women. You'll get through this!
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | 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 | Katie, I am so very sorry to hear you are going thru so much in such a short time frame! This whole thing stinks!!!! Ive gone thru having oral cancer 3 times in 3 years so I know the emotions you are dealing with. Im very glad you have a positive fighting attitude. Im a firm believer that this really does help the patient (not sure if it has ever been scientifically proven or not). On one of your other posts you were asking about some food ideas. here is a list of easy to eat foods. Many of these foods are soft and have a smoother texture which will make them easier to eat and swallow. Easy to Eat Foods List Please stick with us and we will help you get thru this. I will be happy to help you with any questions you may have. If you need any feeding tube tricks I even have a few of those too. Im very glad your sons are home with you for a while, Im sure its very comforting to have them home. My son was the very best while I was going thru treatments. He even joined OCF to give updates on my condition when I was stuck in the hospital for 2 months for my mandibulectomy. I still get teary whenever I go back and read his posts. Enjoy the time you have with your sons. Best wishes with everything!!!
Last edited by ChristineB; 12-29-2012 09:45 AM.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | It's good the Docor'd recognized the tumor from the CT, and physical exam, and responded with a more agressive treatment. Good luck with your new treatment plan.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | So glad they caught it right away... Sounds like it might have been there all along but wasn't caught - regardless hopefully rads will do what it has to. Hugs and prayers to you!
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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