#28621 03-06-2007 04:21 PM | Joined: Apr 2005 Posts: 60 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 60 | It has been a while since I last posted, My husband had his Op in 2005, 1st of April to be exact, it has been a long hard road. Tonight my husband asked if I could give him a shave as he nicks himself by his neck disection scar..... I found a large hard lump (about 25mm wide) under his neck disection scar by the clavicle bone. I just burst into tears, I couldnt help it. I am fearing the worst....... Has anyone had anything like this?
TYVM
C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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#28622 03-06-2007 05:22 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Sammie,
I thinks it was normal to burst into tears I know I would have. However you need to take a deep breathe and call the DR, remember , its not cancer unless they say it is . maybe it is just scar tissue , has your husband noticed it before? I am newly out of surgery, but I have lots of lumps right now. so ask him if it is new ..BUT CALL YOUR DR> My thoughts are with you !! Take a deep breathe you can do this !
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#28623 03-07-2007 05:16 AM | Joined: Apr 2005 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 60 | I called his doctor..... He is out for the week on a family emergency, They are going to get someone else to call me back. I want to get him in ASAP.He went for a check up 2 months ago and got the all clear, He told me that 2 doctors examined him, and now this. Thanks Sharlee for taking the time to post, its nice to know there is someone out there that truly understands what I am feeling, Friends and family mean well, but unless you have been through it...........
C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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#28624 03-07-2007 01:53 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Sammie.....I sure will be thinking about your in the next few days....I hope somebody can see your hubby before the weekend. It's important, an besides, you need the peace of mind of knowing what you're dealing with. I hope it is a normal, like "normal" people have......just a little infection.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#28625 03-07-2007 04:43 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Sammie,
You are welcome ,,Keep us posted, I am glad you called , and as Colleen says maybe you can get in before weekend, so at least you will have peace of mind. And you are right family and friends have the best of intentions and we couldn't do it with out them ,,but they dont truley understand. Specially that fear we will all always carry about the possibility of a "next time" we arent really paraniod!!!! I love the Song by Rob Thomas & Matchbox 20 they say it best when the say " I'm not crazy I'm Just a little unwell". My thoughts and prayers and HUGS are with you !!!
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#28626 03-08-2007 09:51 AM | Joined: Apr 2005 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 60 | Update........ No one got back to me at all so I called again and spoke to the doctors Secetary, she called me back and told me she had contacted my husbands Doctor (still on vacation) and he told her to squeeze him in Monday. I am happy about that, I would rather HIS doctor see him rather than some locum.
Ty again for the words of support....... Will update again when I have any news.....
C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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#28627 03-08-2007 02:52 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Sammie,
I hope and pray that the you receive good news on Monday. My prayers are with you.
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#28628 03-08-2007 03:37 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Sammie,
I am glad his Dr squeezed him in on mon. I hope you will get some good news then ..My thoughts are with you and my fingers are crossed !
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#28629 03-12-2007 02:20 PM | Joined: Apr 2005 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 60 | Not much news I'm afraid, We went to see the doc today, he examined hubby, and he wants him to go for a CT scan, He told us that the fact there is some pain there is a positive  and the mass is slightly movable........ However he said that a reoccurance is a possible  and has to prepare us for that fact. He had been to see his Dr. previous to this episode in the last week in Jan 07 and there was no sign of this. I would also like to add the his Dr. was NOT supposed to be at work today as I previously thought, I was told on the quiet by a nurse, and then by the Dr. That he had come in especially to see my husband.... Doctors like that don't come along every day, I am just pleased we found him. Thanks for the support......will update again when we get CT results in.
C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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#28630 03-21-2007 03:44 PM | Joined: Apr 2005 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 60 | Update: Scan results were inconclusive, time for a biopsy. That will be done Monday. He couldnt do it today as everyone had gone home! Dr. waited for us to arrive ,His office called and we shot down to Miamiwe did not have an appointment.....but he saw my hubby anyway..... Have to nominate this Dr. for an award! Update next week......
C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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#28631 04-02-2007 02:15 PM | Joined: Apr 2005 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 60 | Update: Had the Fine needle aspiration (FNA) results, Negative, said it was a Necrotic? Lymph node, reasons unknown, Last test PET scan, that will be Wednesday, Results they said to come in the following Monday as the office is closed for Good Friday. Any tips or pointers? We are very anxious.
TC
Sammie
C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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#28632 04-02-2007 02:26 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Sammie, this sounds like good news so far-hope you all can set a goal to have a good Easter weekend together, doing something special. Whatever the PET shows, worrying about it for the next 7 days will not change the results. Hoping for the best for you both. Amy in the Oz
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#28633 04-03-2007 01:45 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Sammie,
Necrotic means that the cells have died. I know when my ENT read the path report and got to that word he said, "Oh, I didn't want to see that word!!" I'm not a doc and I assume the cells can die for many reasons but disease is one of the reasons. Remember a FNA may not be able to pick up the diseased cells so I would ask your doc about that if I were you.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#28634 04-06-2007 12:32 PM | Joined: Feb 2007 Posts: 168 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2007 Posts: 168 | Sammie, I say enjoy the Easter weekend with your family. Everything else is shut down till Monday so enjoy each others company. Isn't that what you would be doing anyway. good news or bad don't let this disease take up time it doesn't deserve. You and you family are in my prayers.
Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
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#28635 04-16-2007 03:46 PM | Joined: Apr 2005 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 60 | Last update for a while........It has been confirmed..... its back... we are so upset, hubby is convinced it is all over, am trying to restore his faith and determination to fight this thing.
TC for now.....
Sammie
C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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#28636 04-17-2007 06:11 AM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2006 Posts: 378 | Hi Sammie, I'm so sorry to hear the news and can understand your reactions to it. We all live in fear after a cancer diagnosis - of just about everything. Did they get it all? Is this the best treatment? Am I doing too much or too little? It's hard to find a context for all these emotions. I believe that it is perfectly normal for your husband to feel it's all over with this news but there are new treatments and things coming out of clinical trials every day. This is a very active time in cancer research. It's easier said than done but try not to get too far ahead of the information you have at any given moment. Just like the first time it's still about the location, the type of cancer of they have found, how aggressive it is, and what they think they can do about it. If you don't trust what you are hearing get a second opinion. Tumor slides can be shipped anywhere and you have nothing to lose by doing that. What are they talking to you about in terms of treatment? It doesn't appear that he's had chemo or radiation from your signature so is that an option? Ask about Erbitux because that has been studied in clinical trials with recurrent cancers. Jack and I went to a conference on HNC at University of PA last week and sat with a woman who had survived 3 recurrences. It changed our perspective dramatically. All the speakers stressed how rapidly things are changing. I think you need to feel the shock and emotion of it coming back but don't give up. More people are surviving. Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#28637 04-17-2007 03:45 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Hi, Sammie, I agree with JoAnne, there is always room for hope - if not for a cure, then at least for a way to control the growth of the cancer. In our case, John survived his recurrance for 15 months and during those months we were able to tend to alot of important things we had neglected-estate planning, living wills, powers of attorney, a few trips, etc. Plus, we spent every minute we could together. The outcome was not what we were hoping for, but I am so grateful for the time we had. Wishing much strength to both of you. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#28638 04-18-2007 02:44 AM | Joined: Apr 2005 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 60 | I promise I have not lost hope! They are setting up Chemo, Radiation I did ask about Erbitux, and they said yes they are going to throw everything at it in their arsenal, they also mentioned Cisplatin and others, but we were in such a daze from getting the DX that I am afraid I did not retain too much info. Will call Doctor and find out. Thanks again. Sammie
C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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#28639 04-18-2007 03:36 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Sammie, please keep us in athe loop because we will be thinking about you. Amy in the Oz
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#28640 04-18-2007 04:36 PM | Joined: Apr 2007 Posts: 93 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2007 Posts: 93 | Sammie,
Please do not give up hope, sounds like your husband still has a few options available. It's good that he kept the cancer at bay after the surgery in 2005. My sister has been fighting this cancer for 2 years, 4 surgeries and the cancer kept spreading to another site, she just completed 35 IMRT treatments and 7 rounds of cisplatin. She is improving every day, gaining strength and looking forward to life. Seems they found this tumor early and treatment will begin shortly, I wish the best to you both. The information on this site, now that he will be experiencing chemo and radiation is so informative, I wished we had known about this earlier during my sister's treatment. Good luck and always have hope.
Nancy
Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
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#28641 04-19-2007 09:23 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2007 Posts: 525 | Hello Sammie. Thank You for the e-mail and the hospital info. Thanks for sending your user name. When I searched for it I read about this new misfortune. I am speechless, but you must remain strong. And I know you are strong as you took time to help me in dire circumstances of your own.I will keep you and your husband in my thoughts and prayers.
Sincerely, Petey
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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