#66143 11-13-2007 11:34 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hello all, I hope I am in the correct spot now.....I see my surgeons tomorrow about the scc diagnosed Saturday on my soft palete...all prayers are welcome.......Thanks so much....Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#66144 11-13-2007 11:36 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | p.s. I must add that my surgeon, who I totally trust and love, told me this is not a recurrence of the first tongue cancer diagnosed 5 years ago, this is a new one, so perhaps, I am still in the wrong area for posting....HELP!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#66145 11-13-2007 11:48 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | You could always try introduce yourself lol.
I guess getting the same disease twice must be mind blowing Carol although there is a member of the British Mouth Cancer Foundation who has just returned to work after his second battle,NINE years after his first,a real success story,so keep those positive vibes flowing ,and good luck in round 2
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#66146 11-13-2007 07:30 PM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Carol-My thoughts and prayers are with you on this next journey! Stay strong, take on a survivor's attitude and fight like hell! Love, Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#66147 11-14-2007 06:52 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Thanks Kris, trust me I will! Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#66148 11-15-2007 02:24 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Carol
I was informed ...a long time ago ..ok ok 9 months ago ..( NOT SO LONG ) when I went through it ..that generally when we get it again ,Medically they dont call it a reccurance , unless in the same area as the original . Solid tumors such as ours dont generally recur. So we do get a NEW primary . However because it is happnening again we refer to it as a recurrence . where as in leukimia or a non-solid tumor ( one in remisson ) that would techincally be a recurrance . That is my understanding . I too would call it a reccurence as well to me it is because I would be going through it again and it would be H&N cancer.
Either way it dosent Matter 1st , 2nd , 3rd or 5th ..it all sux and they need to find a cure !!! PLease know My thoughts are with you and I was only saying all that to you to explain it as how my Dr expalined it to me.
((((HUGS))))) to you !!
Shar
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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#66149 11-16-2007 07:43 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Shar, yes, that is exactly how my doctor explained it to me....I had made it past the 5 year mark for the tongue cancer, he told me this is a new second primary tumor......I think I was so nervous the first time around, I do not remember being told I could only have the radiation once to head and neck......I am hoping the petscan shows the cancer is contained to that palate area and they get it out of there! Thanks for caring.....Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#66150 11-16-2007 08:03 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Carol....as you know I have been out of circulation for the past few days, and I am behind in responding to your situation.
It seems to me that a second primary, while very, very disappointing and disturbing, would not be quite as alarming as a recurrence. A recurrence would shake me to the core, since it might indicate that the clear field I thought I had was not clear after all, whereas a new primary would mean that perhaps the same factors that created the first also created the second primary, and that it should be just as responsive to treatment as the first.
I sure do hope that's the case for you. When will you know about the treatment plan? I know you are concerned about whether or not you can have radiation again. Maybe, since they seem so certain that it is a new primary, they can totally excise it surgically and will not even need to discuss radiation.
As you know, I did not have radiation because my surgeon felt keenly that he had totally removed the tumor. I think that perhaps palatal tumors are easier to feel confident about. I hope so! I am hanging onto that opinion with all my might!!
Please stay in touch. I am back in circulation now.
XO
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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#66151 11-16-2007 02:36 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Carol
You do not need to thank me for caring !!! that is what I do that is what we all do !! And I as well Never had Radiation ..I am only 9 months out ..so far so good though ...my thoughts are with you daily though and I hope and Pray that you find the strength you need to get through this just as you did the 1st time !!
Shar
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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#66152 11-17-2007 07:10 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Shar and Colleen....well, it is disturbing I have to be honest about it, I am really hoping it is contained on the petscan and the surgery alone with take care of it as I have had my max amount of radiation for head and neck......hoping there are no nodes involved this time....that would be so great if my doctor could go in there get it out and do what he has to do to patch me up....and I could keep going.......we shall see.....thanks again....Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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