| | Joined: Dec 2010 Posts: 99 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 99 | Hi Everyone Well the cancer free diagnosis we got on March 21st maybe short lived. On the last two PET/CT's in Jan. and Mar. an area lite up in the base of tongue area that our Dr. (after scoping himself) and the PET reader felt was an "irritated area" but would be watched. He is scheduled for a PET/CT & MMR for June. Now a small pimple that within two weeks looked like a boil on his neck that we had removed by Mayo dermotology has turned out to be "invasive SCC" and needs further surgery to remove. Since the biopsy showed it was already "invasive" and it had just appeared two weeks earlier and is the same cancer type as Emmett's tongue cancer, we decided to let our oral surgeon know of this news and we are glad we did. He expressed concern that there could be a chance that Emmett's tongue SCC could have spread to his skin and wants to rule it out by talking with the pathologiest reading the biopsy. So we are now waiting to hear back from him. I asked how this site did not show up on the PET/CT done the day before this biopsy and he said that unfortunity the PET does not show up very small sites, which I take as good news, can not be that invasive then. Just makes me nervious.... We are scheduled to have the Mois surgery next Tuesday at Mayo. The dermotologist encouraged us to remove it as soon as possible, not waiting until our next visit in June. Hopefully this is just a small blimp in the journey and Emmett will be cancer free...again. 
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Karen:
So sorry to hear the news about Emmett, but encouraging words are "small site," and that it was found fast. Let us know what the Oral surgeon decides after his talk with the pathologiest who read the biopsy. I will be sending prayers your way and looking for the "cancer free, again" words. God Bless.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Ouch.. hope all turns out well. I'm not surprised about the PETscan missing it. IMO MRI/CT is much better at detecting those small tumors and more reliable for oral cancer patients.
Here is wishing the pathology reports are good and that Emmett stays in full remission. My doctors refuse to say I am "cancer-free" until it's been 5 years after my second round of TX & surgery. They use NED (no evidence of disease) or remission instead.
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: Dec 2010 Posts: 99 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 99 | Just got the phone call, the pathologiest and our Dr. both believe it is a new skin cancer and not a metastasized tumor. What a relief!! I just realized it is kind of funny that I am happy, celebrating the fact Emmett has skin cancer....what a difference a year makes.
You are right Charm, Our Dr.'s have told us he will officially not be considered cancer free until he reaches the 5 year mark but he likes to refer to himself as cancer free already and corrects me if I refer to him as having cancer, so I have gotten used to saying that phrase. It is a mind game but I am willing to play it if it makes him feel better...makes me feel better too actually.
Hey Spring has finally arrived to our part of Michigan today, the ice finally disappeared off the lake during the night. So I put out the deck furniture - we are ready to party!! Now just have to convinced him to start eating so the peg can come out - gotta get him in that hottub! Haa - sweet summertime.
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | WONDERFUL news, I've been looking for your post. I am happy about it being skin SCC. I had it on my leg many years ago, and the prognosis was when they cut it out, they check and get all the margins free from any SCC, and then you are home free. Even though it's SCC, it's different than what we had/have on the inside (no connection). Does that make sense? Anyway, so very happy for you and Emmitt.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Karen
If it works for you and Emmett, then he is indeed "cancer-free" as far as I am concerned. Yeah, what a wild world when "just skin cancer" is cause for rejoicing. But that is indeed the world many of us OCF members live in.
Congratulations on a good pathology report Best to Emmett
Keep the Faith
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: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Kaz.....we are always scared about results of scans....I empathise with you hon......xxxxxx
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | 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 | Sorry I missed your post, Karen. I hope that the skin cancer is easily cured. Best wishes with this latest hurdle and may Emmett go on to have a fast and full recovery.
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: Dec 2010 Posts: 99 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 99 | Yes, it was easily cured - the surgeon got it all out with clear margins! So we are in a good place again. Thanks for the positive posts.
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
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