| | Joined: Jun 2010 Posts: 7 Member | OP  Member
Joined: Jun 2010 Posts: 7 | Hi everyone,
I am astounded by the depth of knowledge and compassion shown by everyone involved in this great community. I have been reading through virtually the whole forum for a while, and I have finally got it together enough to post. I need to thank Gabe for his PM which gave me the prod I needed.
Hopefully my signature is decipherable, but my story in short so far:
2006 - small ulcer biopsied from right side of tongue. SCC with clear margins, and no further action taken.
6/2007 - Recurrence in the same place. Referred to Adelaide H&N clinic which recommended hemiglossectomy, MRND and rads. Got a second opinion in Brisbane, which recommended the same treatment. Had the surgery, which ended up being a partial glossectomy with a primary closure, and MRND levels I to IV (all clear). I had the rads, which was the worst part, but came out the other side fine in the end.
4/2010 - Recurrence in scar tissue in pretty much the same place, and PET scan shows that it is in two nodes on the right side. H&N clinic again recommending a hemiglossectomy with RFFF and MRND (hopefully preserving the SAN). Surgery scheduled for July 24.
I think after the major surgery and rads in 2007, I still didn't really think that the cancer was anything more than a momentary speed hump in our lives to be gotten over and forgotten about. My surgeon had said that disease free for five years was the short term goal, but after three years I was feeling pretty much that it was all over. Now that it's back, I think we are both thinking much more along the lines of "this is something that is now an ongoing part of our lives", and probably why I have joined this community.
As I replied to Gabe when he PM'd me, I don't really know if I have no questions at all, or so many that I can't tell one from the next. I suspect the latter. I suppose it all boils down to "Is this the right treatment?". We are pretty confident in and trusting of my surgeon, but I have this underlying feeling that I don't have enough info (about me, like scan details and the like). My surgeon is setting up an appointment with an MO to get a better overall picture of the disease, and I'm hopeful that this will leave me feeling a bit more settled.
Sorry for rambling so much. I don't think I've actually asked a question. But it's a good feeling to be here.
Cheers
Jules
Male 40 YO
SCC RHS tongue | Partial glossectomy & MRND (levels I - IV) 6/2007, 35 rads 9/2007, no chemo
Recurrence 4/2010, currently T1N2aM0 | Hemi-glossectomy with RFFF and RND 24/7/2010
Gorgeous wife Lynda, daughter Sienna and another on the way! (there's good stuff too) | | | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Welcome Jules. Sorry you have had such a time with this awful disease. You will make many new friends here and get much love and support.
Hug
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hello Jules:
I wish you much success on your upcoming surgery. Hopefully, it will be the last you'll ever need. That is what we all look forward to. Yes, this forum is the best place to be and offers so much information. It sure has helped me a lot. As you've probably noticed, there are some members who have gone many years without reaccurances, and those that did have one, have had success stories afterwards. I guess being on your toes, as you seem to be with this dreadful disease, is what we all need to be. Again, let us hear from you and much luck on the 24th.
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: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Welcome Jules.
I'm sorry to see what a tough time you have had - and at a young age. I believe you are doing the right thing, wanting as much info as possible about your treatment regime. Yes, we do need to trust our docs but we need to know that they are following the latest recommended practices. Have you read Lance Armstrong's book 'It's not about the bike'?. He changed his doc and treatment plans when he felt he needed to. It is an uplifting book.
I know your family will support you as you undertake more treatment. The OCF family is here for you also. Some members will have travelled a very similar path.
Thinking of you and wishing you well on 24th, love from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | 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 | Jules, welcome to OCF. Im sure you will find some questions or maybe even be able to assist someone else. This is a great forum where everyone helps each other weather its with medical info or moral support.
Im sorry but Im not the best with abbreviations. What is RFFF and MRND ? I think the last 2 letters of the 2nd one are neck dissection and maybe the Fs are free flap????
Best of luck with your recurrance. They are never easy but it can be done.
(PS Gabe is female)
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: Jun 2010 Posts: 7 Member | | OP Member
Joined: Jun 2010 Posts: 7 | Hi Christine,
Sorry about the acronyms. RFFF = Radial Forearm Free Flap and MRND = Modified Radical Neck Dissection. SAN = Spinal Accessory Nerve.
Funny that Gabe thought I was a female (she PM'd me before I had sorted out my signature). I think I just made the assumption because I know another Gabe who is a guy.
Cheers
Jules
(Julien)
Male 40 YO
SCC RHS tongue | Partial glossectomy & MRND (levels I - IV) 6/2007, 35 rads 9/2007, no chemo
Recurrence 4/2010, currently T1N2aM0 | Hemi-glossectomy with RFFF and RND 24/7/2010
Gorgeous wife Lynda, daughter Sienna and another on the way! (there's good stuff too) | | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Jules, Now for my official welcome to OCF..Hope I was not being too pushy! I am so glad to see that you have posted and even though you may not have any specific questions at this stage you will know where to come when you do. Sorry to see that you are going through this again and I wish you all the very best for your surgery on the 24th. Let us know how it goes or if you need information from the many knowledgeable people here beforehand. Love that your signature recognises that you have good stuff going on too. When is your baby due to be born? Now I have another question for you. You mention that the recurrence is in the same place and that you also had a Radial Forearm Free Flap (as I did). Whereabouts is this scar tissue? Ms Gabriele 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2010 Posts: 7 Member | | OP Member
Joined: Jun 2010 Posts: 7 | Thanks for the welcome Gabe. You have to keep your eye on the good stuff, don't you. He/She will arrive on or around Feb 20.
I probably wasn't clear regarding the flap. That's what I'm facing having now. The last surgery was a primary closure, and it's on this scar tissue (right lateral) that it has come back.
I just got a call telling me we have an appointment with an MO on Monday. I'm fairly sure I'll have some questions after that. He will be the first non-surgeon I have seen one-on-one this time around.
Cheers
Jules
Male 40 YO
SCC RHS tongue | Partial glossectomy & MRND (levels I - IV) 6/2007, 35 rads 9/2007, no chemo
Recurrence 4/2010, currently T1N2aM0 | Hemi-glossectomy with RFFF and RND 24/7/2010
Gorgeous wife Lynda, daughter Sienna and another on the way! (there's good stuff too) | | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | Welcome to OCF Jules! Good Luck with your surgery.
Congratulation on your 2nd. Hopefully it's a girl, they're the best!
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Jules, welcome and glad you found this place. We're all with you every step of the way. Please keep us posted. Sounds as if your attitude is exactly right!
Courage.
David2
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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