| Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | WOW - what a huge relief you must be feeling Susan. That is terrific news compared to some other advice that you have received.
Your experience over the last couple of months should send a very clear message to everyone how important it is to get at least a 2nd or 3rd opinion.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | 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 | That is great news Susan and best wishes for your upcoming operation. It was great that you took the advise to get more opinions. I was in such shock when I got the diagnosis that I just went along with everything that the doctors said. Had not found this site at that stage and did not even know where to go for another opinion. Will be thinking of you on the 6th and looking out for your post.
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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Same here Gabe. If I knew then what I know now.....
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Susan
CONGRATULATIONS on being persistent and getting multiple opinions. I did not comment before since I feel the consequences of my tongue surgery, free flap and neck disecction are not the norm. I had zero problems with the free flap, zero problems with the skin graft on the wrist and zero problems with the groin donor site yet I can no longer swallow at all (failed 4 MBS) and am on a feeding tube for life despite 9 months of swallowing therapy and even VitalStim. I'm glad you will avoid any such risks. Again, good luck 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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | I had the repeat PET scan on 3/16 - the 'active' lymph nodes from the PET scan in January have quieted down, so neither my local doctor nor the doctor at Johns Hopkins feel a neck dissection is warranted at this time yippie! They definitely recommend careful monitoring of the lymph nodes in my neck via PET scan and physical exams to ensure nothing develops in the future, but for now they will leave my neck alone.
My surgery at Johns Hopkins is scheduled for 4/6. He will be doing frozen sections during surgery to ensure that all suspect tissue is removed, but he feels the surgery on my tongue will be minimal. He does not anticipate that I would need reconstruction, so no free flap (a big sigh of relief!). Although he said there is a small possibility I made need a graft (using my thigh as the donor site). The surgery will be 2 to 3 hours, and I would stay overnight.
This is a far cry from the surgery that was recommended at Fox Chase! The surgery they recommended would have taken 8-12 hours, 24 to 36 hours in ICU, 7 to 10 in the hospital, and 8 weeks recovery time. Plus I would need speech and swallow therapy and physical therapy afterwards. Not to mention the LT consequences and QOL issues caused by the surgery.
It sure seems like I got off lucky!
Thank you to all who responded with their experiences with a free flap.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Charm & Everyone Else,
I owe it to this forum to be persistent and to seek multiple opinions. The experiences shared by others and advise given here is priceless. Although I've had more than one doctor tell me that I ask too many questions, including two of the surgeons that wanted to do major surgery on my tongue. I now have a personal rule that no surgeon who feels I ask too many questions will ever operate on my tongue while I'm under general anesthesia - after all, he or she certainly would be in the position to limit the number of questions I could "ask" in the future!
I am also aware that everyone is different in their response to treatment. My path on this "cancer journey" has taken a few unexpected turns and my reaction to RT has been more severe than most. I am thrilled with the recommendation of the doctor at Johns Hopkins, but at the same time I'm being cautiously optimistic that this will "cure" me once and for all.
Thanks for being there - I'll let you know how the surgery goes!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Susan, That is wonderful news. Looking at the hour you posted this, the euphoria must be keeping you awake. Here's hoping you are finally done with this and all future doctor visits give the same good news.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hope your pain is subsiding by now and that you are starting to enjoy your new status.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Susan,
It is so great to read your good news! Congratulations and a big whew! I hope your recovery is swift.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
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