| Joined: Sep 2009 Posts: 63 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | Followup appt this noon. PET shows there is still cancer in the bone. 50/50 chance it is false/positive because of the bone infection. ENT wants a biopsy this Tuesday to verify it to be cancer. Surgery is the only course of action to remove a significant amount of the jaw bone, any residual cancer and the front of the tongue.A neck dissection will also be necessary. There is also a 50/50 chance this cancer will return because of the aggressive nature of SSC. Should that be the case, there is no further treatment available to me. I found that surprising; no chemo, no radiation, no surgery. From all I've learned on the site, her predictions seem more dire than anything I've heard so far. I'm pretty much reeling from the visit and glad it's a weekend so I can clear my head and hopefully make a decision on the next step...Third opinion? Scared and stunned! Pat
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Hi Pat:
I will pray, pray, pray that what you are experiencing is indeed a false positive. Hopefully, it is the bone infection that showed on the PET scan. Sounds like you heard all the negative things, but there is always hope for something else. It has happened to others, so maybe yours won't be as bad as you heard. I'm sure others will post messages too that will help you feel better. 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: Sep 2009 Posts: 63 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | Julieann,
Thanks, that's why I post here! Thank God I have the whole weekend to get my head on straight so I can make an informed decision. I thought I was prepared for today, but I wasn't. Pat
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I am constantly asking my surgeon - "if it is back, are there options". He tells me there are always options - just a matter of whether I want to go there or not. I don't know how I would react if a doctor told me there was nothing further for me - I would undoubtedly, get another opinion, so probably the only thing you can do right now, is find the name of someone you would go to for a second opinion.
But, We're putting the cart before the horse. At this point you need to take a deep breath, relax those shoulders, and KNOW that you are not there yet. It isn't cancer until the biopsy says its cancer and that has not yet happened.
Know that WHATEVER the results, we are here with you.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | 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 | Im so sorry to read you need another biopsy to determine if you have cancer again. PET scans have false positives, it happened to me. Ive had the jaw surgery you are talking about. It can be done!!!! Sorry, I dont remember, have you had a second opinion? I know you are in an area where there are several great hospitals. I know Jerry mentioned some to you previously. 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: Sep 2009 Posts: 63 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | Christine, This was my second opinion. I'm now taking the weekend to decide if I'm going for a third. This is all so overwhelming for me. I saw on one of your posts that you are waiting for reconstructive surgery. I thought jaw surgery included reconstruction. Did I misunderstand? Pat
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | Joined: Oct 2005 Posts: 47 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2005 Posts: 47 | Pat, Sorry to hear your news, it seems sometimes when we are trying to handle all we can something else happens that knocks us down again. I don't know what to say except get back up and keep fighting. Get another opinion! It aint over yet!
And know you are in my thoughts, you are not alone.
thinking of you. Gina
scc 4/2004 r side tongue, flr of mouth. neck disection,4 lymph nodes 34x rad,3X chemo 10/2007 r cheek. remove w/graft. 40 HBO dives. 01/2010 r cheek. surgery w/graft 04/2010,surgery remove lower right jaw, reconstruct. 4x chemo 25x rad. clear margins. pet 8/2010 clear July 2012 right side bot cancer. surgery to remove, clear margins 4/2013 Surgery to remove cancer in lymph node near thyroid, clear margins 6/2013 start of rad 25X Chemo 7X
| | | | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2006 Posts: 199 | Pat - if I were you, I would go for the 3rd opinion, and I would go to either Johns Hopkins or MD Anderson, both the 2 best places in the US (and perhaps the world?) to treat complex oral cancer cases. I went to MD Anderson but seeing where you live, you might want to consider Hopkins.
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Pat,
I agree with Me2. Get another opinion. I am so sorry that you had bad news. I think it was Davidcpa who had 5 opinions before he received his treatment. Go to another CCC. The larger, research based hospitals are on the cutting edge of treatment way before the smaller local places. We are very happy with Penn and highly recommend it. You are in my thoughts and prayers.
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
| | | | Joined: Sep 2009 Posts: 63 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | I got the biopsy results yesterday and happy to announce the PET was a false/positive reading...NO CANCER!!!!!! Now we deal with the plans for surgery. The ENT is talking a mandibulectomy, tracheotomy and left neck dissection. She says she doesn't need to take as much of my tongue as initially thought...now just a small section under the tongue. The neck dissection won't be as extensive as initially thought either.She'll take a few lymph nodes mostly to give the PS as much to work with as possible. I hope I'm interpreting this properly; this is my understanding. As it goes to the trach.. I hope I understand that this is only temporary for the two weeks I'll be in the hospital recovering. I have also set in motion a request for Medicaid to approve a third opinion at John Hopkins while I go ahead with the surgery plans at Fox Chase which she is estimates to be mid-May. I guess now it is just a waiting game and planning a list of questions that will come up between now and then. Hoping "you guys" can help me with that. Pat
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | 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 | Congrats on getting great news!!!! Those darn PET scans with their false positives!!!! Sure can scare you to death. So happy that everything is ok. 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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Pat,
Whew! I am glad that you got some good news regarding the PET. As for the trach, you will do fine with it. All of this "stuff" is manageable, not pleasant but doable. Most importantly, you are on the right path and are in good hands. Jerry (wilckdds) was treated at Fox Chase and he was very pleased with his team.
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
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Pat, that's great news! I realize you're still facing what sounds like a tricky operation... but to hear the words "no cancer" is just amazing. Congrats. I had a tracheotomy tube for most of the 11 days I was in the hospital, and while it's not something you would exactly volunteer for, it's not as bad as you might think. Make sure you keep a pad and pen handy!
David 2
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | 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 | Wonderful news re the PET. Sounds like your upcoming operation is much the same as mine. Like David 2 mine was removed at around 1 week and healed so well that it is hardly visible. I had the pen and paper as well as a child's whiteboard to communicate with.
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: Sep 2009 Posts: 63 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | I've been getting quite a few calls today to schedule a CT scan, see a speech therapist, schedule surgery. pre-admission testing and one to notify me that my request to Medicaid for a 3rd opinion has been processed ( not yet approved). They want to schedule surgery for 5/13/10.All of a sudden things are moving quickly and I don't know if I'll have enough time for a third opinion if I should get authorization. Is it time to tell my doctors that I am considering a 3rd opinion before all this testing or do I wait until I know for sure that I've been approved? I feel kinda bad that everyone is jumping thru hoops to move this along when there's a possibility that I won't be going with them. I'm driving myself crazy!
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Pat,
Don't drive yourself crazy. The people who are treating you do not want to do unnecessary medical procedures on you. They are good people and will fully understand if your third opinion says to hold on, do something different, or do nothing at all.
Its your body, your health and your life so its your choice.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Good news, now just calm down and let process proceed and win this WAR you are in!!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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