| | Joined: Dec 2011 Posts: 18 Member | OP  Member
Joined: Dec 2011 Posts: 18 | I have reading some of the post from others that are going through recurrence like I am. After reading about JetAge, I am so scared of whats in store for me when I have surgery May 1st for the same thing. Its been 3 years since my 1st surgery and I truely believed that I had beat this thing. Ive had a CT/Pet in the last couple of weeks and so far they haven't said anything about it spreading. Im trying to stay positive but its really hard. I guess I am asking for prayers at this point. I would also like information on what I am in store for. They talked about reconstruction this time around.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Hi Sherry,
I'm very sorry to hear about recurrence, especially after three years, most start feeling it is in the past. As you point out, it seems there isn't any metastasis which is wonderful news and that the treatment plan calls for surgery only is also a good indication of it being local only.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Sherry, I can understand why you're scared. I'm sending you positive vibes. Reconstruction is big surgery but many of us here have been through it and now cope just fine. I've had two reconstructions or "flaps": one on my tongue and one in my cheek/on my gum. Both times I thought it was the end of the world but each time I recovered. It's hard not to look at what can go wrong and what happened to JetAge was tragic. Doesn't mean it will happen to you. If possible treat yourself to pleasant things and food over the next two weeks before your surgery. Eat nice stuff. See a counsellor. Write a journal.
I wish you well!
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi Sherry, a recurrence is so difficult to deal with. I know. We have been there.
The good news is that it seems there are no distant metastases. So this is still basically a local, or regional , recurrence. You have options still to treat this which is fantastic.
I also think that you should be asking your team more questions. Ask for the results of your CT/PET. You should know this. Ask exactly what your treatment plan is. What exactly they are proposing to do with this surgery? What is the expected recovery like? Will you need a feeding tube? A trach tube?
Have you considered getting a second opinion? Preferably from a Comprehensive Cancer Center. Research has proven that CCC' s have better outcomes for their patients.
I wish you strength for this next phase of treatment. You can do this.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | Hi Sherry Writting, going out for sushi, going for walks in nature, talking with family & people with health care knowledge. Going out and eating pretty much every day was a major way Stephen & I found positivity & lightness in the face of the big day. For two frugal people we sure made up for it in our month & a half of sushi splurging!  I spent the innitial weeks organizing/calling to send medical info, trying to advance appointments & delegating tasks such as food puree preperation & finances to family & friends. <3 
husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Thank you all for giving me strength. I appreciate you all. This is going to be a difficult time for sure. I'm starting to get my affairs in order so I won't have to think about anything but recovery. I moved a few months ago to be near my sister and that proved to be a very wise decision. What a blessing, at least I can count on her if I have to.
I will call my doctor in the morning to ask those all too important questions. So far, he hasn't given me all the facts or information that I need. I can't go to a cancer center because they don't accept my insurance. I am seeing physicians at Emory University Hospital here in Atlanta. They did my 1st surgery. They are suppose to be the very best in the south. I sure hope so; I'm depending my life on them.
Again, thank you for all of your support. I will keep you posted on what they say tomorrow about my plan of action.Hoping for the best but preparing for the worst. (Just in Case)
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Jan 2015 Posts: 10 Member | | Member
Joined: Jan 2015 Posts: 10 | Dear Sherry,
your recurrence is local, which means it can and WILL be treated.
Think positive. Fill your mind with positive thoughts only and good things will happen. Sending a prayer your way!
Father had oral cancer stage 4A. Diagnosed 17th May. Partial glossectomy and graphing done from hand. Radiation 30x. Chemo - cisplatin 6 rounds. Finished chemo and radiation in Aug. PET - Nov - recurrence and spread to liver and lungs Chemo started - erbitrux and 5fu. 2 rounds done. Passed away 12/23/2014 - i believe he is in a much better place now | | | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | I am so glad that your sister is there, you will need her help. It would be great if she could stay in the hospital with you in the innitial days of your recovery. Especially at night when there is a little less staff and you might need help for basic comforts so you can sleep.
Ask your doctor/ surgeon exactly what the surgical plan is. You must ask if they will do "frozen sections"! All cancer surgeries of soft tissue need to be done with frozen sections. This means the surgeon team is freezing all that they remove so they can test it part by part during the surgery. This way they know when they have removed all the cancer plus "over 1cm" of clear margin.
Thinking of you
husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hugs to you my dear. Push them to move quickly and get a plan in place ASAP.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Mar 2014 Posts: 79 | Sending you love and positive thoughts , so sorry you have to be here again so bloody unfair! X
Di 47 none smoker / drinker
T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Oh... and getting through it a second time can be done very successfully. Donna... (canadian) had one come back either 2 or 3 years out. She passed the 8 and 5 year mark last year some time.
Two individual tumors as well... not a recurrence.
Hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Thank you all. I am seeing my doctor in the morning to ask all the questions that ya'll recommended. I am very worried because I have been having a sore throat the last couple of days and I can't help but think that the cancer is spreading to my throat. I also have been experiencing more pain than usual and that's not a good thing. They have given me meds so that the pain is bearable; and that's a good thing. I'm trying to keep thinking positive thoughts. Please keep praying for me that this is just a little bump in the road. I'll let you know what the doctors are saying now about my course of action. Com'on May 1st. I'm ready to kick this thing called Cancer in the butt. Thank ya'll for being here for me.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Apr 2015 Posts: 91 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2015 Posts: 91 | What happened at your appt? I hope it all went well. Denise
Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | My doctor just told me about what kind of surgery to expect. It was basically about the same as the lst one. He didn't see anything about the sore throat. The CT scan didn't show that it had spread but that was taken about 2 months ago. I will be in the hospital for about 10 days. I will have a trach and some skin graphs. They are doing reconstruction this time around. I don't have much tongue left so I'm sure I won't have any when the get through. Denise, I hope your surgery goes well. I had the glossectomy and neck dissection too. My prayers are with you. Thank you all for your continued prayers. I will keep everyone posted when I find out anything new.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | I'm sure he would have mentioned your throat if it was something untoward. Sounds like full-on surgery with trache and grafts. Your tongue will probably be built up with a flap so, yes, there will still be a tongue:)
Wishing you all the best for the surgery.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hugs... You will get through this okay.
many blessings to you.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Well, my surgery date is coming up rapidly. I don't know if I am happy to finally get this over with or sad because of the unknown. I just know that I am tired of being in pain and taking meds all the time. They make me where I just don't want to do anything but sleep. I am trying to keep an open mind and do activities so that I'm not dwelling on this. Thank goodness that I have my sister close to me now. She has been a godsend. After this is over, I'm gonna owe her big. Hopefully, with the reconstruction this time, I will be able to see a speech therapist to help me get back on tract sooner. (Can't keep me down for long).
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Sherry, hang in there. You just have 3 more days. As requested, I have been praying for you. The things I have asked for are peace for you, wisdom and guidance for the medical team to expertly and swiftly rid your body of cancer, for a smooth surgery and quick healing.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Good luck with everything. Sometimes the pain is referred pain. Although 2 months is a long time between scan and surgery. I am not sure if your dr. is the same but my does a surgery where he can see the cancer in real time while he's cutting (no need for a up to date CT). Working off a 2 month old scan is like flying with out updated flight traffic information. If it were a week old that would be okay... Is he sending you for a second scan?
Anyway hugs and best of luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Here's the update if you can believe it. I got a call later on Tuesday and was told that I needed a cardiac clearance. Now keep in mind that this is last minute. Got a call on Wednesday morning to see if I can be at the heart center in 1 hour. I live an hour and half away and its downtown Atlanta. There was no way to make it there and they said ok and that I could come in Thursday at noon. I show up and was told that I needed a stress test and that they didn't have any openings or that they hadn't cleared the test for insurance purposes. Either way I didn't get the test. Soooo, they canceled my surgery. I pleaded with them that this cancer is spreading. Right now, I don't know what to expect next. This is the second time that they canceled this surgery. The first being due to my thyroid. I'm beginning to think they just want me to die. They are a reputable hospital but right now I am confused of their intentions. Feeling Betrayed.
Last edited by Sherry F; 05-01-2015 10:03 PM.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Sorry, sorry, sorry this has happened. Do you have an advocate? Someone who can do some of the ringing or questioning for you? It sounds to me as if you've never had quite enough information and I know that it's exhausting having to battle your own case if you're not feeling well.
I think you can complain about the last minute request for a heart test. I thought all that testing was done when the surgery was scheduled. When will you see your doctor?
Hope everything gets cleared up soon.
Maureen
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I'm sorry for your troubles. I needed cardiac clearance several times. One was prior to my neck dissection in 2011, and another before starting chemo in 2013. Although it delays matters, it's in your best interest. The cardiologist gave me clearance after an EKG, and echocardiogram to start chemo since the stress test would be done at a later date, due to scheduling, and after I needed to start treatment in a few days, and agreed to go back. I didn't go back until I finished treatment. Maybe there are other cardiologists in your area that can accommodate you faster.
Good luck
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Scream and make noise - be the Sheaky wheel- I would have had the test paid for it and billed the insurance ... Hugs!!!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | My thoughts are with you Sherry
Sophie | | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Sorry I haven't posted anything in a while but there was not any new news to report except that my surgery went from May 1st to July 20th. They said that this is the best date they could do. You would think that, considering the hospital that I am going to, could do better than this. OMG, I told them that I was having a sore throat, so they made an appointment with me to see a nurse practitioner that only stuck her finger down my throat and told me that it was not serious. I told her that it had been several months back since I have had a CT scan so how could she tell. I guess my only option is to just try to sit back and wait for this beast to take over. I'm feeling really scared.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 | Hang in there- we are all pulling for you.
SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | It's psychologically bad for you to have to wait this long. I assume that the doctors think it is medically okay. It's a good sign that the nurse found nothing wrong when she looked at your throat. However, you can't go on like this. You need to ring the hospital and ask to speak to someone, if possible the surgeon or one of his/her staff. I think it's in their code of practice that they must minimise patient distress. They need to make you fully aware of the medical situation you are in. Fine words from me because I was just like you over Christmas. I got my cancer (recurrence) diagnosis from a phone message and assumed I couldn't talk to anyone until the holiday season was over. That three week period was one of the most miserable in my life. Looking back, I can see that there were things I could do. There would have been people on duty in the ENT ward. I could have requested a conversation.
Once you are more fully in the picture, you will feel better. Take all the help you can get: Cancer Society etc.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I am thinking you need to get your but to another surgeon or CCC... and 8 week wait after a cancer recurrence is too long. I would be freaking and phoning daily. It is NOT okay. Go to someone else who is just as good or better and they should get you in sooner. Call them ask for all your records... and send them on to someone else.
don't cancel the surgery until you have a firm booking. Medically it is NOT okay to wait that long. They are playing with your life.
hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | You are in mine and my husbands thoughts. I agree with Cheryl, you must call and your surgery with at a CCC.
Hopefully you have family who can advocate for you.
Sophie
husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | With the recurrence diagnosis date being noted as February 2015, and the surgery date now scheduled for July 20th, about 5 months later, does seem like a long wait after diagnosis, although wait times for all cancers are increasing, and more so at academic and NCI-CCC designated locations, than community hospitals, although, they are the best places to be at. There are a number of factors for delay some are patient, insurance, type of cancer, etc., but haven't seen this long, except maybe my own.
As suggested, you can obtain a 2nd or even a 3rd opinion, some by telephone conference, at another CCC, insurance permitting, by July 20th.
Good luck with everything.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Thank you all for your kind words and advise. I wish I could just up and go find another doctor. My insurance won't cover a CCC. My sister and I have tried to call a patient advocate at the hospital. We both have left several messages but for some reason, they haven't called us back, and this has been going on for at least 2 weeks. This is so frustrating and I am losing the energy to fight. Thank God for my sister, she is trying her best to fight for me. This hospital is always on the list for "Best Hospitals" in the country but I sure don't see it.
Ok, I will quit whining and feeling sorry for myself. (I am talking myself into feeling strong). Thanks for letting me vent. Hopefully I will hear back from them soon.
Yes, I am feeling better already.
Thank You
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Glad you are feeling better already! And that your sister is helping you. That's great. I hope the Patient Advocate service has got back to you by now.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Hello.
I got some excellent news on Monday that they had a cancellation and that my surgery is going to be moved up to June 9th. This is probable the best news that I could have gotten. Its last minute but I'm so ready for this. I had to go see the Doctor on Tuesday and am having a new CT tomorrow. The only thing that I'm having a problem with is leaving my dog Abbey. I got her after my 1st surgery and shes never been without me and I know she will have a hard time adjusting. At least when I get back home that I will be cancer free. Thank you for all of your prayers. It must have worked.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Fabulous news Sherry.
Wishing you all the best.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | Wow, what great news and relief. Holding you in my thoughts.
Sophie | | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | YOu're in surgery today... may all the blessings be with you... hugs and much love... hope you have a speedy recovery.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Hi Everyone:
Just a quick update: Ive been home a week now and I got to say that was one of the hardest things I've ever gone through. I spent 3 days ICU and 5 recovering before they finally sent me home. Had to use my right arm for the flap so that didn't help. I'm all bandage up right now and look like I've come out of a war zone. Don't get me wrong, I feel very blessed that I came out of this alive. I hope for a speedy recovery but right now its baby steps. Thank you for all your prayers and warm wishes.
Sherry
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | It's an ordeal, isn't it? Did you have a trache? What did they actually do?
I had the forearm flap from my right arm too and found it devilishly hard in the toileting department:) One day when I walked down the corridor with my arm in a cast and stitches in my chin another patient looked at me and said, You've been in the wars!
I'm so pleased you are back home safely.
Best wishes
Maureen
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Hi Maureen,
Yea I had a trache. I really hate that. I had stitches in my chin and staples across my throat. Cast on right arm and a bag of blood taped to my leg from the skin graph. I look absolutely marvelous. At least I'm alive.I don't know what the next chapter will be until Wednesday when I go in for my follow-up.
At least me and my pooch can cuddle up and just wait this storm out and then go on from here.
Feeling very blessed
Sherry
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | It's great to be home and your little dog will be oh so pleased to see you.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Quite the fashion model. I enjoy the picture of you and pooch sitting out the storm:)
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Sherry,
I am an old timer who just returned to the forum after a long absence.,wishing you all the best and fast healing on this 4th of July.
Danny
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Thank you Danny:
Happy 4th of July to you to. Hope you are doing well this holiday. It was low key for me for obvious reasons, but I live on a lake so I got to enjoy the fireworks from my deck. It was quite a display this year.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | I hope you are healing up well, Sherry! It's amazing how our bodies can heal from such trauma. Here's to wishing you all the best!
Love and hope in OCF,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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