| | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Hello all, I have a MND. coming up on 9/11. (of all days). And when I asked my ENT he said that the prognosis is guarded. When asked why this is so his reply was, "He wont know the extent of the surgery until he can see inside me. The area that needs to be worked on is a previously irradiated area. (last rad session was 2/13). Now to my point, Is it not my right to get a clear picture of what is going on. I feel like they are telling me that all will be well and im sure this is what some people want to hear. But I want it straight. So I can plan my life accordingly. I know he cant give me exact odds but he is so vague. I know that RSCC with MET. to the lymph node superhighway is not good at all. any thoughts or impressions or corrections will be greatly appreciated. Shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | 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 |
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 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 | Ok, I figured it out.... neck dissection (not sure what the M is for).
I would ask if they will be doing frozen sections to check each node as they go along for cancer. That would help to avoid taking so much. It should also help to give a clearer picture of whats happening.
Best wishes with everything next week!
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: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,292 Likes: 1 | I feel you are getting a bit ahead of the diagnosis. Many times the tests done on nodes removed during ND reveal more about the extent of the cancer and then the follow on treatment, if any, is decided at that time.
Nearly all doctors tend to be conservative so are not going to guess and assume all nodes are clear or just two or three or... are neoplastic. They will wait to read the biopsies first.
One thing you can take to the bank is since your case is a recurrence that your prognosis is less bright now. Given that the cancer spread quickly is another reason there may be more caution being expressed than if this was the initial encounter.
Unfortunately, you are in the typical and all too common anxiety holding pattern of the cancer patient/survivor. Do your best to focus on other things, a few days will pass then you can have some facts underneath you to build the road forward. don
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Modified Radical Neck Dissection, MRND, which is the preservation of one or more structures like the vein, nerve and neck muscle, and takes out the chain of lymph nodes in level II-IV, sometimes V. I always feared surgery, but it was the easiest part of my treatment. I liked it so much I had three neck dissections, two that were radical lol. Sounds like you had Chemoradiation, with surgery as a last resort. It's common that surgery will be needed afterwards, forget percentages, guesstimating 30% range sounding familiar. That's what I had, surgery as a last resort, which sounds bad, but it's not always the case, and mine wasn't. Some have a planned neck dissection after Chemoradiation, which has better outcome in some studies than one that is unplanned. After surgery many go on with no more recurrences, and live normal lives, for us that we call our new normal. All surgeries have certain risks, and so do neck dissections, but some side effects are common, that are doable, and others that are more uncommon. If the doctor didn't think it would be successful, it wouldn't be offered. I went in for a MRND, and wound up having a radical neck dissection, RND, because during surgery my ENT found all my neck muscle, nerve, vein twisted around the tumor from radiation, and had to remove them, along with the lymph nodes in levels II-V. Luckily he did, and not knowing, cancer was found in my neck muscle on further biopsy. That's why your doctor may have said guarded being a neck dissection is more difficult in a radiated neck, and to what extent is only known during surgery. After all my neck dissections, I ate a BigMac meal either that day or the next Good luck, and best wishes.
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: Aug 2013 Posts: 144 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Well thank you all for your timely responses, Paul B , It is good to see that you made it through all those surgeries. I heard earlier today that I will need platelets for my surgery. This low count is due to my HIV + status. And the fact that the met. is in a previously irradiated area of my left neck. is of concern as well. My surgery is on the 11th so wish me luck! talk with you soon. thank you again. shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | I never knew that. My platelets were always good, but I'm chronically anemic, needed transfusions, but not during surgery, I believe they keep your type blood on hand, during surgery, just in case. There is always blood loss during surgery, and mine was minimal, they even measure it, and indicate it on the surgery report. 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 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 | Modified Neck Dissection spares the sternocleidomastoid muscle, jugular vein and sinus node that controls the sinus rhythm of the heart.
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: Aug 2013 Posts: 144 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Really, really, a big mac on the way home from the hospital. I guess that just goes to show us how we do not know what to expect from the aftermath of this surgery and its variations. I am five days out and I can barley get one egg down. PaulB. I cant say im not a little jealous of your eating ability. lol. Thank you all I will post how things went under a new topic.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Are they going to do more radiation or Chemoradiation?
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
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