Previous Thread
Next Thread
Print Thread
Page 3 of 4 1 2 3 4
BJT #177994 03-06-2014 11:25 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Glad you're doing well MikeM. Especially glad that you didn't do the rads on top of that. Best wishes for many, many more.

Be well...but be diligent!


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
ngk #178015 03-07-2014 10:41 AM
Joined: Mar 2014
Posts: 28
BJT Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2014
Posts: 28
NGK, you have spark plug initials. Thanks for your concern. My whole procedure is like yours with the TORS and NECK Dissection and because of the chat site, i am going to see the RAD DR on the 19th. i want to believe he is confident in his findings and comments on the % of Cancer returning.. Maybe because my tumor was found and removed and all surrounding tongue and lymph node tissue was perfect that i can just live on observation sessions. Another issue is that i accepted another job to start in April, so with all this going on in my life, what to I do stay where i am at or give notice and start a new gig, then what if i do get RT, how bad would that be for a new start.
Decisions Decisions.


Bruce
BJT #178018 03-07-2014 11:20 AM
Joined: Mar 2014
Posts: 28
BJT Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2014
Posts: 28
Thanks Mike and will get a few opinions, but my ENT cancer surgeon really sold me the first time. i appreciate the response. Why didn't you go through RT? Also how long do you think i can wavier this decision before actually deciding? my operation was on Feb 12 and my 1st RO meeting is on March 19th.

Thanks,

Bruce


Bruce
Joined: Mar 2014
Posts: 28
BJT Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2014
Posts: 28
Mamacita,

Thanks and my hospital is pretty top shelf and is a teaching hospital and when i do see the RO, i will ask for my files and research to get a second opinion. Recommend any hospitals or treatment centers in the Chicago land area?

Thanks,

Bruce


Bruce
BJT #178025 03-07-2014 06:13 PM
Joined: Jun 2013
Posts: 262
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 262
Hi Bruce, I know that the University of Chicago Cancer Center (1-855-702-8222) is very highly rated. Another option could be the Lurie Center at Northwestern (1-866-587-4322).

When you call for an appointment, the hospital will take care of obtaining copies of all the records needed (usually scans and pathology and operating reports). I know you've got an eye on the calendar and that would be the fastest approach. I was amazed to learn that some hospitals and large health care providers can even access all of your records electronically with your consent. Convenient but scary too!

Your job situation is quite a dilemma. Would the new employer provide immediate health insurance, or is there a waiting period? I think the new health care law allows up to a 90-day delay.

Really sorry you're facing all this, but glad you found this Forum.

Lynn


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Uptown #178049 03-08-2014 07:11 AM
Joined: Apr 2013
Posts: 14
Member
Offline
Member

Joined: Apr 2013
Posts: 14
i had a similar procedure--robotic removal of primary BOT and modified neck dissection to remove lymph node may 10 2013---my margins were clear and only one node had cancer and no extracapsulary extension---nonetheless radiation was recommended---i finished rads on august 7 ---worked full time as lawyer for all but last week of radiation and two weeks thereafter---checkup every 3 months and cancer free for 6 months now--some lingering dry mouth and taste issues from rads otherwise back to normal--i decided on radiation because i am otherwise healthy and wanted to fight when i was strong--don't let employment drive your decision--there are always jobs--good luck


T - 55 yrs old
BOT - right lymph node
T1N2AM0, Stage 4, SCC HPV+
Diagnosed: 4/23/13
Surgery 5/10/13, ND, BOT lesion removed
Pathology report: 23 nodes taken, no cancer; clear margins; no extracap
Treatment recomm: Radiation only - 30 sessions, lower dose of 60gy to start in approx a week.
timm #178056 03-08-2014 01:20 PM
Joined: Oct 2011
Posts: 30
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Oct 2011
Posts: 30
timm, I'm weighing robotics vs. radiation. How did you decide to do robotics? And, how large was your primary tunor as well as the lymphs?


DX in 12/2010. Stage 4 SCC HPV+ BOT swollen lymph. I've spent the past 3 years away from medical treatments. Instead I've focused on good nutrition, active exercise, singing, laughing, oral exercises and such. I've had neither pain nor discomfort. But I haven't been able to kill the cancer. So, I'm now considering robotic surgery and/or radiation.
BJT #178069 03-08-2014 11:51 PM
Joined: Jan 2012
Posts: 42
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jan 2012
Posts: 42
Bruce, I think you are doing fine on the timeline.. I recall my doctors guidelines was to start Rads within about 6 weeks of surgery. Similar to you, the surgeon was exceptional, I could tell from his knowledge, experience, honesty, etc.. He was confident of the surgery outcome. He initially assumed I would complete radiation. After interviewing the first RO I was disappointed in the lack of 'alternatives' discussion, if I hadn't read the NCCN guidelines they might have skipped the discussion. Only after requesting additional opinions, and getting percentages similar to yours, was I able to work to a decision. The main reason I took the higher risk route was my existing oral condition. I didn't have the gift of naturally good teeth, I had just done periodontal work, and some gum restoration, and I want to do a bit more. It seemed like rads might be just enough to cost me my teeth within a few years, I really wanted to keep them much longer if possible. The surgeon confirmed he would do the regular screening for any sign of reoccurance, we met every 6 weeks for past 2 years, now it is every 10 weeks. He is very thorough with a scope down in the primary tumor area, as well as externally around neck and shoulders. As i look back 2 years it's hard to really sense if it was a reasonable trade off or somewhat short sighted.
Mike


Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good
BJT #178123 03-10-2014 03:11 PM
Joined: Mar 2014
Posts: 28
BJT Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2014
Posts: 28
Mike,

Thanks i will going the observation route starting in Mid April and will be taking a new job too. Just curious... since i sort of latched on to your story and you are the only one that responded with the No Rads decision, have you changed or modified your diet in any way. i.e. vitamins, supplements, more fish etc.

Bruce


Bruce
BJT #178136 03-10-2014 06:12 PM
Joined: Aug 2011
Posts: 269
ngk Offline
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Aug 2011
Posts: 269
Hey bruce!
Glad you were able to make a decision. Be well. I'm rooting for you!


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Page 3 of 4 1 2 3 4

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5