| | Joined: Jul 2009 Posts: 10 Member | OP  Member
Joined: Jul 2009 Posts: 10 | Hi I'm Sharon. I am glad I found this site to connect with people and caregivers of oral cancer. My brother currently age 49 was recently diagnosed with advanced scc. He's scheduled to have this major surgery on Tuesday. I've been doing lots of research so I would know what to expect, prognosis et. It would be nice to talk to survivors and/or caregivers. I sounds like it's going to be a long recovery.
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Hi Sharon,
I'm sorry you had to join this site but it will be very beneficial to you and your brother. It is hard to say how his recovery will go; we would need to know much more information about the primary site of the tumor, the size, any lymph node involvement, Chemo and Radiation plans, etc., as everyone's story is different. The most important thing right now and until he is unable to anymore, is that he eat everything that looks or sounds good. Forget the calories! Have his doctors mentioned him needing a PEG tube? A lot of OC patients end up needing this device because it becomes very difficult to eat or even drink. My husband had a PEG and still lost 60 pounds during his first treatment. Will you be your brother's main caregiver? It is a hard job, but he truly will need someone to go to appointments with him, and physically help him with his symptoms, medications, etc. I'm sure you will get more good advice from many others here. Ask any questions you may have and someone will answer. We are here for you.
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Jul 2009 Posts: 10 Member | | OP Member
Joined: Jul 2009 Posts: 10 | Hi Lori -
I'm so sorry to hear about your husband:((
Thanks so much for responding! I really appreciate it. My brother dx is T3N2MO. He's having an all day surgery this Tuesday that involves removal of part of his tongue, neck dissection, etc. and reconstruction at the same time. So, it sounds like a lot!!! He will have a feeding tube for a couple of weeks at least, and when he comes out the hospital he will have a trach. I will be his caregiver as he is staying with me since his diagnosis. I've been managing all appointments, tests, and communicated with his doctor. His doctor says it's treatable and he has a 5 year survival rate of 50%...so I just want to connect with people who have either gone through this with someone as you have, or is going through this. Look forward to hearing back from you.
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Jul 2009 Posts: 10 Member | | OP Member
Joined: Jul 2009 Posts: 10 | O and he is scheduled to have radiation afther his surgery but I don't have all the details of that. He has a 4.1cm lump in his neck and his diagnosis is oral cavity carcinoma.
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | I think you'll find that people on this site, both caregivers and those who have been dealing with oral cancer of some type personally, will be very helpful, informational, and encouraging. Sometimes there's tough love too, when it's needed!
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi there and welcome
you have a long journey ahead of you but be thankful that you found your way here before it has really started.The support you will get makes it seem less lonely and much less scary.
Drop in as often as you can and let us know how its going.
good luck on tuesday that will be one long day
love liz
Last edited by Cookey; 07-31-2009 11:54 PM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Yes, many here have completed the same surgery and while he will look scary for a while he will recovery nicely. Do fatten him up post surgery going into the rad and I assume chemo.
welcome to this site as it will prove to be the most valuable tool in your arsenal, outside of your doctors that is.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Hi Sharon,
All that stuff you wrote regarding your brother's diagnosis and surgery can be put in your profile(see bottom of each post) so you don't have to repeat it each time in your posts...we all look at it to give you the best answers based on the info there.
Go to top of page "My Stuff" then "Profile" and you will need to fill in the info at the bottom.
Your road ahead as a caregiver is going to be rocky, but it is so important for your brother's outcome....makes all the difference. This website is full of information and it will behoove you to take the time to read as much as possible...Information is Power.
I wish you and your brother strength in the coming weeks,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Welcome Sharon,
Sorry about your brother, and happy that you found OCF. You will receive .much support here! Good luck to you and your brother this upcoming Tuesday
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Sharon,
your brother is very lucky to have you by his side.
After he recovers from his surgery, you can still have several different opinions about the course of treatment, do not hesitate to listen to as many doctors as you feel is necessary. Also, regardless of whether or not he will need a peg tube (I didn't have one), it's crucial to meet with a speech and swallow specialist or just at least to have someone walk him through the exercises necessary to maintain his ability to swallow as even if he doesn't have a peg, he'll have a nasal tube for a bit, plus he will only be swallowing liquids.
And also, things will get better as he recovers from surgery, and then much worse as he is hit by radiation and possibly chemo, and from there the road to recovery is veeeerrrryyy slow. But he needs to eat, drink, brush his teeth, and not shy away from pain medication.
I'm not a frequent poster on this site, but I'm a frequent reader. With rare exceptions, everything I was looking for, I was able to find here.
Get your brother a bunch of notepads and pencils because for a while it will be his only way to communicate with doctors, nurses, and family. My friends gave me a iPod touch so that I could keep in touch via email while in the hospital.
I hope your brother's surgery goes smoothly. Mine was 11 hours long, it's exhausting for everyone involved. So be prepared.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | 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 | Sharon, welcome to OCF. This is the best place to be for information and support. Please feel free to ask questions. Your brother is very lucky to have you to be his caregiver. Best wishes with the upcoming procedure.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sharon, there is one thing that most of us do and that is get as mean as a mother bear with our caregivers, get out the nasty word repellant and put it on your back so the words slide right offYou knoe he won't mean them and won't remember saying anything or beig mean probably. It's part of this disease.He will need you more after treatments then before.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Hi Sharon and welcome. I am new here as well. SCC surgery on 23rd July. Learning and praying for the best for everyone here.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: Aug 2009 Posts: 6 Member | | Member
Joined: Aug 2009 Posts: 6 | Hi Sharon,
I just wanted to check in with and see how your brothers surgery went? Hang in there and be strong!
Kerri M, 41
6/12/09 Tongue Cancer SCC stage 2
7/2/09 Partial Glossectomy clear margins
modified radical neck dissection
39 lymph nodes removed- all clear
7/31/12 Tongue Cancer Stage 1 (unrelated to first diagnosis)
8/6/12 Partial Glossectomy clear margins
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Hi sSharon, welcome. I'm a new member and caregiver too, How is your brother doing? Please keep us posted . My husband was nasty after surgery last fall and wrote nasty notes since he couldn't talk. I saved the notes and we had a good laugh about them a few weeks ago, now that he's finished treatment.
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Jul 2009 Posts: 10 Member | | OP Member
Joined: Jul 2009 Posts: 10 | Hi Kerri...thanks for your concern. I really appreciate it.
It was a long surgery! We took him to the hospital at 6a.m. and surgery was complete a little before midnight! Things went well doctors said. I saw him this morning. I really didn't know what to expect but he looked himself with some swelling and staples around his neck, and hooked up to all the machines in the ICU. We'll take things step by step of course but there's some relief having the surgery behind us.
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Jul 2009 Posts: 10 Member | | OP Member
Joined: Jul 2009 Posts: 10 | Welcome Nancy and thanks for asking...
It was a long surgery! We took him to the hospital at 6a.m. and surgery was complete a little before midnight! Things went well doctors said. I saw him this morning. I really didn't know what to expect but he looked himself with some swelling and staples around his neck, and hooked up to all the machines in the ICU. We'll take things step by step of course but there's some relief having the surgery behind us.
I'm glad you and your husband are doing better and can enjoy some laughs!
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Jul 2009 Posts: 10 Member | | OP Member
Joined: Jul 2009 Posts: 10 | Welcome to you....how have you been since having a recent surgery?
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Jul 2009 Posts: 10 Member | | OP Member
Joined: Jul 2009 Posts: 10 | Hi Christine...I'm not sure if I responded before so I just thought I would now to be sure. I'm glad I've found this website especially to meet people like you.
I know I will have lots of questions as we approach the days ahead. Blessings to you.
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Jul 2009 Posts: 10 Member | | OP Member
Joined: Jul 2009 Posts: 10 | Thanks so much for the heads up. Blessings to you.
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sharon, how is your brother doing after going thru all of what he did? Does he seem ok with it or has his mental state changed. Keep an eye on that so you can keep on the happy side if you can. It will work on a mind if you let it. Keep us up to date and good luck to both of you.... Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2009 Posts: 10 Member | | OP Member
Joined: Jul 2009 Posts: 10 | Hi Jim - I just got home from the hospital. It was really hard and frustrating for him because he couldn't talk and was trying so hard!!! I was encouraging him to write but he was still trying to talk:( It was really sad for me to watch. He was also restrained because he was pulling out the tubes but he said he didn't know he did it and said sorry. I know it's so hard for him right now. They plan to move him out of ICU in a day or two. Thanks so much for checking in...
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Jul 2009 Posts: 10 Member | | OP Member
Joined: Jul 2009 Posts: 10 | O...I'm sure he's being tested mentally right now...I think anybody would be going through this.
Sharon - Caregiver of brother age 49 Stage IV
DX June 2009 with oral cavity carcinoma-scc
Correct DX is t3n2cmx
Surgery scheduled for 8/4/2009
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Hi Sharon, Glad to hear the surgery piece is over. The recovery is tough and it's tough to watch. My husband had a tough time not talking and not being able to swallow his saliva. He didn't want anyone around him. I came anyway and did his mouth care.I didn't talk much to him since he got more frustrated and taught myself to knit while sitting there for 2 weeks. He wrote notes but got tired of writing everything down. When you are with him, ask them to take the restraints off. He will be less confused once all of the anesthesia is out of his system. The pain meds can make you loopy too. I had to ask them to give him some ativan since he was quite anxious with the mucous in his throat and not being able to swallow, he felt like he was choking.
best of luck, keep us posted,
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
