| | Joined: Mar 2010 Posts: 1 Member | OP  Member
Joined: Mar 2010 Posts: 1 | I'm writing for my dad who is scheduled to have a total glossectomy next week at Hopkins. His BOT tumor is rather large and, although we have investigated other treatment options, we've been told that removing the tongue is the only way to go. They are not sure if they will need to remove the larynx but we should hopefully know this before he goes into the surgery. Has anyone gone through a similar situation? We have an idea of what to expect but it would helpful to find someone that has gone through the same thing. My dad knows that this is going to be anything but easy but we hope and pray that there is a light at the end of this dark tunnel.
Alison (daughter of Bill)
2/09 - BOT T4 SCC - TPF base chemo followed by 70 GY radiation
9/09 - PET scan clean
12/09 - CT scan clean
2/10 - PET scan showed recurring SCC, biopsy confirmed SCC
3/10 - awaiting total glossectomy, possible larynectomy
I will surely die one day, but I am not going to do it each day until then.
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Alison,
We have a few members who have gone though this same procedure. It is a tough road but they have made it through. If you go to the search box in the upper right of the screen you can type in a few key words like �total Glossectomy� and get many posts from those who have been through this.
P.S. I love your signature line.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Well you came to the right place. For starters, you should read the OCF main site, especially this section. Emotional Cancer OCF Lots of us here have had part or all of our tongue removed and many of us have had recurrences just like your dad so we are living proof there is indeed light, love and laughter at the end of what you so aptly describe as a dark tunnel. Keep the Faith Charm
Last edited by Charm2017; 03-20-2010 02:38 PM. Reason: add recurrence
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I hate hearing things like this....Stay strong and keep the love around.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | 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 | It may seem weird but we do welcome people here.
The main reason is that you have found this site where you will get help and very usefully information from others who are or have gone through what you are facing. Keep asking questions�as many as you like, and keep us up to date on your progress.
I also love the last line in your signature.
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: 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 | Alison, welcome to OCF. There are a few other members who have had the same procedure as what your father is facing. I know its a difficult time for everyone involved. We here at OCF will support you and of course your father with moral support and answering your questions. Best of luck to your dad next week with the operation.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I have had a total laryngectomee but no surgery to the tongue so I am able to speak. I think the most frustrating and frightening thing about these surguries is your inability to communicate your needs. Buy him an erase board so he will have something to write on. I hope he will not need any surgery to the larynx but if he does and I can help, email me.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | |
| Forums23 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
