| Joined: Jun 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | OP "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | Well now, my date for surgery has arrived, 13th August is the day where they will remove up to 2/3's of my tongue and do a neck dissection on both sides of my neck to remove the 2 tainted nodes on the left and then a cluster on both left and right. I will also have my free flap reconstruction and I'll lose teeth from my left.
I'm nervous but also strangely calm and relieved that it's happening. This is down to you guys giving great information and support.
Before the surgery I'll have one more dose of pembrolizumab, which will be on 26th July.
I've also been to the pain clinic who changed my medication so that I can eat and drink again, and I've been referred to a counsellor after I broke down in the pain clinic.
So the countdown to remove the tumour, nicknamed Larry, has begun.
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
| | | | Joined: Jun 2019 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2019 Posts: 62 | I’ll be thinking of you on that day Dizz_zzey. I think what you call breaking down is more like a catharsis (emotional release), a way of cleansing one’s self of all emotions so we can regroup and become strong again. Your defense mechanisms are kicking in for you. We’ll be with you in spirit that day. Hugs.
SSC Lt sublingual tongue; Age 62 Positive biopsy 20June2019 Staging done 2 Jul : Stage 1 Quit smoking 15 years ago; not a drinker; no HPV Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up. Partial Glossectomy 22Jul2019
| | | | Joined: Jun 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | OP "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | Thank you Mokie. Breaking down was definitely a release and I've been referred to a counsellor for extra support.
How are you feeling after your surgery?
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
| | | | 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 | Dizz_zzey,
I’m wishing the best of luck with your surgery! It seems like awhile you preparing for this day, and no worries, everyone gets nervous! I hope you’ll soon recover and be able to contribute to the site once again, but gel well first!
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: Jun 2019 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2019 Posts: 62 | Dizz_zzey, Pain for the first 5 days was pretty exhausting, but today I think I can wean myself off the narcotic as it appears to be making me depressed. All I want to do is cry. My F/U with my surgeon is next Friday and I’ll get the results of the pathology report whether the margins re clean. Haven’t gotten the results of that and I’m already fretting a reoccurrence. Never read about anyone that goes on to live to be old with this diagnosis. Hate reading the statistics cause it makes me feel like “what’s the point in all the debilitating treatment”. I guess this way of thinking is part of the depression. Have no family who lives close for emotional support. Worked for the military for years so friends moved on quickly. Probably need to seek mental health support regardless what the path report shows next Friday. I don’t think a referral from my surgeon would be an unreasonable request.
Last edited by Mokie; 07-26-2019 04:30 PM. Reason: Word correction
SSC Lt sublingual tongue; Age 62 Positive biopsy 20June2019 Staging done 2 Jul : Stage 1 Quit smoking 15 years ago; not a drinker; no HPV Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up. Partial Glossectomy 22Jul2019
| | | | 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 | Mokie,
That’s a good idea to seek support! Your hospital should be able to help. I was severally depressed, actually suicidal, from induction chemo that hosiitilized me for 6 months, and some of the anti-depressant meds. Most people they may work, but they weren’t for me.
Oh, don’t look at statistics. I think they’re flawed, and may not represent you age and health. Your a unique indiduviak, so these Studies may not represamy you. I think your doing good and handling things well ending soon after ivtook my ambianc
Last edited by PaulB; 07-26-2019 05:46 PM.
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: Jun 2019 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2019 Posts: 62 | Thanks PaulB for your response. I know the first thing they want to do is put you on an SSRI. I don’t want to make a bad situation worse by becoming suicidal. What ever happened to just counseling sessions. Seems no one wants to take the time to just talk with the patient. Easier to offer medication. I can only imagine how you felt during that time PaulB. I guess it can hurt to reach out to any services they have to offer. And I’m taking your advice. No more reading statistics and research studies!
SSC Lt sublingual tongue; Age 62 Positive biopsy 20June2019 Staging done 2 Jul : Stage 1 Quit smoking 15 years ago; not a drinker; no HPV Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up. Partial Glossectomy 22Jul2019
| | | | Joined: Jun 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | OP "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | Hi Paul, Tell me about it! The wait has been due to switching hospitals and then going onto a pre-surgical clinical trial, but it's nearly here! Thank you for your wishes. I will no doubt be on here once I'm well enough to be
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
| | | | Joined: Jun 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | OP "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | Hi Mokie, Don't look at statistics. My first team told me that I would need my entire tongue removed (total glossectomy) where I'll need a permament tracheostomy and permanent PEG, plus rads. Even after all of that gruelling treatment my 5 year life expectancy was only 30%. Then they asked me if I wanted to pursue the treatment. I'm not the average patient and so I will not accept the average statistics.
Please get yourself some therapy. I'm about to start mine. Having someone who isn't close to you that you can be so open with will help you massively.
My pain team seem to be very different to the USA as they have told me they are going to gove me as much as they can to make me as comfortable as possible. I've a meeting with them tomorrow to catch up over my current pain plan and discuss what they wish to give me during and after surgery. I like my team very much.
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Not to go too far off topic...Just an FYI relating to what Dizz-zzey said in the above post about pain management.....
When I had my big surgery for the mandibulectomy my doc prescribed 2 different pain meds for while I was hospitalized. My doc knew me very well, treating me for over 2 years by the time of the major surgery. I had discussions several times about pain and how I did NOT manage pain very well, it could be debilitating to me. Im very glad he knew me so well and was on top of everything, he even knew my children and always asked about them as his children were similar ages. Anyway, he prescribed 2 different pain meds where once I woke up after the 10+ hour surgery I could switch them off and on so I never had to wait until a certain time to take another dose of pain meds. When in the hospital many patients in the US have their own little button that delivers pain meds when they need them, I didnt have this. But, having an alternative pain medication to fall back on when the next dose was well over an hour away wait was priceless!!! Sine you are going to see your pain management team tomorrow you may want to ask if this is a possibility.
Managing pain is very important part of the road to recovery. It negatively affects patients when they are in pain. You're very fortunate to have a pain management team to handle this!!! At least thats one less thing to think about with the upcoming surgery. 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 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | OP "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | Hi Christine, I didn't have to ask for the 2 different pain meds, my team suggested it for me. One will be put into my catheta and the other I'll be able to self manage. I'll also have liquid paracetomal (anadin), but thank you for the guidance
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Thats great!!! Your team is on the ball!!! To me it sounds like they are on top of everything. 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 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | OP "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | They are really on the ball. I feel confident with them.
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
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