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#198450 06-03-2019 08:50 AM
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Posts: 239
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2 weeks ago I was diagnosed with Stage 4 Oral Cancer (T3 N1 oral squamous cell carcinoma) in the left side of my tongue, but has just crossed the middle.

My team have suggested full glossectomy and reconstruction, addition of permanent PEG and tracheostomy for life, although they aren't removing my larynx. Followed by radiation therapy.
They have also suggested (and booked) me to meet another team for a second opinion.

I'm 39 years old, social smoker and minimal drinker, which sucks.

I'm just navigating the site but would love to talk to people who are living with a trach and PEG. I'm in the UK, but happy to read all experiences.

Last edited by Dizz_zzey; 06-03-2019 09:04 AM. Reason: Made an addition

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
Dizz_zzey #198452 06-03-2019 10:41 AM
Joined: Jun 2007
Posts: 10,506
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Welcome to OCF, Dizz-zzey! Im very sorry to read about what you were recently diagnosed with and what a rough treatment plan you were given . I know its very scary not knowing what comes next or which way to turn. Im very glad you discovered our site to help you with info and support!!! You can read thru thousands of posts here on many varied topics and also on the main OCF site for up to date science based info on any/everything about oral cancer (OC). Im adding the link at the end of my reply. Theres TONS of helpful and informative info that Im positive will help you to understand more about your illness. Learning about OC will help to to be a strong advocate for yourself.

I know you are in the UK and I apologize in advance for my ignorance, I do not know anything about how your medical system works there but here in the US second opinions should always be done at another seperate facility. We have very large, best cancer specialist in hospitals/centers where they have all the top physicians and work together using a team based approach so all the specialists work together to make each individual patients treatment plan. These Comprehensive Cancer Centers (CCC's) are the best of the best here in the US. The CCCs are where if its at all possible for US patients to go for at the very least a second opinion. By the first set of physicians getting a second opinion for you and booking it, you may want to be certain the second facility is not related in any way to the place you have already been to. The reason Im saying that is a seperate facility wouldnt have a problem creating a treatment plan without knowing what the first facility planned. But if the second place works with the first one, they could be just mirroring whatever the first opinion said. OC is an absolutely horrible disease with at times horrendous treatments and long seemingly never-ending recoveries... but, it is doable and we will help you get thru whatever you are facing.

One thing you may want to consider starting to do already is to eat all your favorite foods, desserts too. Hearing about needing a permanent feeding tube and trach can be difficult to hear and accept. Having all your favorite foods now to make sure you do not go into this having any cravings. Eating enough during any treatments as well as drinking enough water is VERY important, every single day!!! Dont worry about putting on a few pounds either!!! Most OC patients lose weight when facing eating and swallowing issues during radiation treatments and/or surgeries. You just never know how these things will turn out, just remember "everybodys different" and will respond to treatments, medications, etc in their own unique way. Even if someone has the exact same sized tumor, location of tumor, are the same age, sex, lives around the same area, same amount of stress in their life, profession, and every other characteristic where on paper, they look exactly alike does NOT mean they will experience the same things or even something similar with their cancer, treatments and recovery.

Theres a million little things about trachs and feeding tubes you will pick up along the way. Ive had both and they each have their own complications, dos and donts. One big thing is to keep both sites very clean, washing hands before and after working with either one to avoid exposing yourself to any germs or illnesses you picked up somewhere.

Best wishes with everything!!!

Main OCF Site, Understanding section


Christine
SCC 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 smile
ChristineB #198454 06-03-2019 12:33 PM
Joined: Jun 2019
Posts: 239
"OCF across the pond"
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Hi Christine,

Thank you for the lovely welcome.

No need to apologise for not knowing about UK medical. TBH I don't know too much, however I feel I'm about to be taught. My 2nd opinion is with another facility. I'm a patient of the Royal London, so I've been sent for the 2nd opinion outside of the Royal London group.

Eating can be uncomfortable but I'm doing my best to keep going. I'm trying to ensure I have 3 meals a day. Ice cream features a lot! I also know I need to keep as strong as possible, so I'm adapting to what I can eat.

I have an amazing support group from my husband, family and friends. They're utterly bonkers. I've got exploratory surgery on Friday and they're all going to wear my trade mark lipstick on Saturday and send pictures to me to help make me smile. Things like this will help me in the darkest times.

I know I have a huge battle ahead and I'm so glad for a friend recommending your website. I will read as much as i can.

The thing that really bothers me is that a full glossectomy includes the removal of the larynx, but my larynx isn't going to be removed so I don't understand why they need to put in a permanent trach. If they don't need to put in a trach then I won't need the PEG (theoretically)



Last edited by Dizz_zzey; 06-03-2019 12:48 PM. Reason: Added extra bit

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
Dizz_zzey #198455 06-03-2019 03:40 PM
Joined: Jun 2007
Posts: 10,506
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You are very lucky to have such a great team players to cheer you up on days you may feel low!!! Ive always thought moral support does wonders for patients. By thinking positively it helps patients remain calm so they can avoid worrying too much and getting carried away with the "what if's" which is does NOT help at all, its just counterproductive. Ive found staying super busy helps to pass the time when we all tend to go to those dark places, movies with intricate twists and turns and goos books helped me tremendously. When that didnt work I moved on to my very least favorite chore... cleaning out my closets and dressers, By the time I began mr treatments, every closet was overhauled, plus i did my spring cleaning and also the fall clean up too! LOL!

Did your friend that sent you here use our site? Over the years we have had quite a few members from the UK.

The doctors will have a much better idea of whats going on and how much tissue they will need to remove once they get in there during surgery. Im sure they are giving you the worst case scenarios to make sure you understand the seriousness of your illness and also that this has the potential to make a major life changing impact on you. Its a very good sign to me that they are covering everything so well so you know what you could be facing. We're always the most afraid of the unknown. Reading and learning about oral cancer will help you better understand everything and for me I found it easier to accept when I knew more about it. I never even heard of it when I was first diagnosed. Luckily I found OCF within a couple days of my original diagnosis in 2007.

Over the years Ive been with OCF, Ive met many different people from all over the US. Some had a permanent trach while others couldnt eat and needed a feeding tube but the majority of OC survivors/patients I would never have known they ever had OC. I couldnt see their neck scars they showed me. Usually surgeons will cut along the natural folds of the neck so it will heal and not be seen. Even the patients who had neck dissections I thought looked really good for what they went thru. Time really does heal all wounds. Having a good attitude will help make everything easier too smile

We may be far away in the US, but when you joined our group you became one of our online family. We will try to help you as much as possible.


Christine
SCC 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 smile
ChristineB #198490 06-10-2019 11:18 AM
Joined: Jun 2019
Posts: 239
"OCF across the pond"
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Thank you so much.
My cousin, whi had breast cancer, said that cancer diagnosis is the worst private membership but you meet those most amazing people. She's not wrong.


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
Dizz_zzey #198517 06-17-2019 01:36 AM
Joined: Oct 2017
Posts: 32
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I still have PEG.

I had trackie twice. You will have to have trackie if you have surgery and radiation

I have to say trackie is not a pleasant thing


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Perineural invasion present
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18, 10/18
CT - NED 02/19, 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
CT - NED 10/2020
Michael Young #198589 06-25-2019 05:32 AM
Joined: Jun 2019
Posts: 239
"OCF across the pond"
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I know I'll have a nasal feeding tube in hospital. They said I'll probably have a PEG for a few months whilst the swelling goes down.

The trackie I understand why I'll have it, but I'm not looking forward to it at all.

However my life is a fabulous life and these small (hopefully) temporary inconveniences are worth it to help me live my life.


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
Dizz_zzey #198590 06-25-2019 06:45 AM
Joined: Jun 2007
Posts: 10,506
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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I absolutely LOVE your positive attitude!!!! That will definitely help get you thru whatever path you may be on with your OC treatment and recovery.

Im a firm believer that positive thinking can help make everything easier, even the worst of things. Sometimes some things are quite a challenge when trying to find something, anything positive about a situation.

You are 100% correct with your statement of doing whatever is necessary to get thru something is what you will do. Plus you have many people who are supporting you thru this which is a HUGE help too.


Christine
SCC 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 smile
Dizz_zzey #198597 06-26-2019 10:38 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Hello, I'm saddened to read your story and that you have need of support.
It sounds like you have a large tumour if it has crossed the midline. Do ask about partial glossectomy with forearm free flap.This may be an option other than full glossectomy.
My husband had a large tongue tumour. It was at the base of tongue and also crossed the midline. He was initially treated with radiation and chemo, but this did not work. By this time his tumour extended into the epiglottis ( which is the top portion of the larynx). Kris then had a full glossectomy, plus a laryngectomy . Does your tumour involve the larynx? Why are they recommending Laryngectomy? If you have a Laryngectomy you don't require a tracheostomy as you will have a permanent opening on your neck to breathe through. If your epiglottis is involved, then , unless they do a laryngectomy , you will be at risk of aspirating food and fluids. Sorry, I'm a bit confused as to where exactly your tumour is and what treatment is recommended.
Anyway, my Kris now has the stoma on his neck to breathe through. There is no risk of aspiration. Even without his tongue, he can and does swallow. His PEG is long gone. He also has intelligible speech.
I'm wanting to give you hope Izzy. Kris has no tongue and no voice box and is alive and well 8 years post diagnosis. Life is certainly different, but it is still good. Please ask me any questions you want/need answered. PM me if you want. Take care,
Tammy.


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
tamvonk #198660 07-09-2019 01:21 AM
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Posts: 239
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Sorry for the really late reply. I've needed some time as it's been a bit of a whirlwind.

Chris; Positivity is a massive part of my personality. It's got me through so much, but I'm also realistic. Thank you for your compliment laugh

Tammy; Thank you so much. My tumour is in the left lateral side of my tongue and 1.5cm over the midway point, plus 2 nodes. T4N2bM0.

So much has changed over this month. So my 1st team (who wanted to remove everything and had booked my surgery date without telling me, and were so brutal in their delivery of my cancer diagnoses and just so negative that I had massive anxiety before every appointment) they recommended I go for a 2nd opinion with a team from another area. 6 hour round trip, but off we went. Team 2 were amazing. Offered a partial glossectomy (up to 2/3's of my tongue), rads/chemo, reconstruction, TEMPORARY track & PEG. bTheir positivity and attitude was fantastic. I was ready to sign up there and then.
Team 2 iintroduced me to Dr B, from another Team. I was eligable for a clinical trial to have immunotherapy. It's already in phase 3 of the trial. I could choose between pre-surgery or post-surgery. Dr B wanted me to meet with Team 3 the following week.

So I did. I'm so glad I did. Team 3 are superb. They're from The Royal Marsden and they are rocking my world. They understand me far better than I could have imagined. They also recommend a partial glossectomy with a free flap, rads (possibly chemo), plus the usual therapies. As I wanted to see if I could get the pre-surgery immunotherapy (because it can reduce tumours before surgery leaving me with a little bit more of my own tongue to use) I decided to go with them. It felt so good telling Team 1 that I have chosen the trial as it meant that all of my treatment and care for the next 5 years will be with the Royal Marsden.

My larynx and epiglottis are clear of cancer, it hasn't spread any further than my tongue and 2 nodes on the left. (It is still 1.5cm over the mid point on my tongue, which is disappointing, but at least it's still contained)

Last Thursday was the radomisation day and the computer put my name against the pre-surgery arm of the trial. I had my 1st dose of pembrolizumab on Friday!!

I've got tongue strengthening exercises to do and I've been asked to keep eating as normally as possible. Okie dokie!

I've also been to the hospital dentist who is going to remove 4 teeth from my left (where the rads will happen) at the time of surgery so that I won't bite my new tongue and because cleaning them is difficult, oh and also because rads will ruin them.

The surgery doesn't scare me, but waking up not knowing what will be left of the old tongue does scare me.The start of the pembro treatment also is the countdown to when my surgery will be. However I will ask my specialist to talk me through his surgical plan as I need to visualise it to help ease my mind.

But for now I'm going enjoy that I've got 6 weeks of as normal eating and drinking as possible. Bring on the ice cream!


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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