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Joined: Feb 2015
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SusieB Offline OP
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Joined: Feb 2015
Posts: 5
Hi members,
I've put off joining for over 4 years and 4 surgeries. I've read the posts here and kept telling myself I didn't belong because I've been in denial.
After I refused radiation and chemo 1 1/2 years ago the cancer has now spread to my jaw which will be replaced with my fibula tomorrow morning. I will know the extent of damage post surgery. I had planned to overdose rather than go through anymore treatment. I have lived in constant pain since my first surgery 4 years ago and knew I couldn't continue with increased pain. I'm a single mother of 2 sons, 18 and 20 and I'm afraid of being a burden to them. They are then only reason I am going ahead with surgery now. I'm not ready to leave them.
Any suggestions on pain meds and how to get through this will be greatly appreciated.
Thank you!


2010-surgery for stage 2 squamous cell carcinoma of right lateral tongue. Partial glosectomy with right neck dissection. Clear margins
2012-return of cancer to same area of tongue. Surgery with removal of 2 molars which irritated tongue. Clear margins again.
2013-return of cancer to tongue, floor of mouth and jaw where teeth were
extracted. Rad and chemo suggested - I declined.
2/2015-Mandible fibula, free flap surgery. My leg is truly in my mouth 😆
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Sorry you have to go through all this. You seem clear in your mind about what you want now. I'm nearly dropping off to sleep but can say that pain meds should handle your pain during and after surgery and in the future. Morphine is standard after surgery and there are a couple of alternatives if you react adversely to morphine. I had Fentanyl in a patient administered pump: it worked very well.

As you recover, drugs like Oxynorm and Oxycodone, together with what we call Paracetamol here in New Zealand are quite successful at dealing with the lesser pain a week or so down the track. I experienced the benefit of a slight euphoria each time I has Oxynorm. I feel it helped me psychologically as well as physically. Probably just me but I found it was very good at dealing with discomfort.

You have been through a lot. I can understand the despair that arises when the disease just won't leave you alone. This most recent time I reached out for every bit of psychological help I was entitled too. It helped. You need support, you need to be there for your sons ... and for yourself. There can be a certain richness to life after cancer, even with a disability. It's not easily won but well earnt.

And you must take the adjuvant treatments if they're offered. If life is going to be rich, you need a lot of it:)

Last edited by Alpaca; 02-16-2015 04:39 AM.

1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Welcome to OCF, Susie. Im glad you have joined our group and posted. We will help you get thru this next surgery and recovery. Im so very sorry about what you have been thru and the path it has now lead you to.

A mandibulectomy is a big surgery. Its usually 10+ hours. Ive seen many go thru this (including myself). As far as pain meds, make sure your doc understand you live in constant pain and it needs to be well controlled. I suggest asking to doc to prescribe 2 different types of medicine. This way you can alternate between the 2 and never have to wait until 'its time' for your next dose. Afterwards if you are still in constant pain maybe go a low dose of the fentanyl patch instead of taking meds every few hours.

At your treatment facility ask if they have counselors or therapists you can talk with. It sounds like you have many things going on and could use a hand. Life isnt easy for a single parent, Ive been there and understand what its like. Add in facing your own mortality with a deadly disease and its so much more difficult. A large percentage of OC patients become depressed which is easy to understand after how horrible the treatments can be. It would be a good idea to have someone to help you in the professional capacity, maybe some meds would be helpful as well.

Please know you are not alone, we have been there and understand all too well the ups and downs of what you are going thru. We are in your corner. Stop back and post often.

Best wishes!


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
Joined: Jan 2013
Posts: 1,291
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Welcome to OCF, susie. I'm glad you decided to join. You know we understand what you are going through. Pain can be controlled. There are pain management specialists so make sure your doctor(s) get the pain under control right away. It is very important to keep it under control too. Letting the pain run is hard to reign back in. It is much easier to take a bit more to settle the pain back down.

Others have gone through the surgery you have planned. It is difficult but you will get through it. Please post here as you proceed through treatment and recovery. So many of the daily issues have been experienced by many here and can offer great suggestions to help out.

Good luck, one day at a time.

Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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HI there... I'm sorry you've had so many recurrences. Sometimes what we consider the easy way (just having the surgeries and avoiding rads and chemo) isn't always the easy way in the long run. If they recommend it after this surgery i would like to suggest you go with radiation and chemo. It is a horrid treatment. I'm not going to lie, but usually there is light at the end of the tunnel after it. Everyone ends up with some limitations but for the most part it's worth it. (my limitations are.. I need to drink fluids when I eat, and a bit of post nasal drip) That's it. Some people have difficulty swallowing, are unable to swallow at all, but that is dependent on a lot of factors. Some have pain. But it really depends on what they've done and how they do it.

I know chronic pain can cause severe depression as well as having to get back into all of this all over again. I would definitely find someone to talk to.

Your kids still need you. You are NOT a burden. Do what you can to get better for them.

I have adult kids so I know what I'm talking about. You want to be around to see them have their children and be a doting grand ma.

hugs and welcome


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Feb 2015
Posts: 5
SusieB Offline OP
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Joined: Feb 2015
Posts: 5
Hi All,
Thank you for your kind replies!
I'm a month out of surgery and can honestly say it was the hardest thing I've ever done. The good news is my healing is ahead of schedule. My voice and swallowing are still intact.
I don't know if anyone truly understands this disease unless they've lived it.
Not the surgeons, nurses, anyone. I plan on going back to Mayo once Im
better and offering my advice, whether they want it or not.
Thank goodness, the pain has not been an issue. The cancer pain was far worse than anything caused from surgery. I didn't even need morphine following surgery and was up and walking without assistance in 24 hours. Liquid Tylenol has been all I've used in 3 weeks.
Even without my voice I managed to get I to an argument with swallowing technician who insisted I needed a scope to determine whether or not I could swallow despite the fact I'd been eating solid food for 4 days. I left refusing to do test. She called dr who saw me in cafeteria getting lunch. He quickly took me back to remove nasal
feeding tube. I guess what pisses me off the most is not
having a voice or being treated like an individual. The treatment of this disease
is one size fits all which fits me as well as the stupid hospital gown that I had to wrap around myself twice to cover my 100 lb.
body.
Sorry. I'm rambling and venting. Not talking for almost a month has left me with a lot to say!!


2010-surgery for stage 2 squamous cell carcinoma of right lateral tongue. Partial glosectomy with right neck dissection. Clear margins
2012-return of cancer to same area of tongue. Surgery with removal of 2 molars which irritated tongue. Clear margins again.
2013-return of cancer to tongue, floor of mouth and jaw where teeth were
extracted. Rad and chemo suggested - I declined.
2/2015-Mandible fibula, free flap surgery. My leg is truly in my mouth 😆
Joined: Nov 2009
Posts: 644
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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Joined: Nov 2009
Posts: 644
You ring with energy so you must be doing well. I agree that it is a type of surgery that can take us down to rock bottom. I've had a few abdominal surgeries but nothing compared to the big oral surgery, especially when there's a trache involved. It's kind of wonderful how the body heals though.

I envy you your ability to eat. I wish I could just pick up a bit of food and eat it, have a piece of toast, eat a whole dinner of meat and veg. On the other hand I'm lucky because my swallowing was not affected and as long as I stick to soft foods I don't have aspiration problems.

I wonder if your swallowing therapist was concerned about how well things went down and if they always went down the right way. I have the camera put up my nose and down my throat at every check up.

And the gowns!!! When you're not feeling well and you're trying to thread the tapes through the holes. And when your backside shows and no bra.

But really, you are doing well and I look forward to reading more of your venting sessions:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Jun 2007
Posts: 10,506
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,506
Likes: 2
Wow, you are one tough cookie! In only a month you have come incredibly far. Im surprised how well you dealt with handling and managing your pain. Congrats on your ability to eat and being able to talk. Im sure this has made everything so much easier.


Wishing you all the best with your recovery.


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
Joined: Apr 2006
Posts: 583
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Apr 2006
Posts: 583
Hi Susie, Glad to hear your doing so well. I too have walked down that same surgery. You are right it was a hard one.
Really Glad you posted. It is always helpful to all of us to learn from each other. There is a lot of information here to help us all get better. I have learned so much here.

Diane smile


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015

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