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Three months since surgery, doing great. mucoepidermoid carcinoma of soft palate

SamAct
Posts: 9
Joined: May 2012

I wish I had found this website BEFORE going through my surgery, but it's better late than never! My google searches really scared me, but I am glad I did, for it eventually led me here. (I also prefer to be scared and semi-informed than clueless.)

I just turned 32 last week. For 5+ years (that is, I remember it being at least 5 years, perhaps even 8-10 years), I had experienced some degree of pain in what I thought was my left ear. Usually when I drank something cold or drank itoo quickly. Had trouble sleeping on my left side at times. I had gone to an ENT over this time period who said everything looked ok, and that it might simply be sensitivity.
I had gone to the Dr one day this past April thinking I had a bad ear infection / sore throat. He took one look and saw a lump in the back of my throat. Never seeing something like this before, he called the ENT I had been seeing me, who said it was likely a tumor that had to come out. He recommended another ENT for further testing and surgery.
The biopsy hurt like ****. Almost knocked me out. (I was expecting a little pain, but not that!) Seems there were many nerve cells in there. I then took an MRI and CT scan. The tests were not conclusive, so I had to wait for a proper diagnosis following the surgery.

I had an intra-oral procedure done to remove the tumor. My stay in the hospital was rather short, only two days. The tumor was in a "good" spot so the surgery was relatively minor. The recovery over the next week was more painful than expected, and I lost around 10 pounds from not really eating that much. (I have gained 5 pounds back, and am happy to maintain :) )

About 1-2 weeks post surgery, I had some trouble with bleeding. Not heavy bleeding, but enough that I would end up with big clots in my mouth, only to clean it out and restart the bleeding. I ended up back in the hospital two times, where all they could really do was clean it up a bit. Thankfully, it stopped at the end of the second week.

As for the diagnosis, thank God it seems to be a good one. It was stage II, medium grade mucoepidermoid carcinoma, with clear margins and no sign of metastasis. The radiology oncologist said that radiation was not recommended. (We discussed it at length. He didn’t think I was too crazy for asking whether I should have the radiation regardless, but was convinced that it shouldn't be done.)

As of this week, it has been three months since my surgery, and I am doing great. It still seems like my mouth is dry at times, but it has been improving.

Further scans be done in about Sep 2012...

CivilMatt's picture
CivilMatt
Posts: 3066
Joined: May 2012

Hi SamAct,

Glad you found us, was it the sign on the freeway or the ads on television, oh that’s right you Googled us, smart guy. Do you think the cancer had been lurking for 5+ years? Glad you found the right ENT to help diagnosis you. Also, great to hear you took care of the intruder with surgery only, the rads and chemo (side effects) can be entertaining (to say the least). Now don’t get lackadaisical and forget your doctor appointments and if anything bothers you let someone know, from now on you want to be on the offence.

Best,

Matt

hwt's picture
hwt
Posts: 1991
Joined: Jun 2012

Sounds like you dodged a bullet. So glad you are doing well and do not have to have rads or chemo. God Bless!

SamAct
Posts: 9
Joined: May 2012

The Dr's theory is that the tumor may have been there for years, putting pressure on the general area, manifesting as pain near my ear. I can verify that since my surgery I have been able to sleep on my left side (a whole new world!) and there has been no pain when drinking cold/quickly. Likely, the tumor was slow-growing over the years and only became visible in the mouth recently.

The lesson I have learned is that you have to listen to your body. Although I did see an ENT 3-4 times before the tumor became visible, it would have been worthwhile to take some scans after the second or third visit. Thankfully, in my case, it does not seem that it would have made much of a difference. But I will definitely be more vigilant going forward!

katenorwood
Posts: 1853
Joined: May 2012

SamAct,
I am so happy for you ! I also didn't find this wonderful site until I was post surgery and treatment. I'm wondering if maybe things would of...there I go again with the what if's. I have a different dx, ACC. It is fantastic to read posts like yours. I wish you continued success with your health, and welcome to our group ! Please keep us updated, you truely are an inspiration to me ! Warmest regards, Katie

patricke's picture
patricke
Posts: 484
Joined: Aug 2006

Hey SamAct, sounds like things are going very well for you, so congratulations indeed! Here's wishing you continuous reports of NED!

PATRICK

SamAct
Posts: 9
Joined: May 2012

I am off to the dr tomorrow morning for my 4 months follow up. The healing inside my mouth has gone extremely well, and you can't even tell that anything was done. I do find that my mouth is dry from time to time, although it's not too bad.

I called the Dr's office to find out what to expect at this visit, and was somewhat frustrated by the lack of info. They would not offer anything, would not say whether it was to be a quick visit, if there were to be scans, etc.

Also, I am not clear on the differences between the various types of scans (CT scans and PET scans) and will be sure to get as much info as I can.

I guess I will just have to find out in the morning!

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I'm thinking there may not be scans. I have special instructions before scans (no food or drinks, etc.). Usually, doc will meet with me, then tell me when he wants the tests done, and his office gives me appointments and instructions. Wish your office was more forthcoming with info. Perhaps they have no idea of how the visit will go until they're in with you.

Mikemetz's picture
Mikemetz
Posts: 354
Joined: Nov 2011

My HNC detection started with a dentist. I had an impacted wisdom tooth (so they thought)that was pressing against my tri-facial nerve, making me hurt incredibly. The wisdom tooth and molar came out, but the pain didn't go away--got way worse. I went to an ENT who spotted the tumor right away, and did the biopsy. Turns out it was the slow-growing tumor pressing against that nerve and causing the extreme pain. Mine was MEC, too--but was treated pretty much like SCC, with chemo (cisplatin) and rads. Glad to say that I'm 3 and a half years with NED, but still feeling some side effects from the rads. Also glad to report that I've had nothing but the best doctors along the way (12 by my last count), and one brave RN who saved my life one night in the hospital. This stuff is hard enough when it all goes according to some planned series of events--I couldn't imagine having to deal with incompetent doctors.

Mike

LeoS2323
Posts: 143
Joined: Mar 2012

Have you had your follow up Sam? How did it go?

Agree that wouldn't expect you to have scans. As you have avoided radiation and chemo and it seems your MEC was localised / not high grade I don't think you would need PET scans.

Although PET is a fantastic imaging method for cancer, it does involve a low dose of radiation so shouldn't be used unless absolutely necessary.

I am having MRI scans every 5 months as it is the safest and still a very good imaging technique which involves no radiation. Seems a good plan and I trust my doctor.

All the best

Leo

SamAct
Posts: 9
Joined: May 2012

I was able to schedule an MRI the same day and everything looks good!

Turns out, the usual secretary was out the day of my last visist, so they did not have me scheduled. Explains why I didn't receive a reminder the day before! However, they still fit me in.

Next appointment in a few months.

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

I'm always relieved for everyone who goes in for the first scans, and they are NED....Congrats to you!!!

p

SamAct
Posts: 9
Joined: May 2012

Just had my (almost) one year scan... NED!!  :)

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

NED is very good these days...

JG

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

congrats on the ned!!  we all live to meet him and so glad so many have got to meet him lately.

God bless,

debbiejeanne

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