Recurrence
I was diagnosed with squamous cell carcinoma under front of my tonque last May, 2012. Had radial free flap and right neck dissection in June, 2012. 8 weeks of radiation with 3 sessions of chemo (cisplatin) and finshed in mid September, 2012.
My latest visit in mid July was okay. About 2 weeks ago I started having pain in the right side of my lower jaw when opening my mouth and now am having some pain when swallowing. I have made an appointment with my doctor and it is scheduled for 9/4. I am concerned that I am having a recurrence and would like to hear from anyone who may have some information regarding this. I have been told by my doctor that 1-2 years out is the greatest risk of recurrence.
I am feeling very anxious right now and with what I am feeling am thinking the worst.
Comments
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BT 1....
This cancer surviorship can be a nerve-wracking business, huh?
I'm happy to hear that you have an appointment with your ENT, if for nothing else than to get some peace of mind. 40 radiation treatments could certainly cause some pain in the jaw, and get you some pain in swallowing....I don't know if there is a time table for the fibrosis from rads, but would imagine that a year out it wouldn't be far fetched to think it might be from that.
We say here over and over "it ain't cancer till somebody says it is".... Your anxiety is something we can all relate to....any ping/pang/unexplained pain always carries the "uh oh" factor.
Sending positive thoughts, and a prayer that you're dealing with the "gift that keeps on giving"......radiation.
p
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Welcome BT
I've been kicking around here for a few years now....
Dx in January 2009 STGIII SCC Tonsils, a lymphnode and HPV+, Tonsils out, sisxteen weeks, four chemos, 35 daily rads..., finished all of that June 2009, all clear since.
You're right, first two years are important...
But I will say, more than likely it's not cancer..., but the scan is always a good check. Better pro-active than re-active.. Reason I say it's more than likely not..., very few here have had a recurrence or second cancer..., not unheard of and there are a few battling it. But overall there's way less...
Best,
John
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HI BT, and welcome (sort of)Skiffin16 said:Welcome BT
I've been kicking around here for a few years now....
Dx in January 2009 STGIII SCC Tonsils, a lymphnode and HPV+, Tonsils out, sisxteen weeks, four chemos, 35 daily rads..., finished all of that June 2009, all clear since.
You're right, first two years are important...
But I will say, more than likely it's not cancer..., but the scan is always a good check. Better pro-active than re-active.. Reason I say it's more than likely not..., very few here have had a recurrence or second cancer..., not unheard of and there are a few battling it. But overall there's way less...
Best,
John
I am a cancer survivor from 4/2010 and this spring, I had the same type situation as you, pain, swelling, etc in my jaw.
I was fearful it was a recurrence of the cancer. My ENT said he thought so too. Anyway, after a long 3 months, I finally
was diagnosed with ORN, Osteoradionecrosis, and am dealing with that currently. What I mean to say, is that as John said, more likely than not it is not cancer, but an infection, or one of the many other side effects that the radiation keeps on giving long after treatment.
So go get it checked, have a Scan of sometype and remember "it ain't cancer until someone proves it to you". Keep a positive attitude and thoughts on this, it helps.
All the best,
Steve
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bt, we all understand
bt, we all understand aniexty!! we've all been (or r go'n) thru it. i will be praying that its nothing more than a late side effect that will go away soon. be sure 2 let us know what the ent says. i hope u r able to calm down some
dj
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It is easy for us to say,
It is easy for us to say, "calm down, don't worry" but the fact remains, we still worry no matter how many tell us not to worry. Jim had a sore inside his mouth that would not heal this past spring. It wasn't until we saw the ENT and he said not to worry, it was not cancer that we finally were able to relax a little. We didn't fully relax however until it finally went away. I am praying yours is something treatable.
Debbie
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Normal
Big T,
Funny... I used to be Big T until cancer. I've shrunk a bit since then
It's perfectly natural to feel anxious when we experience an ache, pain or other symptom that's outside the norm from our recovery experience. As with our initial occurence, symptoms and diagnosis, often there are no symptoms until the cancer has advanced a bit. Typically, SCC is a slow growing cancer. My docs told me I probably had it for a year or more before I even noticed any symptoms (swollen lymph node). If you were all clear a month ago, chances are you're still clear. I don't imagine a recurrence would come on that hard and fast. You know the mantra "It's not cancer until they say it's cancer" and the only way to know for sure is by a biopsy of a suspicious area/node/lesion etc.
I know it's much easier said than done as far as saying to stay calm, but that's all you can try to do until next week. Hopefully this is just a side effect of rads or an infection of some sort and you'll be fine. I'm only 4 months post Tx. I know full well the guantlet that hangs over us concerning SCC recurrence. Just a look at the posts of those who are going for their follow up scans or feeling anxious about a symptom they're experiencing will let you know you're not alone in this.
Sending positive thoughts and prayers your way.
(not so big anymore) "T"
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You are the boss!
Typically, SCC is a slow growing cancer. My docs told me I probably had it for a year or more before I even noticed any symptoms (swollen lymph node). If you were all clear a month ago, chances are you're still clear. I don't imagine a recurrence would come on that hard and fast.
This statement by T is really of note. It brings some logic and sanity to the emotions one has over cancer recurring. To me, a day or a month just does not register. I get new aches and pains all the time but they pass and if one hangs around for a couple weeks, I will get inclined to get on the phone but just can't, won't let cancer rule or control my life.
No matter how hard it is to control ones emotions, just remember you are giving the power to cancer if you let your emotions get the better of you. Stay strong, focused, and in control; just like everyday you BEAT the beast! don
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Thanks for all the posts and the positive comments regarding my anxiety. I really do appreciate it.
I still go by BigT because I was called that for so long but truth is that last year when I went through everything I lost close to 80 lbs. Believe me I needed to lose some weight but I didn't need this to finally do it.
Thanks again to all.
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Look FamiliarBigT_1 said:Thanks for all the posts and the positive comments regarding my anxiety. I really do appreciate it.
I still go by BigT because I was called that for so long but truth is that last year when I went through everything I lost close to 80 lbs. Believe me I needed to lose some weight but I didn't need this to finally do it.
Thanks again to all.
When I first saw your pic, there was a familiarity about it that I couldn't place my finger on. It just came to me.
Jeff Bridges! ~lol~ Seriously!
I on the other hand bear a striking resemblance to a well known cleaning product spokesperson!
"T"
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Hi Big T
Don’t let it worry you too much a lot of us here been through it more then once and are still here doing what we do best, helping others make it. My C was in the nasal area but none the less it wanted to fight and I was just the guy to give it a fight. Please let us know how it goes with your appointment and what ever the outcome keep positive and telling yourself you can do it.
Wishing you the best
Hondo
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I Was Diagnosed With SCC Vocal CordsHondo said:Hi Big T
Don’t let it worry you too much a lot of us here been through it more then once and are still here doing what we do best, helping others make it. My C was in the nasal area but none the less it wanted to fight and I was just the guy to give it a fight. Please let us know how it goes with your appointment and what ever the outcome keep positive and telling yourself you can do it.
Wishing you the best
Hondo
Hi Everyone
What a fine bunch of highly supportive friends you have on this group. Thanks and May God Bless each one of you.
I was diagnosed with SCC T1 N0 M0 on 5 July when the surgeon sent the lesions for frozen histopathology.
Histo confirmed well differentiated SCC and found no markings.
Decision on the table was not to go ahead with radical surgery but instead go in for radiology.
the CT scan after surgery revealed no residual disease and no involvement of cartilage, nodes etc.
Was planned for 25 radiations of 2.5 Gy each which finished exactly one week ago.
I experienced very bad side effects , throat ache, swallowing difficulties and constriction of food pipe. I am still suffering but more than the side effects, my anxiety is killing me.
i want to know that when I do my scan after 6 weeks, what are the chances of recurrence ? We fought a long battle against an enemy we could not see in the CT scan, how will we know about our success ?
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Correcting the TyposRavimalhan said:I Was Diagnosed With SCC Vocal Cords
Hi Everyone
What a fine bunch of highly supportive friends you have on this group. Thanks and May God Bless each one of you.
I was diagnosed with SCC T1 N0 M0 on 5 July when the surgeon sent the lesions for frozen histopathology.
Histo confirmed well differentiated SCC and found no markings.
Decision on the table was not to go ahead with radical surgery but instead go in for radiology.
the CT scan after surgery revealed no residual disease and no involvement of cartilage, nodes etc.
Was planned for 25 radiations of 2.5 Gy each which finished exactly one week ago.
I experienced very bad side effects , throat ache, swallowing difficulties and constriction of food pipe. I am still suffering but more than the side effects, my anxiety is killing me.
i want to know that when I do my scan after 6 weeks, what are the chances of recurrence ? We fought a long battle against an enemy we could not see in the CT scan, how will we know about our success ?
I meant that histopathologist did not find any margins.
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Ravimalhan....Ravimalhan said:I Was Diagnosed With SCC Vocal Cords
Hi Everyone
What a fine bunch of highly supportive friends you have on this group. Thanks and May God Bless each one of you.
I was diagnosed with SCC T1 N0 M0 on 5 July when the surgeon sent the lesions for frozen histopathology.
Histo confirmed well differentiated SCC and found no markings.
Decision on the table was not to go ahead with radical surgery but instead go in for radiology.
the CT scan after surgery revealed no residual disease and no involvement of cartilage, nodes etc.
Was planned for 25 radiations of 2.5 Gy each which finished exactly one week ago.
I experienced very bad side effects , throat ache, swallowing difficulties and constriction of food pipe. I am still suffering but more than the side effects, my anxiety is killing me.
i want to know that when I do my scan after 6 weeks, what are the chances of recurrence ? We fought a long battle against an enemy we could not see in the CT scan, how will we know about our success ?
Welcome to this forum....you have truly bumped into the best bunch of folks you'll ever meet....supportive, kind, and very smart. I'm sorry you didn't find us during your treatment, but glad you did being only one week out of rads. Recovery from radiation takes a while, and the people here will help you get through the next few weeks.
As for anxiety....we all have it in some degree or another. I'm a year out of treatment, and at this moment I'm waiting for the results of my scan last week....anxiety is my middle name this weekend
.All I can tell you at this juncture is to take some deep breaths.....start planning something fun to do in the near future to take your mind off of possibles, and onto the probables. Recurrance happens, but if you hang out here you'll see that most are doing very well.....many for years and years after initial treatment.
The first scan can be scary for sure.....myself, I'm glad they waited 3 months to give me the first scan, after everything had a chance to heal up more. Less chance of a false positive....
p
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phrannie51 said:
Ravimalhan....
Welcome to this forum....you have truly bumped into the best bunch of folks you'll ever meet....supportive, kind, and very smart. I'm sorry you didn't find us during your treatment, but glad you did being only one week out of rads. Recovery from radiation takes a while, and the people here will help you get through the next few weeks.
As for anxiety....we all have it in some degree or another. I'm a year out of treatment, and at this moment I'm waiting for the results of my scan last week....anxiety is my middle name this weekend
.All I can tell you at this juncture is to take some deep breaths.....start planning something fun to do in the near future to take your mind off of possibles, and onto the probables. Recurrance happens, but if you hang out here you'll see that most are doing very well.....many for years and years after initial treatment.
The first scan can be scary for sure.....myself, I'm glad they waited 3 months to give me the first scan, after everything had a chance to heal up more. Less chance of a false positive....
p
I'm dealing with one now, found in a follow-up CT 15 months post tx. My original cancer was of lower jaw and is now found in an isolated tumor in the carotid cavity. I know we all fret about every little oddity but I have to tell you, if it were not for the scan, I would not have known anything was going on. Even when they told me, I could not feel or see anything. Like others have said, fewer have reoccurance than you might think and some on this site have been hit more than their fair share. Pat, for one is a 3 timer living a good life. Prayers coming your way that your symptoms are not cancer.
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Thanks A Tonphrannie51 said:Ravimalhan....
Welcome to this forum....you have truly bumped into the best bunch of folks you'll ever meet....supportive, kind, and very smart. I'm sorry you didn't find us during your treatment, but glad you did being only one week out of rads. Recovery from radiation takes a while, and the people here will help you get through the next few weeks.
As for anxiety....we all have it in some degree or another. I'm a year out of treatment, and at this moment I'm waiting for the results of my scan last week....anxiety is my middle name this weekend
.All I can tell you at this juncture is to take some deep breaths.....start planning something fun to do in the near future to take your mind off of possibles, and onto the probables. Recurrance happens, but if you hang out here you'll see that most are doing very well.....many for years and years after initial treatment.
The first scan can be scary for sure.....myself, I'm glad they waited 3 months to give me the first scan, after everything had a chance to heal up more. Less chance of a false positive....
p
Dear P
Thanks for suh an encouraging reply. You brought some cheer when I needed it the most. I am struggling with pain and incessant cough. But your support and the way you write, lifted me.
Grateful
Ravi Malhan
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Ravi...Ravimalhan said:Thanks A Ton
Dear P
Thanks for suh an encouraging reply. You brought some cheer when I needed it the most. I am struggling with pain and incessant cough. But your support and the way you write, lifted me.
Grateful
Ravi Malhan
The first 3 or 4 weeks out of radiation can be the worst....swallowing is screwed up, mouth hurts, weak from treatment....that cough comes from not having any moisture in your mouth and irritation from the rads. I don't know what kind of shape your mouth is in....so advice can only be haphazard. If you don't have mouth sores and are able to swallow liquids....milk gives the illusion of having some saliva, and for side effects it adds calories and hydration to your diet. Xylemelts also bring more moisture to your mouth.
The cough seems to hit mostly at night (or for me it did)...sleeping upright in a recliner helped some. It will go away as you heal...as will the other side effects....maybe not totally away, but mostly they get very liveable. I still have some dry mouth, and my taster isn't primo....but I can taste many foods that I couldn't in the beginning....and I don't carry a water botte every single place I go any longer.
Get outside, take a walk around your yard....or if you feel like it go round the block....getting out did wonders for the mental part of all this....
p
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also had scc vocal cordsRavimalhan said:I Was Diagnosed With SCC Vocal Cords
Hi Everyone
What a fine bunch of highly supportive friends you have on this group. Thanks and May God Bless each one of you.
I was diagnosed with SCC T1 N0 M0 on 5 July when the surgeon sent the lesions for frozen histopathology.
Histo confirmed well differentiated SCC and found no markings.
Decision on the table was not to go ahead with radical surgery but instead go in for radiology.
the CT scan after surgery revealed no residual disease and no involvement of cartilage, nodes etc.
Was planned for 25 radiations of 2.5 Gy each which finished exactly one week ago.
I experienced very bad side effects , throat ache, swallowing difficulties and constriction of food pipe. I am still suffering but more than the side effects, my anxiety is killing me.
i want to know that when I do my scan after 6 weeks, what are the chances of recurrence ? We fought a long battle against an enemy we could not see in the CT scan, how will we know about our success ?
ravi, i had it in 8/09. had 35 rad trmnts. pretty rough. side effects suck but i made it thru. then in 2/12 i had recourrence. had neck disection and laryngectomy. to date i am cancer free and living well. in fact, i can talk now after 1.5 years of not be'n able to. i do everything that i did b4 surgery except go under water in the pool. i still get n to my waist tho. we're having a family picnic today to celebrate LIFE! i can't wait to get in the pool. you will be fine. no everyone has a recurrence. but as u will learn here, if you do, you can still SURVIVE and LIVE well!!! good luck to you.
dj
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Don't allow the 'devil' to invade
Dear BigT
You have an appt to see your doctor and do not think negatively too fast.
Sometimes the 'devil' just want to whack us to give up on our recovery journey .... tell him to go away and you stay positive.
Our mind power must be positive to be the best medicine for everything.
Our throats get drier when the weather becomes hotter and that gives us some discomforts.
Your anxiety may also make you think of the pain. BE POSITIVE and pray to boost your strength to recover completely !
Nelson
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NelsonOng said:
Don't allow the 'devil' to invade
Dear BigT
You have an appt to see your doctor and do not think negatively too fast.
Sometimes the 'devil' just want to whack us to give up on our recovery journey .... tell him to go away and you stay positive.
Our mind power must be positive to be the best medicine for everything.
Our throats get drier when the weather becomes hotter and that gives us some discomforts.
Your anxiety may also make you think of the pain. BE POSITIVE and pray to boost your strength to recover completely !
Nelson
I saw the doctor yesterday and after examination he could see nothing that led him to believe the pain was due to a recurrence of the cancer. Since the pain had gone away before my appointment he felt I had probably had a "viral event". Does want to see me again in two weeks and depending on how I am doing may want to schedule an MRI but really doesn't think that will be necessary.
Thanks for all the positive comments and good luck to everyone. I also agree with Nelson - pray daily and ask for the strength to recover completely.
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