Cancer coming back ??? Angry now
On 26th July this year,I was operated on for cancer in the mouth, they dug a big hole out of my mouth and took some skin flaps from my left wrist to fill the hole, i spent 3 weeks in hospital,then 2 weeks recovering at home before doing a 7 week course of rads & chemo with Cisplatin.
During the first few weeks of being at home and on the rads chemo course, i managed to be able to start eating again of sorts, soups,jellies,and pureed food to some extent plus the canned high cal drinks through my Peg.
Now 4 months from the op, i have a lump in the lymph area under my jaw bone on the opposite side of the operation, it is sometimes painful and sometimes not, and sometimes feels bigger,but never quite disappears, my doctor says it could be the cancer coming back, now i am very pissed off and scared as to what will happen now.
Has this happened to any of you? and is it possible that it may be an infection or a blockage?
I go for a ultrasound scan & biopsy next week.
I realy dont want to have to go through another operation on my face, i was very fortunate this time round not to have too much facial scarring,
.
Bye
Colin
Comments
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frustration
I had surgery and additional treatment that sounds similar to yours, including the use of muscle and tissue (and, in my case, nerves) from left wrist to replace at least part of what they took from mouth. However, in my case they also did a radical neck disection, removing some 17 lymph nodes, as I recall (seven proved to be cancerous).
I am NOT a doctor so this is explanatory only, and it could very well be something else, such as an infection, as you mention.
Good luck with your tests, which I am glad to read you are going to get. And if you DO need to have the add'l surgery, trust me that the scarring is hardly noticeable and, obviously, well worth it (at least in my case).
Incidentally, I was later diagnosed with the same kind of cancer in my lung. I will omit my usual long story (I have page and blog here if you have any further interest), but suffice it that I am familiar with your frustration and even, perhaps, fear.
Take care,
Joe0 -
"Could be" and "Is": 2 different things.soccerfreaks said:frustration
I had surgery and additional treatment that sounds similar to yours, including the use of muscle and tissue (and, in my case, nerves) from left wrist to replace at least part of what they took from mouth. However, in my case they also did a radical neck disection, removing some 17 lymph nodes, as I recall (seven proved to be cancerous).
I am NOT a doctor so this is explanatory only, and it could very well be something else, such as an infection, as you mention.
Good luck with your tests, which I am glad to read you are going to get. And if you DO need to have the add'l surgery, trust me that the scarring is hardly noticeable and, obviously, well worth it (at least in my case).
Incidentally, I was later diagnosed with the same kind of cancer in my lung. I will omit my usual long story (I have page and blog here if you have any further interest), but suffice it that I am familiar with your frustration and even, perhaps, fear.
Take care,
Joe
Colin,
As I read your post, I am disturbed by your doctor putting out there that the lump "could be" the cancer coming back. Choice of words is so crucial to us and sometimes I don't think doctors understand that. Yes, doctors know stuff. But really saying it "could be" is just speculation. Only the biopsy will tell if this is cancer or not.
Mark has SCC HPV+ tonsil. I only know the nature of this cancer, so like Joe, cannot comment on your case. As far as surgery and scarring...Mark, like Joe, had a radical neck dissection. They took out all of his lymph nodes on the left side and the muscle too. Scarring is minimal and amazing. Mark admits he likes his new thinner neck. I think the sugery was huge in his treatment, and the visable changes are a minimal issue.
Keep us informed. Your anger makes sense. Let it go, if you can, until you have the informtion back from the test. It will be what it will be. You will face what comes. We are with you.
Kim0 -
Could be many things
Sure could be many different things, bad words by your doctors but wait for the scan results to show a better beginning picture.
Also after having done the rad's and chemo I have had since the post treatment time an area just below the jaw line that hurts from time to time, very firm and the size of the end of a small finger. Turns out this is damaged scar tissue on a muscle. Been there now for 14 plus years. Funny now about every couple years the pains show up and reminds me that it could be worse and keep having fun.
None of my two cancer area's hurt, only the effects of treatment and surgery have they hurt.
Prayers going out.
John
Oh, another thought. I have not heard of the cancer being back with in just a couple months after radiation and chemo.0 -
Inflamed lymph nodes
Hi Colin,
Sorry to hear you are in this terrible nervous position. Totally understandable.
It is quite likely that your lymph node(s) is very inflamed and hence swollen and painful, because these nodes nearest to the affected area will be processing the dead cancer cells and other debris from your surgery, so they will be under duress. They are only little tiny guys so they can only so much.
Early scans post treatment can also show the nearby nodes to light up because of the presence of cancer cells getting processed by the node. I am surprised your doctor did not mention this as a possible reason. I also would have thought he could have done a needle biopsy on the spot to quickly determine or better 'rule out' a recurrence.
My pre and 1st post treatment scans both showed activity in the 2 nodes nearest my tumor (Left Tonsil) and 2 of my 3 doctors figured it was the nodes doing their thing.
I am not a doctor so I don't how they determine the difference between cancer cells that have been trashed and active cells, but I would imagine the pathologists should know the difference.
Wishing you the best results for the ultra sound Colin.
Scam0 -
words from a friend of mine
one of my friends is a doctor. when I was first diagnosed she warned me about what she calls doctor potty mouth. It is where the doctor is thinking of all the things it could be and they say it could be this without thinking about what they are saying. IT could be any number of things. there is no way for a doctor to know for sure. only a biopsy can let you know for sure. I will keep my fingers crossed that it is just from an infection (some nasty colds have been going around that leave the lymph nodes large and tender for a while).
good luck!0 -
trashed/active cellsScambuster said:Inflamed lymph nodes
Hi Colin,
Sorry to hear you are in this terrible nervous position. Totally understandable.
It is quite likely that your lymph node(s) is very inflamed and hence swollen and painful, because these nodes nearest to the affected area will be processing the dead cancer cells and other debris from your surgery, so they will be under duress. They are only little tiny guys so they can only so much.
Early scans post treatment can also show the nearby nodes to light up because of the presence of cancer cells getting processed by the node. I am surprised your doctor did not mention this as a possible reason. I also would have thought he could have done a needle biopsy on the spot to quickly determine or better 'rule out' a recurrence.
My pre and 1st post treatment scans both showed activity in the 2 nodes nearest my tumor (Left Tonsil) and 2 of my 3 doctors figured it was the nodes doing their thing.
I am not a doctor so I don't how they determine the difference between cancer cells that have been trashed and active cells, but I would imagine the pathologists should know the difference.
Wishing you the best results for the ultra sound Colin.
Scam
First, hey Colin I agree with everyone here, all give great advice, don't let the "could be"s get to you. Sometimes doctors feel the need to prepare you for the worst more than they need to. My original biopsy was performed because of persistent swolen lymph nodes. They never hurt, and never got smaller. I was told it was typical for them NOT to hurt--though certainly tumors can cause pain. Best to you.
Second, thanks for your thought Scam. I put the active or dying cell question to my medical onc when my six month scan came back. Activity was borderline, but I had the left neck disection, and three of fifteen lymph nodes came back with traces of cancer. One was one of the original two swollen nodes that led to treatment. Again, I had the neck surgery after chemo and rads. Obviously the original one could have had dying ancer cells. I asked my ent and my medical doc if the cells were active or passive. Neither had good answers. I'm getting a new medical oncologist--his contract with my medical group wasn't renewed, just admin finance politics--so I'm going to show my new doc your letter and see if he has a better answer. Like you, I think it should be simple, but I don't know.
Hal0 -
Thanksekdennie said:words from a friend of mine
one of my friends is a doctor. when I was first diagnosed she warned me about what she calls doctor potty mouth. It is where the doctor is thinking of all the things it could be and they say it could be this without thinking about what they are saying. IT could be any number of things. there is no way for a doctor to know for sure. only a biopsy can let you know for sure. I will keep my fingers crossed that it is just from an infection (some nasty colds have been going around that leave the lymph nodes large and tender for a while).
good luck!
I would like to thank everyone for their positive comments, i go for the biopsy tomorrow.
Being on the public health system in Australia is not a real good thing, but it is hell of a lot better than no free health system at all,and that is why i get a dozen different doctors on my case,who all have something different to say.
I am not looking forward to it,but am hoping for the best.
Cheers
Colin0 -
Hoping for the Bestcolinc1 said:Thanks
I would like to thank everyone for their positive comments, i go for the biopsy tomorrow.
Being on the public health system in Australia is not a real good thing, but it is hell of a lot better than no free health system at all,and that is why i get a dozen different doctors on my case,who all have something different to say.
I am not looking forward to it,but am hoping for the best.
Cheers
Colin
Hoping for the Best for your biopsy later today. You did not have a PET? I'm assuming they're doing a needle biopsy. Do you know when you'll get the biopsy results? Hope it's quick.0 -
Sounds questionable
Agree with everyone here, and I'm no doctor but we all have learned very useful bits and pieces from our doctors and nurses and personal cancer experiences.
In my humble opinion and experience, that lymph is not cancer. My whole debacle with neck cancer started with a lump under my jaw, right side back at the corner, and I can tell you it did not get smaller and almost go away, it only got bigger.
Good luck - I'm optimistic for you.0 -
Updatesanta6 said:Sounds questionable
Agree with everyone here, and I'm no doctor but we all have learned very useful bits and pieces from our doctors and nurses and personal cancer experiences.
In my humble opinion and experience, that lymph is not cancer. My whole debacle with neck cancer started with a lump under my jaw, right side back at the corner, and I can tell you it did not get smaller and almost go away, it only got bigger.
Good luck - I'm optimistic for you.
I had a cat scan with a biopsy on the swollen glan done recently, the result was, a possible stone blocking the glan,the doctor did not suggest any cure or remedy,just said not to worry, its not a cancer.
Now,I am having some shocking pains shooting into my ears(any ideas?), a very painful left side jaw(all my back teeth were removed well before the operation, so its not a tooth ache) and stil have the swelling lymp glan under my chin on the right side that is swollen most of the time,and also get huge swelling around my adams apple when i wake up in the morning, which fades away after an hr or so.
I am not due to see my doctor again until march 2011
I also went to the cancer hospital dentist, who said i could possibly have an infection, but did not offer any suggestion or referral to see someone else about it.
I guess i am going to have to try my luck with a doctor outside the cancer scene,and hopefuly get a course of antibiotics to see if it helps
Cheers
Colin0 -
entcolinc1 said:Update
I had a cat scan with a biopsy on the swollen glan done recently, the result was, a possible stone blocking the glan,the doctor did not suggest any cure or remedy,just said not to worry, its not a cancer.
Now,I am having some shocking pains shooting into my ears(any ideas?), a very painful left side jaw(all my back teeth were removed well before the operation, so its not a tooth ache) and stil have the swelling lymp glan under my chin on the right side that is swollen most of the time,and also get huge swelling around my adams apple when i wake up in the morning, which fades away after an hr or so.
I am not due to see my doctor again until march 2011
I also went to the cancer hospital dentist, who said i could possibly have an infection, but did not offer any suggestion or referral to see someone else about it.
I guess i am going to have to try my luck with a doctor outside the cancer scene,and hopefuly get a course of antibiotics to see if it helps
Cheers
Colin
find a good ent and not related to the cancer hospital. you need someone who will treat you for things non cancer related! best of luck!0 -
Hi Colin
Don't be afraid my friend, my Cancer came back 3 times and I beat it all 3 times. I am still here and will continue to be here to help others like you know there is hope, so please don't give up just keep fighting my friend.
I don't know if you believe in the power of prayer, I do and I will keep you in my prayers
Hondo0 -
Hi Colincolinc1 said:Update
I had a cat scan with a biopsy on the swollen glan done recently, the result was, a possible stone blocking the glan,the doctor did not suggest any cure or remedy,just said not to worry, its not a cancer.
Now,I am having some shocking pains shooting into my ears(any ideas?), a very painful left side jaw(all my back teeth were removed well before the operation, so its not a tooth ache) and stil have the swelling lymp glan under my chin on the right side that is swollen most of the time,and also get huge swelling around my adams apple when i wake up in the morning, which fades away after an hr or so.
I am not due to see my doctor again until march 2011
I also went to the cancer hospital dentist, who said i could possibly have an infection, but did not offer any suggestion or referral to see someone else about it.
I guess i am going to have to try my luck with a doctor outside the cancer scene,and hopefuly get a course of antibiotics to see if it helps
Cheers
Colin
It is sad but sometimes our doctors can’t see the forest because the trees get in the way. I suggest you finding another ENT to look and see about the possibility of infection of the Mastoid behind the ear. It gets over looked because of the cancer.
Hope it goes away soon.
Hondo0 -
you don't say what kind of medicationcolinc1 said:Update
I had a cat scan with a biopsy on the swollen glan done recently, the result was, a possible stone blocking the glan,the doctor did not suggest any cure or remedy,just said not to worry, its not a cancer.
Now,I am having some shocking pains shooting into my ears(any ideas?), a very painful left side jaw(all my back teeth were removed well before the operation, so its not a tooth ache) and stil have the swelling lymp glan under my chin on the right side that is swollen most of the time,and also get huge swelling around my adams apple when i wake up in the morning, which fades away after an hr or so.
I am not due to see my doctor again until march 2011
I also went to the cancer hospital dentist, who said i could possibly have an infection, but did not offer any suggestion or referral to see someone else about it.
I guess i am going to have to try my luck with a doctor outside the cancer scene,and hopefuly get a course of antibiotics to see if it helps
Cheers
Colin
you are taking for pain, Colin. My husband's situation and symptoms sound much like yours. He finished treatment in August 2010 and has been on strong pain medication since. Just this week Jim saw a pain management specialist hoping to get off the pain medication with an alternative treatment. Instead, they added Lyrica, something which helps with neuropathic pain.
Jim also had all teeth removed prior to treatments and still has seen the oral surgeon who did this for him twice to have bone fragments removed as they worked their way to the surface.
Stones can be painful and may require treatment. I would call my oncologist first and if I didn't get help there, call my general practitioner. Surgery may or may not be required to remove the stone: they can often manipulate it and excrete it from the gland if it is not too big.
Let us hear how things go for you, Colin.0 -
Ear Paincolinc1 said:Update
I had a cat scan with a biopsy on the swollen glan done recently, the result was, a possible stone blocking the glan,the doctor did not suggest any cure or remedy,just said not to worry, its not a cancer.
Now,I am having some shocking pains shooting into my ears(any ideas?), a very painful left side jaw(all my back teeth were removed well before the operation, so its not a tooth ache) and stil have the swelling lymp glan under my chin on the right side that is swollen most of the time,and also get huge swelling around my adams apple when i wake up in the morning, which fades away after an hr or so.
I am not due to see my doctor again until march 2011
I also went to the cancer hospital dentist, who said i could possibly have an infection, but did not offer any suggestion or referral to see someone else about it.
I guess i am going to have to try my luck with a doctor outside the cancer scene,and hopefuly get a course of antibiotics to see if it helps
Cheers
Colin
Ear pain was present for 4 months before my first diagnosis. Later figured out it was the a swollen lymph node below/behind the corner of my right jaw that was pressing on the ear canal tube / nerves. Definately try another ENT and also try warm compresses in the area where the pain is to reduce swelling.0
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