reccurances - here is my fear. Tell me what you think?
Another thought for everyone - I have been wondering what the reaccurnece rate is for patients who have had surgery,chemo & rads compared to the ones who only had chemo & rads.
Comments
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Tough questions
I had a PET initially but have not had one post treatment. I was given the same type of answer which is somewhat on the positive side? I think that's fine as long as you are scheduled for at least periodic CT scans? Are you? At the very least you should be getting head, Neck, Chest and Abs CT scans every 4-6 months? There is a thread here about imaging tests, give it a read.
You ask, "Another thought for everyone - I have been wondering what the recurrence rate is for patients who have had surgery,chemo & rads compared to the ones who only had chemo & rads."
Tough question because of all the variables as to radiation and chemo type, tumor size, location, how derived, family genetics, spread, and individual behavior post treatment. Also the assumption that those who were not advised surgery most likely had a lessor degree of known spread. I have read where once it's in the lymphatic system your odds do rise with surgery as surgery will invariably catch some distant cells stuck in the lymphatic filters. Sometimes those cells are already dead thus many ENT's take a wait and see attitude. I personally do not believe it's their decision to make. I don't think giving possible lingering cells time to spread is prudent. You roll the dice on this one.0 -
It's all a gamble. Some
It's all a gamble. Some here have had PET Scans and their cancer didn't show up on it. Others have false positives. Some like me, are not having follow up PET scans. I think the odds are different for each person. To me statistics are meaningless and never apply to the individual.0 -
Yeah, it's a gamble. I trustsweetblood22 said:It's all a gamble. Some
It's all a gamble. Some here have had PET Scans and their cancer didn't show up on it. Others have false positives. Some like me, are not having follow up PET scans. I think the odds are different for each person. To me statistics are meaningless and never apply to the individual.
Yeah, it's a gamble. I trust his ENT, he is very good. Just like to hear that the scan shows no hot spots. I am sure he will schedule future scans. I am trying to adjuts to my new fear. It's gone, BUT is it going to come back. I am really scared. I am happy and enjoying our NED, but still scared shitless at the sametime. Man this cancer stuff can wreck havoc on ones mind. Sheesh!!!!0 -
I finished treatment in may
I finished treatment in may and have had one pet scan which was six weeks following treatment. I have seen my chemo doctor twice since and my ent once. He didnt even scope me. Just took a look in my mouth and throat. I will see my chemo doctor again in december. No mention of any scans. I also had a neck dissection so maybe they dont find it as necessary? I would also be interested to know about how often we should be scanned and if it is related to our treatment. I do know that my chemo doc told me all head and neckers have a higher risk of occurance than any other cancer and if you get through the first year you are in much better odds.
Angel0 -
Questions & Concerns
First....
I don't necessarily think H&N Cancer has any higher rate of recurrence than any other cancer...., you just notice it more because you primarily visit this section of forums...I could be wrong.
The frequency of scans, scopes and probes are probably set my your facility and MD....
more than likely the ENT or whomever is doing the routine scopes would notice changes. My ENT feels strongly that all of the scans are just another tool in his arsenal, he and his scopes and experience determine first line of what is going on.
You ask "how good scopes are at detecting cancer", my ENT stated that he was 90% sure that I had throat cancer on my first visit and scope.
As for the recurrence statistics...I have never seen any for the comparison that you mention. Also, most statistics out there seem rather old and especially before HPV came on the scene....
I don't really pay attention to those as there are so many factors that you don't know what was looked at for their criteria...age, health going in, treatment protocol, etc.....
I would stay concerned and aware of what is going on, but don't get wrapped around the wheel over analyzing the things you can't control at the moment.
Best,
John0 -
Frequencyakotke said:I finished treatment in may
I finished treatment in may and have had one pet scan which was six weeks following treatment. I have seen my chemo doctor twice since and my ent once. He didnt even scope me. Just took a look in my mouth and throat. I will see my chemo doctor again in december. No mention of any scans. I also had a neck dissection so maybe they dont find it as necessary? I would also be interested to know about how often we should be scanned and if it is related to our treatment. I do know that my chemo doc told me all head and neckers have a higher risk of occurance than any other cancer and if you get through the first year you are in much better odds.
Angel
I can only tell of my expereince....
My ENT has always been the lead of my team.
He scoped me every three months (and more) during my first year, second year moved out to every four months, now after 2 1/2 years post treatment, I have moved to every six months.
My Chemo MD, checked me out evey three months (blood mainly), and other, but blood and chemo are her specialtiy; Oncology-Hematology. That moved out to every six months after the first year.
My Rads MD saw me twice, at six months the other a year post rads.
But all have always been there for those times that I felt anxiety or to check me out when I thought I might have something going on...especially my ENT.
JG0 -
When I was diagnosed I already had bone mets; meaning the cancer had got into my blood and spread to distant sites (my spine and sternum). My docs radiated all the sites that could be seen back then and then over-chemo'd me with the hopes of getting every little last bit of cancer at any spot in my body. It was a nice try but chemo is not very effective on bone. So a PET was done 8 months after my last rad and showed the cancer on the hip. It's not really a recurrence but more a cancer that was already there and just invisible until recently. Your husband didn't have bone mets to start with so it's not really worth comparing to my situation. There's a really good chance that your docs did get all his cancer as his was soft tissue only and chemo does well with that. I would feel very confident with that; knowing that you and him will still think cancer every time he sneezes, we all do. I'm not sure why he wouldn't get a PET at about 6 months past treatment. It is fairly routine then and does give some peace of mind when it's clean. That would be a good question for his doc and of course you can insist on a PET. 6 months after last rad is usually best to allow all the radiation hot spots to clear.
Enjoy your clean bill of health. Be positive that it won't change. Help your husband with exercise and good green food to prevent new cancers. Love him like he's dying in 5 minutes but plan on forever. You did great getting him to this point.
AB0 -
frequency for JimSkiffin16 said:Frequency
I can only tell of my expereince....
My ENT has always been the lead of my team.
He scoped me every three months (and more) during my first year, second year moved out to every four months, now after 2 1/2 years post treatment, I have moved to every six months.
My Chemo MD, checked me out evey three months (blood mainly), and other, but blood and chemo are her specialtiy; Oncology-Hematology. That moved out to every six months after the first year.
My Rads MD saw me twice, at six months the other a year post rads.
But all have always been there for those times that I felt anxiety or to check me out when I thought I might have something going on...especially my ENT.
JG
Jim gets scoped two months, PET the third. He will have his third post-treatment PET next month. We've been told the schedule will be the same for the first two years with changes the third year. Five years seems to be the magical number we are working toward.
Seems like an MRI or two was also in the mix but I cannot remember when they happened nor what they were for.
Jim's cancer was hypopharyngeal and his oncologist told us they were very aggressive because the cancer is very aggressive.
Works for me!0 -
PET SCANS
I am approaching my one year post treatment on October 20th. I go to see my ENT for my once every 3-4 month scope, poke, pick and prod. My ENT says if there is a re occurrance anywhere in my mouth, throat or neck region, being able to feel and get a visual, he will catch it sooner than any scan. I go back in December for a Chest and Neck CT with Contrast for a verification. I just asked my Chemo Doc about "why a CT VS PET" in December and his answer was multi fold. PET's can yield a false positive / added biopsy / testing, Insurance is more likely to pay for a CT VS PET, I have already had a lifetime of radiaition, and the CT I believe is less radiation, and lastly my type of cancer they say is most likely to spread to the Mouth, Throat, Neck area and also my Lungs.
I will be talking to my ENT next month about the PET VS the CT test for my one year exam as I too wonder about anything above my throat and or below my chest. Most importantly, I completely trust my medical team, and so far so good with following all of their treatment guidelines.
I will tell you this, I worry far less now after getting the first year out of the way VS after getting the first 90 days out of the way. I think you too will find it a little easier to cope as you continue top get the "all clear" going forward.
Best!!
Mike0 -
I do believe I will worryluv4lacrosse said:PET SCANS
I am approaching my one year post treatment on October 20th. I go to see my ENT for my once every 3-4 month scope, poke, pick and prod. My ENT says if there is a re occurrance anywhere in my mouth, throat or neck region, being able to feel and get a visual, he will catch it sooner than any scan. I go back in December for a Chest and Neck CT with Contrast for a verification. I just asked my Chemo Doc about "why a CT VS PET" in December and his answer was multi fold. PET's can yield a false positive / added biopsy / testing, Insurance is more likely to pay for a CT VS PET, I have already had a lifetime of radiaition, and the CT I believe is less radiation, and lastly my type of cancer they say is most likely to spread to the Mouth, Throat, Neck area and also my Lungs.
I will be talking to my ENT next month about the PET VS the CT test for my one year exam as I too wonder about anything above my throat and or below my chest. Most importantly, I completely trust my medical team, and so far so good with following all of their treatment guidelines.
I will tell you this, I worry far less now after getting the first year out of the way VS after getting the first 90 days out of the way. I think you too will find it a little easier to cope as you continue top get the "all clear" going forward.
Best!!
Mike
I do believe I will worry less once we get a few more months under our belt. I think I could have handled the oops we did not get it all, as opposed to the awww **** it's back. I am really scared!!! I have always been scared of cancer. All my life, I feared getting cancer. For my husband to get it, is just a trip.0 -
Thanks AB, I thought you hadadventurebob said:When I was diagnosed I already had bone mets; meaning the cancer had got into my blood and spread to distant sites (my spine and sternum). My docs radiated all the sites that could be seen back then and then over-chemo'd me with the hopes of getting every little last bit of cancer at any spot in my body. It was a nice try but chemo is not very effective on bone. So a PET was done 8 months after my last rad and showed the cancer on the hip. It's not really a recurrence but more a cancer that was already there and just invisible until recently. Your husband didn't have bone mets to start with so it's not really worth comparing to my situation. There's a really good chance that your docs did get all his cancer as his was soft tissue only and chemo does well with that. I would feel very confident with that; knowing that you and him will still think cancer every time he sneezes, we all do. I'm not sure why he wouldn't get a PET at about 6 months past treatment. It is fairly routine then and does give some peace of mind when it's clean. That would be a good question for his doc and of course you can insist on a PET. 6 months after last rad is usually best to allow all the radiation hot spots to clear.
Enjoy your clean bill of health. Be positive that it won't change. Help your husband with exercise and good green food to prevent new cancers. Love him like he's dying in 5 minutes but plan on forever. You did great getting him to this point.
AB
Thanks AB, I thought you had bone mets after the fact. I will follow your advice and love my man.0 -
ScansNoellesmom said:frequency for Jim
Jim gets scoped two months, PET the third. He will have his third post-treatment PET next month. We've been told the schedule will be the same for the first two years with changes the third year. Five years seems to be the magical number we are working toward.
Seems like an MRI or two was also in the mix but I cannot remember when they happened nor what they were for.
Jim's cancer was hypopharyngeal and his oncologist told us they were very aggressive because the cancer is very aggressive.
Works for me!
As for scans, I had the very first day CT, pretty much confirming my ENT's thoughts on throat cancer. Three days later with the tinsils coming out...it was all confirmed as STGIII SCC Tonsil Cancer and a lymphnode also.
Then and initial PET after the tonsils (January 2009), next PET was around Agust a few months post treatments. Mine was ordered by my chemo MD at two months post treatment. Not by my ENT, he would have waited about 4 - 6 months post treatment. I was lucky in that my PET was clean.
The first year I had CT every three months, the PET has been annually. The next year and there after has been a CT at six months and the PET in between...so I get scanned every six months so far.
JG0 -
PET SCANS
I have had numerous pet scans in the last 9 years. Usually they wait awhile, up to a year to do a pet scan. In surgury they continually biopsy to make sure they have margin free error and afterwords it takes time for any existing cells to grown to the magnitude where they can be seen. Pet scans only identify "fast growing cells" not only cancer cells but also post surgery healing,infections and x-ray damage, which is also a reason they must wait awhile before preforming. Pet scans only give a potential diagnosis and this is usually further defined by biopsy and other identifying methods.
I had my first operation 9 years ago, 14 hour surgery for mandible removal; 4 years reconstruction; several v-sections removed (minor surgories of 1-4 hours); 6 week radiation and chemo three years ago; removal of rebuilt mandible and part of tongue accompanied by facial reconstruction 2 years ago; removal and reconstruction of upper palate 1 year ago. So I have gotten to know the medical team and their procedures very well.
By the way I am quite active, speak well over the phone, socialize with people who are willing to listen carefully, and eat full meals (although I use blender and a syringe since my reconstructed mouth opening is only a opening to the esophogus). Our quality of life remains very well balanced with no limitational effects.0 -
rfp56164rfp56164 said:PET SCANS
I have had numerous pet scans in the last 9 years. Usually they wait awhile, up to a year to do a pet scan. In surgury they continually biopsy to make sure they have margin free error and afterwords it takes time for any existing cells to grown to the magnitude where they can be seen. Pet scans only identify "fast growing cells" not only cancer cells but also post surgery healing,infections and x-ray damage, which is also a reason they must wait awhile before preforming. Pet scans only give a potential diagnosis and this is usually further defined by biopsy and other identifying methods.
I had my first operation 9 years ago, 14 hour surgery for mandible removal; 4 years reconstruction; several v-sections removed (minor surgories of 1-4 hours); 6 week radiation and chemo three years ago; removal of rebuilt mandible and part of tongue accompanied by facial reconstruction 2 years ago; removal and reconstruction of upper palate 1 year ago. So I have gotten to know the medical team and their procedures very well.
By the way I am quite active, speak well over the phone, socialize with people who are willing to listen carefully, and eat full meals (although I use blender and a syringe since my reconstructed mouth opening is only a opening to the esophogus). Our quality of life remains very well balanced with no limitational effects.
Thanks for posting that as it was inspirational! Tell us more about your history. Was there a recurrence in there somwhere or all related to the reconstruction?0 -
Welcomerfp56164 said:PET SCANS
I have had numerous pet scans in the last 9 years. Usually they wait awhile, up to a year to do a pet scan. In surgury they continually biopsy to make sure they have margin free error and afterwords it takes time for any existing cells to grown to the magnitude where they can be seen. Pet scans only identify "fast growing cells" not only cancer cells but also post surgery healing,infections and x-ray damage, which is also a reason they must wait awhile before preforming. Pet scans only give a potential diagnosis and this is usually further defined by biopsy and other identifying methods.
I had my first operation 9 years ago, 14 hour surgery for mandible removal; 4 years reconstruction; several v-sections removed (minor surgories of 1-4 hours); 6 week radiation and chemo three years ago; removal of rebuilt mandible and part of tongue accompanied by facial reconstruction 2 years ago; removal and reconstruction of upper palate 1 year ago. So I have gotten to know the medical team and their procedures very well.
By the way I am quite active, speak well over the phone, socialize with people who are willing to listen carefully, and eat full meals (although I use blender and a syringe since my reconstructed mouth opening is only a opening to the esophogus). Our quality of life remains very well balanced with no limitational effects.
Welcome rfp, a lot of great people here and many that have been here awhile...tons of experience and knowledge and most willing to share with others.
We have a SuperThread also for newbies and anyone with a lot of general information concerning H&N, check it out when you get a chance.
SuperThread
Best,
John0 -
PET Scanakotke said:I finished treatment in may
I finished treatment in may and have had one pet scan which was six weeks following treatment. I have seen my chemo doctor twice since and my ent once. He didnt even scope me. Just took a look in my mouth and throat. I will see my chemo doctor again in december. No mention of any scans. I also had a neck dissection so maybe they dont find it as necessary? I would also be interested to know about how often we should be scanned and if it is related to our treatment. I do know that my chemo doc told me all head and neckers have a higher risk of occurance than any other cancer and if you get through the first year you are in much better odds.
Angel
I had my first PET scan almost 15 years after treatment (you need to realize PET scans weren't available then, just a minor point). I did have x-rays done and over the years I've had CT scans of my head and neck for various reasons other than a C chack. I do recall that I was told that after five years I was "cured" not just in remission.0 -
Hi arndog
To me it is all about faith, as you know I live with bad PET scans and somehow they really don’t mean much to me anymore. Last year I got my first NED PET scan and 6 months later in March this year the doctors are saying my PET is showing a reoccurring NPC. Then he schedules another PET in 6 months and it shows no reoccurring, then he looks at me and says you are one hard case to understand. Nothing hard about it Doc, I just don’t let it worry me anymore; I put my faith in the Man up above and move on with life.
Take cane and hope you have a life long blessing of NED’s
Hondo0 -
Welcome, I enjoyed readingrfp56164 said:PET SCANS
I have had numerous pet scans in the last 9 years. Usually they wait awhile, up to a year to do a pet scan. In surgury they continually biopsy to make sure they have margin free error and afterwords it takes time for any existing cells to grown to the magnitude where they can be seen. Pet scans only identify "fast growing cells" not only cancer cells but also post surgery healing,infections and x-ray damage, which is also a reason they must wait awhile before preforming. Pet scans only give a potential diagnosis and this is usually further defined by biopsy and other identifying methods.
I had my first operation 9 years ago, 14 hour surgery for mandible removal; 4 years reconstruction; several v-sections removed (minor surgories of 1-4 hours); 6 week radiation and chemo three years ago; removal of rebuilt mandible and part of tongue accompanied by facial reconstruction 2 years ago; removal and reconstruction of upper palate 1 year ago. So I have gotten to know the medical team and their procedures very well.
By the way I am quite active, speak well over the phone, socialize with people who are willing to listen carefully, and eat full meals (although I use blender and a syringe since my reconstructed mouth opening is only a opening to the esophogus). Our quality of life remains very well balanced with no limitational effects.
Welcome, I enjoyed reading your post. Very positive, and glad quality life has minimal collateral damage.0 -
ENT
I am only three months post treatment, but I see my ENT monthly. Did the whole time I went thru treatment. The tumor was found in Aug of 2010, by the ENT. My dr's had looked down my throat, I was hoarse, said nothing. I was in the hospital three times, for different things, but this was never found. Finally I went to and ENT and he said that day I had cancer and he was going to put in a breathing tube, forget the name....how do you do that, it was horrid. Anyway, he did and off I went with different treatments. From that time on I have seen him every month. That is what makes this sore throat I now have so scary, wasn't there two months ago, and the ENT le tme go for two months this time. So, ENT in my opinion is very important. They know what they saw, where it was, and mine watched as it went away. So, I trust he would be one of the first to know if it came back. Thing is, would like to know it was back before someone can see it. Add that to my wish list uh? But I vote for the ENT as good thing to do.0 -
Hi rtpratface said:rfp56164
Thanks for posting that as it was inspirational! Tell us more about your history. Was there a recurrence in there somwhere or all related to the reconstruction?
I too would like to welcome you here to the family, you have a very inspiring story thanks for sharing and hope you plan to stay and help others who may be facing the same situation that you have gone through.
Wishing you the best
Hondo0
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