Recurrence of Base of tongue Cancer
Hello
My Radiation Oncologist called me today and told me that my cancer has recurred based on result of PET CT scan I had yesterday.
He asked me to sit tight, and he is putting a lot of efforts trying to reach a head and neck surgeon that he tursts for a biopsy. All of these
Docs are in Stanford. He also told me my options are : Surgery (if operable) followed by Chemotherapy. when I asked what about radiation therapy he
said that does not work on a recuring cancer. he said the cancer has spead to 1 lymph node.
My first Cancer:
I was diagnosed with cancer of Right side of Base the tongue on August 16 or 17 2016. Stage 4b. I had no symptoms back then, only lymph nodes were swollen.
Treatment started about September 26 or so 2016. with chemo (erbitux) and radiation. treatment ended on November 14 2016. My radiation oncologist and ENT specialist
have been doing follow up in the following manner.
Radation Oncologiist: February 2017, May 2017, November 2017, February 2018, May 2018 and finally July 24 2017.
ENT: March 2017, September 2017, April 2018.
Prior to all the follow ups of radiation oncologist I had a CT scan of the neck and lung.
Symptoms of recurrence: On about July 9 2018, I started having a mild pain in the right side of my throat upon waking up and a couple hours after waking up and in
the middle of night when I would go to bathroom. in about 1 week, approximately by July 16, the pain was noticeable all the time but still at its worse upon waking up and
in the night, cause thoat was super dry. I saw him and my Ent both on July 24 2018 and both of them did a thorough laryngoscopy, but coud not see anything abnormal.
The oncologist ordered a PET scan on 8/1/18 and he got the results today and called me to tell me.
He said this time is on the right tonsil, and distance between the site of Primary cancer and right tonsil is only 1 cm and therefore it is a recurrence. He said 20% of the times radtion
does not kill all the cancerous cells, and those that survive radition (like the ones I have) are very aggressive. He said he cannot yet categorize the stage of cancer (after bioppsy), but he said
it is certainly not as advanced as the original yet, but it is more aggressive that is it speads faster than the original.
I would appreciate to hear from those people who have had recurrence of H and N cancer or know of other people who have had it, and the prognosis they had.
I just want to get an idea how bad my new sitaution is.
Thanks for your input.
Mehrdad
Comments
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Sorry to hear about this...
So to be clear, your primary was located during your first round of treatment and was near your right tonsil? Is your disease HPV related or no?
Yes, it would be uncommon for them to do radiation again if your recurrence is basically in the same spot as your primary tumor. There are a few who are active on this board that I know have had a recurrence and are doing some immunotherapies that have been working. Certainly there are options out there.
Brandon
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hello-hope this message finds you well
Hello, I have not been active in this formum for awhile as my mom has been cancer free for 6.5 years now. I do stop by from time to time. I immediately thought I should tell you my mom's story as a recurrance is not always a death sentance. Please go to my profile to read about all my mom's recurrances.
First she had tonsil cancel with surgery to remove it on the left side as well as it was in 1 lymph node, she also had radiation- this was between november of 2010 and she finished radiation in february of 2011.
then in october of 2011 her cancer had spread to the front of her tongue, removed- no chemo or rads,
later it appeared in one of her lymph nodes on the right side-removed
then it appreared on the tongue again, removed- no radiation and chemo
her last surgery was on 3/2/2013 I believe, she has been cancer free since then.
note, the doctor has told me that she was going to die sooner then later from this. she is still here, heatly and well.
Do not give up, everyone is differenet, positive thinking, it was caught early.
Dont give up, good luck!
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No one has had a recurence of H & N Cancer?
Thank you very much joannaw81 for sharing your mother's who survived and is doing well with at least 3 o 4 recurences (If I counted correctly), both local and regional.
I was completely in the dark before I read your post. To some extent I am even somewhat more anxious than the time I got my initial cancer diagnosis. I kow that this
time radiation is closed to me.
I posted this yesterday. It seems except jonnaw81, no one has had a recurrence of any type of H & N cancer?
If anyone has had a recurence good or bad, or knows of sopmeone who has had it. I appreciate if they be kind
enough to share it, like joannaw81.
Mehrdad
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Mehrdad, prayers for you!
Mehrdad, prayers for you!
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I do not need "prayers" or "good luck statements"
I do not beleive in god or any type of higher power. So it will be greatly appreciated if other members do not offer their
prayers to me or state generic things like "Good Luck, ..", etc...However if you have had a recurrence of H & N cancer or
know of someone who has had like kind jonnaw81, I would appreciate if you share it.
Thank you
Mehrdad
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smehrdad357 said:I do not need "prayers" or "good luck statements"
I do not beleive in god or any type of higher power. So it will be greatly appreciated if other members do not offer their
prayers to me or state generic things like "Good Luck, ..", etc...However if you have had a recurrence of H & N cancer or
know of someone who has had like kind jonnaw81, I would appreciate if you share it.
Thank you
Mehrdad
s
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Prayers for youmehrdad357 said:I do not need "prayers" or "good luck statements"
I do not beleive in god or any type of higher power. So it will be greatly appreciated if other members do not offer their
prayers to me or state generic things like "Good Luck, ..", etc...However if you have had a recurrence of H & N cancer or
know of someone who has had like kind jonnaw81, I would appreciate if you share it.
Thank you
Mehrdad
Mehrdad,
You will be in my prayers. Good Luck!!!!!
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Hi again
After my mom's last surgery the doctor said that if he will not be able to remove the whole tumour she can do brachotherapy since second radiation would not be an option. Brachotherapy is radiation done for about only a week, it is directed direcly on the tumor, u stay in the hospital the whole time. They basically connect cabels through your mouth and do not remove it until it is completed. Feeding tube is a must for those couple of days. Research this and ask ur doctor. Thankfully my mom did not have to have this however knowing this option existed gave me some light just in case.
To be frank i do believe in God and i also believe that he had something to do with saving my mother. I do not mean to offend u, it is ur choice who or what u believe if anything at all however perhaps he does want u to start to believe in Him, when people r in crisis they usually turn to God. U can take this however u want. Take care!
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I forgot to mention
There were quite few people on here in the past who have had recuurances and lived for a long time after. One of those people was Hondo. He survived at least 10 years post recurrance however past away becaue of phenoumia. The prognosis are not good after u have a recurrance however u can still beat it.
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PLEASE DO NOT POST "YOU PRAY FOR ME"
Please learn from Joannaw81, who is the only member who has posted 3 very useful post in
resonse to my origfial post. Her 3 posts have been extremely helpful to me.
So please no more posting, unless it is directly realted and hrelpful to ME in my original
posting.
jonnaw81, Thank you very much for the new comments they were extremely helpful and
I just sent a "Health Message" to my radation oncologist asking him about brachotherapy
for me. I should hear at the latest by tomorrow before noontime (I live in PST time zone).
I would like to iform you of his response. How do I send a post just to you? Igf you know
please let me know.
I agree with you 100% that everyone is entitled to what they beleive, If you beleive god saved
your mother that is true for you and I highly respect your view on this.
Mehrdad
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As you say: Live and let live.tommyodavey said:Not Needed
To those who don't believe in a god should not be offended by those that do. Your post almost sounds angry about it. Is society getting too hypersensitive to the beliefs others have or is it just being politically correct in your opinion.
We here do everything we can to help others get through a very tough time in their lives and if prayer is what they want then they'll get it from those who believe. For those that don't, ignore it and think positive thoughts instead.
Live and let live. We all have our coping mechanisims. It might be time to talk to a therapist about your anger issues. That is not good for healing.
It Is not an anger issue.
If you read the last 3 lines of my original post on 8/2/18, I askk something very specific which exludes
most people of this group. I ask those people who have had recurrence of H & N cancer or know of
someomne. I am looking for information and not support. I then state that I don't beleive in god and
am looking for specific answers from people who have had recurrence of H & N. THen I get 4 more
Pray posts. SO I have to
explain myself more plainly and tell them clearly that their prayers adds to my pain. Is this fair?
There has been only one member that gave me very useful info and I "exposed" her like this:
"Please learn from Joannaw81, who is the only member who has posted 3 very useful post in
resonse to my origfial post. Her 3 posts have been extremely helpful to me."
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Mehrdad357: have you read themehrdad357 said:As you say: Live and let live.
It Is not an anger issue.
If you read the last 3 lines of my original post on 8/2/18, I askk something very specific which exludes
most people of this group. I ask those people who have had recurrence of H & N cancer or know of
someomne. I am looking for information and not support. I then state that I don't beleive in god and
am looking for specific answers from people who have had recurrence of H & N. THen I get 4 more
Pray posts. SO I have to
explain myself more plainly and tell them clearly that their prayers adds to my pain. Is this fair?
There has been only one member that gave me very useful info and I "exposed" her like this:
"Please learn from Joannaw81, who is the only member who has posted 3 very useful post in
resonse to my origfial post. Her 3 posts have been extremely helpful to me."
Mehrdad357: have you read the note on the protocol for the discussion board..
" take care when posting to share your experiences in a RESPECTFUL manner"
You are posting on a public site. You are going to get responses from people from all walks of life. We are all trying to cope the best we can. This is an evil, horrible situation we are in. If it makes someone feel better to wish you luck, who are you to critizice? A prayer? Is it hurting you?
Personally, I do not believe, but did not berate anyone of my friends or aquaintances for supporting me or dealing with the news in anyway they needed to!
I hope you have a pleasant evening... or is that offensive for you!
Sorry to the regular folks that read this...I just had to vent!
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No Posting of mine has been DISRECTFULL to anyonedebbiel0 said:Mehrdad357: have you read the
Mehrdad357: have you read the note on the protocol for the discussion board..
" take care when posting to share your experiences in a RESPECTFUL manner"
You are posting on a public site. You are going to get responses from people from all walks of life. We are all trying to cope the best we can. This is an evil, horrible situation we are in. If it makes someone feel better to wish you luck, who are you to critizice? A prayer? Is it hurting you?
Personally, I do not believe, but did not berate anyone of my friends or aquaintances for supporting me or dealing with the news in anyway they needed to!
I hope you have a pleasant evening... or is that offensive for you!
Sorry to the regular folks that read this...I just had to vent!
I know that I am posting on a public website. Can you tell me which posting of mine has been disrespectful?
Because this is a public website, it does not mean other members are free to post irrellevent postings
in response to my posting. I wnat posting that can help me and nothing else. In paricular offering
prayers, because they are offensive to my belief system.
When I got too many prayer postings Directed at Me, I had to send a politte yet firm message
to the group. I think there is nothing wrong with this.
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Not till at least 8/13joannaw81 said:any news from the doctor?
any news from the doctor?
Hi ,
I sent him a myhealth message yesterday asking about Brachotherapy. But about 20 minutes later
I got a message from his nurse coordinator that he is on vacation this week and will not be back till
Monday 8/13. So I guess I will know either then or the 14th at the latest abut Brachotherapy.
Thanks a lot for mentioning it and following up on it.
Mehrdad
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Thanks for pointing out to stevenpepearmana said:Prayers for you
Mehrdad,
You will be in my prayers. Good Luck!!!!!
Hi,
I saw your message about stevenpepe, and sent him a note asking for info.
Thank you for your thoughtfulness
Mehrdad
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