Recurrence of Base of tongue Cancer

Options
mehrdad357
mehrdad357 Member Posts: 66
in Head and Neck Cancer #1

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

 

 

 

 

 

 

 

«13

Comments

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #2
    Options
    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

  • RobbT
    RobbT Member Posts: 17 Member
    edited August 2018 #3
    Options
    Good luck with your fight.

    We are all pulling for you. Keep on fighting. 

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #4
    Options
    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!

  • mehrdad357
    mehrdad357 Member Posts: 66
    edited August 2018 #5
    Options
    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

     

     

  • momall25ofu
    momall25ofu Member Posts: 81 Member
    #6
    Options
    Mehrdad, prayers for you!

    Mehrdad, prayers for you!

  • mehrdad357
    mehrdad357 Member Posts: 66
    #7
    Options
    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

     

  • TheDrj820
    TheDrj820 Member Posts: 9
    edited August 2018 #8
    Options
    mehrdad357 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

    s

  • TheDrj820
    TheDrj820 Member Posts: 9
    edited August 2018 #9
    Options
    I dont have experience with

    I dont have experience with this, but I think she was just being polite. Generally the board does what it can to encourage others.

  • swopoe
    swopoe Member Posts: 492
    #10
    Options
    TheDrj820 said:

    I dont have experience with

    I dont have experience with this, but I think she was just being polite. Generally the board does what it can to encourage others.

    I agree. 

    I agree. 

  • armana
    armana Member Posts: 97 Member
    #11
    Options
    mehrdad357 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

     

    Prayers for you

    Mehrdad,

    You will be in my prayers.  Good Luck!!!!!

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #12
    Options
    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!

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #13
    Options
    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. 

  • mehrdad357
    mehrdad357 Member Posts: 66
    edited August 2018 #14
    Options
    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

  • mehrdad357
    mehrdad357 Member Posts: 66
    edited August 2018 #15
    Options
    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.

    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."

     

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #16
    Options
    mehrdad357 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

    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!

  • mehrdad357
    mehrdad357 Member Posts: 66
    #17
    Options
    debbiel0 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!

    No Posting of mine has been DISRECTFULL to anyone

    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.

     

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #18
    Options
    any news from the doctor?

    any news from the doctor?

  • mehrdad357
    mehrdad357 Member Posts: 66
    edited August 2018 #19
    Options
    joannaw81 said:

    any news from the doctor?

    any news from the doctor?

    Not till at least 8/13

    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

     

     

  • armana
    armana Member Posts: 97 Member
    #20
    Options
    stevenpepe

    Mehrdad,

    There is a member on this forum whose name is on the subjet line who had a recurrence within the last 18 months and is cancer free the last time i saw his post.

    You may want to contact him to share his experience.

    Good luck

     

  • mehrdad357
    mehrdad357 Member Posts: 66
    #21
    Options
    armana said:

    Prayers for you

    Mehrdad,

    You will be in my prayers.  Good Luck!!!!!

    Thanks for pointing out to stevenpepe

    Hi,

    I saw your message about stevenpepe, and sent him a note asking for info.

    Thank you for your thoughtfulness

    Mehrdad

Discussion Boards