Reoccurrence in lymph node

Nwife
Nwife Member Posts: 18
in Head and Neck Cancer #1

Does anyone have any experience with occurrence after rads and chemo?  My husband had tonsil cancer HPV + and finished treatment in October of last year.  There was node involvement so but no distant disease.  His 3 month PET was NED but they did find he had a serious pneumonia during that scan that went undetected and he had to have lung surgery because he had 3 empyemas.  During the thoracic surgery there was injury to his thoracic duct so he had to go thru 2 embolizations of the duct to stop the leak because it was robbing him of all his nutrition.   He spent a month in the hospital and was released in February. He was 124 pds when released and today is back to 156.  I was so hopeful we were out of the woods finally but I noticed a small lump where his first lump showed and it tested positive for cancer cells. It is 10mm node.  I am so scared!  He has been thru so much and I feel like his nightmare will not end.  He is 52. The ENT feels it is that one node but of course can not be sure until his CT results are in and he is scheduled for a PET on Sunday.  Has anyone had a reoccurance and had successful treatment?  Can this still be cured?

NWife

Comments

  • Nwife
    Nwife Member Posts: 18
    #2
    Desperate to hear from someone who has been thru a reoccurance-

    Is there no one that can give information based on experience on this? 

  • JosephK
    JosephK Member Posts: 64
    edited August 2017 #3
    Sometimes

    Nwife, sometimes it takes a while for someone to respond. Not everyone has the same experience. I understand your impatience and wanting answers. I found the best way to get information is Google or simply talk to your Oncologist. Best wishes to you and your husband

  • Nwife
    Nwife Member Posts: 18
    #4
    Sorry JosephK

    I apologize for appearing impatient.  It was difficult news to digest and I am in somewhat of a panic state.  Thanks for your reply.

  • Mom68
    Mom68 Member Posts: 108 Member
    #5
    Bless You

    I'm really sorry about the recurring cancer in the node, Nwife. I don't have any experience with this, but please know that others have read your post. I'm sure when someone with a similar experience reads this, they'll respond. I've personally read this thread twice, so please don't think you are forgotten. You are in my prayers. Warmest regards, Mary

  • SuzJ
    SuzJ Member Posts: 446 Member
    edited August 2017 #6
    My Lymph Node

    is coming out!

    scheduled in next 2 weeks.

     

    Panicing, and googling dont help at all, especially googling, I swear they only put the bad stuff out there

  • caregiver wife
    caregiver wife Member Posts: 234
    #7

    Husband had recurrence at primary tumor location.  His tumor was so large we never even asked about lymph nodes as he was not a candicate for surgery.  We are older, but husband did VERY well with recurrence treatment and is now in remission.  Any treatment options vary from patient to patient, but there are many options.  Hugs to both of you as you wait.  Please keep us informed.

    Crystal

  • Nwife
    Nwife Member Posts: 18
    edited August 2017 #8
    Thank you!

    Thank you SuzJ and Caregiverwife. This is what I needed.  Hope to calm my anxiety. He has been thru so much and I know I must be strong for him but the anxiety has been out of control since yesterday but your responses help so much!  I just want to know it is possible to get back on track of remission.. Thank you!

  • Nwife
    Nwife Member Posts: 18
    edited August 2017 #9
    Mom68 said:

    Bless You

    I'm really sorry about the recurring cancer in the node, Nwife. I don't have any experience with this, but please know that others have read your post. I'm sure when someone with a similar experience reads this, they'll respond. I've personally read this thread twice, so please don't think you are forgotten. You are in my prayers. Warmest regards, Mary

    Many Thanks Mary

    this means a lot!

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited August 2017 #10
    I had NPC....and was treated

    from April 2012 to Septemer 2012.  In October 2015, a lymph node popped up with cancer cells.  I had a modified neck dissection, and tho only one node lit up on the PET scan, three total had cancer out of the 35 removed.  My node condition is dicey because 2 of the 3 were extra-capsulated, meaning they had opened, and were not contained.  My cancer has spread because of the extra-capsulation....to a muscle in my neck, and a lymph node in my chest.  However, I've been getting Keytruda since June....I still feel fine....just came back from a girl trip to the Oregon Coast last Sunday.  I won't know if it's working till next month, but if it isn't there are still other options to kick butt.

    A reoccurence is scary....it was absolutely the scariest thing I could think of the 3 years prior to it actually happening. Once my biggest fear happened, I have been more or less fearless....weird how that happens.  There are a more than a couple people on this board who had a lymph node pop up....it gets removed and they remain in remission as tho that lymph node never existed.

    p 

  • Nwife
    Nwife Member Posts: 18
    edited August 2017 #11
    phrannie51 your comment

     I want to thank you for sharing your experience with me.  My husband has been thru so much and I am terrified.  It seems I handled the first diagnosis so much better, reoccurance seems so much more devastating and even more scary because he has all the radiaiton to that area from my understanding so I am worried about options.  He did have a CT scan on Monday and his PET is this coming Sunday.  We will have a better idea then what we are facing. Your words are comforting and your strengh and attitude amazing.  Thank you so much for reaching out and I will say a prayer for you that your news will be good. 

    N

  • luv2cut1
    luv2cut1 Member Posts: 288
    #12

    I hardly visit this board anymore, but occasionaly check in to see how people are doing. I felt compelled to respond to you because my husband had SCC of the epiglottis in 2008. He also had chronic lymphocytic leukemia which compromised hid immune system. Had chemo and rads ending Sept 2008. March 2009 had recurrence in lymph nodes. Had radical neck dussection (no clear margins) in June 2009, had rads and chemo again. Just had scope and ct scan and he is still clear after 8 years. He is in remission for the cll as well. We are so blessed. There is definitely hope! Prayers for you during this scary time.

     

     

  • Nwife
    Nwife Member Posts: 18
    #13
    luv2cut1 said:

    I hardly visit this board anymore, but occasionaly check in to see how people are doing. I felt compelled to respond to you because my husband had SCC of the epiglottis in 2008. He also had chronic lymphocytic leukemia which compromised hid immune system. Had chemo and rads ending Sept 2008. March 2009 had recurrence in lymph nodes. Had radical neck dussection (no clear margins) in June 2009, had rads and chemo again. Just had scope and ct scan and he is still clear after 8 years. He is in remission for the cll as well. We are so blessed. There is definitely hope! Prayers for you during this scary time.

     

     

    Thank You

    Thank you for taking the time to respond-it really means a lot.  My husband is scheduled for surgery to remove the lymph nodes on Sept 6th.  They are going to do both sides.  He had rads and chemo first so he cannot have rads again is my understanding and the ENT said there would be no Chemo.  I worry that those tonsils(where the cancer started)are stilll in there.  ENT said there is not much left of the tonsil that the cancer was in after radiation.  I am so glad to see positve outcomes-it helps with the anxiety and gives promise.  Thank you for your prayers and God Bless.

    NWife

  • Nwife
    Nwife Member Posts: 18
    #14
    update on reoccurance

    I just wanted to update on the status of my husbands reoccurance.  He had a bilateral modified neck disection on 9.6.17.  We went to the doctor for a follow-up last Friday and to get the Pathology results.  He had only the one node (this was good) BUT it was extra capsulated. They found nothing anywhere else in the neck but now I am worried about spreading.  He did have a CT scan prior to the surgery and there was mention of a 2mm pulmonary node in the right upper lung.  My husband has had pnemonia several times in the last year.  Nothing showed on his PET but as I understand 2mm is very small and probably would not show anyway.  ENT says they will watch it but they are not concerened.  I am!!!!  My husband is also complaininng of severe pain in his sinus.  I am worried about that too but again PET showed nothing.  I want to be happy and relieved about the "one node" but all I hear is that because it was extra capsulated it is more likely to spread.  So concerned and not feeling a relief.

    NWife

  • armana
    armana Member Posts: 97 Member
    edited September 2017 #15
    Nwife said:

    update on reoccurance

    I just wanted to update on the status of my husbands reoccurance.  He had a bilateral modified neck disection on 9.6.17.  We went to the doctor for a follow-up last Friday and to get the Pathology results.  He had only the one node (this was good) BUT it was extra capsulated. They found nothing anywhere else in the neck but now I am worried about spreading.  He did have a CT scan prior to the surgery and there was mention of a 2mm pulmonary node in the right upper lung.  My husband has had pnemonia several times in the last year.  Nothing showed on his PET but as I understand 2mm is very small and probably would not show anyway.  ENT says they will watch it but they are not concerened.  I am!!!!  My husband is also complaininng of severe pain in his sinus.  I am worried about that too but again PET showed nothing.  I want to be happy and relieved about the "one node" but all I hear is that because it was extra capsulated it is more likely to spread.  So concerned and not feeling a relief.

    NWife

    My Experience

    I had stage III tonsil cancer 3 years ago. Had surgery to remove one tonsil followed by 6 1/2 weeks of IMRT finished Nov 2014. The inistial PET before rediataion showed two small nodules 2 mm each in right upper lung. The follwing pet scans showed no changes to the two nodules therefore no cancer.  The oncologist said it is typical to find small nodules and usually not a big deal.  You just have to be vigilant in our situations since this cancer could spread to the lungs.

    Arman

  • Bionicguy
    Bionicguy Member Posts: 22
    #16
    Same boat

    I just found out today I have a reoccurance inmy left lymph node. Not much expericence to offer. Scheduled for a neck disection on Monday 10/2. All I can offer is I'm just as scared as can be, but will have to trust my doctor and the good lord to get through it. My biggest concern was having to put my wife through this again. Hang in there and prayers your way for the best.

Discussion Boards