neck dissection lymph node lit up post chemradiation

Hi,

I haven't posted here before but have been reading them since my boyfriend was diagnosed with NPC stage3 last August. His 6 month post treatement PET scan had 2 lymph nodes lit up, they were subcentimeter size with moderate SUV value, the highest one is 4.6. They were the two largest nodes at inital diagnosis. He just had modfied left neck dissection last Friday. I am so nervous now. The oncologiest said even if the pathology result is positive there won't be further chemo or radiation. Has anyone else had the same experience here?  Did you just have the surgery without further treatment? Thank you so much!

Comments

  • lifeisDHA
    lifeisDHA Member Posts: 64
    Pathology report is back and

    Pathology report is back and 6 out of 33 came back cancerous... PET only showed 2 spots.  This is awful. The chemo and radiation didn't do much around his neck area..

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Boyfriend

    Sorry to hear the news.  I would be getting a second opinion as to treatment.  My husband's first cancer was laryngeal cancer.  He underwent radiation and chemo and then we found out that the treatment didn't work and he then underwent surgery to remove his voice box, partial neck dissection and reconstruction of the back of his throat due to radiation damage..  He did fine for one year when a second primary was discovered.  He underwent another round of radiation in basically the same spot as the first and more chemo.  Surgery was ruled out.  Sadly that treatment only worked for a while when the second primary came back and spread to his right lung, he then declined all further treatment. 

    There are many who have undergone more radiation and chemo on this site and hopefully they will say something.  But a second and even a third opinion is needed.  In hindsight that is something I wished we had done when my husband was first diagnosed because I think surgery would have been done first since the tumor was large and there was no spread.  But we didn't get a second opinion and went with our local ENT and an oncologist my husband was seeing for a rare blood cancer that was under control.  Your boyfriend needs to see a specialist who has a good deal of experience in the type of cancer he has.

    Wishing you peace and comfort -- Sharon

  • phrannie51
    phrannie51 Member Posts: 4,716
    Hi DHA, and welcome to this forum...

    you've found a great place to ask questions and get thoughtful and experienced answers.  I was also diagnosed with Stage 3 NPC back in March, 2012.  They told me that I would end up with a neck dissection if any nodes lit up at the post treatment scan...fortunately, that hasn't happened....tho I do have one lymph node they are watching. 

    If this were me, I'd be looking around for a second opinion....the reason why is because there are more than one type of radiations around...some of them are very targeted.  A different Oncologist might have experience with a chemo drug that your current Onc doesn't know about.  Also, now that they've removed the lymph nodes he might not need further radiation, but it'd be nice to hear that from two different sources. 

    p

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    Hi DHA, and welcome to this forum...

    you've found a great place to ask questions and get thoughtful and experienced answers.  I was also diagnosed with Stage 3 NPC back in March, 2012.  They told me that I would end up with a neck dissection if any nodes lit up at the post treatment scan...fortunately, that hasn't happened....tho I do have one lymph node they are watching. 

    If this were me, I'd be looking around for a second opinion....the reason why is because there are more than one type of radiations around...some of them are very targeted.  A different Oncologist might have experience with a chemo drug that your current Onc doesn't know about.  Also, now that they've removed the lymph nodes he might not need further radiation, but it'd be nice to hear that from two different sources. 

    p

    2nd Phrannie's Opinion

    You definitely need to get him to a Major C Center- nearest one to you, and one that is likely tied to a University. 

    I, too, was stage-3 NPC, and they put me thru a little different regiment of tx than anyone else here. And I'm 6-1/2 years out. My Drs made like they had ties to the U of Iowa, which has a great reputation, but I later found out that was kinda bogus words from the Drs. Only the ENT has those ties, along with being trained at Wake Forest. 

    The options after one goes thru tx w/both chemo and rads does get limited. For NPC, the standard is concurrent C&R, as I and I think most the others got. Did your husband get C&R at the same time? 

    And do you know what specific Chemo he was given? Cisplatin and 5-FU? Or Erbitux? Something else? And where he was treated- in a major city, or did the Drs say they had ties to a Major C Center, and were up to speed on the tx?

    I don't want to hurt you, or for you to take this in the wrong way, but for the sake of all in tx now, or about to go thru it: this might be an example of C Dr error. For it to come back so soon, and even show like it did after 6 months, does strongly suggest a miscalculation on the severity of his C, and the tx needed to get rid of it. And, unfortunately, this is not the first time we have bore witness to such as this. Just because they have the diplomas, and talk like they know everything- the end result is proof of their competence. 

    For me, though my Onco and Rad Drs had a lotta hot air coming out of their mouths, they did do right by me with the extreme C&R they put me thru. And my tx regiment is why I always say with C the only way to error is on the side of the aggressive, and that is especially true with the first tx one gets, because if that first tx doesn't get rid of it, then options for further tx become limited. It has been my understanding that in your case, then surgery is the #1 option, but that does depend on the specifics.

    And please keep in mind that the element of time is a major factor in your husband's case. You need to seek out the best Drs nearest to you ASAP. And please keep us updated.

    kcass

     

  • lifeisDHA
    lifeisDHA Member Posts: 64
    thanks for your reply!

    He is treated in Dana Farber in Boston with standard treatment plan(concurrent chemo/radiation,i think he used cisplatin and 5fu). This is the best cancer hospital near us. We are shocked that there are still many lymph nodes with cancer and some didn't show up in the scan.  I am so worried about the other side of the neck though nothing showed up in the PED for that side.  We will see what his oncology suggests about next step.

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    lifeisDHA said:

    thanks for your reply!

    He is treated in Dana Farber in Boston with standard treatment plan(concurrent chemo/radiation,i think he used cisplatin and 5fu). This is the best cancer hospital near us. We are shocked that there are still many lymph nodes with cancer and some didn't show up in the scan.  I am so worried about the other side of the neck though nothing showed up in the PED for that side.  We will see what his oncology suggests about next step.

    Thanks

    Have heard of Dana Farber, and it has a great reputation, so that is a surprise. Had expected very different- like at a very small city hospital, such as in the LaSalle-Peru, Il., area where I originally hail from, or a similar-sized place. Would think Farber has a top team of C Drs that would be on top of the game, so to speak. Surgery to remove those nodes, and likely many other nodes, might be the expected next step. Many have had that done, and have many years of survival, now, so you still have plenty of cause to keep it in the Positive. 

    Believe

    kcass

  • lifeisDHA
    lifeisDHA Member Posts: 64
    Kent Cass said:

    Thanks

    Have heard of Dana Farber, and it has a great reputation, so that is a surprise. Had expected very different- like at a very small city hospital, such as in the LaSalle-Peru, Il., area where I originally hail from, or a similar-sized place. Would think Farber has a top team of C Drs that would be on top of the game, so to speak. Surgery to remove those nodes, and likely many other nodes, might be the expected next step. Many have had that done, and have many years of survival, now, so you still have plenty of cause to keep it in the Positive. 

    Believe

    kcass

    thank you Kent!

    I am also hoping the surgery alone will take care of it. Keep my finger crossed. Will update after we talk to the oncologist

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    lifeisDHA said:

    Pathology report is back and

    Pathology report is back and 6 out of 33 came back cancerous... PET only showed 2 spots.  This is awful. The chemo and radiation didn't do much around his neck area..

    life, i'm so very sorry to

    life, i'm so very sorry to hear this.  cancer is so cruel.  i agree with the others, get a second opinion.  several here have had 2, 3 or even 4 cancers and have received treatment.  maybe he would be a candidate for cyber knife, a special kind of radiation. you never know what all is available until you check around.  i am praying for you both.  May God bless you with a doctor who sees a treatment for him, if he needs one, like P said, maybe no more tx is needed since they removed the nodes.  That would be great!!!

    God bless you both,

    dj

  • wmc
    wmc Member Posts: 1,804
    lifeisDHA said:

    thank you Kent!

    I am also hoping the surgery alone will take care of it. Keep my finger crossed. Will update after we talk to the oncologist

    Welcome to the H&N Group

    Dana Farber is rated very good. Welcome and sorry you need to be here. There have been several on here that have had radiation and chemo more than once. My lymph glands were all clear, but they did a neck dissection on both sides just as a precaution that it cam't spread or come back to them. They took 86 total. Not sure why they didn't do both sides of the neck but they must have a reason. Keep the fath and never give up.

    Bill

  • Barbaraek
    Barbaraek Member Posts: 626
    lifeisDHA said:

    Pathology report is back and

    Pathology report is back and 6 out of 33 came back cancerous... PET only showed 2 spots.  This is awful. The chemo and radiation didn't do much around his neck area..

    Don't give up...

    Dana Farber is a big center and should see a good volume of head and neck cancers. I'm sure they are not out of options for you. Having said that, don't hesitate to ask for a second or even third opinion. In any case, while this is bad news...hang in there and try to look for the positives.

     

    Barbara

  • louhou13
    louhou13 Member Posts: 46
    A possible option...

    Hello, I do not post often but do read the posts. I was originally diagnosed in 2012  with stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer. 

    I"m more than happy to answer questions if you would like. 

     

     

  • lifeisDHA
    lifeisDHA Member Posts: 64
    louhou13 said:

    A possible option...

    Hello, I do not post often but do read the posts. I was originally diagnosed in 2012  with stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer. 

    I"m more than happy to answer questions if you would like. 

     

     

    Thank you Louhou

    This is great to know! He will see the doctor next week to see what's the next step and whether this MED14736 is offered here. Can you tell me where did you have recurrence in 2013. We are both scared.

  • MrsBD
    MrsBD Member Posts: 615 Member
    lifeisDHA said:

    Thank you Louhou

    This is great to know! He will see the doctor next week to see what's the next step and whether this MED14736 is offered here. Can you tell me where did you have recurrence in 2013. We are both scared.

    Encouragement

    Welcome to the group. I'm sorry the first round of treatment wasn't as successful as you hoped. There are several of us who have had some of the newer therapies with good responses. I had radiation and concurrent treatment with Erbitux,  a monoclonal antibody. Eleven months after treatment ended,  there is no evidence of cancer and I feel almost back to normal. There are more therapies available if you go into a study, so don't be discouraged. 

  • louhou13
    louhou13 Member Posts: 46

    Hello,

    My recurrance was in the oropharynx. By the time I started treatment I could see and feel the tumor in the back of my throat. Additionally, bleeding - sometimes lots of bleeding was occuring. My doctors gave me 6 months but I thought I wouldn't make it that long. This was back in 2013. MEDI4736 is a trial by Medimmune, a division of AstraZeneca but similar clinical trials are offered by Genentech and Merck.

    Please let me know if there is anything else I can do/answere for you.

  • Killer-T
    Killer-T Member Posts: 3
    louhou13 said:

    A possible option...

    Hello, I do not post often but do read the posts. I was originally diagnosed in 2012  with stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer. 

    I"m more than happy to answer questions if you would like. 

     

     

    Medimmune 4736

    Hey Louhou13, I too have had great success on this antibody. I am nearing the end of my one year trial. Minor side effects until lately. It seems that it's not good to be on this stuff long-term. It is starting to reduce the output of my thyroid gland. This is easily fixable by supplementing with one pill a day of Synthroid but I would rather not. Did you have this problem?

    TO ANYONE INTERESTED: Your best shot at curing a cancer is to get the genes sequenced as soon as possible. This allows an orginization to make an intelligent choice for a personal treatment plan instead of just giving you the standard that anyone gets. I went through 3 surgeries, 5 weeks of radiation and one very expensive antibody (cetuximab) (all failed within months) before they figured this out.

    If your sequenceing shows a cancer that has what is called MSI-high category or "DNA Mismatch Repair deficency" then you may be a good candidate for Medi 4736. Immunotherapy is a really different way of looking at the problem and I thank those that dreamed this up.