lymphoma & hpv+carcinoma at same time?

Wednesday
Wednesday Member Posts: 22 Member
in Head and Neck Cancer #1

The bad news is that unfortunately, my ENT was correct. I do indeed have tonsil cancer. The good news is that it is the hpv type, so more treatable. However, oddly, they also found lymphoma-type cells in the lymph node which they are all confused about. Having both at the same time is not usual apparently. Honestly, I'm not sure if they said it is definately both lymphoma and hpv carcinoma or if they said that they found cells that were "compatible" with being lymphoma-like. I guess I need to ask for more clarification. They are removing both tonsils and doing a left neck dissection on Friday. I'm sure everything will be re-biopsied for clarification once it is out. Chemo and radiation is planned for 4-6 weeks after surgery. I am a little afraid of the pain from all of the procedures/treatments but not as afraid as I am of leaving my kids without a mother, so I say, bring it on.

Anyone else have similar confusing/mixed results from the biopsy?

Comments

  • Bill1958
    Bill1958 Member Posts: 67
    #2
    Similar but not the same "Wednesday"

    My head and neck oncologist has biopsied my neck mass(5-7 cm node) with fine needle and found inconclusive.  Then he did surgery on this node and found no cancer.  While in surgery they biopsied two more enlarged nodes and found no cancer.  The nodes are full of lymphocytes typical of lyphnoma or infection.  My regular doctor, the ENT and the oncologist are sure this is cancer but no answers yet.  They are ordering a petscan asap.  I understand how we can be confused and I hope you get answers too!  I have read and heard from many folks on this site that HPV + cancer is more curable than HPV- cancer of the throat.  I wish you good luck!

  • Darkdancer333
    Darkdancer333 Member Posts: 115 Member
    edited March 2018 #3
    I was moved to a Hospitol

    I was moved to a Hospitol Cancer center close to my home. My Doc said HPV+ is a very good thing. The cure rate is in the low 90%

    I will be starting radiation and chemo 6 weeks from my diagnosis. ONly reason pushed back i because i need 4 tooth extractions which will hapeen next Thursday.. 

    I look you want to get this started, I used a line from Kyle Busch... "Lets do this !!!!!!!!!!!!"

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    welcome

    Wednesday,

    I am sorry that you find yourself here, but we are not too bad a group.

    You should have a specific type of cancer, like Squamous Cell Carcinoma (SCC) and you are HPV+.  Many of the H&N members have SCC in the Tonsils or Base Of the Tongue and discovered it by swollen lymph node(s) in the neck.  The HPV likes a certain cell type, like that found in the tongue or Tonsils.  You may certainly ask for clarification from your doctor.

    I had surgery on my neck and tongue and was lucky for the absence of pain.  My worst pain of the treatment was the radiation neck burn and MANY H&N members do not get that.

    You are in the “get smart phase” and will learn everything you need to for this trip.  As for trips, plan ahead, you and the kids will be going anywhere you please, but first let’s get you back in shape.

    You will do fine.

    Matt

  • OKCnative
    OKCnative Member Posts: 326 Member
    edited March 2018 #5
    47 year old male here that

    47 year old male here that was diagnosed with SCC at the base of my tongue with neck lymph-node involvement. I'm 5 months post treatment and (other than less saliva) I'm back to 100% and I've been that way for awhile. Even started back to the boxing gym and haven't tired out during training. 

    I credit my recovery to taking charge of my treatment and recovery and keeping a positive outlook and as much normalcy as possible.

    Within a couple of months of my diagnosis, a friend was diagnosed with the same cancer, but in his tonsils. He too followed the exact same treatment plan I had and both of us made it through with little issue and returned to work quickly.

    We both sought doctors that took the treat first cut later and only if necessary approach (we both went to two different centers). We also both agreed to throw the kitchen sink at our cancer and did Cisplatin chemo and daily radiation. However, even though we both had neck node involvement, we elected not to do neck dissections or surgery on our tumors. We both felt surgery would only cause us more issues and there is plenty of examples from cancer centers that surgery is often unnecessary. I have no idea if that's suitable in your case. I do know however that my first doctors wanted to do surgery and I fired them and went with doctors that agreed treatment first was the best (or at least acceptable) option. 

    Sure enough, treatment ended and my tumor in my tongue is gone and my neck nodes are back to normal. My friend had the same result.

    All I'm saying is; educate yourself to your type of cancer and seek as many professional opinions you want until YOU feel comfortable with the treatment plan. There is not just one road to a cure and ultimately it's YOU that has to live or die with your decisions. If a doctor isn't willing to consider options that you are comfortable with, then I suggest a different doctor.

    Good luck! It's a tough road, but very doable and the end result is so worth it!


  • Viilik70
    Viilik70 Member Posts: 73
    edited March 2018 #6
    Lymphoma & SCC

    I have been treated twice for SCC and the second time i had Hodgkins lymphoma with it. I had to get chemo for it. I have only had radiation for the squamous cell. I was 25 the first go and 39 the second. I am 47 and a father of 4 and still going by the grace of God. God bless my friend ☺

  • Wednesday
    Wednesday Member Posts: 22 Member
    #7
    follow up

    Well, I've had the tonsillectomy and neck dissection. 20 or so lymph nodes were removed and only the original swollen one had cancer. That one was also biopsied of course, but it did not show the lymphoma cells. What the heck? I saw one doc so far about the results and he said he doesn't know why the 2 biopsies have different results. I see another doc later this week, so maybe he will have more info by then.

    Thank you everyone for responding! I appreciate your feedback.

  • Wednesday
    Wednesday Member Posts: 22 Member
    #8
    Bill1958 said:

    Similar but not the same "Wednesday"

    My head and neck oncologist has biopsied my neck mass(5-7 cm node) with fine needle and found inconclusive.  Then he did surgery on this node and found no cancer.  While in surgery they biopsied two more enlarged nodes and found no cancer.  The nodes are full of lymphocytes typical of lyphnoma or infection.  My regular doctor, the ENT and the oncologist are sure this is cancer but no answers yet.  They are ordering a petscan asap.  I understand how we can be confused and I hope you get answers too!  I have read and heard from many folks on this site that HPV + cancer is more curable than HPV- cancer of the throat.  I wish you good luck!

    Thank you for replying! Best

    Thank you for replying! Best of luck to you! I am wishing you best health!

  • Wednesday
    Wednesday Member Posts: 22 Member
    edited March 2018 #9
    Darkdancer333 said:

    I was moved to a Hospitol

    I was moved to a Hospitol Cancer center close to my home. My Doc said HPV+ is a very good thing. The cure rate is in the low 90%

    I will be starting radiation and chemo 6 weeks from my diagnosis. ONly reason pushed back i because i need 4 tooth extractions which will hapeen next Thursday.. 

    I look you want to get this started, I used a line from Kyle Busch... "Lets do this !!!!!!!!!!!!"

    Exactly! "Let's do this!!!"

    Exactly! "Let's do this!!!" Best of luck and health to you!!!

  • Wednesday
    Wednesday Member Posts: 22 Member
    #10
    CivilMatt said:

    welcome

    Wednesday,

    I am sorry that you find yourself here, but we are not too bad a group.

    You should have a specific type of cancer, like Squamous Cell Carcinoma (SCC) and you are HPV+.  Many of the H&N members have SCC in the Tonsils or Base Of the Tongue and discovered it by swollen lymph node(s) in the neck.  The HPV likes a certain cell type, like that found in the tongue or Tonsils.  You may certainly ask for clarification from your doctor.

    I had surgery on my neck and tongue and was lucky for the absence of pain.  My worst pain of the treatment was the radiation neck burn and MANY H&N members do not get that.

    You are in the “get smart phase” and will learn everything you need to for this trip.  As for trips, plan ahead, you and the kids will be going anywhere you please, but first let’s get you back in shape.

    You will do fine.

    Matt

    Thank you for your

    Thank you for your encouragement! All the best to you! :)

  • Wednesday
    Wednesday Member Posts: 22 Member
    #11
    OKCnative said:

    47 year old male here that

    47 year old male here that was diagnosed with SCC at the base of my tongue with neck lymph-node involvement. I'm 5 months post treatment and (other than less saliva) I'm back to 100% and I've been that way for awhile. Even started back to the boxing gym and haven't tired out during training. 

    I credit my recovery to taking charge of my treatment and recovery and keeping a positive outlook and as much normalcy as possible.

    Within a couple of months of my diagnosis, a friend was diagnosed with the same cancer, but in his tonsils. He too followed the exact same treatment plan I had and both of us made it through with little issue and returned to work quickly.

    We both sought doctors that took the treat first cut later and only if necessary approach (we both went to two different centers). We also both agreed to throw the kitchen sink at our cancer and did Cisplatin chemo and daily radiation. However, even though we both had neck node involvement, we elected not to do neck dissections or surgery on our tumors. We both felt surgery would only cause us more issues and there is plenty of examples from cancer centers that surgery is often unnecessary. I have no idea if that's suitable in your case. I do know however that my first doctors wanted to do surgery and I fired them and went with doctors that agreed treatment first was the best (or at least acceptable) option. 

    Sure enough, treatment ended and my tumor in my tongue is gone and my neck nodes are back to normal. My friend had the same result.

    All I'm saying is; educate yourself to your type of cancer and seek as many professional opinions you want until YOU feel comfortable with the treatment plan. There is not just one road to a cure and ultimately it's YOU that has to live or die with your decisions. If a doctor isn't willing to consider options that you are comfortable with, then I suggest a different doctor.

    Good luck! It's a tough road, but very doable and the end result is so worth it!


    I'm 45 y.o. female, so

    I'm 45 y.o. female, so basically same age as you. I hope my recovery will be similarly positive. I appreciate your feedback. Best of luck and health to you and your friend. Thank you!

  • Wednesday
    Wednesday Member Posts: 22 Member
    #12
    Viilik70 said:

    Lymphoma & SCC

    I have been treated twice for SCC and the second time i had Hodgkins lymphoma with it. I had to get chemo for it. I have only had radiation for the squamous cell. I was 25 the first go and 39 the second. I am 47 and a father of 4 and still going by the grace of God. God bless my friend ☺

    So, they can come together

    So, they can come together (the scc and the lymphoma). I'm not sure if I have the lymphoma or not. One biopsy showed cells but the other did not. The one that did not was the final one of the entire, removed lymph node, so the docs aren't sure why the first core biopsy showed those cells. Hopefully I will learn more this week at my next appointment.

    I am really happy to hear that you are still doing so well so many years afterwards. That really gives me hope. I am 45, so basically same age as you. It is just so scary as a parent. I don't have a whole lot of self-importance on my own behalf (I'm no more or less important than any other human), but young children need their parents. I will do anything I need to do to be around for them to have a healthy, happy childhood full of love and joy. Thank you for sharing your feedback. I wish you all the very best for the future!!

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