Recurrence / double radiation

OhNoItsMe Member Posts: 21 Member

So it’s been a LONG time since I posted, but as a search for the NAVdx on Google brought me back and I thought I would update my story. BTW I am a huge proponent of the NAVdx and trust it more than a PET or CT scan for HPV cancer.

I was originally diagnosed in October 2020 with tonsil cancer with one lymph node involved, both on the left side HPV+. I underwent 33 radiation treatments and 6 cisplatin treatments.

I was deemed NED at my 3 month PET in March of 2021. My lymph node never fully disappeared. I asked my oncologist about it and his words were “don’t worry about it, the PET showed it is gone. That must be scar tissue or dead cancer cells”

by October of 2021, my neck was stiff and hurting on the same side. I was told it was just fibrosis. When I asked for a PET scan I was shot down and told that it was not normally done with an NED 3 month PET. I convinced them to give me one (because I also wanted to be sure cancer was gone before removing my port) after a suspicious CT scan, lit up PET scan and a needle biopsy, I was diagnosed with a recurrence of that lymph node that never fully disappeared. The tumor was now growing out of that node, and was 9.5 cm. The first surgeon I seen told me “I will try to remove the whole tumor, but I’m not very confident that I can. You can’t have radiation again, so you will be on chemo/immuno for the rest of your life most likely.

I seeked a second opinion and found a team of Drs willing to do surgery, and chemo/radiation again if needed. On January 2022, I had a radical neck dissection (removing every muscle, nerve, and vein in my neck except the internal carotid artery), tonsillectomy (cancer grew back there too), skin graft and a pectoral flap. After healing for 5 weeks I went through twice daily radiation and weekly cisplatin. I am now a year and a half out and just had a checkup and another NAVdx and am still NED. I tell everyone to advocate for yourself… if you do not like what your Dr is telling you, get a second or third opinion. Don’t think that double radiation is not possible. I’m living proof that it can save your life.


  • mart62
    mart62 Member Posts: 31 Member

    I am getting ready to get radiation and chemo again as I had a recurance after 8 yrs . Thanks for the encouragement I really needed to hear that . I am frankly worried about the second chemo and radiation . Did you have side effects like the 1st time? I am getting proton therapy starting Sept 9th and Carboplatin starting Aug 31st.

  • wbcgaruss
    wbcgaruss Member Posts: 2,094 Member
    edited August 27 #3

    Marty, I had my third cancer, a lymph node that was not encapsulated and it was spreading outside the lymph node. It ended up being more than they expected and a longer operation ensued. I had complications and after 36 days was released to a rehab hospital. Following that and a recovery at home I received radiation for the second time around the H&N area, 30 treatments on the Cyberknife machine, that was in 2020. You can do this, you will make it, stand strong, I always recommend lots of prayer and trusting in God, and being reconciled with God. You can get radiation a second time and getting proton therapy is what they claim causes the least side effects and damage. I did not have chemotherapy a second time but with either chemotherapy or radiation it is possible to have side effects, hopefully, yours will be minor or none. There is that trade-off where treatment can save or extend your life, and I guess they are basically the same thing, but you are going to extend your life but there is a possibility of side effects. The chemotherapy you are having is known for possible side effects, I was told by my first cancer care team that any of the chemo drugs that end with platin can cause issues. I had cisplatin, Taxotere, and 5FU. I have neuropathy in my hands and feet from the platins-type chemo. I will put a link about Carboplatin below, you can read up on it and ask your doctor any questions you have.


    Here is info covering quite a bit on Proton Therapy and what to expect from Johns Hopkins--

    Proton Therapy-video--

    You will do fine, just stay positive, and forward we go.

    Take care, God Bless-Russ

    NEGU (Never Ever Give Up)

  • OhNoItsMe
    OhNoItsMe Member Posts: 21 Member

    I had photon both Times. The second time was definitely easier. The side effects weren’t as bad, and I knew what to expect. I didn’t get all the mouth sores like the first time either. I did cisplatin both times. Did they do surgery? I think the biggest concern I would have if you didn’t have surgery is carotid artery blowout. You are at a higher risk for that especially when you have a second round. It’s still a low risk but be mindful of that, as it can be fatal if not treated urgently.

    The other thing is trismus has been terrible after the second round. Certainly some of that can and probably are from surgery. Be sure to stay on top of your mouth stretches. I can open my mouth JUST enough to put a grape in. That’s it! I’ve tried everything to get it open wider and I feel like there is no hope in improving it.

    Stay positive.. you will do just fine.

  • mart62
    mart62 Member Posts: 31 Member

    Thanks for the feedback Russ and Oh. I am mentally preparing for this 2nd go around . I know God walks with me and will not leave my side. I am praying for the best outcome.

  • wbcgaruss
    wbcgaruss Member Posts: 2,094 Member

    Amen, Marty, Take Care, May God Bless & Watch Over You.