Cancer on voicebox

lilmoma2all
lilmoma2all Member Posts: 6 Member
edited February 13 in Head and Neck Cancer #1

I'm 54 years old my first diagnosis of cancer was in February 2023,I went through 35 treatments of radiation. Had a PET Scan done in December 2023,it showed uptake to lymph node 2A..In January 2024 I found I also had cancer on the surface of voice box as well.Doctor says my only option is total voice box removal and the lymph nodes on the right side of neck..I don't want to have the surgery for my voicebox to be removed..So I'm seeking options

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,273 Member

    Hello, lilmoma2all, and welcome to the CSN H&N discussion forum.

    I am sorry to hear of your situation. We always like to hear clear when we get scans and unfortunately, this was your case.

    I don't know where you are or where you were treated but my best recommendation is to get a second and maybe a third opinion. That is from a major cancer center, a very major hospital that deals especially in your kind of cancer. Maybe there is another cancer center or teaching hospital in your area. You want the best you can get in your situation. A major teaching hospital also would be a good possibility. Depending on where you are there may not exactly be one near you, you may have to travel. I did a little searching and here are some ideas...

    Best Hospitals for Cancer

    Compare the best cancer hospitals. U.S. News evaluated nearly 900 hospitals for cancer treatment and ranked the top 50 that treat cancers such as leukemia, lymphoma, melanoma, breast, kidney, colon, prostate, pancreatic, head and neck, orthopedic, uterine and ovarian cancers. See also a list of oncologists and hospitals that are high performing in colon cancer surgery, lung cancer surgery, ovarian cancer surgery, prostate cancer surgery, uterine cancer surgery and leukemia, lymphoma & myeloma. Find the best cancer hospitals near you....

    MD Anderson in Texas is rated #1.


    Here is another find listing a lot of cancer centers...

    America's Best Cancer Hospitals 2023


    I wish I could do more for you but you belong in the hands of a good cancer care team. I know there is no easy answer to this but the main thing is treating this again has to be done right and to be sure to eradicate all the cancer this time around. With head and neck cancer especially you want to get it the first time and since it came back you need to make sure wherever you go to stress that it needs to be gone this time. Repeated treatments in the H&N area eventually damage functional areas and create more problems. When you go for other opinions take along a notepad and write things down, in this stressful situation you will forget things. Take along a spouse or friend, two pairs of ears are better than one. I always prayed about my situation also for God's guidance, help, and Blessings in my situation, it helps. I pray you find a good care team to get you through this situation and eradicate this cancer.

    I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you may find it helpful.

    Our Motto On Here is NEGU (Never Ever Give Up)

    Wishing You The Best

    Take Care, God Bless

    Russ


  • lilmoma2all
    lilmoma2all Member Posts: 6 Member

    Thank you .I had my radiation at blueridge cancer center valdese,nc..I see an otolaryngologist in Winston Salem NC He's the one recommending total voicebox removal..Im not sure which way to turn or how to go about getting a 2nd/3rd opinion

  • wbcgaruss
    wbcgaruss Member Posts: 2,273 Member

    Well, I hope others on here help out with this, because I have not gotten a second opinion on anything but depending on the situation I certainly would. I believe Swoosh13 recently within the last year had gotten a second opinion for her husband.

    OK, I believe the way it works is you have to find another major hospital and or cancer center that you are comfortable with and get an appointment with an ENT or with a doctor in their Head and Neck cancer section. You will tell them what hospital and doctors you have been treated at and you are requiring more treatment and give specifics as much as you can. If I am correct that doctor will contact your previous doctor and summon all your records related to your case and it is no problem because these days it is a commonly accepted practice to get a second opinion. These days everything can be sent electronically over the internet including any MRI's, PET Scans, CT Scans or other. Then your doctor providing your second opinion can review your case before your appointment. I imagine it is possible the second opinion doctor may want you to get some sort of a scan at their facility so they have the latest up to date information on the area in question. Below is a link from the American Cancer Society explaining getting a second opinion. If nothing else a second opinion can tell you if you are on the right path.


    Here is a link of the search I did to find information on second opinions and there is lots of other sites and info for you to check out.

    https://duckduckgo.com/?t=ffab&q=head+and+neck+cancer+how+do+i+get+a+second+opinion&ia=web


    Wishing You The Best

    Take Care, God Bless

  • lilmoma2all
    lilmoma2all Member Posts: 6 Member

    Thank you very much

  • wbcgaruss
    wbcgaruss Member Posts: 2,273 Member

    You are so very welcome.

    I am Wishing You The Best

    NEGU (Never Ever Give Up)

    Take Care, God Bless

    Russ

  • Swoosh13
    Swoosh13 Member Posts: 74 Member

    Hi Lilmoma2all,

    My husband had SCC base of tongue HPV+ 16 diagnosed July 6, 2023. At our local cancer hospital (near Milwaukee, WI) their protocol was to see their 3 dr. tumor board first (so we saw their surgeon, oncologist and radiologist) all over 2 days the end of July as we couldn't get his PET done until July 19. They already had his ultrasound, CT, biopsy and PET scans done at another facility. You may know the drill on how that works already. The surgeon told us he was at Stage I and she did not feel surgery was necessary, that he could get 90% cure rate with just radiation and concurrent chemo (Cisplatin).

    Meanwhile, I found out that UW-Northwestern in Chicago (a little over 2 hours south from us) has a different type of radiation (Proton) which is supposed to be much less harmful than traditional radiation. The first week in August, I called their customer service number to ask about the protocol for him to be seen at Northwestern for a second opinion to see if he could be a candidate for Proton radiation. Things moved very quickly on their end. They also ordered copies of all of his scans for us. By August 8, we were set up to see all 3 of their tumor board doctors. Once again their surgeon said no to surgery (because they thought if they did surgery but couldn't get clean margins, he'd end up having radiation and chemo anyways).

    One decision we still hadn't made with our local hospital oncologist yet was if he should get 3 large doses of Cisplatin over 7 weeks or 7 smaller weekly doses. So we asked the NW oncologist what he thought and he said there is no choice here, we only do 7 smaller weekly doses. In the end he was dosed with the same "amount" of Cisplatin, and by making that choice, we feel he tolerated the chemo MUCH better, and had less chance of hearing loss or neuropathy (neither of which he got in the end).

    When we finally saw NW's radiologist at the end of the day, he said their Proton radiation center (located in Warrenville, IL to the west of DT Chicago) was booked out already until mid-October. And this was early August, so we could not wait.

    If it could have happened sooner, we were prepared to "uproot" during his treatment and stay at a local hotel in Warrenville, but in the end we came back to our hometown hospital.

    Would absolutely get a second opinion again. Truly glad we chose the 7 Cisplatin over the 3 larger ones and his doctors here were leaving it up to us to choose.

    Oh, BTW, the next closest "second opinion" facility would have been Mayo Clinic in Rochester, MN and when I called them they told me there was a 6-8 week wait to even get to see their tumor board doctors (not sure why). They also had Proton radiation there.

    Not sure what kind of insurance you have, but generally with "non-Medicare" insurances they will cover getting a second/third opinion I believe. We are 65+ so our Medicare covered everything but the $40 co-pay for each of the 3 doctors we saw at NW.

    If you're looking at other hospitals/facilities, choose a good, solid cancer/teaching hospital (I don't believe where my husband was treated, although it is a teaching hospital, was/is nationally accredited), which is what you want.

    Best of wishes, and if there's anything else I can share, please let me know!

    Swoosh13/Gail

  • lilmoma2all
    lilmoma2all Member Posts: 6 Member

    Thank you very much,I'm new to this and when went for my 35 treatments it was for cancer on the epligottis,it is gone from epligottis but in lymph node 2a and surface of voicebox and the doctor/ surgeon is saying my only choice is surgery to remove total voicebox..that has terrified me and I really don't want to go through that kind of surgery..I have reached out to my Onycologist asking him for recommendations.i only have Medicaid and don't know what they will pay for..