another neck dissection on opposite side 14 months later

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joannaw81
joannaw81 Member Posts: 185 Member
edited February 2012 in Head and Neck Cancer #1
Hello everyone. I need your help and advise,here is my mom's story:
10/30/2010-diognossed with stage 3 tonsil SCC with one lymph node
11/15/10-surgury to remove tonsil and neck dissection, during surgury another small cancer approx. 0.3 cm found on hard palate also removed.
2/17/11-finished radiation, no chemio was suggested
6/2011-first PET all clear
10/6/11-surgury to remove cancer from oral tongue on the same side, 0.6 cm, no rad or chemio, got second opinion from Sloan Kittering
12/26/11-pain during swallowing on the left original side and pain in the back of the head
1/31/12-ct scan
2/3/12-results, nothing seen in the original area on the left side or nowhere on the left side however on the right side 1 lymph node seems to be enlarged measuring 10:10 mm, on the last PET scan it was 4:4 so it grew
Doctor ordered a PET scan, appoint. next Friday, says if it shows cancer neck dissection will be perfomed on that side. Doctor says its probably from the cancer on hard palate.
I am so hopeless..... so many surguries during the first year, I am terrified, is this going to continue like this..... every 3 motnhs someting else showing up, does she have any chances that she will survie and live a long life???? what are the chances after the cancer showing up so many times? I can't even cry anymore. Please give me some words of wisdom cause I don't know what to think or do, I would like to get my hope back becasue I am starting to slowly loose it.

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  • IAmStrong
    IAmStrong Member Posts: 58
    #2
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    Always Hope
    Hi, I had a SCC on my tongue, had a partial glosectomy (tongue removal), sent to med center head and neck clinic. In the end we decided to wait and watch. One year later I found a tumor on my neck, same side. Had 2 lymph nodes, one broke through was wrapped around the juglular, so a section of this was removed. Now, I developed another large area just under my clavicle. They were CERTAIN this too was cancer, and that if so, I may not be treatable. They did the biopsy to "prove what they knew". Well, I prayed my heart out through my tears. It was benign! I was never so happy to be able to have chemo and radiation, where I had been terrified of that just prior.:)

    One step at a time. It is hard not to project, but do try to take the "facts" as they come. Opinions are not facts. Faith, diet (if possible), definately abstaining from any nicotine. If she smokes however, she is reducing her chances. I pray this isn't so.

    Hang in there...you Will get through this. Kindly....IAmStrong
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
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    This has been a difficult journey
    I've read your post several times, and think I understand the chronology. If anything I'm about to say doesn't make sense, please bear with me. What I understood is that she had a primary cancer on the L tonsil, a second (likely) primary on the hard palage, and a single positive node on the L side. She had radiation, but after radiation had a cancer removed from the tongue, and now has what is likely a single positive node on the R side.

    Thats a lot, so I understand your frustration. The problem is that no one, not the original doctors, nor Sloan Kettering, nor you and I, know whether these are all separate cancers, or are local/regional recurrances from a single primary. There is simply no way to answer that question.

    Having said that, the most common area that isn't cured by the original radiation would be a node on the opposite side of the original primary. That area got less rads than everywhere else, so was a relative safe-harbor for cancer cells. If that is the case, these cells could have been there since the first treatment, and are just now showing up.

    Also, her original tomotherapny would have been "shaped" to her known disease, so the majority of the radiation would have focused ont the left side and hard palate. The reason I'm mentioning this is that she has not necessarily had her total exposure to rads, depending on where she may need treatment.

    It would seem to me that it makes sense to do a node disection on the right side, because there is a reasonable probability that this new finding is only new because you can see it now, and that it may well have been there, in microscopic form, all along. This is just my feel for your situation based on limited knowledge of the situation. The situation is complicated, and so you will find, even among treatment professionals, a variety of possible responses.

    There is another poster at this site who has been down this road, only much farther than your mother. It may be helpful to you to talk to her. If you're interested, PM me and I'll see if I can make the connection for you.

    Best of fortune to you and your mom.

    Pat
  • KTeacher
    KTeacher Member Posts: 1,103
    #4
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    Not fun
    Not fun but she can do it. I just finished a second go around with the beast in October. In August, 2010, I had a lump removed from my right upper lip (now known as my lip lift). An inch of my lip was removed and stiched back together. Had to have some dental work done, big ouch. Radiation only, seemed like I was completely cooked. Finished rads in October 2010 and recovery bagan. I was able to 'eat' through the process. June 2011 I noticed a lump on my neck, left side--that's not supposed to happen. After many scans and biopsy--mets. C is not supposed to cross from one side of the upper lip to the other side of the neck. I am special. Neck disection in August 2011. Rads again. I don't know why but it wasn't as bad as the first time. Not fun but doable. Make up a batch of Magic Mineral Broth and freeze it in portions. Use it as your broth for anything that you usually use broth for. Packed full of nutrition. Make sure mom is getting good food in what she eats. My husband makes wonderful smoothies, we add powdered protein and use greek yogurt, it has more protein in it. I still have a smoothie most days, a salivary gland was removed the second time so I am dry, not as dry as some, but dry. Keep hydrated. Check the Superthread that Sweet keeps up, so much good info for those of us going through treatment and living with the side effects. Good info for caregiver in understanding what we are going through. Best wishes, let us know how things are going.

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