Had surgery June 30, no path report yet; worried about a few things

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SylMarie
SylMarie Member Posts: 91 Member
in Head and Neck Cancer #1
I apologize in advance for this long post. It was hard to sit down and put my thoughts together. I am 17 days post-op, after going out-of state to JH in Baltimore. It looks like I am healing pretty well from the surgery itself, but nervous about a few things and anxious about what's to come.

 

Some background: The biopsy I had on May 31, 2016, showed upper alveolar ridge cancer, SCC, moderately differentiated, with a bit of bone involvement. I had an MRI, CT and PET before my initial consult and one lymph node looked suspicious, as the CT showed it was enlarged and the PET showed an SUV with a maximum of 6. The day before my surgery, I had a fine needle aspiration of that one lymph node, which came back negative. During surgery, the surgeon did not perform a selective neck resection. This worries me.

 

I have read quite a bit of research online (reputable sites) and it seems that the standard is to do a selective neck resection in cases of  Head & Neck cancers. Before the surgery, my surgeon's Fellow gave us a lecture on why there were risks attached to neck dissections and so they didn't do them in every case. I am still troubled, however, because studies seem to indicate that doing such a resection raises your chances for survival. I have also read that PET Scans are not truly reliable. There can be tiny amounts of cancer inside lymph nodes that do not register on a PET Scan. This is yet another reason for the selective neck resections. The thought that there could be cancer in any lymph nodes and that they risked this by not doing a selective neck resection is very scary. And also, if they decide to do radiation, a neck resection in the future would be more complicated if a person's tissues have already had RADs. Any thoughts about selective neck resections?

 

The surgeon told me that he felt confident that they had gotten clean margins. Of course, the only thing that counts is the post-op pathology report, which they should have completed in the next day or two. They removed three upper molars and my canine tooth. A small piece of my tongue was also removed, as there was mild dysplasia. The piece of tissue and bone in my upper jaw came out in a block, and they have been decalcifying the bone so that it can be sliced in thin enough pieces to be analyzed. If the bone itself was invaded enough, I am sure they will recommend radiation, although I wonder if they ever just go back in and do another surgery to get it all first. Studies I have read indicate that the size of the margins in my type of cancer are more important than adjunct treatment. Do they typically just add RADs and chemo, to just be done with it?

 

Finally, I am thinking it may not hurt to get a second opinion, even if I have already had the surgery at one institution and their tumor board will likely be meeting this Thursday to come up with a treatment plan. I am thinking of doing this because of the surgeon's decision not to do a neck dissection and my concerns about that. It would have to be at another ENT-heavy cancer center/research hospital, as I am certain that it is best to go to a center that deals with a lot of the specific type of cancer that I have. Does anyone have any input on any of these issues I have raised? I would appreciate any advise or wisdom that anyone may have to share with me. Thank you.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    go get them

    SylMarie,

    I was stage IVa, scc, bot, 1 lymph node, hpv + (surgery, rads & Erbitux).  They only took my 1 lymph node (the obvious cancer one) with a jugular vein dissection.  They also worked on my tongue.

    The rads and chemo will work  together to get  any remaining cancer cells.

    I am 4+ years post and NED.

    You can always 2nd guess and if you do you should get a 2nd opinion.  It doesn’t hurt.

    Whatever path you take the doctors will help you reach the best decision.

    Good luck,

    Matt

  • SylMarie
    SylMarie Member Posts: 91 Member
    edited July 2016 #3
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    CivilMatt, thank you.It was good to get a response from someone.

    My surgeon said that getting through the surgery was the worse part, but I guess when you have an over-active brain and anxiety, you can do a number on yourself. Thank you for your input. The fact that you are 4+ years and NED inspires me.  

  • wmc
    wmc Member Posts: 1,804
    #4
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    A second opinion might be good.

    I have seen [read] many that had a neck dissection on one or both sides and had some problems. Many can't raise their arm above the shoulder. I'm no doctor by any means, but my doctor believes in doing the neck dissection as a precaution in many cases. I had T3; N0; M0 3cm x2.5cm SCC supraglottic tumor. It was just above my vocal cords and I had bad lungs so my only choice was to remove my larynx. They could not keep me breathing any other way. They did the neck dissection on both sides, level 2~5 as a precaution that if it comes back it can't go there so my odds were much better of not returning. They cut me from ear to ear and took 48 on the left side and 38 on the right side. Pathology was done at the time of surgery so they knew all were clean. Over the last few year's I have asked him about doing the dissection as I read many don't have it, and others only on one side. Just this last April I asked him this. He said he likes to do both sides. As long as he is there, it only takes 20 more minutes. Now he may be referring to ones having Laryngectomies. To me, it made sense to do it. The only side effect I have is the left side is numb from my ear to my chin and always be. Well I take muscle relaxers every day so I have full rotation of my neck, but they are the weakest ones you can get and they work.

    I would ask for copies of the CT scans [you get the report on the CD] and the pathology report as well just for your records, and to read them. My surgeon sent me the notes that he sends to my referring doctor and CC me as well. I have read everything that was done down to which scalpel and size, and which sutures and size were used. I learned a lot and it was an 8 hour surgery. I have been NED and cancer free coming up on 3 years Oct 2nd.

    Best of luck;

    Bill

  • SylMarie
    SylMarie Member Posts: 91 Member
    #5
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    Going for a second opinion

    Thank you for your thoughts. It really helps to read what more experienced travelers on this journey have to say! I just learned that the Tumor Board at JH recommended I meet with a radiation oncologist for a consult and I'm waiting for a call from them to schedule it. In the meantime, my local oncologist recommended a couple of rad oncologists at Mass Gen, where he trained. I am going there this coming week to meet with them. JH is highly rated in HNC, but they do not have HNC patients meet with a team; at least, not in my case where it was clear that surgery had to be done first. I've learned that in other types of cancer, they sometimes do. As far as HNC, the care at JH tends to be fragmented and I have only met the surgeon who removed my tumor. I have received very little guidance or support about everything else as a result, and if it were not for this board, I don't know how I would have gotten even this far.  Thank you all so much.

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