I was really hoping for good news

newbride
newbride Member Posts: 142
edited March 2014 in Head and Neck Cancer #1
On Tuesday he had a follow up CT scan and we had hoped for good news. Unfortunately what we got was the complete opposite -- all this intensive treatment did not work.

My husband has a huge choice ahead of him. Not do anything and the tumors will eventally kill him - the doctors can't say how long it will take as they do not know the rate of growth.

The other option is more surgery - but even more radical than before - this would require removal of all bone in his face fromt he eye sockets downward and major reconstruction. In addition, they cannot even tell us this would give him a 50% survival rate they said the odds could be around 10% possibly. Also there is a chance of major complications - due to the chemo and radiation there is a possibility the wounds would not heal and he would need extensive wound care therapy that could last over a year or even longer which also provides another risk - infection of the open wounds. ALso if he has the surgery he would be in the hospital at least 4 weeks if not more right off the bat.

I'mjust at a loss and I don't even know what I want him to choose. In my heart I know what is probably the right choice, but he needs to make this one.

I really was hoping to give you all good news.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    This is a tough turn of events
    I'm so sorry. I don't know the initial diagnosis, were you expecting something along these lines? Reading your past posts there seemed to be a lot of depression all along. If you could tell us the location of the primary and where it has spread. That surgery sounds so drastic and I have never heard of it before.

    I think you probably need some sort of professional help at this point, does your hospital offer anything or perhaps a local support group. Lots of major decisions to be made. May god give you strenth!
  • newbride
    newbride Member Posts: 142
    #3
    ratface said:

    This is a tough turn of events
    I'm so sorry. I don't know the initial diagnosis, were you expecting something along these lines? Reading your past posts there seemed to be a lot of depression all along. If you could tell us the location of the primary and where it has spread. That surgery sounds so drastic and I have never heard of it before.

    I think you probably need some sort of professional help at this point, does your hospital offer anything or perhaps a local support group. Lots of major decisions to be made. May god give you strenth!

    Thanks ratface
    The original diagnosis was myoephithel carcinoma. It is a salivary gland cancer that showed up originally in his sinus cavity. He is only the 3rd reported case of this type of cancer appearing there. When this cancer is in the mouth area it responds very well to surgery from twhat the doctors have explained to us. He had surgery in March where they went up through his palate removed the tumor and reconsturcted his palate from skin/tissue/veins in his arm. After a full 8 weeks recovery he was looking and feeling good. The last day of our honeymoon he started getting very bad bloody noses and 3 days later his nose was double in size. The doctors thought he had an overgrowth of scar (grandulated) tissue. When they went to remove it it was discovered that the tumor reappeared - this time in the nasal cavity instead. Again - extremely unusal and rare. The doctors did major surgery which included removing his entire upper jaw and reconstructing with bone from his leg. Also since the tumor came back so quickly last time they did heavy treatments of radiation and chemotherapy. He did 5 rotations which involved 3 chemo drugs and twice a day radiation. The doctors said it is very unusual to have the kind of breakthrough cancer during this type of chemo and radiation and are surprised that none of the tumors shrunk at all with the radiation.

    I honestly can't see him choosing to go through surgery again.
  • train-nut
    train-nut Member Posts: 101
    #4
    Unwanted News
    I am very sorry to hear this unexpected news. The two of you are in my thoughts. Rich
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Newbride
    I too am very sorry to hear this kind of news. I was where you are now three years ago when I was told that my NPC came back for a 3rd time. We did not know what to do or where or who to turn too, all I knew is that I did not want any more treatment

    I am not sure how you & your husband feel about Alternative Cancer Treatment; it to like everything else depends on a person attitude to want to live.

    My e-mail address is on my post I would be glad to send you what I am doing, but only if you rule everything else out, this is a last option sometimes it works and sometimes it don’t

    Nothing is for sure accept for our salvation and that we accept only by Faith.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #6
    newbride said:

    Thanks ratface
    The original diagnosis was myoephithel carcinoma. It is a salivary gland cancer that showed up originally in his sinus cavity. He is only the 3rd reported case of this type of cancer appearing there. When this cancer is in the mouth area it responds very well to surgery from twhat the doctors have explained to us. He had surgery in March where they went up through his palate removed the tumor and reconsturcted his palate from skin/tissue/veins in his arm. After a full 8 weeks recovery he was looking and feeling good. The last day of our honeymoon he started getting very bad bloody noses and 3 days later his nose was double in size. The doctors thought he had an overgrowth of scar (grandulated) tissue. When they went to remove it it was discovered that the tumor reappeared - this time in the nasal cavity instead. Again - extremely unusal and rare. The doctors did major surgery which included removing his entire upper jaw and reconstructing with bone from his leg. Also since the tumor came back so quickly last time they did heavy treatments of radiation and chemotherapy. He did 5 rotations which involved 3 chemo drugs and twice a day radiation. The doctors said it is very unusual to have the kind of breakthrough cancer during this type of chemo and radiation and are surprised that none of the tumors shrunk at all with the radiation.

    I honestly can't see him choosing to go through surgery again.

    Bridge of Sighs
    A friend and I were out on the golf course, ironically enough, I think now, about a month or so before I was told I had cancer. He is a survivor of laryngeal cancer who had minimal surgery, if any. He said, calmly enough as we rocked and rolled in the golf cart that if it came back he would choose not to have his vocal chords removed. He would choose to die.

    If you think I'm happy-dappy now, it may be a surprise to learn that I was once much more optimistic and much less informed, even having gone through my mom's cancer and her death, or perhaps because of it, now that I think about it.

    The deal is, I talked to my friend at some length about fighting the good fight and even providing examples (including my mom) of people I have known personally who fought and won, at least for a worth-while period of time (my mom lived for more than 20 years between her original surgery for breast cancer and her death from the same cancer in her brain).

    My buddy was determined that if it came back he would pass on what he considered dramatic options.

    Eventually we quit that discussion, because it was getting in the way of golf, among other things.

    I have learned from that conversation among others I have since had in this joint, CSN, and from my mom's experience, most specifically, that there MUST be hope as long as it can be legitimately sustained.

    At the same time, there comes a time when you, the survivor, decide that you have had enough. It is no more complex than that.

    Your hub, newbride, has an awesome, an absolutely awesome, choice to make. I do not envy him. I do not envy you.

    I wish you both the best.

    Take care,

    Joe
  • newbride
    newbride Member Posts: 142
    #7
    soccerfreaks said:

    Bridge of Sighs
    A friend and I were out on the golf course, ironically enough, I think now, about a month or so before I was told I had cancer. He is a survivor of laryngeal cancer who had minimal surgery, if any. He said, calmly enough as we rocked and rolled in the golf cart that if it came back he would choose not to have his vocal chords removed. He would choose to die.

    If you think I'm happy-dappy now, it may be a surprise to learn that I was once much more optimistic and much less informed, even having gone through my mom's cancer and her death, or perhaps because of it, now that I think about it.

    The deal is, I talked to my friend at some length about fighting the good fight and even providing examples (including my mom) of people I have known personally who fought and won, at least for a worth-while period of time (my mom lived for more than 20 years between her original surgery for breast cancer and her death from the same cancer in her brain).

    My buddy was determined that if it came back he would pass on what he considered dramatic options.

    Eventually we quit that discussion, because it was getting in the way of golf, among other things.

    I have learned from that conversation among others I have since had in this joint, CSN, and from my mom's experience, most specifically, that there MUST be hope as long as it can be legitimately sustained.

    At the same time, there comes a time when you, the survivor, decide that you have had enough. It is no more complex than that.

    Your hub, newbride, has an awesome, an absolutely awesome, choice to make. I do not envy him. I do not envy you.

    I wish you both the best.

    Take care,

    Joe

    Thanks Joe
    Joe

    I know some others on the board here have no appreciated your bluntness. I for one have always appreciated it. I do not like when people sugar coat things.

    I am personally pissed off big time at his radiation oncologist who kept telling me all along that he is certain and very confident that he will eradicate every last cell. A doctor should never make these types of promises. I will deal with that one once my husband has made his decision and down the road when we don't need this guy. But I will be sending him a copy of his email and a suggestion that he re-evaluates his way of speaking with patients and their families and be real rather than giving false hope. Every other doctor was more realistic in saying "wait for results" etc.

    Anyway, I really don't know what my husband will choose. I can't imagine him going through even more sugery with such low odds. And what would his quality of life be? I'm not sure the odds really outweigh the risks.

    I will stand behind whatever choice he makes but I'm not sure more sugery is the right one. Especially since he has had 2 already and both times the cancer has come back quicker and more aggressive. And the chemo/radiation did not touch it.

    Ironically enough I know you know i had bitched about him not talking to me, touching me, etc will that all changed - it's almost like a weight was lifted off his shoulders. He is more talkative hugs me every night just seems so much different.

    I'll let you know his decision once he makes it.

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