Radiation Twice - Anyone? Recurrence - Hypopharyngeal Cancer - Husband

kimmygarland
kimmygarland Member Posts: 312
edited March 2014 in Head and Neck Cancer #1
I have been reading this board for over a year and there is such a wealth of knowledge.

My husband was diagnosed with hypopharyngeal cancer w/spread to 1 lymph node in June 2009. He went through 6 weeks induction chemo, followed by 35 rads + chemo (fun, fun). All was well we thought. This week marked 8 months out of treatment.

He had a regularly scheduled, pet scan last week and we got the results today. Not good. Showed a couple of hot spots. Doc examined him and we saw pics on camera thingy of what he is concerned with - looks just like the old pic from June 2009, only smaller. Appears to have come back. There will be an MRI next week, and then a biopsy in a couple of weeks - but we are getting the impression it is merely a formality and to assist doc in deciding on course of treatment.

He said surgery is possible or another round of chemo/rads, or both. He really didn't want to talk about it much, until it is confirmed. We are at University of Texas Southwestern Medical Hospital which is a teaching hospital with a lot of clinical trials, etc. so I feel like we are getting good care. I guess if biopsy comes back positive it will go before the "tumor board" for discussion on treatment.

I am so worried. He's 57, diabetic, and as you all know - after 8 months, he really is not fully recovered from Round 1, and now faces it all again? How will he survive it? I am scared to death and he is so stoic and brave. I know I need to suck it up and move forward - and I will, but guess I am in a bit of shock right now.

Seems like I have read on here a couple of people who have been through rads twice? He has scar tissue in his throat, but is able to eat pretty much normally, has most of his saliva and taste so he was very lucky first time around.

I know it seems like I am being negative and should hope for a clear biopsy but all indication are from doc that this is not going to happen. Maybe we will all be surprised.

I am rambling... thanks for listening.

Comments

  • stevenl
    stevenl Member Posts: 587
    #2
    Texas
    Hi Kim,

    I am also in Texas and am in Ft. Worth. My ENT's name is Ducic and he is very involved at U.T. Southwest. I even worked on the recent addition. My treatment/ surgery was at Baylor All Saints. I am 4 months out scc stage 4 right tonsil and I am sorry to hear this possible diagnosis.I will be praying for both of you.

    Best,
    Steve
  • kimmygarland
    kimmygarland Member Posts: 312
    #3
    stevenl said:

    Texas
    Hi Kim,

    I am also in Texas and am in Ft. Worth. My ENT's name is Ducic and he is very involved at U.T. Southwest. I even worked on the recent addition. My treatment/ surgery was at Baylor All Saints. I am 4 months out scc stage 4 right tonsil and I am sorry to hear this possible diagnosis.I will be praying for both of you.

    Best,
    Steve

    Thanks Steve!
    Nice to "meet" a fellow Texan here! I hope you continue to do well. Although we knew this was a possibility, I guess nobody thinks this will happen to them. Argh... very scary.
  • Barry Keith
    Barry Keith Member Posts: 11
    #4
    I had 6wks of RADS after my first surgery in Nov 2008. All was well until PET and byopsy of Oct 2009.
    Second surgery in November 2009 however flap didn't hold due to previous RADS, back in for another try (3rd) in Dec--this time flap didn't take either---back into surgery again (4th) in Dec to increase blood flow. Finally got to go home just after Christmas.
    Completed a second round of 6wks of RADS along with Chemo, end of March. Also had to take 30 HBOT dives to assist in healing.
    PET first part of July showed a spot...byopsy confirmed positive for SCC. Surgery only (5th)scheduled for 23 Aug.

    I envy those that have been through this one time and seem to be recovering.

    Yeah, I ramble too....good luck..
  • JUDYV5
    JUDYV5 Member Posts: 392
    #5
    Keep us posted
    I pray that the results are good - Keep us posted.
  • kimmygarland
    kimmygarland Member Posts: 312
    #6
    Barry Keith said:

    I had 6wks of RADS after my first surgery in Nov 2008. All was well until PET and byopsy of Oct 2009.
    Second surgery in November 2009 however flap didn't hold due to previous RADS, back in for another try (3rd) in Dec--this time flap didn't take either---back into surgery again (4th) in Dec to increase blood flow. Finally got to go home just after Christmas.
    Completed a second round of 6wks of RADS along with Chemo, end of March. Also had to take 30 HBOT dives to assist in healing.
    PET first part of July showed a spot...byopsy confirmed positive for SCC. Surgery only (5th)scheduled for 23 Aug.

    I envy those that have been through this one time and seem to be recovering.

    Yeah, I ramble too....good luck..

    Hang in There
    Seems like such a stupid thing to say.... but it's too - hang in there, even if it's just by your fingernails. You have really been through h#ll! I hope your surgery goes well.
  • Douglas08
    Douglas08 Member Posts: 18
    #7
    Hi Kim,
    My husband has the same diagnosis as yours with mets to several lymph nodes. Stage T4N3MO in Oct09. What is the stage of your husbands ca? Did he have a neck dissection? Where do they think he may have a recurrance? in his throat or in his affected node? Did he have a complete response to Rx? My husband had a complete response in his throat but not in his neck node. But the cat and pet scans show no evidence of recurrance. The pet scan showed some uptake but the path report stated it was due to post rx changes. The cat showed no enlarged lymph nodes. My husband did not have a pet before he started RX only after Rx. When did your husband have his last Pet/Cat Scan?
    Try not to panic. It sounds as though you are in good hands. I will be praying for you every day that all the test come back neg.It's far better to have people be overly cautious than to miss something. Your husband sounds like mine. Very brave and stoic--more concerned about you and his family than himself.No matter what happens you will deal with it. Just keep picturing the reports coming back neg!!!
    Please keep us all posted.
    With positive thoughts and prayers,
    Doug
  • kimmygarland
    kimmygarland Member Posts: 312
    #8
    Douglas08 said:

    Hi Kim,
    My husband has the same diagnosis as yours with mets to several lymph nodes. Stage T4N3MO in Oct09. What is the stage of your husbands ca? Did he have a neck dissection? Where do they think he may have a recurrance? in his throat or in his affected node? Did he have a complete response to Rx? My husband had a complete response in his throat but not in his neck node. But the cat and pet scans show no evidence of recurrance. The pet scan showed some uptake but the path report stated it was due to post rx changes. The cat showed no enlarged lymph nodes. My husband did not have a pet before he started RX only after Rx. When did your husband have his last Pet/Cat Scan?
    Try not to panic. It sounds as though you are in good hands. I will be praying for you every day that all the test come back neg.It's far better to have people be overly cautious than to miss something. Your husband sounds like mine. Very brave and stoic--more concerned about you and his family than himself.No matter what happens you will deal with it. Just keep picturing the reports coming back neg!!!
    Please keep us all posted.
    With positive thoughts and prayers,
    Doug

    Doug
    Thanks for the reply. His original diagnosis last year was T3N2M0, I think. Of course, we don't know the stage yet at this point if it is back. He didn't have a neck dissection - chemo and rads only. Medical Oncologist pronounced him in remission after 3 mo's pet scan, so I guess they thought treatment worked. They are calling this a recurrence - not a continuation of Round 1. Last pet scan was last week, and we went back to doctor yesterday and got this lovely news. Recurrence appears to be in the throat (doc could see something on examination, in addition to the pet scan being hot), but he also has one lympnode that has continually shown up hot on both pet scans he's had since treatment, but very small. The node showed a small amount of growth this time on pet scan, but still very small. They have thought all along it was from radiation, but now are thinking differently I guess.

    We are in good hands, and we are thankful this is treatable. But it's all so scary. My mind goes off in a hundred "what if" directions and I need to stop it. Trying to be positive and keep my mind occupied on other things. Will be a long 3 or 4 weeks I fear.
  • santa6
    santa6 Member Posts: 29
    #9
    More Rads?
    I am surprised to read that several of you had or are having second rounds. I am 9 months out of treatment for HPV SCC neck cancer with primary unknown. Had neck dissection prior and was on PEG for about 7 months. Doing very well but have a sore on tongue called leukoplakia. ENT/Oncologist/surgeon felt it best to remove. Had surgery two weeks ago and really no improvement. Results of tissue samples are mild displasia. He said it was great that we ruled out cancer and that most likely it is a result of the radiation damage. He felt we removed all of it during surgery and now we just need to keep an eye on it. He thought this was all good news and I left feeling worse. The pain is the same or worse and he said it may not heal.

    I already have bouts where I worry about recurrence of the first cancer and now I have something else to "keep an eye on". There's no closure with this disease - well, there's one form of closure but I'm trying to avoid that!! Worst part is what all this is doing to the kids, even though we try to shield them from most of the news. I really want them to be able to relax and focus on school.

    Anyway. during the follow up today I specifically asked if this were to go malignant, or if the first cancer were to recurr, am I able to undergo chemo/rad again. He said flat out No! Surgery only.

    Any ideas why that would be?
  • kimmygarland
    kimmygarland Member Posts: 312
    #10
    santa6 said:

    More Rads?
    I am surprised to read that several of you had or are having second rounds. I am 9 months out of treatment for HPV SCC neck cancer with primary unknown. Had neck dissection prior and was on PEG for about 7 months. Doing very well but have a sore on tongue called leukoplakia. ENT/Oncologist/surgeon felt it best to remove. Had surgery two weeks ago and really no improvement. Results of tissue samples are mild displasia. He said it was great that we ruled out cancer and that most likely it is a result of the radiation damage. He felt we removed all of it during surgery and now we just need to keep an eye on it. He thought this was all good news and I left feeling worse. The pain is the same or worse and he said it may not heal.

    I already have bouts where I worry about recurrence of the first cancer and now I have something else to "keep an eye on". There's no closure with this disease - well, there's one form of closure but I'm trying to avoid that!! Worst part is what all this is doing to the kids, even though we try to shield them from most of the news. I really want them to be able to relax and focus on school.

    Anyway. during the follow up today I specifically asked if this were to go malignant, or if the first cancer were to recurr, am I able to undergo chemo/rad again. He said flat out No! Surgery only.

    Any ideas why that would be?

    Santa 6...
    It appears to be dependent on the protocol of the program, and maybe how much radiation was given the first time?? I really don't know I guess. Our doc said they "consider" doing radiation a second time if more than six months has passed since original treatment/radiation. My husband has been 8 months.

    They may end up not wanting to radiate him again, who knows... may go surgery and chemo only, he was giving us all the options I suppose.

    I have calmed down some, and we are trying to relax and let the days pass without driving ourselves insane.

    And you are right - it's horrible watching the fear in your kids eyes, and affecting them so much. Our son is graduating from college next weekend and it's hard to be all celebratory for it - but we are going to do it - he has worked so hard and deserves the celebration.

    I think I agree with you that there doesn't seem to be closure. Even when we weren't looking at reoccurence we were dealing with radiation side affects, kidney concerns from chemo, getting blood levels back to normal, etc.

    On the other hand, we have so much to be thankful for and at this point he is treatable and still could be put into remission, whatever treatment they decide.

    Hang in there, I hope you can find some peace in dealing with this monster and the side affects from the treatment.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    kimmygarland said:

    Santa 6...
    It appears to be dependent on the protocol of the program, and maybe how much radiation was given the first time?? I really don't know I guess. Our doc said they "consider" doing radiation a second time if more than six months has passed since original treatment/radiation. My husband has been 8 months.

    They may end up not wanting to radiate him again, who knows... may go surgery and chemo only, he was giving us all the options I suppose.

    I have calmed down some, and we are trying to relax and let the days pass without driving ourselves insane.

    And you are right - it's horrible watching the fear in your kids eyes, and affecting them so much. Our son is graduating from college next weekend and it's hard to be all celebratory for it - but we are going to do it - he has worked so hard and deserves the celebration.

    I think I agree with you that there doesn't seem to be closure. Even when we weren't looking at reoccurence we were dealing with radiation side affects, kidney concerns from chemo, getting blood levels back to normal, etc.

    On the other hand, we have so much to be thankful for and at this point he is treatable and still could be put into remission, whatever treatment they decide.

    Hang in there, I hope you can find some peace in dealing with this monster and the side affects from the treatment.

    Wishing For the Best
    Hoping and wishing for the best when you find out a little more.

    You and your hubby are in my prayers.

    HONDO is one of those that have been through multiple doses of treatment and radiation if I remember correctly.

    Best,
    John
  • kimmygarland
    kimmygarland Member Posts: 312
    #12
    Skiffin16 said:

    Wishing For the Best
    Hoping and wishing for the best when you find out a little more.

    You and your hubby are in my prayers.

    HONDO is one of those that have been through multiple doses of treatment and radiation if I remember correctly.

    Best,
    John

    Thanks John
    Appreciate the encouragement. This hurry up and wait is so annoying. He had MRI yesterday and biopsy is scheduled for 8/18. He had a regularly scheduled appt with his Oncologist today, and he thinks surgery followed by chemo and a bit of radiation is probably the way to go. All docs will meet after biopsy results are in and make a decision.

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