Cancer recurrence

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littlemisskitty
littlemisskitty Member Posts: 35
edited June 2015 in Head and Neck Cancer #1

My mom has cancer again. About 9 months ago, she was diagnosed with mouth cancer. She had been complaining for years about a rough, very painful red spot on her gums. Finally it grew white spots and she was diagnosed with Cancer. She had surgery and they removed half of her upper jaw, gum, nasal cavity and part of her palette. She also had her right lymph nodes removed. Thankfully they all came back negative. They did reconstructive surgery on the palette, and she was able to have a mouth piece made to make her appear as though she has teeth on that side but cannot chew on it due to the lack of bone there. She had just gotten to the point of her new normal and we were handling things pretty well. She had lost 50 pounds with the first surgery but was a perfect weight for her size so she wasn't too upset by that. She was finally able to eat taking almost three times as long as us but she was starting to be able to chew a little here and there on the opposite side of her mouth. Her mouth was feeling so much better and the pain was minimal. She was able to lift slightly on the right side. Things were looking up.

Here we are 9 months after her last surgery and she found a swollen lymph node. She went to her doctor who said she was probably worried for nothing. She went to a second doctor (second opinions are really important guys) and he performed a CT scan which came back questionable. So he ordered a full body pet scan and biospys. It came back positive for cancer so now on the left side of her neck she had cancer. This sent us into a whirl wind of emotions. She had surgery within 2 weeks and is now reoovering from the tumor plus the lymph nodes being removed from the left side now. She was still trying to recover from her missing right and now she is dealing with her missing left. The doctor originally told us possibly radiation but now he is saying radiation and chemo. This has us all scared. She has pain in the back of her head still due to the fact that during the surgery, the cancer was wrapped around a nerve and he had to sever the nerve and reattached it in the back of her head making it too painful to even lay on it. She has neck stiffness, partial face paralysis on her left side which they claim might go away. She is barely eating an having a hard time eating. She's basically on a liquid or at least a soft diet. They did biospys in her mouth and they are so sore she cannot possibly chew even if she wanted to. She also is fighting an infection in her gums from the last surgery that apparently wasn't closed up properly and is not being given antibiotics for it due to her allergies (no one wants to take the time to determine what she can take since she's allergic to two types). Now her doctor as he won't return her calls and the other second opinion doctor won't talk to us until we get the biospy results.

She is struggling and doesn't know how she will make it through radiation and chemo with all these side effects already. Did anyone else go through surgery then 4 weeks later go through radiation? How was it? We are almost a week and half out already and she is having more side effects from the surgery than ever. We are looking for encouragement I guess because she has no one to talk to about this stuff as no doctors will return her calls and I have no idea anything about this. I just want her to feel better and get healthy and honestly I"m scared for her sake of the side effects and how she can get through the treatments being recommended. Any suggestions would be greatly appreciated. 

 

Thanks.

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  • hwt
    hwt Member Posts: 2,328 Member
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    Your Mom

    Sorry to hear about your mom. I had my left mandible removed 01/2011. I was in the hospital 2 weeks but no real surgery complications. Lymph nodes were positive. It was about 6 weeks later that I had chemo and radiation. It was difficult, I won't lie, however, we are each different. My worst side effect was sores on my lips but none in my mouth. Some have mucus issues but i did not. Midway thru tx was the hardest for me but i slept 20 out of every 24 hours. I mean soundly, not tossing and turning.  I did have a feeding tube but continued to eat what little I could by mouth too. My chemo was Cisplatin. The radiation tx are only about 10-15 minutes a session and are not painful. Nutrition and hydration are key to the easiest journey.  I was happy that I had my g tube in place before I needed it. And, I think most everyone here will agree that a port, or I had a Hohn catheter, make tx easier as well.  Encourage your Mom to gain as much weight as she can before starting the rads/chemo.

  • wmc
    wmc Member Posts: 1,804
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    Welcome to the H&N Group

    Welcome to the group, and i'm trully sory to hear all that your mother had and is going through. I only had surgery and not chemo and radiation. Many on here have had both and it is very common to have chemo and radiation to treat this disease. I had a tumor just above my vocal cords and my lungs are bad so the only way they could treat mine was to remove my larynx and 86 lymph glands, so I now breath through my neck, but the cancer is gone.

    If she made it through that first one as well as she did, she is much stronger then she thinks. Let her know, just take one day at a time, and on the really bad one's, go houre by houre and keep saying. I can do this. Never give up. It can and will get better. She is going down a very rough road with this Tx and it will be hard. She will get through it and the recovery is slow. Right after Tx she will be what is called "still cooking" which means the chemo and radiation is still working. This goes on for a few months, then she will start to get better every day. Get some weight on now and keep drinking lots of water and swallowing. Never give up. Will add you both to my prayer list. You will be in my thoughts and prayers.

    Bill

  • littlemisskitty
    littlemisskitty Member Posts: 35
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    wmc said:

    Welcome to the H&N Group

    Welcome to the group, and i'm trully sory to hear all that your mother had and is going through. I only had surgery and not chemo and radiation. Many on here have had both and it is very common to have chemo and radiation to treat this disease. I had a tumor just above my vocal cords and my lungs are bad so the only way they could treat mine was to remove my larynx and 86 lymph glands, so I now breath through my neck, but the cancer is gone.

    If she made it through that first one as well as she did, she is much stronger then she thinks. Let her know, just take one day at a time, and on the really bad one's, go houre by houre and keep saying. I can do this. Never give up. It can and will get better. She is going down a very rough road with this Tx and it will be hard. She will get through it and the recovery is slow. Right after Tx she will be what is called "still cooking" which means the chemo and radiation is still working. This goes on for a few months, then she will start to get better every day. Get some weight on now and keep drinking lots of water and swallowing. Never give up. Will add you both to my prayer list. You will be in my thoughts and prayers.

    Bill

    Thank you

    Thank you for your kind words and for the prayers. We heard from the doctor today. They removed 40 lymph nodes. The pathology report came back as the one lymph node as confirmed already was cancerous but the other 40 came back noncancerous. The tumor he removed as indeed cancerous. They cut part of a nerve in the neck to get all the cancer and he thinks it was all gotten but still wants to continue on with Radiation and chemo as a precaution. I was ok with chemo and radiation as a required step but now it's as a precaution. I understand we need to trust the doctor who knows best but precaution just sounds yucky to me compared to the terrible side effects people live with. She seems ok with it being done on her neck but is iffy about it being done on her mouth. They did three biopsys of her mouth to determine if it had come back after the 9 months past her surgery. All came back negative thank God but they still are talking about doing her mouth anyway. We meet with her doctor on wednesday and are planning to get a second opinion like we did last time to determine what a second doctor thinks is necessary. I just want to make sure the best decision is being made or if there is another option that is just as good. I do appreciate your support and look forward to getting to know people who are dealing with this terrible disease like my mom is. 

  • joannaw81
    joannaw81 Member Posts: 185 Member
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    Hello

    Just take it one day at a time. My mom was originally diagnosed in Nov of 2010. Within first 2 years she had surgery on her left tonsil with left neck disection, then radiation, then tongue surgery, thean right neck disection, then more surgery to her tongue and countless biopsies. It happend to my mom that there was a spread to the other side of her neck in one of her lymph nodes and doctors did not know where it came from. Sometimes the cancer can stay inactive for a quite sometime and later show up.

    My mom has been cancer free to 3 years and 4 months, thank God, it is a miracle. I'm not going to say that I am not afraid that it will come back again however if you think about it too much it will take over your life. Positive thinking is very important. She can do it, just be there for her and promise her that she will get better.

    You have my prayers.

  • hwt
    hwt Member Posts: 2,328 Member
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    joannaw81 said:

    Hello

    Just take it one day at a time. My mom was originally diagnosed in Nov of 2010. Within first 2 years she had surgery on her left tonsil with left neck disection, then radiation, then tongue surgery, thean right neck disection, then more surgery to her tongue and countless biopsies. It happend to my mom that there was a spread to the other side of her neck in one of her lymph nodes and doctors did not know where it came from. Sometimes the cancer can stay inactive for a quite sometime and later show up.

    My mom has been cancer free to 3 years and 4 months, thank God, it is a miracle. I'm not going to say that I am not afraid that it will come back again however if you think about it too much it will take over your life. Positive thinking is very important. She can do it, just be there for her and promise her that she will get better.

    You have my prayers.

    Age

    Since it is now considered a precaution, the decision becomes more difficult. You'll want to consider your Mom's age as well as quality of life. Rads w/o chemo or chemo w/o rads may also be an option.  My Mother was in her eighties when dx with stomach cancer and I would not even entertain the idea of radiation for her. She did have successful surgery for the cancer. Perhaps the ONC can give you more insight into how much the chances of recurrance are reduced with the precautionary measure.  It's a rough road so you want to satisfy any questions you might have upfront.  Best to write them down and take to the appt. with you.  How does your Mom feel about the prospect of chemo and rads?  

  • littlemisskitty
    littlemisskitty Member Posts: 35
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    hwt said:

    Age

    Since it is now considered a precaution, the decision becomes more difficult. You'll want to consider your Mom's age as well as quality of life. Rads w/o chemo or chemo w/o rads may also be an option.  My Mother was in her eighties when dx with stomach cancer and I would not even entertain the idea of radiation for her. She did have successful surgery for the cancer. Perhaps the ONC can give you more insight into how much the chances of recurrance are reduced with the precautionary measure.  It's a rough road so you want to satisfy any questions you might have upfront.  Best to write them down and take to the appt. with you.  How does your Mom feel about the prospect of chemo and rads?  

    Mom's feelings

    At first before we got the biospy report stating it hadn't spread, she assumed what the doctor said was true, that it was spreading and it needed treatment immediately and chemo and radiation was the way to go before it spread throughout her body. Now that we have the report and it lists the only lymph node affected was the one tested and that even though it grew, it was removed surgically, she's rethinking it. We are still going forward with plans to meet with the doctors, we have prepped tons of soft food for the months ahead. We even got her a few head scarves but she honestly doesn't really know the side effects. I have mentioned a few to her basically so that we can prepare things ahead of time but I don't think she realizes the full extent of what is coming. She is meeting with her cancer doctor tomorrow as well as the chemo doctor at Yale where she has chosen to do the surgeries so far. It's an hour from the house which has me concerned because Chemo makes a person sick, real sick and an hour drive can feel much longer when you are stopping for a sick person. (My friend told me this with her husband. He was driving to NYC though for his treatments since his was a terminal cancer so he had a 3 year drive not an hour). 

     

    She seems worried but without knowing what her quality of life might be afterwards I think she's just going along with it. After tomorrow we might know more of the results and the precautions. The only reason I was going to go along with not making her think twice about it, is because both tumors she has had so far has quadtripled in size within a month of being tested. The first tumor in her mouth was in her gum. She had a pet scan and it was 4 cm. Two weeks later they did surgery and it had grown by 400% and was into her sinus cavity making them have to recontruct it along with the palette of her mouth and get an orbirator made for her right side since it was completely removed on the upper jaw. Then this time she went to the doctor a week prior to finding this lump herself. He refused a pet scan even though she requested it stating it had been over 6 months and he had orginally said one would be done. He said she was healthy and not to worry about anything. She really wanted the reassurance because first off she had been promised a scan, plus she told me before she went in, she was feeling so tired almost like she did before when she had cancer. She came home after the appointment feeling confident she was just not getting enough sleep and instead had her lymph node swell up. Then she had a pet scan and again within 2 weeks had the surgery and again it had grown by 200% this time. Does everyone's tumors grow so fast? Is that normal? But that's the only reason I think she is so ok with going through it thinking it will stop this once and for all in its tracks and she won't have to go through this again. 

  • wmc
    wmc Member Posts: 1,804
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    Mom's feelings

    At first before we got the biospy report stating it hadn't spread, she assumed what the doctor said was true, that it was spreading and it needed treatment immediately and chemo and radiation was the way to go before it spread throughout her body. Now that we have the report and it lists the only lymph node affected was the one tested and that even though it grew, it was removed surgically, she's rethinking it. We are still going forward with plans to meet with the doctors, we have prepped tons of soft food for the months ahead. We even got her a few head scarves but she honestly doesn't really know the side effects. I have mentioned a few to her basically so that we can prepare things ahead of time but I don't think she realizes the full extent of what is coming. She is meeting with her cancer doctor tomorrow as well as the chemo doctor at Yale where she has chosen to do the surgeries so far. It's an hour from the house which has me concerned because Chemo makes a person sick, real sick and an hour drive can feel much longer when you are stopping for a sick person. (My friend told me this with her husband. He was driving to NYC though for his treatments since his was a terminal cancer so he had a 3 year drive not an hour). 

     

    She seems worried but without knowing what her quality of life might be afterwards I think she's just going along with it. After tomorrow we might know more of the results and the precautions. The only reason I was going to go along with not making her think twice about it, is because both tumors she has had so far has quadtripled in size within a month of being tested. The first tumor in her mouth was in her gum. She had a pet scan and it was 4 cm. Two weeks later they did surgery and it had grown by 400% and was into her sinus cavity making them have to recontruct it along with the palette of her mouth and get an orbirator made for her right side since it was completely removed on the upper jaw. Then this time she went to the doctor a week prior to finding this lump herself. He refused a pet scan even though she requested it stating it had been over 6 months and he had orginally said one would be done. He said she was healthy and not to worry about anything. She really wanted the reassurance because first off she had been promised a scan, plus she told me before she went in, she was feeling so tired almost like she did before when she had cancer. She came home after the appointment feeling confident she was just not getting enough sleep and instead had her lymph node swell up. Then she had a pet scan and again within 2 weeks had the surgery and again it had grown by 200% this time. Does everyone's tumors grow so fast? Is that normal? But that's the only reason I think she is so ok with going through it thinking it will stop this once and for all in its tracks and she won't have to go through this again. 

    Most SCC does not grow that fast.

    SCC normally will not grow that fast. Mine was 3cm x2.5cm and they think that took at least one year. There is other cancers that do grow fast and very agressive. Thoughts and prayers for you.

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    Mom's feelings

    At first before we got the biospy report stating it hadn't spread, she assumed what the doctor said was true, that it was spreading and it needed treatment immediately and chemo and radiation was the way to go before it spread throughout her body. Now that we have the report and it lists the only lymph node affected was the one tested and that even though it grew, it was removed surgically, she's rethinking it. We are still going forward with plans to meet with the doctors, we have prepped tons of soft food for the months ahead. We even got her a few head scarves but she honestly doesn't really know the side effects. I have mentioned a few to her basically so that we can prepare things ahead of time but I don't think she realizes the full extent of what is coming. She is meeting with her cancer doctor tomorrow as well as the chemo doctor at Yale where she has chosen to do the surgeries so far. It's an hour from the house which has me concerned because Chemo makes a person sick, real sick and an hour drive can feel much longer when you are stopping for a sick person. (My friend told me this with her husband. He was driving to NYC though for his treatments since his was a terminal cancer so he had a 3 year drive not an hour). 

     

    She seems worried but without knowing what her quality of life might be afterwards I think she's just going along with it. After tomorrow we might know more of the results and the precautions. The only reason I was going to go along with not making her think twice about it, is because both tumors she has had so far has quadtripled in size within a month of being tested. The first tumor in her mouth was in her gum. She had a pet scan and it was 4 cm. Two weeks later they did surgery and it had grown by 400% and was into her sinus cavity making them have to recontruct it along with the palette of her mouth and get an orbirator made for her right side since it was completely removed on the upper jaw. Then this time she went to the doctor a week prior to finding this lump herself. He refused a pet scan even though she requested it stating it had been over 6 months and he had orginally said one would be done. He said she was healthy and not to worry about anything. She really wanted the reassurance because first off she had been promised a scan, plus she told me before she went in, she was feeling so tired almost like she did before when she had cancer. She came home after the appointment feeling confident she was just not getting enough sleep and instead had her lymph node swell up. Then she had a pet scan and again within 2 weeks had the surgery and again it had grown by 200% this time. Does everyone's tumors grow so fast? Is that normal? But that's the only reason I think she is so ok with going through it thinking it will stop this once and for all in its tracks and she won't have to go through this again. 

    LMK, i just want to welcome

    LMK, i just want to welcome you and your mom to our family although we understand that nobody would choose to join us.  Also want you to know that i'm praying for your mom and your family.  Anytime you are not feeling good about the doctor, ask questions.  it is your right and you need answers.  unfortunately, there is always a chance of the cancer coming back.  we all face that and secretly worry about it too.  but there is the chance that it will NOT return too.  it's best to think positive, it will NOT come back.

    God bless you,

    dj