very worried

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JoyceNash
JoyceNash Member Posts: 3
in Head and Neck Cancer #1
My son was diagnosed in February of this year with stage 3 nasopharyngeal carcinoma. He went through chemo/radiation and finished his treatments a couple of months ago. We were so hoping that when the treatments were finished, he would start to get his strength back and feel better, but that has not been the case. He is in continuous pain and is still very weak, and just seems to be getting worse instead of better. They did a bone scan on him last week and it showed uptake on his third left rib, so they did another scan, and it showed the same thing. So they did a rib xray, and once again.. same thing was shown. The radiologists' reports on the bone scans and the xray both say "suspicious for osseous metastatic disease", but the dr says that she doesn't believe it is cancer because she says it doesn't make any sense for the cancer to "jump to only one spot". She says that if the cancer jumped to the bone, it would have gone all over the place and not to only one rib. But she is still ordering a biopsy of the rib. So my question to anyone who will answer me, is what do you think? Would the cancer spread only to one rib? Have you ever heard of anything like this happening?

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  • carolinagirl67
    carolinagirl67 Member Posts: 153
    #2
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    Spreading
    What I have experienced with my husband, was that cancer really does whatever it wants to. So just stay in the positive frame of mind and enjoy today. Fatigue and Pain are very common. Your son has been through a lot and it will just take time. It could be anything on the scan. Just refuse to believe that it's cancer. Peace be with you.
  • ratface
    ratface Member Posts: 1,337 Member
    #3
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    carolinagirl67 said:

    Spreading
    What I have experienced with my husband, was that cancer really does whatever it wants to. So just stay in the positive frame of mind and enjoy today. Fatigue and Pain are very common. Your son has been through a lot and it will just take time. It could be anything on the scan. Just refuse to believe that it's cancer. Peace be with you.

    "was that cancer really does whatever it wants to"
    Just can't say it any bettter than that. The fatigue and lack of energy are quite normal for this stage of recovery. Trust that doctor as they know their specialties faily well.
  • Hal61
    Hal61 Member Posts: 655
    #4
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    Fatigue, Dr.
    Hi Joyce, CarolinaGirl put it elegantly. Cancer can do what it want's, but, in my experience on this board, your Doc is expressing his or her experience, and hoping with you. Camcer more often spreads, rather than jumps. The fatigue and weakness lasted nearly 6 months after my radiation and chemo. It's brave of your doc to express their doubt, many will not commit themselves to that degree. Try to remain positive, wait for the biopsy. We're all hoping and praying with you.

    best, Hal
  • NJR
    NJR Member Posts: 82
    #5
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    Spreading
    Hi Joyce,
    As the others have said, Cancer can do whatever it wants. That is a fact. Her surprise could probably be found in the nature of your son's primary source. Two of my Doctors, one a rare Researcher in head and neck cancer took the time to explain to me that Head and Neck cancers tend to spread in a highly predictable pattern and direction, with the bones not being on the list of sites it usually tends to put in an appearance. Both however were very careful to point out that what usually happens is not always the case so this has probably taken her by surprise as much as it did you. Both also pointed out that the only way to know for sure and without a doubt if a suspected node, mass, etc is cancer is for the biopsy to be performed.
    People usually say at this point, "I can't imagine what you are going through." Well, I can imagine as I am going through the very same thing in that I have finished my Chemoradiation and did so with flying colors and high hopes only to read the Radiology Report all the way down to the line that said, "New Node found.....osseous metastatic disease cannot be ruled out"
    I've been on pins and needles for three weeks now and appeared at my biopsy appointment this morning only to find after I was prepped for surgery complete with IV that one of their machines broke down so I am delayed until they call me. Until that time though, I will continue to believe with all my heart that what they found was a bug I inhaled on the way into my last appointment. The only way to deal with this hideous disease is one twist at a time. Expect the best but always be prepared for the worst. (Just in case the news is bad enough to make a grown man cry)
    My best to you and your son.

    Nick
  • Hal61
    Hal61 Member Posts: 655
    #6
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    NJR said:

    Spreading
    Hi Joyce,
    As the others have said, Cancer can do whatever it wants. That is a fact. Her surprise could probably be found in the nature of your son's primary source. Two of my Doctors, one a rare Researcher in head and neck cancer took the time to explain to me that Head and Neck cancers tend to spread in a highly predictable pattern and direction, with the bones not being on the list of sites it usually tends to put in an appearance. Both however were very careful to point out that what usually happens is not always the case so this has probably taken her by surprise as much as it did you. Both also pointed out that the only way to know for sure and without a doubt if a suspected node, mass, etc is cancer is for the biopsy to be performed.
    People usually say at this point, "I can't imagine what you are going through." Well, I can imagine as I am going through the very same thing in that I have finished my Chemoradiation and did so with flying colors and high hopes only to read the Radiology Report all the way down to the line that said, "New Node found.....osseous metastatic disease cannot be ruled out"
    I've been on pins and needles for three weeks now and appeared at my biopsy appointment this morning only to find after I was prepped for surgery complete with IV that one of their machines broke down so I am delayed until they call me. Until that time though, I will continue to believe with all my heart that what they found was a bug I inhaled on the way into my last appointment. The only way to deal with this hideous disease is one twist at a time. Expect the best but always be prepared for the worst. (Just in case the news is bad enough to make a grown man cry)
    My best to you and your son.

    Nick

    Fingers crossed
    Thanks for your comments Nick, hold on to that "humble" courage that hopes for the best. I'm keeping my fingers crossed for you.

    Best, Hal
  • KTeacher
    KTeacher Member Posts: 1,103
    #7
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    Welcome
    Joyce, welcome to our group. You will find some very caring people here. So sorry for what you are having to go through. I just finished radiation for mets. After my surgery in July I told my sister that I was glad that mom was gone because this would have killed her. I have been the one to have all of the strange ailments and mom always worried. It sounds like the doctors are willing to continue testing so there should be confirmation soon. It does take more time than we expect to recover from this beast. With love and support from you I know that your son is getting the best care. This is a time in our life that we have no control over, try to rest the find something positive in each day.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
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    praying
    So sorry to hear about your son. I am praying for a good outcome. My heart aches for you. Keep strong and positive,

    Debbie
  • robinleigh
    robinleigh Member Posts: 297
    #9
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    Bone metastasis
    My best advice is to wait for the biopsy report because it is the conclusive report for a metastasis. My understanding is that the most common ways to travel after the lymph nodes, is to the lungs, brain, and lastly to bone.

    My husband was one of the rarer cases that had metastasis to the bone and the doctors were surprised but said it does happen. If you receive the biopsy report and it is assc net to bone, I am more than happy to share with you how our journey has proceeded. Just pm me and I will respond by pm or exchange email addresses or phone numbers.

    I did not have luck on this site finding others with bone mets but kept searching for others to talk to.

    Hoping you have a negative report for any mets at all!

    Robinleigh
  • JoyceNash
    JoyceNash Member Posts: 3
    #10
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    robinleigh said:

    Bone metastasis
    My best advice is to wait for the biopsy report because it is the conclusive report for a metastasis. My understanding is that the most common ways to travel after the lymph nodes, is to the lungs, brain, and lastly to bone.

    My husband was one of the rarer cases that had metastasis to the bone and the doctors were surprised but said it does happen. If you receive the biopsy report and it is assc net to bone, I am more than happy to share with you how our journey has proceeded. Just pm me and I will respond by pm or exchange email addresses or phone numbers.

    I did not have luck on this site finding others with bone mets but kept searching for others to talk to.

    Hoping you have a negative report for any mets at all!

    Robinleigh

    Thank you so much, Robin. I
    Thank you so much, Robin. I appreciate your kindness and yes, I would love to have someone to talk to that has 'been there' already. We feel so alone in all of this.
  • JoyceNash
    JoyceNash Member Posts: 3
    #11
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    jim and i said:

    praying
    So sorry to hear about your son. I am praying for a good outcome. My heart aches for you. Keep strong and positive,

    Debbie

    Thank you
    I want to say thank you and God bless you to ALL of you who have responded to my post. We feel so alone in all of this and I have tried and tried to find stuff on the internet that would explain things better. I appreciate each and every one of you that cared enough to respond and I thank you for your encouraging words.
  • robinleigh
    robinleigh Member Posts: 297
    #12
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    JoyceNash said:

    Thank you so much, Robin. I
    Thank you so much, Robin. I appreciate your kindness and yes, I would love to have someone to talk to that has 'been there' already. We feel so alone in all of this.

    Biopsy report
    When you get your report, please let me know the results. My husband started his treatment in February, as well and got his first pet and biopsy that confirmed mets to the pelvic bone and femur in June. We began treatment for recurrence in June so I am happy to share this journey with you.

    Still hoping your son's situation is not a metastasis

    Robinleigh
    Kromishome@knology.net
    (334) 546-0200
  • robinleigh
    robinleigh Member Posts: 297
    #13
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    JoyceNash said:

    Thank you so much, Robin. I
    Thank you so much, Robin. I appreciate your kindness and yes, I would love to have someone to talk to that has 'been there' already. We feel so alone in all of this.

    Biopsy report
    When you get your report, please let me know the results. My husband started his treatment in February, as well and got his first pet and biopsy that confirmed mets to the pelvic bone and femur in June. We began treatment for recurrence in June so I am happy to share this journey with you.

    Still hoping your son's situation is not a metastasis

    Robinleigh
    Kromishome@knology.net
    (334) 546-0200
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
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    Biopsy
    Hi Joyce, welcome to the forum...I hope you find someone on here that can offer you some personal experience.

    I believe that the biopsy is the best way to know for certain just what the situation is. I can't offer much help, and hopefully won't have to ever experience what you and your son are going through. I cannot even begin to imagine.

    I can offer you my thoughts and prayers though.

    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    Options
    Hi Joyce

    I too am NPC like your son and I had my cancer come back a few times on me but never to the bone. I agree with your doctor if the cancer did come back it will not be to just on rib. The biopsy is the best way to forward to see what is really there, but as in my case I had a lot of rib problems and pain after my treatment, but nothing was cancer. Also have your Son checked for Thyroid problems and low vitamin D level also make sure he is keeping hydrated by dirking a lot of liquids up to at least 2 ½ quarts a day.

    PS: Welcome to the familty here on CSN


    ╠╣ONDO
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #16
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    Hondo said:

    Hi Joyce

    I too am NPC like your son and I had my cancer come back a few times on me but never to the bone. I agree with your doctor if the cancer did come back it will not be to just on rib. The biopsy is the best way to forward to see what is really there, but as in my case I had a lot of rib problems and pain after my treatment, but nothing was cancer. Also have your Son checked for Thyroid problems and low vitamin D level also make sure he is keeping hydrated by dirking a lot of liquids up to at least 2 ½ quarts a day.

    PS: Welcome to the familty here on CSN


    ╠╣ONDO

    Joyce
    Like Hondo, I'm NPC with treatment having finished 4/09. Never did find my primary, but there's no hint of it having spread to any of my bones. Hope and Pray for the best. And the bottom-line best way to know if it really is C, or another mass, is the Biopsy. Scans can only tell of something that is abnormal/doesn't belong somewhere- the competent Biopsy and Lab analysis is the only way one knows for certain.

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
    Options
    carolinagirl67 said:

    Spreading
    What I have experienced with my husband, was that cancer really does whatever it wants to. So just stay in the positive frame of mind and enjoy today. Fatigue and Pain are very common. Your son has been through a lot and it will just take time. It could be anything on the scan. Just refuse to believe that it's cancer. Peace be with you.

    Hi Donna

    Was thinking about you a few weeks back wondering how you were doing, glad to see your post today my friend.

    God bless
    Hondo
  • adventurebob
    adventurebob Member Posts: 691
    #18
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    NPC mets
    Hi Joyce,
    I was diagnosed with NPC with bone mets last May and finished treatment in December. First PET in August showed a met to my pelvis. Finished treatment for that a few weeks back. In my case the cancer did just show in one spot. My belief is that it was always there and just grew between PET scans to a size that was detectable. Could be the same for your son I suppose. Cancer doesn't seem to follow a set of rules that the docs fully understand. Sorry for the journey you and your son are on. At some point though it is possible for all the cancer in your son's body to be gone even with the bone mets. If the scan reads that it's suspicious for mets but the doc disagrees it might be time to get second and third opinions. An untreated met will grow and spread. The faster it can be radiated the less chance of spreading. Keep fighting. The battle can be won.

    AB
  • buzz99
    buzz99 Member Posts: 404
    #19
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    Will the worries ever end?
    It does seem unlikely that the cancer spread to the bone but I can understand how worried you are. We are still in the dark as to whether Buzz's base of tongue cancer has spread to his neck. While you are waiting for the results, it is natural to start thinking those "dark thoughts" and it is difficult to stay positive. We have been on just such an emotional roller coster. The waiting is so hard. I hope your son gets the biopsy soon and that it is negative for cancer. We are all here for you. Karen

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