Remission over ☹️

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Hello everyone, 

I found out yesterday that my sister (40urs old) is being evaluated for a relapse after being in remission for about 15 years. What a blow! 

A little about the family. 

Cancer has had a strong presence in my life since I was a teen. My brother was diagnosed with Ewing carcinoma at 16 and he unfortunately passed away 10 months after diagnosis. Just three years later my sister was diagnosed with stage IV nasopharengeal cancer at 23. She did traditional radiation and chemotherapy and was cleared. After battling the life long side effects of the treatment she birthed two beautiful daughters. Recently she has had some issues with fully extending her mandible. She went in and the doctors have warned her that she may no longer be in remission. 

Can anyone here help me with some of the questions below? 

Where should she start looking for and comparing conventional and holistic treatments. The side effects were pretty bad after rh last treatment and she would like to explore more options. I have looked online and there is so much information and misinformation out there. 

Does anyone have specific questions I should ask when we go see the treatment team? I know some times we miss things when we are emotional. 

What resources should I start looking into now? I am not sure about her insurance coverage but is there anything anyone can think of that I can look into proactively? 

Thanks in advance for any feedback. 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,318 Member
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    I Had a Second Cancer

     

    Remember it’s not cancer till they say it’s cancer. You say the doctors warned she may not be in remission-What does that mean. They should be trying to isolate her problems and if they think there is cancer in an area take a biopsy and verify it one way or the other. I had throat cancer in 2013 and just last summer after almost 5 years I got a spot on my tongue that was found to be cancer. My ENT biopsied it to verify it was cancer and it was. Then he had me get a PET scan which is a full body scan after they inject you with dye and they check your whole body to make sure there is no cancer anywhere else or not. Then he knew he was dealing with cancer in just this one area and he operated and removed the cancer till he had clear margins. I would assume they would do the same thing for your sister verify yes or no and then they will know what they are dealing with. Sounds like no tests were performed yet-she may not have any cancer at all just a problem with her jaw-if you have details please post them such as tests, x rays, CT scans, blood tests, etc. Take Care-God Bless-and feel free to correct me if I missed something or misinterpedyour posting.

  • caregiver wife
    caregiver wife Member Posts: 234
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    IF it is a second cancer,

    Many on this group have survived a second and third cancer.  The treatments today are nothing like 15 years ago.  If it is cancer, keep us posted.  Many are here to help you.

    Good luck to both of you,

    Crystal

  • Deemaries
    Deemaries Member Posts: 3
    edited May 2019 #4
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    wbcgaruss said:

    I Had a Second Cancer

     

    Remember it’s not cancer till they say it’s cancer. You say the doctors warned she may not be in remission-What does that mean. They should be trying to isolate her problems and if they think there is cancer in an area take a biopsy and verify it one way or the other. I had throat cancer in 2013 and just last summer after almost 5 years I got a spot on my tongue that was found to be cancer. My ENT biopsied it to verify it was cancer and it was. Then he had me get a PET scan which is a full body scan after they inject you with dye and they check your whole body to make sure there is no cancer anywhere else or not. Then he knew he was dealing with cancer in just this one area and he operated and removed the cancer till he had clear margins. I would assume they would do the same thing for your sister verify yes or no and then they will know what they are dealing with. Sounds like no tests were performed yet-she may not have any cancer at all just a problem with her jaw-if you have details please post them such as tests, x rays, CT scans, blood tests, etc. Take Care-God Bless-and feel free to correct me if I missed something or misinterpedyour posting.

    Your story sounds exactly

    Your story sounds exactly like my husbands at the moment. He has been in remission for 2 years for base of tongue cancer, 36 rads 2 chemos. He has a sore on his tongue left side front that is not going away.  You said that you had surgery for it. Is that all they will do at this point if it is cancer? I think I remember the oncologist telling us he can't have any more radiation that he was at his limit. So is that the procedure the second time around. Just surgery and then watch and wait?

  • wbcgaruss
    wbcgaruss Member Posts: 2,318 Member
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    Deemaries said:

    Your story sounds exactly

    Your story sounds exactly like my husbands at the moment. He has been in remission for 2 years for base of tongue cancer, 36 rads 2 chemos. He has a sore on his tongue left side front that is not going away.  You said that you had surgery for it. Is that all they will do at this point if it is cancer? I think I remember the oncologist telling us he can't have any more radiation that he was at his limit. So is that the procedure the second time around. Just surgery and then watch and wait?

    Deemaries

    I had throat cancer in 2012. Just last June got a small sore spot on my tongue-left front. A biopsy was positive for cancer. Caught it early. My ENT operated and I lost just a little of my tongue not much. He removed tissue until he had gotten clear margins. Don't wait on any of this kind of stuff especially with our cancer history. Get him to an ENT for a biopsy and if it is cancer get it removed the sooner the better and smaller it will be and you don't know for sure it's cancer till it is biopsied-remember it ain't cancer till they say it's cancer. Don't wait.

  • Logan51
    Logan51 Member Posts: 465 Member
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    AmberSmith122

    Saw a You Tube multi-segment seminar from over in Asia years ago. Had top C specialists there, with a lady from Farber the US rep. One of the few conclusions all agreed on was NPC should be dealt with by concurrent Rads and Chemo. Mine was "unknown Primary" in the lymphs, and the regiment of tx was so harsh I was put on Morphine the start of week #2 because of tongue scalding, etc. That was a little over 10 years ago, and am still on two meds to deal with neck spasms/the dental bills have cost me over $15-K/and now aspiration is an issue. And...

    To hear about your Sister's NPC coming back after 15 years is not welcome news, as I'm sure it isn't for her. Probably the main thing is to have a very detailed discussion about options if Rads are involved again, and the damage a 2nd round will have. So many years out from the 1st bout, though, the new technologies/txs should be an advantage. And, of course, the source has to be biopsied and come back positive for C before tx is even considered.

    My aspiration did not really show as a problem until around 8-9 years post-tx. Possible her problems are also from her tx 15 years ago?

  • Deemaries
    Deemaries Member Posts: 3
    edited May 2019 #7
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    wbcgaruss said:

    Deemaries

    I had throat cancer in 2012. Just last June got a small sore spot on my tongue-left front. A biopsy was positive for cancer. Caught it early. My ENT operated and I lost just a little of my tongue not much. He removed tissue until he had gotten clear margins. Don't wait on any of this kind of stuff especially with our cancer history. Get him to an ENT for a biopsy and if it is cancer get it removed the sooner the better and smaller it will be and you don't know for sure it's cancer till it is biopsied-remember it ain't cancer till they say it's cancer. Don't wait.

    Thank You for your reply. It

    Thank You for your reply. It is nearly impossible to get him to call the dr. He says he will bring it up at his next oncologist appt at the end of July. If it is cancer, what are his options, surgery only to remove it? He had all the rads and 2 of 3 chemos. He couldn't finish the 3rd chemo because of his kidneys, but since then his kidneys have recovered. They can't do radiation again , can they? I think the dr mentioned they can't do radiation again. 

     I'll keep you in my prayers. Thank You again.

  • wbcgaruss
    wbcgaruss Member Posts: 2,318 Member
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    Deemaries said:

    Thank You for your reply. It

    Thank You for your reply. It is nearly impossible to get him to call the dr. He says he will bring it up at his next oncologist appt at the end of July. If it is cancer, what are his options, surgery only to remove it? He had all the rads and 2 of 3 chemos. He couldn't finish the 3rd chemo because of his kidneys, but since then his kidneys have recovered. They can't do radiation again , can they? I think the dr mentioned they can't do radiation again. 

     I'll keep you in my prayers. Thank You again.

    Deemaries

    First, you have to determine if it is cancer or not by biopsy or any other way they might use but Biopsy a tissue sample is usually it. If it is cancer your providers, cancer team can come up with a plan to deal with it. if small or sometimes bigger removing it till they get clear margins is usually good with no follow-up treatment but it depends on each persons case. Since his kidneys recovered they may be able to do chemo and watch him closely. I have heard of people on here getting radiation over again but I don't think the docs like to do it if they can avoid it but it is done at times. #1 has he been to the docs yet and is it cancer, don't wait to get to the docs and find out. It could just be a lesion or some other growth, a small infection of some sort don't just assume it is cancer. Do you remember the old saying about the word "assume"?