Neuroendocrine Cancer

Marynb
Marynb Member Posts: 1,118
in Rare and Other Cancers #1
Hi. I am just wondeirng if there are others who have been treated for neuroendocrine cancers? I had surgery in 2011 and am wondering about follow up treatment. My NET was in small intestine with spread to lymph glands. I have not had any further treatment or scans and doctors have me on wait and. See approah. Any information would be appreciated. Thsnks.

Comments

  • mr steve
    mr steve Member Posts: 285
    #2
    NET's
    Mary,

    My wife had NET hers had already spread when it was found. Have you had an octretide scan, to look for hot spots and have you looked for ONC's who have dealt with this type cancer before? At first we would have scans every 6 months with this type cancer it is usually slow growing and a few months wont make that much difference. Did the Doc say he got it all? Sorry for more questions thatn answers....

    Steve
  • Marynb
    Marynb Member Posts: 1,118
    #3
    mr steve said:

    NET's
    Mary,

    My wife had NET hers had already spread when it was found. Have you had an octretide scan, to look for hot spots and have you looked for ONC's who have dealt with this type cancer before? At first we would have scans every 6 months with this type cancer it is usually slow growing and a few months wont make that much difference. Did the Doc say he got it all? Sorry for more questions thatn answers....

    Steve

    NET's
    Hi Steve,

    Thanks for responding. I am being treated by doctors who have treated this and I got second opinion with one of the NET experts. The surgeon said he could not tell me that he got it all, as he could not know. Yes, I had octreotride scan for diagnosis. I am told at the hopsital that the protocol has changed and that the risks of scans are now known to be high. So, they will wait for symptoms. The problem with this for me is that i went a long time being misdiagnosed because the symptoms were vague.

    How long ago was your wife diagnosed?

    Thanks a lot for taking the time to respond !

    Mary
  • bowk61
    bowk61 Member Posts: 9
    #4
    Marynb said:

    NET's
    Hi Steve,

    Thanks for responding. I am being treated by doctors who have treated this and I got second opinion with one of the NET experts. The surgeon said he could not tell me that he got it all, as he could not know. Yes, I had octreotride scan for diagnosis. I am told at the hopsital that the protocol has changed and that the risks of scans are now known to be high. So, they will wait for symptoms. The problem with this for me is that i went a long time being misdiagnosed because the symptoms were vague.

    How long ago was your wife diagnosed?

    Thanks a lot for taking the time to respond !

    Mary

    neuroendocrine tumor
    Mary,


    I was diagnosed march 2012 with neuroendocrine tumor on my pancreas. Has spread to my liver(small lisions). Drs believe I have had for 5 to 10 years undetected.First treatments were octreotide. After second ct and octreotide treatments tumor grew slightly. Started a chemo pill called temodar 6 weeks ago. My tumor gives off calcium elevating my calcium level in the 13 range, 10 is normal range. Temodar is taken 7 days then seven days off. This pill has lowered my calcium to the 10 range. Drs believe it is affecting tumor. In 6 to 10 weeks will have another ct scan to see if temodar has affected its growth.


    Stephen
  • Marynb
    Marynb Member Posts: 1,118
    #5
    bowk61 said:

    neuroendocrine tumor
    Mary,


    I was diagnosed march 2012 with neuroendocrine tumor on my pancreas. Has spread to my liver(small lisions). Drs believe I have had for 5 to 10 years undetected.First treatments were octreotide. After second ct and octreotide treatments tumor grew slightly. Started a chemo pill called temodar 6 weeks ago. My tumor gives off calcium elevating my calcium level in the 13 range, 10 is normal range. Temodar is taken 7 days then seven days off. This pill has lowered my calcium to the 10 range. Drs believe it is affecting tumor. In 6 to 10 weeks will have another ct scan to see if temodar has affected its growth.


    Stephen

    Question...
    Hi Stephen. Did you have surgery to remove the tumor on your pancreas? Sorry you are going through this. I hope your treatment is going well. How did you find a doctor to treat this?
  • mr steve
    mr steve Member Posts: 285
    #6
    Marynb said:

    NET's
    Hi Steve,

    Thanks for responding. I am being treated by doctors who have treated this and I got second opinion with one of the NET experts. The surgeon said he could not tell me that he got it all, as he could not know. Yes, I had octreotride scan for diagnosis. I am told at the hopsital that the protocol has changed and that the risks of scans are now known to be high. So, they will wait for symptoms. The problem with this for me is that i went a long time being misdiagnosed because the symptoms were vague.

    How long ago was your wife diagnosed?

    Thanks a lot for taking the time to respond !

    Mary

    Time frame
    Mary,

    She was dx in March of 08, had every treatment from TACE to surgery to chemo. The Onc had no idea how long she had it due to the slow progresson of her type most likey several years. She had no symptoms at all, they found it when they did a xray and saw a shadow in her pancreas. She had a ct scan every 6 months or so, more often than that when she went on trials...

    Steve
  • Marynb
    Marynb Member Posts: 1,118
    #7
    mr steve said:

    Time frame
    Mary,

    She was dx in March of 08, had every treatment from TACE to surgery to chemo. The Onc had no idea how long she had it due to the slow progresson of her type most likey several years. She had no symptoms at all, they found it when they did a xray and saw a shadow in her pancreas. She had a ct scan every 6 months or so, more often than that when she went on trials...

    Steve

    Sorry to ask this
    Thanks for responding, Steve. I have to ask whether she survived? Also, do you mind if I ask where she went for treaments?

    Mary
  • Marynb
    Marynb Member Posts: 1,118
    #8
    mr steve said:

    Time frame
    Mary,

    She was dx in March of 08, had every treatment from TACE to surgery to chemo. The Onc had no idea how long she had it due to the slow progresson of her type most likey several years. She had no symptoms at all, they found it when they did a xray and saw a shadow in her pancreas. She had a ct scan every 6 months or so, more often than that when she went on trials...

    Steve

    Sorry to ask this
    Thanks for responding, Steve. I have to ask whether she survived? Also, do you mind if I ask where she went for treaments?

    Mary
  • mr steve
    mr steve Member Posts: 285
    #9
    Marynb said:

    Sorry to ask this
    Thanks for responding, Steve. I have to ask whether she survived? Also, do you mind if I ask where she went for treaments?

    Mary

    First
    Not every cancer is the same. She made it 4 years post DX. We went to OSU if would like to know who we saw I can send you a email off the boards... We meet people that were doing fine 5-10 years after dx.
  • Marynb
    Marynb Member Posts: 1,118
    #10
    mr steve said:

    First
    Not every cancer is the same. She made it 4 years post DX. We went to OSU if would like to know who we saw I can send you a email off the boards... We meet people that were doing fine 5-10 years after dx.

    Sorry
    Steve, I am sorry for your loss. Thank you for trying to help others. I am aware of the team at OSU. Of course, I am terrified when I hear that this cancer can be so deadly.

    Mary
  • bowk61
    bowk61 Member Posts: 9
    #11
    Marynb said:

    Question...
    Hi Stephen. Did you have surgery to remove the tumor on your pancreas? Sorry you are going through this. I hope your treatment is going well. How did you find a doctor to treat this?

    Mary,


    I didn't have surgery to remove my the tumor on my pancreas. I believe it is due to the size(they said it was approx. 2 inches long) and the fact that it has spread to my liver(I have lisions on my liver which I understand is another word for small tumors). I live just outside of Boston. My PCP is at the Mt Auburn Hosp in Cambridge, MA. The 1st treatments were given by the oncologist at the Mt Auburn. He gave me the name of the Dr who is treating me know. Both Drs agreed that if my 1st treatments didn't work I should go to the Dana Farber in Boston. That is were I am now.
  • Marynb
    Marynb Member Posts: 1,118
    #12
    bowk61 said:

    Mary,


    I didn't have surgery to remove my the tumor on my pancreas. I believe it is due to the size(they said it was approx. 2 inches long) and the fact that it has spread to my liver(I have lisions on my liver which I understand is another word for small tumors). I live just outside of Boston. My PCP is at the Mt Auburn Hosp in Cambridge, MA. The 1st treatments were given by the oncologist at the Mt Auburn. He gave me the name of the Dr who is treating me know. Both Drs agreed that if my 1st treatments didn't work I should go to the Dana Farber in Boston. That is were I am now.

    To bowk61
    Hi Stephen. I am sorry you are going through this. Thanks for responding. I was treated in Boston, too. I hope that your treatments work and that you feel better everyday. Did you have symptoms that led them to the tumors? It is unfortunate that this cancer takes so long to diagnose. In my case, I felt lousey for years and they found the neuroendocrine cancer doing scans for another unrelated cancer that I was being treated for. My docs also think that the tumor had been growing for some time. Keep the faith!

    Hugs.

    Mary
  • bowk61
    bowk61 Member Posts: 9
    #13
    Marynb said:

    To bowk61
    Hi Stephen. I am sorry you are going through this. Thanks for responding. I was treated in Boston, too. I hope that your treatments work and that you feel better everyday. Did you have symptoms that led them to the tumors? It is unfortunate that this cancer takes so long to diagnose. In my case, I felt lousey for years and they found the neuroendocrine cancer doing scans for another unrelated cancer that I was being treated for. My docs also think that the tumor had been growing for some time. Keep the faith!

    Hugs.

    Mary

    ToMarynb
    Mary,

    They believe I have had this tumor for 5 to 10 years. The tumor being on my pancreas caused me to become a diabetic in march of 2010. 1st I was type 2 treated with pills and a change of diet.In Nov 2011 my sugar started to elevate and in Feb 2012 when I went for my 3 month check up I started to have to use insulin to control my diabetes and my calcium level was very high. Dr checked my thyroid glands(they regulate calcium output) they were ok. My Dr knew cancerous tumors can give off calcium. Tumors that give off calcium are usually located in the lungs or breast. Mine was in my pancreas. I, like you felt lousy for years. I thought it was my job. I am a truck driver and worked 3 overnight shifts and 2 afternoon shifts for about 4 years. I thought that was why I felt so tired. Being treated now with a chemo pill(temodar). I am still tired all the time but I am able to still workfull time. But all in all my quality of life, with all the meds I take, is not bad.
  • Marynb
    Marynb Member Posts: 1,118
    #14
    bowk61 said:

    ToMarynb
    Mary,

    They believe I have had this tumor for 5 to 10 years. The tumor being on my pancreas caused me to become a diabetic in march of 2010. 1st I was type 2 treated with pills and a change of diet.In Nov 2011 my sugar started to elevate and in Feb 2012 when I went for my 3 month check up I started to have to use insulin to control my diabetes and my calcium level was very high. Dr checked my thyroid glands(they regulate calcium output) they were ok. My Dr knew cancerous tumors can give off calcium. Tumors that give off calcium are usually located in the lungs or breast. Mine was in my pancreas. I, like you felt lousy for years. I thought it was my job. I am a truck driver and worked 3 overnight shifts and 2 afternoon shifts for about 4 years. I thought that was why I felt so tired. Being treated now with a chemo pill(temodar). I am still tired all the time but I am able to still workfull time. But all in all my quality of life, with all the meds I take, is not bad.

    Bowk61
    So glad that you seem to be doing well. Do you mind if I ask who you see at Dana Farber? Is it Dr. Kulke? Also, how often do you have scans?
  • bowk61
    bowk61 Member Posts: 9
    #15
    Marynb said:

    Bowk61
    So glad that you seem to be doing well. Do you mind if I ask who you see at Dana Farber? Is it Dr. Kulke? Also, how often do you have scans?

    Mary,
    He is my Dr. I had a
    Mary,

    He is my Dr. I had a scan about 2 months ago and I will probably have another in a month or 2.
  • Marynb
    Marynb Member Posts: 1,118
    #16
    bowk61 said:

    Mary,
    He is my Dr. I had a
    Mary,

    He is my Dr. I had a scan about 2 months ago and I will probably have another in a month or 2.

    To bowk61
    Stephen,

    I went to him for second opinion. You are in good hands, I really liked him and if my cancer spreads, I will go back to him again. He is he one to see. I am at MGH with a very good team. We are lucky to be close to Boston. Stay well.
  • redlensman
    redlensman Member Posts: 3
    #17
    Neuroendocrine Cancer
    Hi! I am new here but I think that I am one of the longest surviving survivors in this part of the board. Pardon my alliteration. I love it so.

    June of 2001 I was diagnosed with lung cancer. July of 2007 my right lung was removed.

    October of 2008 my oncologist tells me about my prostate and liver cancer and that he knew none of his other patients that had survived nearly as long as I had.

    October of 2010 a biopsy was done on a mass in my right chest wall whic tested clear.

    April of 2012 my oncologist wanted to do another biopsy on some additional masses in the same area. I asked instead that the masses be removed because they were causing discomfort.
    Several masses were removed and tested positive NET.

    Lately I've had radiation for cancer involvement in bone matter of my lower back.

    My biggest problem is that I love to dance but I run out of steam so quickly because I refuse to use oxygen when going dancing. Any suggestions?

    ((((Hugs)))) to everyone.
  • Marynb
    Marynb Member Posts: 1,118
    #18
    redlensman said:

    Neuroendocrine Cancer
    Hi! I am new here but I think that I am one of the longest surviving survivors in this part of the board. Pardon my alliteration. I love it so.

    June of 2001 I was diagnosed with lung cancer. July of 2007 my right lung was removed.

    October of 2008 my oncologist tells me about my prostate and liver cancer and that he knew none of his other patients that had survived nearly as long as I had.

    October of 2010 a biopsy was done on a mass in my right chest wall whic tested clear.

    April of 2012 my oncologist wanted to do another biopsy on some additional masses in the same area. I asked instead that the masses be removed because they were causing discomfort.
    Several masses were removed and tested positive NET.

    Lately I've had radiation for cancer involvement in bone matter of my lower back.

    My biggest problem is that I love to dance but I run out of steam so quickly because I refuse to use oxygen when going dancing. Any suggestions?

    ((((Hugs)))) to everyone.

    Hi redlensman
    Wow, you sure are a warrior! God Bless you! Were all of your cancers NET that spread? Good for you that you still feel like dancing!
  • redlensman
    redlensman Member Posts: 3
    #19
    Marynb said:

    Hi redlensman
    Wow, you sure are a warrior! God Bless you! Were all of your cancers NET that spread? Good for you that you still feel like dancing!

    Were they all NET cancer?
    Mary

    My current oncologist seems to think that the original lung cancer was NET. I remember back in 2001 that there were least a half dozen needle biopsys that my original doctors were unhappy about. I was unhappy also! You know what they say about people who perform the same action over and over expecting different results!

    Anyway, Mary. I hope that you are doing well also.


    (((((HUGS))))) to everyone.

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