Update on Husband's Uncle

emamei
emamei Member Posts: 146
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi there.

I want to thank those of you who replied to my original post "Questions for you".

My husband's uncle met with his oncologist today to go over the latest pathology. It has been determined that his cancer is not HL or NHL, or any of the other subtypes of Lymphoma.

The oncologist is at a loss. On the PET Scan it presents like HL or NHL. He definitely has cancer throughout his entire lymph system with various areas of swelling. However, they (his doctors, pathologist, etc.) have not been able to identify the cancer cells. They are calling them "generic cancer cells". The primary source is unknown. All they know for certain is he is Stage 4 with cancer throughout his lymph system. They want to begin chemo ASAP, but he (my hubby's uncle)wants to explore additional medical opinions in Washington State and California. We all live in Vancouver, British Columbia, Canada. Even though he has the best of the best here on the home front for oncologists and has sought 2nd and 3rd opinions from two other oncologists here, who happen to agree with oncologist #1.

Has anyone here heard of such a case? Cancer in the lymphatic system of unknown primary that is neither HL or NHL?

I look forward to hearing from you.

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    Seattle Washington
    Hi,
    That must be very frustrating for your husbands uncle not being able to pin point the root of his cancer. I read where 2 to 4% of all cancer patients deal with this same problem. Fred Hutchinson Cancer Research Center in Seattle Washington may be a good place for your husbands uncle to go. It's one of the finest cancer centers in the Pacific Northwest and fairly close from Vancouver B.C. I personally have not known anyone in this situation, but maybe someone else in the group will be able to help out. Let us know how his search for additional medical opinions goes. Best wishes...Sue
    (FNHL-2-3A-6/10)
  • emamei
    emamei Member Posts: 146
    #3
    allmost60 said:

    Seattle Washington
    Hi,
    That must be very frustrating for your husbands uncle not being able to pin point the root of his cancer. I read where 2 to 4% of all cancer patients deal with this same problem. Fred Hutchinson Cancer Research Center in Seattle Washington may be a good place for your husbands uncle to go. It's one of the finest cancer centers in the Pacific Northwest and fairly close from Vancouver B.C. I personally have not known anyone in this situation, but maybe someone else in the group will be able to help out. Let us know how his search for additional medical opinions goes. Best wishes...Sue
    (FNHL-2-3A-6/10)

    Thanks Sue
    Ironically the Hutchinson Center is just where he was today. He had all of his medical info sent down ahead of today's meeting with a panel of oncologists who apparently have an 80% success rate in determining the primary cancer in patients diagnosed with CUP (cancer of unknown primary). Unfortunately, my husband's uncle was told by the panel that although they can identify 80% of cases brought to them, my husband's uncle falls in the 20% of cases they cannot identify.

    So, he and his wife drove home to Vancouver, BC today feeling devastated and hopeless. His entire lymphatic system is infiltrated with cancer. He's stage 4. He's also beginning to feel enlarged lymph nodes in other areas of his body. The only treatment option now is chemo and it will be palliative.

    I cried so much when I heard the news this evening. My mother in law, his sister, is devastated, a complete emotional mess. She is a breast cancer survivor, and her eldest son, my brother-in-law, has been battling chronic lymphocytic leukemia for the last 12 years and has undergone three BMT's (bone marrow transplants) and all the treatments that go along with that. Her mother-in-law died two years ago from stomach cancer, and she's been with me through my own battle with breast cancer. It's too much for any one.

    I'll update as we find out more...
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
    emamei said:

    Thanks Sue
    Ironically the Hutchinson Center is just where he was today. He had all of his medical info sent down ahead of today's meeting with a panel of oncologists who apparently have an 80% success rate in determining the primary cancer in patients diagnosed with CUP (cancer of unknown primary). Unfortunately, my husband's uncle was told by the panel that although they can identify 80% of cases brought to them, my husband's uncle falls in the 20% of cases they cannot identify.

    So, he and his wife drove home to Vancouver, BC today feeling devastated and hopeless. His entire lymphatic system is infiltrated with cancer. He's stage 4. He's also beginning to feel enlarged lymph nodes in other areas of his body. The only treatment option now is chemo and it will be palliative.

    I cried so much when I heard the news this evening. My mother in law, his sister, is devastated, a complete emotional mess. She is a breast cancer survivor, and her eldest son, my brother-in-law, has been battling chronic lymphocytic leukemia for the last 12 years and has undergone three BMT's (bone marrow transplants) and all the treatments that go along with that. Her mother-in-law died two years ago from stomach cancer, and she's been with me through my own battle with breast cancer. It's too much for any one.

    I'll update as we find out more...

    So sorry...
    Hi,
    I am so sorry the doctors at Hutchinsons couldn't identify his cancer. My prayers are with you and the family. It's hard to understand why things turn out the way they do. Enjoy the time you all have left with this dear man and leave the rest in Gods hands. Take care and God bless you and the family. Much love...Sue (FNHL-2-3A-6/10)
  • bluerose
    bluerose Member Posts: 1,104
    #5
    emamei said:

    Thanks Sue
    Ironically the Hutchinson Center is just where he was today. He had all of his medical info sent down ahead of today's meeting with a panel of oncologists who apparently have an 80% success rate in determining the primary cancer in patients diagnosed with CUP (cancer of unknown primary). Unfortunately, my husband's uncle was told by the panel that although they can identify 80% of cases brought to them, my husband's uncle falls in the 20% of cases they cannot identify.

    So, he and his wife drove home to Vancouver, BC today feeling devastated and hopeless. His entire lymphatic system is infiltrated with cancer. He's stage 4. He's also beginning to feel enlarged lymph nodes in other areas of his body. The only treatment option now is chemo and it will be palliative.

    I cried so much when I heard the news this evening. My mother in law, his sister, is devastated, a complete emotional mess. She is a breast cancer survivor, and her eldest son, my brother-in-law, has been battling chronic lymphocytic leukemia for the last 12 years and has undergone three BMT's (bone marrow transplants) and all the treatments that go along with that. Her mother-in-law died two years ago from stomach cancer, and she's been with me through my own battle with breast cancer. It's too much for any one.

    I'll update as we find out more...

    Hi there
    I didn't know you were a Canuck. lol. I used to live in Vancouver for years and years, now in Ottawa Ontario.

    One of my key specialists went to the BC Cancer Agency years ago from Princess Margaret where I saw him but I think he is retired now. Dr. Sutcliffe. He headed up the BC Cancer Agency I believe. He was a specialist in radiation for lymphomas.

    I suppose you have been through the BC Cancer Agency for guidance and support eh? I am glad you have sought other opinions and no I haven't heard of cancer in the lympathic system that was not lymphoma but since the lymph clears bad stuff from the body I guess it's totally possible to have that kind of diagnosis.

    Have you talked to them at Dana Farber? Try the Perini Clinic there and Dana Farber itself, in Boston. Ask for a nurse practitioner by phone and I'm sure they will guide you for another opinion. They used to give discounts for Canadian patients not sure if that's the same now. I know for me they asked me to fax them or send them in some way my records but I think I read somewhere you already have those together. Heck it's worth a shot.

    Have you googled CUP to see what's online about it? Watch the sources though, only go to known sites like PUBMED and Mayo Clinic and others like that. Sometimes someone in another part of the world might have good info on this too.

    I will watch for updates, all the best.

    Blessings,

    Bluerose

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