Lots of symptoms, no answers. What were your symptoms prior to diagnosis?

charlie123
charlie123 Member Posts: 14
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi,
I'm new here and I feel sort of shy posting this, as I have not actually been diagnosed with lymphoma, though my oncologist has suspected it because of my various symptoms. I have had severe night drenches, itchy skin, occasional red blotches on my abdomen, severe fatigue and weakness and palpable lymph nodes in my neck and groin area. I have had 2 MRIs of my neck since december and one CAT scan of my neck, chest and abdomen. Nothing showed significant lymph activity which is why they haven't done a biopsy.

I feel pretty awful most of the time and just want an answer. It's difficult to walk around and wonder and the doctors haven't been able to give me any solid answer because of the scan results. They have run every blood test imaginable and found nothing significant.

Has anyone had similar experiences? Does lymphoma always show on a scan? Any thoughts would be welcome! Thanks.

Comments

  • yesyes2
    yesyes2 Member Posts: 591
    #2
    Diagnosis
    Hi Charlie123,

    Sorry your not feeling well. And please don't every feel shy about posting. I think all of us here want to help in any way we can.

    From your symptoms it sure sounds like somekind of lymphoma. Can you request a biopsy of one of the nodes? That should give you a diagnosis of some sort. Another idea would be if your onc would order a PET CT scan. That would tell them if the nodes were hot, taking up sugar from the radio active sugar injection. Another thought, have they tried any antibiotics to see if it's an infection?

    Good luck. I know how frustrating it can be. My lymphomas where not the easiest to diagnose. I have an agressive NHL with recurrance all in the last 2 years.

    Let me know what happens.
    Leslie
  • Tracie1981
    Tracie1981 Member Posts: 125
    #3
    Hi
    The symptoms you are having sound exactly like mine are. I get night sweats, the itchiness has gone away since I've been on Chemo. The fatigue and weakness were around before too, just now its worse. So I would definitely have them to do a biopsy, thats how they diagnosed me, even though they could tell by the tumor I had, they had to be positive. Hang in there! Goodluck and God Bless!
  • charlie123
    charlie123 Member Posts: 14
    #4
    Tracie1981 said:

    Hi
    The symptoms you are having sound exactly like mine are. I get night sweats, the itchiness has gone away since I've been on Chemo. The fatigue and weakness were around before too, just now its worse. So I would definitely have them to do a biopsy, thats how they diagnosed me, even though they could tell by the tumor I had, they had to be positive. Hang in there! Goodluck and God Bless!

    Thanks for your comments,
    Thanks for your comments, they are helpful. I actually have pushed for a biopsy, however they refuse to do one since they cannot see the palpable nodes on any scans they have done. They did do a CT put not a PET. They want to wait and run more blood tests in 6 months, I just don't know what to do in the meantime. Does anyone know if it is possible to get a biopsy without it showing on a scan? The doctors are telling me that doesn't happen. I don't want to be difficult, but I feel that something is really not right and don't want to wait too long.
  • catwink22
    catwink22 Member Posts: 281
    #5
    charlie123 said:

    Thanks for your comments,
    Thanks for your comments, they are helpful. I actually have pushed for a biopsy, however they refuse to do one since they cannot see the palpable nodes on any scans they have done. They did do a CT put not a PET. They want to wait and run more blood tests in 6 months, I just don't know what to do in the meantime. Does anyone know if it is possible to get a biopsy without it showing on a scan? The doctors are telling me that doesn't happen. I don't want to be difficult, but I feel that something is really not right and don't want to wait too long.

    Follow your instincts!!
    Hi Charlie,
    Have you gotten a second opinion? My blood tests were normal when I was diagnosed. I didn't even have night sweats, fatigue or weight loss. My only symptoms were swollen lymph nodes under my left arm and over my collar bone. My PCP scheduled a lymph node biopsy immediately. I was diagnosed in Aug 09 with Stage 3 Non-Hodgkins Follicular Lymphoma. Please listen to your own body, you know it best! If it doesn't feel right then it probably isn't. You have a right to a second (or more) opinion. Please keep us posted on your diagnosis, the best of luck to you!
    Cat
  • yesyes2
    yesyes2 Member Posts: 591
    #6
    charlie123 said:

    Thanks for your comments,
    Thanks for your comments, they are helpful. I actually have pushed for a biopsy, however they refuse to do one since they cannot see the palpable nodes on any scans they have done. They did do a CT put not a PET. They want to wait and run more blood tests in 6 months, I just don't know what to do in the meantime. Does anyone know if it is possible to get a biopsy without it showing on a scan? The doctors are telling me that doesn't happen. I don't want to be difficult, but I feel that something is really not right and don't want to wait too long.

    PET CT and Biopsys
    Hi Charlie123,

    You most definitly can have a biopsy with out the node showing on a scan. If a node is palpable, and close to the surface a surgeon can biopsy it. It's done with breast lumps all of the time, even when the lump doesn't show on a mammogram. And a PET CT is very different than a CT scan. Something can light up on a PET and not even show up on a CT scan.

    Good luck, I'll be pulling for you.
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    #7
    catwink22 said:

    Follow your instincts!!
    Hi Charlie,
    Have you gotten a second opinion? My blood tests were normal when I was diagnosed. I didn't even have night sweats, fatigue or weight loss. My only symptoms were swollen lymph nodes under my left arm and over my collar bone. My PCP scheduled a lymph node biopsy immediately. I was diagnosed in Aug 09 with Stage 3 Non-Hodgkins Follicular Lymphoma. Please listen to your own body, you know it best! If it doesn't feel right then it probably isn't. You have a right to a second (or more) opinion. Please keep us posted on your diagnosis, the best of luck to you!
    Cat

    Second Opinion
    Cat,
    Great idea to go for a second opinion. Charlie, I hope you will look into getting a scond opinion. I myself usually go for 3 opinions.
    Leslie
  • charlie123
    charlie123 Member Posts: 14
    #8
    yesyes2 said:

    PET CT and Biopsys
    Hi Charlie123,

    You most definitly can have a biopsy with out the node showing on a scan. If a node is palpable, and close to the surface a surgeon can biopsy it. It's done with breast lumps all of the time, even when the lump doesn't show on a mammogram. And a PET CT is very different than a CT scan. Something can light up on a PET and not even show up on a CT scan.

    Good luck, I'll be pulling for you.
    Leslie

    No one ever told me this,
    No one ever told me this, thank you very much for your help and support. I feel so alone and confused in all this, it helps to have some feedback from those who are familiar with all this. I am going to pursue getting a second opinion. I don't know exactly where I'll start with that yet, but something inside tells me not to give up trying. Thanks guys, I will keep you posted!

    Gratefully,
    Charlie
  • charlie123
    charlie123 Member Posts: 14
    #9
    charlie123 said:

    No one ever told me this,
    No one ever told me this, thank you very much for your help and support. I feel so alone and confused in all this, it helps to have some feedback from those who are familiar with all this. I am going to pursue getting a second opinion. I don't know exactly where I'll start with that yet, but something inside tells me not to give up trying. Thanks guys, I will keep you posted!

    Gratefully,
    Charlie

    length of symptoms, in the clear?
    So I saw my primary yesterday to update him on what was going on and he told me that since my symptoms have been going on so long (a little under a year) I am in the clear for lymphoma. I would like to believe him and put that option behind me, but I wonder if it's actually true. Does anyone know? Night sweats, itching, swollen painless nodes in my neck, weakness. Thanks!
  • yesyes2
    yesyes2 Member Posts: 591
    #10
    charlie123 said:

    length of symptoms, in the clear?
    So I saw my primary yesterday to update him on what was going on and he told me that since my symptoms have been going on so long (a little under a year) I am in the clear for lymphoma. I would like to believe him and put that option behind me, but I wonder if it's actually true. Does anyone know? Night sweats, itching, swollen painless nodes in my neck, weakness. Thanks!

    Length of symptoms
    I'm not a doctor but I know several people who had undiagnosed lymphoma for years before going to a doctor. If it is an indolent type it will grow very slowly.
  • catwink22
    catwink22 Member Posts: 281
    #11
    charlie123 said:

    length of symptoms, in the clear?
    So I saw my primary yesterday to update him on what was going on and he told me that since my symptoms have been going on so long (a little under a year) I am in the clear for lymphoma. I would like to believe him and put that option behind me, but I wonder if it's actually true. Does anyone know? Night sweats, itching, swollen painless nodes in my neck, weakness. Thanks!

    Please get that 2nd opinion
    Charlie that doesn't sit well with me, but I don't know all the information. If it's not lymphoma then what is causing your symptoms? How did he rule it out? Please go get another opinion, if that doctor says the same thing - then you can feel more comfortable about the diagnosis, and if he says something different - then you may save yourself a lot of trouble down the road. If you don't feel right about something, don't let it go. Be persistent and find other avenues until you do feel right. Good Luck Charlie!! We're here for you!
  • m-star
    m-star Member Posts: 441
    #12
    charlie123 said:

    length of symptoms, in the clear?
    So I saw my primary yesterday to update him on what was going on and he told me that since my symptoms have been going on so long (a little under a year) I am in the clear for lymphoma. I would like to believe him and put that option behind me, but I wonder if it's actually true. Does anyone know? Night sweats, itching, swollen painless nodes in my neck, weakness. Thanks!

    push for a second opinion
    push for a second opinion and biopsy.

    To cut a long story short,i kept being told my lump above my collar bone was nothing, for 6 months.
    I kept pushing.
    With much reluctance they operated and found i had Hodgkins Lymphoma.
    By this time it has spread to my chest.

    The only symptom i had was the 1 lump by my collar bone.
    No rash, no night sweats,maybe a little tiredness looking back but then i was 16 and had just gotten thru puberty!

    Trust your instincts like I did. I think deep down i knew something wasn't right.

    My onc does say though that if you have HL, when you drink alcohol, it causes pain in the infected nodes. This is 1 of the questions that i get asked at my annual HL screening!

    ps

    I am a survivor of nearly 19 years so it CAN be treated and cured.

    wishing you all the best,

    Kay
  • CiAnnaBananna
    CiAnnaBananna Member Posts: 105
    #13
    charlie123 said:

    length of symptoms, in the clear?
    So I saw my primary yesterday to update him on what was going on and he told me that since my symptoms have been going on so long (a little under a year) I am in the clear for lymphoma. I would like to believe him and put that option behind me, but I wonder if it's actually true. Does anyone know? Night sweats, itching, swollen painless nodes in my neck, weakness. Thanks!

    Length of Symptoms
    Definitely get a second opinion. I've had a swollen node on my neck for a year, night sweats, itchy skin, a cough for 8 months, and fatigue, all for a year. After seeing a doctor for the cough for months and just kept getting diagnosed with bronchitis, I finally saw another doctor who did a chest CT. Today I was diagnosed with Hodgkins Lymphoma after having 2 biopsies. If you are worried, trust your instincts, see another doctor. Better to catch it now than later.
  • catwink22
    catwink22 Member Posts: 281
    #14
    CiAnnaBananna said:

    Length of Symptoms
    Definitely get a second opinion. I've had a swollen node on my neck for a year, night sweats, itchy skin, a cough for 8 months, and fatigue, all for a year. After seeing a doctor for the cough for months and just kept getting diagnosed with bronchitis, I finally saw another doctor who did a chest CT. Today I was diagnosed with Hodgkins Lymphoma after having 2 biopsies. If you are worried, trust your instincts, see another doctor. Better to catch it now than later.

    Hi CiAnna
    Hi CiAnna, I'm sorry to hear about your diagnosis, but you are on your way to healing and being cured! I had to respond to your post because I call my daughter LeeAnnaBanana hee hee! I've found a lot of comfort and knowledge on this website I hope you will too. Good Luck with your journey, we're here if you need us. Wish you the best! Cat
  • CiAnnaBananna
    CiAnnaBananna Member Posts: 105
    #15
    catwink22 said:

    Hi CiAnna
    Hi CiAnna, I'm sorry to hear about your diagnosis, but you are on your way to healing and being cured! I had to respond to your post because I call my daughter LeeAnnaBanana hee hee! I've found a lot of comfort and knowledge on this website I hope you will too. Good Luck with your journey, we're here if you need us. Wish you the best! Cat

    bananna
    my brother called me banana for years and it just stuck! Thank you for your sweet message and I've already found this website to be such a blessing
  • merrywinner
    merrywinner Member Posts: 626 Member
    #16
    charlie123 said:

    length of symptoms, in the clear?
    So I saw my primary yesterday to update him on what was going on and he told me that since my symptoms have been going on so long (a little under a year) I am in the clear for lymphoma. I would like to believe him and put that option behind me, but I wonder if it's actually true. Does anyone know? Night sweats, itching, swollen painless nodes in my neck, weakness. Thanks!

    I don't like to find fault with anyone's MD and certainly don't mean to here. I only have my experience to draw upon and I will share that with you. I found a lump in my neck. It was painless but after all of the testing etc, etc, it was found to be follicular non hodgkins. I had not had any noteworthy symptoms prior to finding that lump. I guess on hind sight I can see some subtle things I may have had such as increased fatigue, some minor but persistent night sweats and pain in my upper arms and shoulders that was said to be bursitis. Because some of the lymphomas are so slow growing they don't always cause a lot of trouble. Eventually they will tough. My MD said I was just very lucky that the lump popped up in my neck. His feeling based on how widespread the disease had become was that I had it for years prior to diagnosis. I was stunned! I was diagnosed by having scans then biopsies. My blood work was always normal. I hope this doesn't confuse you further. I agree with the others on the second opinion. I got one after my first diagnosis just because it is probably best to. I am currently in complete remission with more treatment being done to keep it there. Good luck to you. Mary
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #17
    charlie123 said:

    Thanks for your comments,
    Thanks for your comments, they are helpful. I actually have pushed for a biopsy, however they refuse to do one since they cannot see the palpable nodes on any scans they have done. They did do a CT put not a PET. They want to wait and run more blood tests in 6 months, I just don't know what to do in the meantime. Does anyone know if it is possible to get a biopsy without it showing on a scan? The doctors are telling me that doesn't happen. I don't want to be difficult, but I feel that something is really not right and don't want to wait too long.

    Not showing up
    I had a biopsy done based on a pet scan. It was very small and deep and the surgeon looked for it for 3 hours and never did find it. So, I went through all the stress and pain in recovery for nothing. When it came back this last time, both my onc and the surgeon wanted more tests sonogram to see placement due to my history.

    When they were able to clearly see the node they wanted to go after, the biopsy was successful. I'd say wait until they are sure they have a viable chance of finding it.

    Take it easy........easier said than done. It'll be ok. Your docs are watching you, stay on top of it but try not to stress over it.

    Take care,
    Beth
  • Linda56
    Linda56 Member Posts: 3
    #18
    charlie123 said:

    Thanks for your comments,
    Thanks for your comments, they are helpful. I actually have pushed for a biopsy, however they refuse to do one since they cannot see the palpable nodes on any scans they have done. They did do a CT put not a PET. They want to wait and run more blood tests in 6 months, I just don't know what to do in the meantime. Does anyone know if it is possible to get a biopsy without it showing on a scan? The doctors are telling me that doesn't happen. I don't want to be difficult, but I feel that something is really not right and don't want to wait too long.

    Get 2nd. opinion
    Hi! I would find a new Dr. try a Dr. who specialist in Hemotology. I was diagnosed in Feb. and will start my 3rd. round of treatments next week. I was diagnosed by my primary Dr. with Mono in Sept. at that time I had lymph swollen in my neck in Nov. at regular check up she said the swollen lymph was normal and could take up to 6 months to go back to normal. In Jan. of this year I started with pain in spleen area and after research I felt it was swollen I went back to the Dr. who ordered a ultra sound which showed the spleen was swollen so she sent me to the hematolgist/oncologist, he felt swollen lymths thru out my body that I didn't even know I had, he immediatley ordered biopsy and bone marrow testing, both came back with cancer - low grade follicular lymphomona. Within a week I was getting my med port and within days I started my treatments. It is so scary but you need to push for further testing. I am so thankful that my Dr.'s are aggressive as this disease is not curable but treatable.

    How it helps,

    Linda56
  • jgilbert1270
    jgilbert1270 Member Posts: 9
    #19
    Lymphoma
    Hi Charlie,
    I wasJust diagnosed with Mantle Cell Lymphoma (mcl). It was first discovered wih a colon ostopy an confirmed with a Pet scan and Biopsy. Lots of problems "typing " the biopsy and still not 100% Mcl. it's been over 2 weeks since biopsy an will not get a definate Type untill Monday 4/12/2010. I've had to learn to be patient, never my strength. This night mare started Jan 14th wit a stroke then a stent and another stroke Jan 29ty an then the wole cancer problem that we originally thought wasa colon intestine blockage and infact was that surgery corrected but it was during that investigation the cancer was discovered. Hopefully The MCL can be the focus now and I can move on With treatment. Because of the strokes mt typin is full of mistakes (I'm not tryin to type in code) so please forgiveAnybody care to share their experiences with Hyper-CVAD chemo? Thanks and hang in there Charlie

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