Undiagnosed still - No end...?

Hi

Very frustrated... I am a 38YO male, never smoked, never did drugs, healthy and in shape. Im terriby worried.

All started on April 4, 2 months ago. That day I ended up in the ER with chest pain.. it was sharp, very strange. The doctors took an X Ray and did an EKG which did not show abnormalities (fortunately at the time) which made me feel much better. Once i was discharged, they asked me to follow up with the internal medicine doctor. Met the GP him next day, and he was very confident that it was costochondritis and said that in 4-6 weeks it would go away.

Here is were the strange things started to happen... Within the next 5 days I started developing extreme gastritis/acid reflux and started to feel fatigued. Not like when you work out or you have been up for 12 hours, but completely exhausted. This went on for 7 days and eventually went back to the GP who referred me with a GI specialist. I felt like I could finally get an answer! I met with her, and was started on PPIs which unfortunately did not help much. She scheduled an endoscopy a few days after, which did show that i had gastritis (i knew this!!) but also a suspicius indentation in the stomach as if something was pressing against it from the outside. This triggered and abdominal CT scan (first one in my life) that showed nothing but the beginning of some plaque in the main aorta. This procedure was done on April 22... which also marked the start of my crazy weight loss (I went from 199lb (89.5kg) that day to 182lb (82.5kg) today... 5 weeks!).

The pain in the chest had not disappeared so I had a stress test (which was extremely difficult because of how exhausted I was feeling) that did not show anything so my GP ordered a second ct scan, now of the chest. The scan did not show also anything but some nodules on the thyroid, which Im in the process of following up with a biopsy in a few days.

All my blood work is normal, all the tests are normal but I feel horrible, can't sleep because of the body pain, night sweats and exhaustion. I dont feel like myself and keep asking the GP to refer me to a hematologist but has been very dismissive. Still ahve the stomach issues with no avail. This is not normal, I know my body, and is driving me crazy.

Jes

Comments

  • Dante S
    Dante S Member Posts: 15 Member
    Welcome

    Welcome (unfortunatrely) to the lymphoma forum.  I'm sorry to hear that you are going through this...2 quick questions:

    1.)  Are the night sweats you are experiencing light...or are they drenching (as in having to change your clothes)?

    2.)  Did you post here because you suspect (either through Google reseearch or Doctor comment) that you might have lymphoma given your symptoms?

    It can be hard to nail down a lymphoma diagnosis without a lump present (then doctors usually take things a lot more seriously!)

  • JesZamora
    JesZamora Member Posts: 7 Member
    Dante S said:

    Welcome

    Welcome (unfortunatrely) to the lymphoma forum.  I'm sorry to hear that you are going through this...2 quick questions:

    1.)  Are the night sweats you are experiencing light...or are they drenching (as in having to change your clothes)?

    2.)  Did you post here because you suspect (either through Google reseearch or Doctor comment) that you might have lymphoma given your symptoms?

    It can be hard to nail down a lymphoma diagnosis without a lump present (then doctors usually take things a lot more seriously!)

    Hi Dante, thank you for your

    Hi Dante, thank you for your reply.

    The night sweats are light now, but I did not have any 2 weeks ago. As for why I post here, is mainly because of researching on my own. The only areas that have not been scanned in my body are the pelvis and the brain... I will try to push for MRIs on these areas to rule out other causes. The thing is that I don't have symptoms in there at all.

    The nodules that were found on my thyroid should have a biopsy next week. Still, from what I have investigated they would not produce weight loss unless the cancer (if it is thyroid cancer) has metastazied to other parts of the body.

    Jes

  • Dante S
    Dante S Member Posts: 15 Member
    JesZamora said:

    Hi Dante, thank you for your

    Hi Dante, thank you for your reply.

    The night sweats are light now, but I did not have any 2 weeks ago. As for why I post here, is mainly because of researching on my own. The only areas that have not been scanned in my body are the pelvis and the brain... I will try to push for MRIs on these areas to rule out other causes. The thing is that I don't have symptoms in there at all.

    The nodules that were found on my thyroid should have a biopsy next week. Still, from what I have investigated they would not produce weight loss unless the cancer (if it is thyroid cancer) has metastazied to other parts of the body.

    Jes

    Hang in There

    The first line of your original post sounded familiar...I was a healthy 36 y/o male who worked out 6x/week and never smoked/drank...and then found out I had stage 4 lymphoma...it can be quite a shock! 

    I am not a doctor, but some of your symptoms (night sweats, chest pain, weight loss) can be very indicative of lymphoma.  However, there is a member who posts on here who said there are roughly 60,000 diseases and only 150 detectable symptoms...so things can seem to align perfectly to a certain diagnosis only to not be so.

    If you are looking for some encouragement in all of this, if you do have lymphoma or thyroid cancer, both of them are usually VERY treatable and curable.  

  • JesZamora
    JesZamora Member Posts: 7 Member
    edited June 2021 #5
    Dante S said:

    Hang in There

    The first line of your original post sounded familiar...I was a healthy 36 y/o male who worked out 6x/week and never smoked/drank...and then found out I had stage 4 lymphoma...it can be quite a shock! 

    I am not a doctor, but some of your symptoms (night sweats, chest pain, weight loss) can be very indicative of lymphoma.  However, there is a member who posts on here who said there are roughly 60,000 diseases and only 150 detectable symptoms...so things can seem to align perfectly to a certain diagnosis only to not be so.

    If you are looking for some encouragement in all of this, if you do have lymphoma or thyroid cancer, both of them are usually VERY treatable and curable.  

    How did you find out you had lymphoma?

    Thank you Dante,

    Yes, it can be attributable to many other things. The one issue that affects me the most is the uncontrollable weight loss and muscle loss (incredibly fast). How did you find out about yours? Did you see any symptoms before the lump?

    i know, at least either cancer is not terminal. I am also glad that the ct scans have not shown any other nodules, which would point to metastasis.

  • Dante S
    Dante S Member Posts: 15 Member
    JesZamora said:

    How did you find out you had lymphoma?

    Thank you Dante,

    Yes, it can be attributable to many other things. The one issue that affects me the most is the uncontrollable weight loss and muscle loss (incredibly fast). How did you find out about yours? Did you see any symptoms before the lump?

    i know, at least either cancer is not terminal. I am also glad that the ct scans have not shown any other nodules, which would point to metastasis.

    I had a lump on my

    I had a lump on my supraclavicular region (kind of between neck and collarbone)...they did a biopsy.  I also had night sweats and severe fatigue.  

    Even if you metastatic lymphoma it can be cured (stage 4 lymphoma is nothing like other cancers...it can be very curable)

  • JesZamora
    JesZamora Member Posts: 7 Member
    Dante S said:

    I had a lump on my

    I had a lump on my supraclavicular region (kind of between neck and collarbone)...they did a biopsy.  I also had night sweats and severe fatigue.  

    Even if you metastatic lymphoma it can be cured (stage 4 lymphoma is nothing like other cancers...it can be very curable)

    Thank you

    Hope all goes well with you. Were you able to go back excercising and everything else?

  • Dante S
    Dante S Member Posts: 15 Member
    edited June 2021 #8
    In Remission

    Yes, I have been in remission for a year...everything is back to normal (hope it stays that way)

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    edited June 2021 #9
    JesZamora said:

    Thank you

    Hope all goes well with you. Were you able to go back excercising and everything else?

    Overall

    Jes,

    I just re-read all of your posts, which I did not comment on earlier.   As a layperson, with no medical certifications of any kind (i.e., the kind of person allowed to write on these Boards),  is seems to me very unlikely that you have lymphoma.   In this, I agree, of course, with your doctors.   I say that in that they have not referred you to a medical oncologist.

    Foremost are the two negative CTs.    Gastric pains, of whatever etiology, are easily confused even by emergency medical personnel with heart attacts;   I have been told myself that I was in unstable angina in an ER and following several EKGs.   But further testing at a larger hospital showed that it was severe reflux instead.  My symptoms at that time were a crushing pain center-chest, pain radiating down my arm, and a contorted jaw -- all classic symptoms of a coronary.

    You mention 'extreme weight loss.'    Going from 198 to 182 is around 7 %, in around a month and a half.   Certainly not extreme, and more readily attributible to the various stomach ailements that you have had.   Lymphoma with NO grossly enlarged nodes anywhere could not do that.  Oncologists do not ordinarily adjust chemo drug dosing in patients until a trip-point of 15% weight loss is met, but some use 10% instead.   Yet, as you were already very fit, the weight loss must be accounted for somehow, and is significant.    Blood-cancer-induced night sweats (lymphoma, leukemia, multiple myeloma)  are not the same thing as sweating in your sleep, or mild:  they are drenching.   My wife used to make me sleep on a beach blanket, with a body towel over my pillow, and they could always be wrung out the next moring, and had to be washed daily.  But the majority of people with lymphoma do not have any night sweating.  It is most common in HL types, and is regarded as a "B Symptom."

    You have something wrong, and good luck with getting it properly diagnosed, and hopefully soon, for your peace of mind

  • JesZamora
    JesZamora Member Posts: 7 Member
    edited June 2021 #10

    Overall

    Jes,

    I just re-read all of your posts, which I did not comment on earlier.   As a layperson, with no medical certifications of any kind (i.e., the kind of person allowed to write on these Boards),  is seems to me very unlikely that you have lymphoma.   In this, I agree, of course, with your doctors.   I say that in that they have not referred you to a medical oncologist.

    Foremost are the two negative CTs.    Gastric pains, of whatever etiology, are easily confused even by emergency medical personnel with heart attacts;   I have been told myself that I was in unstable angina in an ER and following several EKGs.   But further testing at a larger hospital showed that it was severe reflux instead.  My symptoms at that time were a crushing pain center-chest, pain radiating down my arm, and a contorted jaw -- all classic symptoms of a coronary.

    You mention 'extreme weight loss.'    Going from 198 to 182 is around 7 %, in around a month and a half.   Certainly not extreme, and more readily attributible to the various stomach ailements that you have had.   Lymphoma with NO grossly enlarged nodes anywhere could not do that.  Oncologists do not ordinarily adjust chemo drug dosing in patients until a trip-point of 15% weight loss is met, but some use 10% instead.   Yet, as you were already very fit, the weight loss must be accounted for somehow, and is significant.    Blood-cancer-induced night sweats (lymphoma, leukemia, multiple myeloma)  are not the same thing as sweating in your sleep, or mild:  they are drenching.   My wife used to make me sleep on a beach blanket, with a body towel over my pillow, and they could always be wrung out the next moring, and had to be washed daily.  But the majority of people with lymphoma do not have any night sweating.  It is most common in HL types, and is regarded as a "B Symptom."

    You have something wrong, and good luck with getting it properly diagnosed, and hopefully soon, for your peace of mind

    Thank you

    Thank you Max for your reply. Yes, I hope that I get a proper diagnosis soon. It has been a roller coaster of sorts since all this started. Is exactly as you say, peace of mind of knowing what and making a plan to work on whatever it is.

     

    Wish the best - Jes

  • JesZamora
    JesZamora Member Posts: 7 Member
    edited June 2021 #11
    Dante S said:

    In Remission

    Yes, I have been in remission for a year...everything is back to normal (hope it stays that way)

    Great!

    Great!

    I am glad to know. Hope it stays that way for a long long time.

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    edited June 2021 #12

    Overall

    Jes,

    I just re-read all of your posts, which I did not comment on earlier.   As a layperson, with no medical certifications of any kind (i.e., the kind of person allowed to write on these Boards),  is seems to me very unlikely that you have lymphoma.   In this, I agree, of course, with your doctors.   I say that in that they have not referred you to a medical oncologist.

    Foremost are the two negative CTs.    Gastric pains, of whatever etiology, are easily confused even by emergency medical personnel with heart attacts;   I have been told myself that I was in unstable angina in an ER and following several EKGs.   But further testing at a larger hospital showed that it was severe reflux instead.  My symptoms at that time were a crushing pain center-chest, pain radiating down my arm, and a contorted jaw -- all classic symptoms of a coronary.

    You mention 'extreme weight loss.'    Going from 198 to 182 is around 7 %, in around a month and a half.   Certainly not extreme, and more readily attributible to the various stomach ailements that you have had.   Lymphoma with NO grossly enlarged nodes anywhere could not do that.  Oncologists do not ordinarily adjust chemo drug dosing in patients until a trip-point of 15% weight loss is met, but some use 10% instead.   Yet, as you were already very fit, the weight loss must be accounted for somehow, and is significant.    Blood-cancer-induced night sweats (lymphoma, leukemia, multiple myeloma)  are not the same thing as sweating in your sleep, or mild:  they are drenching.   My wife used to make me sleep on a beach blanket, with a body towel over my pillow, and they could always be wrung out the next moring, and had to be washed daily.  But the majority of people with lymphoma do not have any night sweating.  It is most common in HL types, and is regarded as a "B Symptom."

    You have something wrong, and good luck with getting it properly diagnosed, and hopefully soon, for your peace of mind

    Night sweats

    I laughed a little about you sleeping on a beach towel. My wife did the same thing. I can't believe I just thought I was too wrapped up in the comforter. When my GP started realizing I might have lymphoma he asked me if I had night sweats. I know  my eyes must have gotten huge. All I could think was how did he know. I was there because of the weight loss.

     

  • Lym999
    Lym999 Member Posts: 43 Member
    I can only speak for myself

    I can only speak for myself but I lost 15 pounds in just over a month before being diagnosed with Lymphoma. I was also a fit person and I knew something wasn't right about the weight loss. My doctor thought I had some kind of upper respiratory infection in my lung that ended being Large Diffuse B Lymphoma. So you can show weight loss by having Lymphoma.

  • JesZamora
    JesZamora Member Posts: 7 Member
    Lym999 said:

    I can only speak for myself

    I can only speak for myself but I lost 15 pounds in just over a month before being diagnosed with Lymphoma. I was also a fit person and I knew something wasn't right about the weight loss. My doctor thought I had some kind of upper respiratory infection in my lung that ended being Large Diffuse B Lymphoma. So you can show weight loss by having Lymphoma.

    Weight Loss

    Lym, how was it diagnosed? XRay?

  • Lym999
    Lym999 Member Posts: 43 Member
    edited June 2021 #15
    They thought I had an upper

    They thought I had an upper respiratory infection in my lung and I had an X-ray done. I then had a ct scan immediately afterwards and was told I had cancer.

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    Lym999 said:

    They thought I had an upper

    They thought I had an upper respiratory infection in my lung and I had an X-ray done. I then had a ct scan immediately afterwards and was told I had cancer.

    Just curious

    After the CT was it biopsied?

  • Lym999
    Lym999 Member Posts: 43 Member
    edited June 2021 #17
    No. I did this at an Urgent

    No. I did this at an Urgent Care and was told I had lung cancer after they did the CT scan on site. I was then sent to a hematologist who did the biopsy and that was when we discovered it was Lymphoma, not lung cancer. I was very lucky!

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    edited June 2021 #18
    Lym999 said:

    No. I did this at an Urgent

    No. I did this at an Urgent Care and was told I had lung cancer after they did the CT scan on site. I was then sent to a hematologist who did the biopsy and that was when we discovered it was Lymphoma, not lung cancer. I was very lucky!

    congratulations!

    On having a very treatable form of cancer unlike my relative who has small cell lung cancer. Good going!

  • Lym999
    Lym999 Member Posts: 43 Member
    The scary thing was I wasn't

    The scary thing was I wasn't even going to do the biopsy. The hematologist also thought it was lung cancer and I was ready to give up. My wife actually saved me by forcing me to do the biopsy even though I didn't want to. Thank god for her pushing me into doing it. My Hematologist was quite shocked when it came back as Lymphoma. It is not very common for Lymphoma to be in the lung. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Lym999 said:

    The scary thing was I wasn't

    The scary thing was I wasn't even going to do the biopsy. The hematologist also thought it was lung cancer and I was ready to give up. My wife actually saved me by forcing me to do the biopsy even though I didn't want to. Thank god for her pushing me into doing it. My Hematologist was quite shocked when it came back as Lymphoma. It is not very common for Lymphoma to be in the lung. 

    Many

    Lym,

    A few things in your last post (6-16) suggest that the doctors you are using have odd ways of proceeding.   Your hematologist 'thought' that you had lung cancer ?   No cancer diagniosis is ever confirmed, much less classified, by what anyone 'thinks,' MD or not.    Beyond that, no insurance carrier would begin to pay for therapy until they had received a copy of the biopsy and confirmation as to its contents.  This is true of Medicare and Medicade also.

  • Lym999
    Lym999 Member Posts: 43 Member
    The Hematologist got the Ct

    The Hematologist got the Ct Scan from the Urgent care facility. It was his opinion at that time it was cancer and was lung cancer. He also wanted to do a biopsy at that point. My right lung was filled with cancer and was quite noticeable on the scan. I could see why he along with the other doctor thought it was lung cancer.