Confused and Scared

naty3186
naty3186 Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I am new here , and do not have a cancer diagnosis , but have been having symptoms for months that are begfining to scare me. I thought I could reach out here to see if anyone has experienced what I am going through so that I can prepare myself for a visit with my practitioner. I have brought upo these symptoms to my internist and they brush me off and I feel grossly un heard. Below are my symptoms:

 

One day in October I woke up with large severly itchy hives down my arms. I thought I was allergic to something, but I have not seen a change in the occurance of the hives with a change in my diet or my detergent or soaps , etc . I get them everyday opn different parts of my body and they do not subside with Benedryl.  I have a small lump on the lower right side of my neck that rests fairly deep , although only slightly noticable to the eye if you know where to look. I found it by rubbing my neck one day and thought perhaps it was temporarily swoll;en due to a cold, but it has remained there for over a month now unchanged. After a night that I drink alcohol, my symptoms and swelling seem to be worse the following day. I have been tired , sleeping 9-10 hours or 6-8 hours, not combination will relieve the fatigue. I am fluctuating weight constantly without intention. I just lost 12 pounds in two weeks, and now feel severly heavy and  bloated . I sweat at night , and feel very hot to the point where I don't sleep with the covers on. I get itchy for no reason all over my body and will notices random rashes and redness without cause, that eventually go away and reapper.  Also, I have developed cysts on my lower back hip area, one on the top of my breast, and one on my lower jaw, that will not go away and have been there for months now. Lastly when I lay on my side/hip it feels painful and numbing almost like when yopur foot falls asleep. I do not know if this is related but ive had a cough for months, wheezing at times , sometimes more of a throat claring cough. 

I am worried and feel like my doctor will not hear me. I have looked up some of these symptoms and keep seeing posts regarding lymphoma.... Can someone please help identify if they have experienced some or all of these symptoms and how did you get your doctor to listen. I know my body is telling me something. I was a healthy 28 year old woman , active and never had any of these issues, now they appeared suddenly in a blink of an eye and will not go away!! 

 

Thank you for your kindness and help. It is very much appreciated.

Comments

  • SUPERMANatVANDERBILT
    SUPERMANatVANDERBILT Member Posts: 2
    #2
    STOP BEING SCARED

    All you can do is get tested and blood work. After that enjoy the day. Worrying is about as useless as drinking Coca-Cola to solve world peace, and as dangerous as putting a gun to your head . I actually had to take maters into my own hands because for 6 months my doctor said it was all in my head... I diagnosed myself... Nhl tumor the size of a grapefruit on my liver stage 4....i only found out after I dated an appendix attack and demanded a CT scan at the emergency room. But after you've done all that you can... Oh and scans and tests.... Relax and live Your not alone 

    Love... A PINCH OF BAKING AND LEMON JUICE CONCENTRATE IN WATER 

  • Sten
    Sten Member Posts: 162 Member
    #3
    SUPERMANatVANDERBILT said:

    STOP BEING SCARED

    All you can do is get tested and blood work. After that enjoy the day. Worrying is about as useless as drinking Coca-Cola to solve world peace, and as dangerous as putting a gun to your head . I actually had to take maters into my own hands because for 6 months my doctor said it was all in my head... I diagnosed myself... Nhl tumor the size of a grapefruit on my liver stage 4....i only found out after I dated an appendix attack and demanded a CT scan at the emergency room. But after you've done all that you can... Oh and scans and tests.... Relax and live Your not alone 

    Love... A PINCH OF BAKING AND LEMON JUICE CONCENTRATE IN WATER 

    Perhaps see another doctor

    Hi,

    First try to get a good answer from your doctor what your trouble is. If you do not succeed with this, then see another doctor.

    Sten

  • illead
    illead Member Posts: 884 Member
    #4
    Hi Naty

    I am so sorry for all your worries and I understand them.  My husband is the one with lymphoma.  All I can tell you is that his symptoms for actually a couple of years were hives.  I know they say it not a symptom but I have seen many on here talk about them before their diagnosis.  He was able to get rid of them each time with cetarazine.  They were horrible at times looking like alligator skin..  Another symptom was weight loss and tiredness.  We ignored all of that because we have both been super healthy all of our lives and were really naive.  He did not have any lumps either.  We kind of chalked it up to getting old.  He did have a lump in his stomach (which he did not tell me about), turned out to be and enlarged spleen.  That is what triggered his PCP to order an immediate CTscan. Also of concern were some low blood counts.  A few days after his diagnosis, he started getting night sweats (severe) and rigors (extreme chills), high fevers, and more weight loss,   He never had any lumps, so that shows you that the symptoms are across the board.  It just depends.  I would say that you need bloodwork done and maybe a catscan.  I am no expert tho, but it is always better safe than sorry and what you are saying doesn't seem that it should be taken  lightly.  I would push for some answers.  I really hope this helps and hopefully someone else will write in with some more experience and helpful information.  My best to you and hope you get some answers.

    Becky

  • NANCYL1
    NANCYL1 Member Posts: 289
    #5
    NATY AND SYMPTONS

    Hello Naty:

    I think that if your Internist is not helpful, and you have all those symptoms, you should get another opinion.

    I had no symptoms and  had a routine bloodtest when visiting my Internist.  She called me and told me that my white blood cell count was up, and advised me to go immediately to an Oncologist to make sure whether it was cancer or possibly an infection.   She gave me the name of an Oncologist, who turned out to be excellent.  After a blood test, CT-Scan, PT-Scan and Bone Marrow test, he determined that I had B Cell Lymphoma.   I then had two years of Rituxan infusions.  

    Right now I am OK, and will need periodic checkups by my Oncologist.  I had a blood test last Friday and will see the doctor next Wednesday to find out how things are going.

    Go to an excellent doctor and find out exactly what is going on.  The worse thing to do is sit and agonize.

    Good luck and let us know how you are doing.

    Nancy

     

  • naty3186
    naty3186 Member Posts: 4
    #6
    illead said:

    Hi Naty

    I am so sorry for all your worries and I understand them.  My husband is the one with lymphoma.  All I can tell you is that his symptoms for actually a couple of years were hives.  I know they say it not a symptom but I have seen many on here talk about them before their diagnosis.  He was able to get rid of them each time with cetarazine.  They were horrible at times looking like alligator skin..  Another symptom was weight loss and tiredness.  We ignored all of that because we have both been super healthy all of our lives and were really naive.  He did not have any lumps either.  We kind of chalked it up to getting old.  He did have a lump in his stomach (which he did not tell me about), turned out to be and enlarged spleen.  That is what triggered his PCP to order an immediate CTscan. Also of concern were some low blood counts.  A few days after his diagnosis, he started getting night sweats (severe) and rigors (extreme chills), high fevers, and more weight loss,   He never had any lumps, so that shows you that the symptoms are across the board.  It just depends.  I would say that you need bloodwork done and maybe a catscan.  I am no expert tho, but it is always better safe than sorry and what you are saying doesn't seem that it should be taken  lightly.  I would push for some answers.  I really hope this helps and hopefully someone else will write in with some more experience and helpful information.  My best to you and hope you get some answers.

    Becky

    Hi Becky,
     
    Thank you so much

    Hi Becky,

     

    Thank you so much for sharing your story of how your husband came to his diagnosis. It has been helpful, and after reading some of the other posts, I know I just have to be more aggressive in asking for specific tests, such as blood work. I was told that often hives appear for no reason, and there is no explaination for them. Although I can see that perhaps it is exceptionally difficult to determine the root cause to the hives, unfortunately that is not the only symptom I have, which therefore has led me to need more answers regarding my health. I hope your husband is doing well. Thank you so much for reaching out! 

     

    Naty

  • naty3186
    naty3186 Member Posts: 4
    #7
    SUPERMANatVANDERBILT said:

    STOP BEING SCARED

    All you can do is get tested and blood work. After that enjoy the day. Worrying is about as useless as drinking Coca-Cola to solve world peace, and as dangerous as putting a gun to your head . I actually had to take maters into my own hands because for 6 months my doctor said it was all in my head... I diagnosed myself... Nhl tumor the size of a grapefruit on my liver stage 4....i only found out after I dated an appendix attack and demanded a CT scan at the emergency room. But after you've done all that you can... Oh and scans and tests.... Relax and live Your not alone 

    Love... A PINCH OF BAKING AND LEMON JUICE CONCENTRATE IN WATER 

    You are absolutely right.

    You are absolutely right. Being scared of what could be is not healthy. I am just growing increasingly frustrated and hope to find some answers with a new practitioner. Thank you for your response, it is actually uplifting that I am not the only one who feels like I know when somethings wrong. You know your own body, you know when something is more than surface material and needs investigation. You diagnosing yourself shows just how important listening to your body is! I hope you are doing well. Wishing you all the best in your treatment!

     

    Thanks again,

     

    Naty

  • naty3186
    naty3186 Member Posts: 4
    #8
    NANCYL1 said:

    NATY AND SYMPTONS

    Hello Naty:

    I think that if your Internist is not helpful, and you have all those symptoms, you should get another opinion.

    I had no symptoms and  had a routine bloodtest when visiting my Internist.  She called me and told me that my white blood cell count was up, and advised me to go immediately to an Oncologist to make sure whether it was cancer or possibly an infection.   She gave me the name of an Oncologist, who turned out to be excellent.  After a blood test, CT-Scan, PT-Scan and Bone Marrow test, he determined that I had B Cell Lymphoma.   I then had two years of Rituxan infusions.  

    Right now I am OK, and will need periodic checkups by my Oncologist.  I had a blood test last Friday and will see the doctor next Wednesday to find out how things are going.

    Go to an excellent doctor and find out exactly what is going on.  The worse thing to do is sit and agonize.

    Good luck and let us know how you are doing.

    Nancy

     

    Hi Nancy,
     
    Thank you for

    Hi Nancy,

     

    Thank you for your response, it is definitely not helpful to sit and agonize, I have seen my doctor making these complaints for a few months and honestly, am starting to feel like they think I am crazy. It is clear I am in dire need of a second opionion with an entirely new physician. I hope you are doing well and your appoitment next wednesday brings great results! Thank you for taking the time to share your opionion on my symptoms and your personal journey to diagnosis. 

     

    Best,

    Naty

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #9
    naty3186 said:

    Hi Nancy,
     
    Thank you for

    Hi Nancy,

     

    Thank you for your response, it is definitely not helpful to sit and agonize, I have seen my doctor making these complaints for a few months and honestly, am starting to feel like they think I am crazy. It is clear I am in dire need of a second opionion with an entirely new physician. I hope you are doing well and your appoitment next wednesday brings great results! Thank you for taking the time to share your opionion on my symptoms and your personal journey to diagnosis. 

     

    Best,

    Naty

    My take

    Welcome, Naty. I read your post a few days ago at work on my phone, but have a very hard time responding on its tiny screen.

    Overall, my take of your many symptoms is that it does not screem "Lymphoma !"  But, it could be, of course.  Too many other things cause hives, but on the other hand, the itching and sweating are classic lymphoma warnings.

    Like most have said, I suggest you go see another doctor at the first opportunity.  Get paper copies of all results and keep them for future reference/ comparisons.  Unless your current doctor gets motivated, I would dump him like a four year old Congress.....

     

    Wishing you well,

    max

     

    .

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