Trying to get diagnosed

72graphics
72graphics Member Posts: 4
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Thank you all for being so friendly on this board. I have read through many posts and you all seem so supportive.
I will try to keep this short. About a year ago I noticed my left arm pit felt swollen and lumpy. I mentioned this to my gynecologist at the time but he didn't really even look. I ended up having some female issues - cysts on ovary, fibroids on uterus and an enlarged uterus - so I had a total hysterectomy. This was November 2009.
About 6 months ago, my under arm felt more swollen, I began to have pain in the middle of my chest that radiated out to my back. I felt extremely tired and fatigued and nauseous. So I went to my regular doctor who is also a DO (think that is the right letters?). She said she thought my underarm was swollen from my pectoral muscle being inflammed. She said she thought I had a slipped rib and did an adjustment on my spine. I didn't really feel any better after this. Shortly after this, I noticed my shoulder, just at the base of my neck and extending towards my shoulder is swollen and kind of achey. My collar bone hurts. So I waited a couple of months and called back but she was on vacation. I ended up seeing another doctor. He didn't even hardly look at me and prescribed muscle relaxers. Tried these for a few days and nothing happened except all I wanted to do was sleep because I was so drugged up.
About a month and a half ago, I got really sick to my stomach and had chronic non-stop diarreah (sp?) for over a week. Ended up severely dehydrated and in the ER. They did blood tests and an xray but nothing showed up. I ended up being referred to a surgeon and he scheduled me for some gall bladder tests - ultra sound and nuclear medicine test. Again, nothing showed up. Then he did an upper and lower scope. Still nothing. At this point he tells me he thinks it's psychological. I hate hearing this. I really don't feel good! I truly believe that this last thing is not related to the rest and I just had a really bad bug. I mentioned the swelling on my upper shoulder and the swollen arm pit and he didn't look either, just shrugged it off.
Soooo.... it was time for my yearly gyno visit but my regular gyno has retired so I go to a new dr. again. I really like my new one. She does a thorough exam and listens to me. She says she can feel a chain of axillary lymph nodes and sends me for a mammogram. Guess what? It shows up normal too. So now she has referred me to a surgeon for a biopsy.
I live in a small town and am going to be seeing the same surgeon who did my scopes and thinks I'm a hypochondriac. My appt is this Monday. I'm worried he will blow me off again. Any suggestions on how to get this biopsy done? If it is done and there is nothing, I will move on and accept that I'm crazy or something but I need some peace of mind. I haven't felt good in over a year. Any suggestions for what I should say or do to get him to do a biopsy? Also, could anyone that had an enlarged supraclavicular node describe it to me. Mine starts at the base of my neck and when I place my fingers over it, it takes 4 fingers to cover the entire thing. Could this just be a muscle inflammed and not a node? I hear people say theirs was pea or grape sized but this thing feels really big.
Again I'm really sorry how long this turned out to be. Just a lot has gone on over the last year. Just typing it makes me feel guilty like I really am a hypochondriac.
Thanks for reading.

Comments

  • DenJ
    DenJ Member Posts: 26 Member
    #2
    Nodes
    Hi...I'm certaintly no Dr. but I am in remission for Follicular Non Hodgkikns Lymphoma. I had a lump on my neck...it didn't hurt and was stable. BUT....I was experiencing some issues with skin cancer, the kind that can metastisize. Soooooo...I called my dermatologist...she set it all up and I had the node taken out and biopsied....of course it was positive. I also, in hind sight, was having night sweats. But I was in no pain nor fatigue. I went through 6 rounds of RCHOP and as I said am in remission now.....it's been over a year.

    Now....If it were me in your shoes, I would be SCREAMING at those docs....tell them to take one or some out and test them. Tell em you are not feeling good and your body is saying something....trust YOUR instincts. It's much better to do that and have them think your nuts then having to find out later that there really is sumpin going on. Do it for you.....make em listen.

    Best of luck,
    DenJ
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #3
    Agree
    72,
    I agree 100% with Denj. I don't know whats wrong with these hair brained so called Drs. I have an idea but don't want to go into that. John(FNHL-1-4A-5/10)
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
    COBRA666 said:

    Agree
    72,
    I agree 100% with Denj. I don't know whats wrong with these hair brained so called Drs. I have an idea but don't want to go into that. John(FNHL-1-4A-5/10)

    Get the biopsy!!!
    Hi,
    I agree with John and DenJ. Please speak up and be very firm with the doctor about having the biopsy. If you have been sick for a year and have lumps you can physically feel..."something" is going on!! Keep us posted, and good luck.
    Sue..(FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    allmost60 said:

    Get the biopsy!!!
    Hi,
    I agree with John and DenJ. Please speak up and be very firm with the doctor about having the biopsy. If you have been sick for a year and have lumps you can physically feel..."something" is going on!! Keep us posted, and good luck.
    Sue..(FNHL-2-3A-6/10)

    Getting closer to the last of it
    Sue,
    How are you doing today? You ain't been running any marathons have you? HAHAHAHA!!! John (FNHL-1-4A-5/10)
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #6
    COBRA666 said:

    Getting closer to the last of it
    Sue,
    How are you doing today? You ain't been running any marathons have you? HAHAHAHA!!! John (FNHL-1-4A-5/10)

    haha...NO
    Hi John,
    No marathons for me man! I'm a little anxious as usual the weekend before chemo, but thats just me. We got hit with one heck of a snow storm, so I've been sitting here all day watching it snow. Got about 8 inches so far and it's still comin down. I love the snow, so it doesn't matter to me how much we get. When you live in an area where snow is a given, you better get use to it, or move away..ha! The boys came over and did all of the shoveling for us and will be back in the morning to hit it again, so it don't get any better than that. We were blessed with two great sons...very caring and loving....they take very good care of their daddy and mama.
    Love, Sue...(FNHL-2-3A-6/10)
  • 72graphics
    72graphics Member Posts: 4
    #7
    allmost60 said:

    haha...NO
    Hi John,
    No marathons for me man! I'm a little anxious as usual the weekend before chemo, but thats just me. We got hit with one heck of a snow storm, so I've been sitting here all day watching it snow. Got about 8 inches so far and it's still comin down. I love the snow, so it doesn't matter to me how much we get. When you live in an area where snow is a given, you better get use to it, or move away..ha! The boys came over and did all of the shoveling for us and will be back in the morning to hit it again, so it don't get any better than that. We were blessed with two great sons...very caring and loving....they take very good care of their daddy and mama.
    Love, Sue...(FNHL-2-3A-6/10)

    Just an update. Had my
    Just an update. Had my appointment today with the surgeon. Still don't feel like he's taking much of an interest. He barely examined my lymph nodes. Says my age of 38 makes it unlikely for it to be lymphoma. He ordered LDH (or is it LDH?) and ESR blood tests. Is this is good indicator? Or am I just getting the same run around?
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #8
    72graphics said:

    Just an update. Had my
    Just an update. Had my appointment today with the surgeon. Still don't feel like he's taking much of an interest. He barely examined my lymph nodes. Says my age of 38 makes it unlikely for it to be lymphoma. He ordered LDH (or is it LDH?) and ESR blood tests. Is this is good indicator? Or am I just getting the same run around?

    THE ROYAL RUNAROUND
    72,
    Yes sir you are getting the runaround and I mean royally!!! Sounds like you have an uncaring care giver there. Find yourself another Dr. and get rid of that JERK. We are talking about your health here. If they were real Drs. they would know you're at a prime age for lymphoma. Not saying that is what it is,but it needs to be checked out immediately. Get rid of the Jerk because you don't want this so called professional caring for you in any follow up.They don't care now so why would they care later? There are a few caring professionals still out there....I think. Good Luck.John (FNHL-1-4A-5/10)
  • KC13167
    KC13167 Member Posts: 215
    #9
    Nodes
    I'm surprised that your gyn did not order a sonogram of the breast after palpating some nodes and your negative mamo. If I were you, I would follow up on this. I would do just about anything to get that biopsy done. After reading today's post, I'm not impressed with the interest or level of aggression that your health team is taking. Please keep searching and pushing until you get a health care provider to listen to your concerns.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #10
    72graphics said:

    Just an update. Had my
    Just an update. Had my appointment today with the surgeon. Still don't feel like he's taking much of an interest. He barely examined my lymph nodes. Says my age of 38 makes it unlikely for it to be lymphoma. He ordered LDH (or is it LDH?) and ESR blood tests. Is this is good indicator? Or am I just getting the same run around?

    Need more...
    Hi,
    You need more done than getting a blood test. I'm no doctor, but swollen nodes should not be ignored. Please find another doctor..seriously! When you said this doctor called you a hypochondriac...well...if a doctor EVER said that to me...I'd have told him to kiss my you know what and never go back to him. Thats just me. Call your insurance company and tell them whats been going on and see what they suggest. My insurance co would want to know if a doctor was giving me the run-around, and I'm sure your would also. It can't hurt. Please keep us posted, and I'm really sorry you are having to go through this "lousy" doctor routine..it sucks, and it's soooo wrong.
    Best wishes...Sue (FNHL-2-3A-6/10)
  • welagold
    welagold Member Posts: 3
    #11
    Trying to get diagnosed
    I am not a Doctor but I am a person that research and pray for answers and the holy spirit always gives me the answer. Well, my husband was diagnosed with Hodgkins Non Lymphoma in 1993 and under gone radiation and chemo treatments but have been in remission, in that time period we converted our home over to all natural products and taken the harsh chemical and toxins out, because it is fact that these household products are destroying our bodies, however in 2008 he started back with the night sweats,mood swings and feeling fatigue, so after going to the doctor, they noticed that he has another lump growing in the same area as before, so we prayed and asked the holy spirit to intervene, apparently the radiation and chemo treatments from the cancer before destroyed some of his good cells as well as the bad, which still left room for disease and infection to set up. So what I did I researched and got him on a natural vitamin supplement that is the best in North American with an absorption rate of 85% compared to GNC, Vitamin World, Centrum, One a day at 3-7% so his body is getting the highest rate to recover and restore the immune system which has turned his whole system back to normal, the doctor didn't know what to do, because the before MRI and scans showed one thing and after showed nothing, at first they wanted to put him on all of the prescription and I said no because one side effects will affect the body and then the doctor gives something else to combat that side effects and more your body become immune to free radicals which destroys your body and break down our system so that all of these diseases and inflammation of pain can take over our bodies, so we have boost his immune system and he is doing great.

    I have a friend that was recently diagnosed with throat cancer and they give him alot of prescriptions to take along with radiation and chemo, however, his wife got him the vitamin supplement that my husband is taking and a few days ago, the doctors took him off the radiation and chemo, he was suppose to have many more treatments but the doctor said his immune system was healing faster than normal and we can only thank God for the supplement line.

    I was diagnosed last year in September with Fibroids and they wanted me to have a hysterectomy but I started drinking alkaline water along with increasing my intake of my vitamin supplements and after about 3 months, went back and nothing was found, our bodies are like vehicles but we only have one body, our bodies will restore itself but there are certain things we must do to protect and provide nourishment for it to restore properly.

    We are claiming victory for a great outcome with the doctor. Help is here for you, so just reach out. If you need the name and information just email me at welagoldinfo@yahoo.com
  • 72graphics
    72graphics Member Posts: 4
    #12
    welagold said:

    Trying to get diagnosed
    I am not a Doctor but I am a person that research and pray for answers and the holy spirit always gives me the answer. Well, my husband was diagnosed with Hodgkins Non Lymphoma in 1993 and under gone radiation and chemo treatments but have been in remission, in that time period we converted our home over to all natural products and taken the harsh chemical and toxins out, because it is fact that these household products are destroying our bodies, however in 2008 he started back with the night sweats,mood swings and feeling fatigue, so after going to the doctor, they noticed that he has another lump growing in the same area as before, so we prayed and asked the holy spirit to intervene, apparently the radiation and chemo treatments from the cancer before destroyed some of his good cells as well as the bad, which still left room for disease and infection to set up. So what I did I researched and got him on a natural vitamin supplement that is the best in North American with an absorption rate of 85% compared to GNC, Vitamin World, Centrum, One a day at 3-7% so his body is getting the highest rate to recover and restore the immune system which has turned his whole system back to normal, the doctor didn't know what to do, because the before MRI and scans showed one thing and after showed nothing, at first they wanted to put him on all of the prescription and I said no because one side effects will affect the body and then the doctor gives something else to combat that side effects and more your body become immune to free radicals which destroys your body and break down our system so that all of these diseases and inflammation of pain can take over our bodies, so we have boost his immune system and he is doing great.

    I have a friend that was recently diagnosed with throat cancer and they give him alot of prescriptions to take along with radiation and chemo, however, his wife got him the vitamin supplement that my husband is taking and a few days ago, the doctors took him off the radiation and chemo, he was suppose to have many more treatments but the doctor said his immune system was healing faster than normal and we can only thank God for the supplement line.

    I was diagnosed last year in September with Fibroids and they wanted me to have a hysterectomy but I started drinking alkaline water along with increasing my intake of my vitamin supplements and after about 3 months, went back and nothing was found, our bodies are like vehicles but we only have one body, our bodies will restore itself but there are certain things we must do to protect and provide nourishment for it to restore properly.

    We are claiming victory for a great outcome with the doctor. Help is here for you, so just reach out. If you need the name and information just email me at welagoldinfo@yahoo.com

    blood work
    I just called my dr. and talked to his nurse. She said my blood work was fine, so I asked her for the numbers. She said my ESR is 5 and my LDH is 439. I read that under 10 for ESR is normal and under 200 for LDH is normal. So how can 439 be normal?
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #13
    72graphics said:

    blood work
    I just called my dr. and talked to his nurse. She said my blood work was fine, so I asked her for the numbers. She said my ESR is 5 and my LDH is 439. I read that under 10 for ESR is normal and under 200 for LDH is normal. So how can 439 be normal?

    ldh level
    72,
    I am sure there are other factors involved in the reading,but give the Onc. nurse a call to check it out. John(FNHL-1-4A-5/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #14
    72graphics said:

    blood work
    I just called my dr. and talked to his nurse. She said my blood work was fine, so I asked her for the numbers. She said my ESR is 5 and my LDH is 439. I read that under 10 for ESR is normal and under 200 for LDH is normal. So how can 439 be normal?

    ldh level
    72,
    I am sure there are other factors involved in the reading,but give the Onc. nurse a call to check it out. John(FNHL-1-4A-5/10)
  • 72graphics
    72graphics Member Posts: 4
    #15
    COBRA666 said:

    ldh level
    72,
    I am sure there are other factors involved in the reading,but give the Onc. nurse a call to check it out. John(FNHL-1-4A-5/10)

    Hi John,
    Thanks for the
    Hi John,
    Thanks for the reply. I am still trying to get a diagnosis so I don't have an oncologist. This is the blood test the surgeon ordered instead of the biopsy that I was referred to him for by my gyno. I have swollen lymph nodes and was referred to a surgeon but he ordered esr and ldh blood tests instead. Then this morning the nurse says they are normal but when I looked up normal levels it says ldh is normal below 200 and mine is 439.... I'm just frustrated. I've been blown off again by another dr. I live in a small town and I don't know who to go to now.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #16
    72graphics said:

    Hi John,
    Thanks for the
    Hi John,
    Thanks for the reply. I am still trying to get a diagnosis so I don't have an oncologist. This is the blood test the surgeon ordered instead of the biopsy that I was referred to him for by my gyno. I have swollen lymph nodes and was referred to a surgeon but he ordered esr and ldh blood tests instead. Then this morning the nurse says they are normal but when I looked up normal levels it says ldh is normal below 200 and mine is 439.... I'm just frustrated. I've been blown off again by another dr. I live in a small town and I don't know who to go to now.

    Keep searching...
    Hi 72,
    Don't give up, keep searching for a surgeon to do the biopsy. Call your insurance co and tell them what is going on. They may be able to point you in the right direction. Just remember...you are your own best advocate for your health...if you don't pursue care, it won't come looking for you! Find the closest large city in your location and do some research on cancer clinics in that area. You may need to find someone to help you fight for some answers. Maybe you have a cancer support group in your town or close by where someone there can open some doors for you. The point is...don't stop looking. Please keep us posted and best wishes to you. Sue (FNHL-2-3A-6/10)

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