Lymphoma vs Sarcoid

TNgirl111619
TNgirl111619 Member Posts: 72 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi all,

 

After lots of labwork and tests (chest xra, abdominal ultrasounds, ct scans) it has almost been diagnosed that I have a type of lymphoma. I am completely 100% new at this. I have an appointment with a surgeon Monday to excise a swollen lymph node in my neck. They will have a definitive diagnosis after this. After meeting with a pulmonolgist Tuesday to rule out Sarcoid, he is pretty much thinking it is a lymphoma vs sarcoid. I am anxious and nervous about the chemo/radiation that I will most likely be going through soon. Does anyone that has had this have any suggestions or opinions or any advice they can give me pertaining to this? Thanks so much!

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Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2
    Sorry to hear this

    On another, now defunct cancer forum, the watchphrase was "You do not have cancer until a pathologist says you have cancer." Doctors, nurses, oncologists - you name it - can offer opinions, but the pathologist casts the deciding vote. Clearly something strange is goig on, but what? There are 68,070 known human illnesses and conditions. 

    What is the backstory? Am guessing that a lot took place to bring you here.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #3
    No ……

    I have it on good authority there 68,071 potential illnesses (LOL). However I agree that you need to wait for a definitive answer. In the meantime no need to worry yourself unncessarily. There is lots of info on lymphoma and sarcoid treatment options available online And from the NCI. I have an app on my iphone which goes through the varios types of lymphoma and treatment options. Oops, count just changed To 68,072. In any case, if you do find you have lymphoma there are lots of good people here who have gone through it and who will be happy to offer non-professional advice on dealing with it. That said, your oncologist/hematologist is the best source Of advice and information. Many forms of lymphoma are very very treatable and allow many of us to live a normal lifespan. Darn  the count of possible illnesses just changed again - 68,168.3 - but lymphoma is still one of the most treatable.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited June 2021 #4
    ShadyGuy said:

    No ……

    I have it on good authority there 68,071 potential illnesses (LOL). However I agree that you need to wait for a definitive answer. In the meantime no need to worry yourself unncessarily. There is lots of info on lymphoma and sarcoid treatment options available online And from the NCI. I have an app on my iphone which goes through the varios types of lymphoma and treatment options. Oops, count just changed To 68,072. In any case, if you do find you have lymphoma there are lots of good people here who have gone through it and who will be happy to offer non-professional advice on dealing with it. That said, your oncologist/hematologist is the best source Of advice and information. Many forms of lymphoma are very very treatable and allow many of us to live a normal lifespan. Darn  the count of possible illnesses just changed again - 68,168.3 - but lymphoma is still one of the most treatable.

    "Hits"

    Shady,

    Many years ago, I was in a political argument online with a friend (unbelievable, I know) who said that a politician had to be a skunk because of how many Goggle hits the guy had.  This is not uncommon 'reasoning' in our day.

    I responded that there were 3.2 million returns for a search of 'Nose Digging.'     The number may have gone up or down since then, depending on the research.   

    Remember, follow the science....  Gotta watch closely, because it changes daily.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited June 2021 #5
    Sarcoid

    TN,

    The good news is that you will know somthing soon (when the biopsy comes back).  It is of course possible that the neck node has different causation than the lung nodes, but the doctors will figure that out.  A sister-in-law was diagnosed decades ago with Sarcoidosis, filling both lungs.  While sarcoidosis is NOT cancer (it is an autoimmune disorder), it is not automatically a blessing to have it instead of a lymphoma.   Lymphomas are commonly among the most controllable or even curable of cancers, but sarcoidosis has no cure, and last I heard from her, few treatments.  It basically waxes and wanes, and is conrolled mostly with Prednisone, but at least it does usually respond well to Prednisone.

     

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited June 2021 #6
    Thanks all

    Yes, it definitely took a lot to get me here and this was found incidentally. Long story...I was anemic a couple of years ago and it had to be treated with iron infusions. I have received all of my reports from the hematologist/oncologist that treated me for this. I felt better for about 6 months and then I began to feel fatigued again. I did not have a follow up appointment for a year, because at that time all of my labs were within range. I was told I could come in at anytime to have labs drawn, so I went periodically because the fatigue wasn't going away. After labs were reviewed my hemoglobin was either in range or a tad low, my platelets were elevated, and my iron was low but my ferritin high so no need for more infusions. So I continued to trust what the doctor said. Anywho, in May I was going to have an elective surgery, and when I went for my pre-op the nurse called me and told me that my wbc was elevated. I contacted the hem/onc office to ask what they had been the last two times I was there. They were 14.4 in October, 11.5 in April (after having covid), and 13.92 at the pre-op. Which goes to tell me, my wbc has been elevated for months and prior to October as well. My sister and a close friend of my husband are both nurse practitioners and said this was a red flag and no matter your speciality, this should have been looked into. I was able to get in with a new hematologist who works for the same organization that I do and he started researching all of this and ran more labs than I can count, but he did all he could and ordered the chest X-ray and cat scan and they found what they referred to as "grapefruit" size masses in my mediastinum and now the node in my neck. I feel like this was over looked and should have been caught before. I know that I don't have a definitive answer yet and I and keeping a positive attitude. I will meet with a surgeon on Monday to excise the node from my neck and get the results. Thank you all for your responses. I have an amazing support group of family and friends but it also helps to talk to others going through or who have been through similar experiences, because nobody knows the feeling until you're personally going through it. I will keep you all updated. 

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited June 2021 #7
    Also

    Also, may I add, the first hematologist who prescribed the infusions told me last week not to worry about my wbc because it is probably due to Covid. I feel if he would review everything he would see that they were actually higher before Covid than a couple weeks after I got over it. And were also elevated prior to that. I have researched and researched lymphoma and sarcoid. My symptoms closely relate to lymphoma as I have drenching night sweats, fatigue, on top of what the x-ray showed and then pulmonologist described, who has an outstanding reputation where I live and has done this for 36 years. Let me be clear, my appointment with the surgeon is Monday and then the surgery will be scheduled. I have a strong faith in God, and I will take any prayers I can get. 

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    edited June 2021 #8
    Night sweats

    Hopefully the biopsy will tell you what you need to know. There are many kinds of lymphoma and also many types of chemotherapy used based on the diagnosis. While Chemo is definitely not enjoyable depending on the type it can be much easier than expected. There are side effects but it is not usually as rough as the stories we hear from years ago. When you find out your results it will be much easier for people to give you some guidance in what to expect. Pray and hope for good results.

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited June 2021 #9
    Sandy Ray said:

    Night sweats

    Hopefully the biopsy will tell you what you need to know. There are many kinds of lymphoma and also many types of chemotherapy used based on the diagnosis. While Chemo is definitely not enjoyable depending on the type it can be much easier than expected. There are side effects but it is not usually as rough as the stories we hear from years ago. When you find out your results it will be much easier for people to give you some guidance in what to expect. Pray and hope for good results.

    Thank you so much Sandy. Yes,

    Thank you so much Sandy. Yes, I hope to have an answer soon regardless of what it is.  I'm trying to be positive. I truly believe God can perform miracles and there is a reason for everything is my outlook on life. I feel blessed that this was caught when it was and I will take it day by day, one step at a time.

  • po18guy
    po18guy Member Posts: 1,508 Member
    #10
    Ask big!

    In 2014-2015, I ended up with three simultaneous cancers (two T-Cell Lymphomas and MDS, which is a precusrsor to AML). Essentially a 0% chance of surviving. I had a stem cell transplant in 2015 and there has been no sign of either lymphoma for those six years, and no sign of the MDS in my marrow for four years. So, if you need a miracle, ask BIG. 

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited June 2021 #11
    po18guy said:

    Ask big!

    In 2014-2015, I ended up with three simultaneous cancers (two T-Cell Lymphomas and MDS, which is a precusrsor to AML). Essentially a 0% chance of surviving. I had a stem cell transplant in 2015 and there has been no sign of either lymphoma for those six years, and no sign of the MDS in my marrow for four years. So, if you need a miracle, ask BIG. 

    Wow, that's amazing and glad

    Wow, that's amazing and glad that you made it through all of that! Definitely asking big!

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #12
    Max Former Hodgkins Stage 3 said:

    "Hits"

    Shady,

    Many years ago, I was in a political argument online with a friend (unbelievable, I know) who said that a politician had to be a skunk because of how many Goggle hits the guy had.  This is not uncommon 'reasoning' in our day.

    I responded that there were 3.2 million returns for a search of 'Nose Digging.'     The number may have gone up or down since then, depending on the research.   

    Remember, follow the science....  Gotta watch closely, because it changes daily.

    Well …

    all I know for sure is there's 1352 guitar pickers in Nashville!

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #13
    TNgirl111619 said:

    Wow, that's amazing and glad

    Wow, that's amazing and glad that you made it through all of that! Definitely asking big!

    I agree with you

    PO's story is an inspiration to all of us.

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    #14
    Update

    Hi all,

    I had surgery for lymph node biopsy Thursday and was contacted by my doctor Friday afternoon with a confirmed diagnosis of lymphoma. Pathology is still pending and will know specifics next week. I will update when I know. Thanks!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited July 2021 #15
    TNgirl111619 said:

    Update

    Hi all,

    I had surgery for lymph node biopsy Thursday and was contacted by my doctor Friday afternoon with a confirmed diagnosis of lymphoma. Pathology is still pending and will know specifics next week. I will update when I know. Thanks!

    Ok

    You are making progress, and cure depends on accurate diagnosis.   While a curosry review in the lab can confirm lymphoma, nailing down the strain can take a lot longer, sometimes over a week.  There are over 50 W.H.O.-recognized forms of NHL, and five forms of Hodgkins.  Prognosis, treatment, etc. varies wildly, based upon type.

  • po18guy
    po18guy Member Posts: 1,508 Member
    edited July 2021 #16
    Rats! But...

    ...in a twisted sort of way, it can be comforting to know the enemy - now that it is unmasked. You have both a target and a goal. Faith, hope and love can and will get you through this. 

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited July 2021 #17
    po18guy said:

    Rats! But...

    ...in a twisted sort of way, it can be comforting to know the enemy - now that it is unmasked. You have both a target and a goal. Faith, hope and love can and will get you through this. 

    I completely agree and that

    I completely agree and that is how I felt when I got the phone call. I expected that so it wasn't such a shock, and I'm glad I at least know what it is until the rest of the testing is completed. Thank you, and Yes faith, hope, and love!

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    #18
    Max Former Hodgkins Stage 3 said:

    Ok

    You are making progress, and cure depends on accurate diagnosis.   While a curosry review in the lab can confirm lymphoma, nailing down the strain can take a lot longer, sometimes over a week.  There are over 50 W.H.O.-recognized forms of NHL, and five forms of Hodgkins.  Prognosis, treatment, etc. varies wildly, based upon type.

    I have had some people tell

    I have had some people tell me to ask for a second opinion. Is this something you or anyone else recommends?

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    #19
    Also

    Also, are there any good vitamins or supplements that anyone recommends to take or have taken?

  • PBL
    PBL Member Posts: 369 Member
    #20

    As a rule of thumb, now that you have an actual lymphoma diagnosis (and soon to be complete...) I strongly suggest you ask your hematologist what s/he thinks you need. 

    Depending on your treatment - and bear in mind that in some cases, your treatment may initially consist in "watch and wait", i.e. NO actual intervention at all - some foods (not to mention vitamins or supplements) may not be compatible with the medications you are given.

    I hope this helps.

    PBL

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #21
    Good attitude!

    Bad news is you have lymphoma. Good news is it's only lymphoma! This is a very treatable disease and treatment options are expanding rapidly.

    Best advice is avoid all vitamins and supplements during treatment. After treatment consult with your medical team before taking any supplements. Be skeptical of claims by people who want to sell you something! Tennessee strong!

    When you see this, believe it!   "This product is not intended to diagnose, treat, cure, or prevent any disease"

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