It's always something... oncologist thinks I have splenic marginal zone lymphoma

zsazsa1
zsazsa1 Member Posts: 568 Member
in Uterine/Endometrial Cancer #1

Well, the enlarged spleen that the first gyn med oncologist said was due to cirrhosis (even though I don't drink, and had normal liver function), now appears to be splenic marginal zone lymphoma, a slow-growing lymphoma, and I've probably had it for at least 4 years.

I'm having the  PET/CT on Wednesday to see whether I'm having a recurrence of the UPSC/clear cell, in light of the slow but steady rise in my Ca125.  The flow cytometry on my peripheral blood came back suspicious for a slow-growing B call lymphoma.  The lymphoma oncologist (recently trained at MD Anderson) wants some more tests, and of course the PET/CT, and then is recommending Rituximab.  Frankly, from what I'm reading about it, if the lymphoma is confined to my big spleen, I'd almost rather just have it out laparascopically, and go on with my life, and save the rituximab for if it progresses.  I mean, I have to think about how I want to spend my time at this point, if I'm not having a recurrence of the UPSC.  I think that recovery from a lap splenectomy will be easier than going through rituximab, but I don't have enough info yet.

I just cannot believe this.  I'm really pretty shell-shocked.  Could this all be the result of the approximately 5 years of poisoning with the Chinese NDMA-contaminated valsartan?  Just incredible - two cancers at once, and no identifiable genetic syndrome.

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Comments

  • Forherself
    Forherself Member Posts: 1,018 Member
    #2
    It is shocking to hear.

    I am SO glad that you went to Yale.  Cirrhosis with  normal liver function tests?   I am so glad you have seen someone else.  At this point I agree with considering a splenectomy.   Lymphoma is slow growing.  I have a friend who has it, and been on medication for it for 20 years.  By the way, his father and sister also have it.  I'm not sure its the same type, but at least now you are going to get a definitive diagnosis.  I hope our medication stops coming from China.   Why add that to everything else.  You are right to wonder.  AND hopefully you are not having a recurrence and CAN go on with your life.  

     

     

     

  • Tamlen
    Tamlen Member Posts: 343 Member
    #3
    Dang

    Your head must be spinning with such unexpected and unwelcome news. I'm so sorry, zsazsa.

    I certainly understand your thinking about surgery over the rituximab as you consider how you want to spend your time now. We'll be here for you as you look into your options and work through a decision.

    {{ hug }}

    Tamlen

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited February 2020 #4
    Sorry to hear this

    As you know, just went through trying to decide on my treatment and trying to get all the information and decide is exhausting. Hang in there and get all the input you can and need. 

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #5
    Next step is pet cct.  Once

    Next step is pet cct.  Once the results of that are in, I can plan.  It wasn't the doc at Yale who realized it.  I had a liver biopsy and pressure measurement of the venous drainage from the liver to prove I didn't have cirrhosis (boy, that was NOT fun).  Then my gyn med oncologist ordered a bone marrow biopsy (also a pleasure) which showed nothing.  I then sought out a lymphoma specialist - they have a new one at Hartford.  She ordered a lot of tests, which were all normal, except that somehow, they forgot to order the peripheral blood flow cytometery.  When I went back for follow up, she realized it hadn't been done.  I had it done with my next herceptin.  Yale saw ithe results last week, told me it was okay.  But I looked at it, and thought, "This doesn't look okay."  I called her for another follow up, which was yesterday, which was where she made the likely diagnosis.  The diagnosis does fit clinically with what's been going on.

    The way I look at it, this is an indolent lymphoma.  Hopefully it won't convert over to an aggressive lymphoma.  I'll have the treatment, either rituximab or splenenctomy.   And take it day by day after that.  It does seem kind of odd, though, that all these gyn med oncs didn't consider lymphoma.  They all knew I had an enlarged spleen.  But of course, we had bigger fish to fry, with the UPSC. 

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #6
    I'm so sorry. We're here for

    I'm so sorry. We're here for you whatever option you decide. I worry about all the China stuff as well. It does make you wonder.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #7
    So sorry!

    Thank God you are so diligent. I'm so sorry you're having to go through this. BTW, my brother has cirrhosis due to obesity and his liver function tests continue to be normal. 

  • MAbound
    MAbound Member Posts: 1,175 Member
    #8
    Sucks

    You knew something was going on and not knowing was certainly a big weight to carry. I hope it helps to have a clue of about it now and potential plans of action. I wish the news were better, but it sounds like you have things well under control. The surgery almost sounds like it would be easier than some of the testing you've had getting to the bottom of what's going on! You are one strong and persistant woman! Thank you for being here with us!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #9
    So sorry for this news

    So sorry for this news zsazsa1. I'm glad you are finally starting to get some answers. It is incredible how much we have to research our own symptoms to get anyone to pay attention. It sounds like you have found a great doctor to help you through this one. Please let us know your next steps. We are all here for you.

    Love and Hugs,

    Cindi

  • Forherself
    Forherself Member Posts: 1,018 Member
    #10
    zsazsa1 said:

    Next step is pet cct.  Once

    Next step is pet cct.  Once the results of that are in, I can plan.  It wasn't the doc at Yale who realized it.  I had a liver biopsy and pressure measurement of the venous drainage from the liver to prove I didn't have cirrhosis (boy, that was NOT fun).  Then my gyn med oncologist ordered a bone marrow biopsy (also a pleasure) which showed nothing.  I then sought out a lymphoma specialist - they have a new one at Hartford.  She ordered a lot of tests, which were all normal, except that somehow, they forgot to order the peripheral blood flow cytometery.  When I went back for follow up, she realized it hadn't been done.  I had it done with my next herceptin.  Yale saw ithe results last week, told me it was okay.  But I looked at it, and thought, "This doesn't look okay."  I called her for another follow up, which was yesterday, which was where she made the likely diagnosis.  The diagnosis does fit clinically with what's been going on.

    The way I look at it, this is an indolent lymphoma.  Hopefully it won't convert over to an aggressive lymphoma.  I'll have the treatment, either rituximab or splenenctomy.   And take it day by day after that.  It does seem kind of odd, though, that all these gyn med oncs didn't consider lymphoma.  They all knew I had an enlarged spleen.  But of course, we had bigger fish to fry, with the UPSC. 

    I am glad you have been so proactive

    And been your own physician.  But someimes I see the gyne onc needs to refer patients when they are treating conditions outside the gyne system.   Skin diseases, and other conditions for their paitents that need another specialist.  You have been thgough so much  to get your diangosis.  Or probable diagnosis.  I am still hoping for a good PET scan.

     

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #11
    I'm sorry. Life is crazy, isn

    I'm sorry. Life is crazy, isn't it? I wonder if the lymphoma affects the ca125 or interferes with the test. It sounds like the diagnosis is at least a tiny bit uncertain, so maybe splenectomy would at least lead ti certainty with the pathology evaluation.

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #12
    LisaPizza said:

    I'm sorry. Life is crazy, isn

    I'm sorry. Life is crazy, isn't it? I wonder if the lymphoma affects the ca125 or interferes with the test. It sounds like the diagnosis is at least a tiny bit uncertain, so maybe splenectomy would at least lead ti certainty with the pathology evaluation.

    Yeah, I've been wondering

    Yeah, I've been wondering about that too, whether that could be causing the Ca125 to rise.  Well, the pet/ct will lead to biopsies, because any area that lights ujp could be UPSC recurrence, or spread of lymphoma.  If it's just in the spleen, it's either splenectomy or rituximab, or both.  I read that people can go many years with the slow, indolent lymphoma - and that's not as scary as a UPSC recurrence.  At first I was shocked, now I'm just kind of numb/paralysed.  Waiting game until I have more info.

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #13
    Just finished pet ct. Good

    Just finished pet ct. Good news! The radiologist came and spoke to me after taking a quick look. Preliminary read is no evidence Mets, and the spleen uptake is relatively low, so probably an indolent b cell lymphoma, no evidence Mets. I'll have to wait for final reading, but I'm more inclined to have the spleen taken out because it's pressing on my stomach, causing nausea. Really, this may be as good as it could have been, under the circumstances. Thank you all for the support. Priceless to be able to share with people who understand.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #14
    zsazsa1 said:

    Just finished pet ct. Good

    Just finished pet ct. Good news! The radiologist came and spoke to me after taking a quick look. Preliminary read is no evidence Mets, and the spleen uptake is relatively low, so probably an indolent b cell lymphoma, no evidence Mets. I'll have to wait for final reading, but I'm more inclined to have the spleen taken out because it's pressing on my stomach, causing nausea. Really, this may be as good as it could have been, under the circumstances. Thank you all for the support. Priceless to be able to share with people who understand.

    Glad to hear it!

    Glad to hear it!

  • Forherself
    Forherself Member Posts: 1,018 Member
    #15
    zsazsa1 said:

    Just finished pet ct. Good

    Just finished pet ct. Good news! The radiologist came and spoke to me after taking a quick look. Preliminary read is no evidence Mets, and the spleen uptake is relatively low, so probably an indolent b cell lymphoma, no evidence Mets. I'll have to wait for final reading, but I'm more inclined to have the spleen taken out because it's pressing on my stomach, causing nausea. Really, this may be as good as it could have been, under the circumstances. Thank you all for the support. Priceless to be able to share with people who understand.

    Awesome news

    I am so happy for you.  I thought it is so much better no serous spread.   What a roller coaster ride you have had.   Congratulations on your determination.   It has paid off.   Hugs to you.   

  • MAbound
    MAbound Member Posts: 1,175 Member
    #16
    Yipee?

    Well, I'm sure having your spleen out won't be a picnic, but otherwise that is good news! Picture me doing my Snoopy happy dance!

  • MAbound
    MAbound Member Posts: 1,175 Member
    edited February 2020 #17
    In case you need a visual!

    Sorry, it won't paste. :(

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #18
    That's okay, I grew up with

    That's okay, I grew up with Peanuts, and the Snoopy dance image is ever with me!

    I meet with the lymphoma oncologist on Friday to discuss options.  The recommended treatment for this is actually rituximab, but without tissue, we won't really know what we're dealing with, so I think i do want the splenectomy.  If they can do it laparascopically, I can't imagine it would be any worse than the lap hysterectomy.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #19
    zsazsa1 said:

    That's okay, I grew up with

    That's okay, I grew up with Peanuts, and the Snoopy dance image is ever with me!

    I meet with the lymphoma oncologist on Friday to discuss options.  The recommended treatment for this is actually rituximab, but without tissue, we won't really know what we're dealing with, so I think i do want the splenectomy.  If they can do it laparascopically, I can't imagine it would be any worse than the lap hysterectomy.

    Good luck to you, Zsa Zsa.

    You knew something was not right and were proactive about getting to the bottom of it. It sure pays to listen to our bodies. Hope your coming surgery gives you the necessary answers to enable your best treatment plan. I used to think that people having to fight two cancers was rare, but no more after reading our boards. Let us know how it goes.

     

    Denise

  • oldbeauty
    oldbeauty Member Posts: 379 Member
    #20
    zsazsa1 said:

    Just finished pet ct. Good

    Just finished pet ct. Good news! The radiologist came and spoke to me after taking a quick look. Preliminary read is no evidence Mets, and the spleen uptake is relatively low, so probably an indolent b cell lymphoma, no evidence Mets. I'll have to wait for final reading, but I'm more inclined to have the spleen taken out because it's pressing on my stomach, causing nausea. Really, this may be as good as it could have been, under the circumstances. Thank you all for the support. Priceless to be able to share with people who understand.

    Good news!

    Thank you for sharing.  That you are a physician gives us all an insight into symptoms and analysis that is so valuable to us all.  Best wishes for the treatment you seek.  Oldbeauty

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    #21
    Thanks for the update

    And I'm so glad it's good news.  How strange that they think you had that even before the uterine cancer was discovered.  And thank you for sharing your knowledge with us all. Knowledge is power and this is a great source.

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