Afraid of reoccurrence

Rnikki28
Rnikki28 Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi. I've never wrote on a site before. I want someone to talk to and don't want to keep bothering my loved ones with complaints or admit out loud what I am really scared of. I'm 38 now but when I was 20/21 and 29 weeks pregnant I had only 1 swollen clavicle node and abso no other symptoms. I was diagnosed w/ Hodgkins stage 2a modular sclerosing type. Here I am now and for the past year + have been trying to figure out what's wrong and my symptoms are worse and no answers. It was first aching along my right side neck mainly when I'd wake up everyday. I then discovered nodules all over thyroid. Blood work/ ultrasound lead to biopsy. Was neg On left said and inconclusive on right. Tested on molecular level to be neg. symptoms then became hot/cold flashes to point I would be dizzy and nauseous. Neck still painful entire time. Doc said try allergy meds. No help. lymoh Node right below jaw line would swell off/on. Ct didnt catch it. Now: my entire side of neck from thyroid back is physlocally swollen and painful all the time. Saw Endocrinologist and they said thyroid ok and swelling is lymph nodes again but now they won't go down. I am only referred to an ENT. I see Tuesday. I feel mad, helpless, and scared. I am tired of no one listening and not helping enough. I am scared I won't find relief and I have a feeling as time progresses that I am ruling out all possibilities and leaving me with reoccurrence of Hodgkin. It's like a gut feeling that just keeps getting reasurracne. Can someone at least give me their honest harsh opinions. And thoughts of what to do next. All blood work again is ok but was always before even through my treatments.

i am at risk since it's been 10+ yrs is average for reoccurrence and I had chemo and radiation in my neck only. 
thank you all!!!!

renee

Comments

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #2
    your biopsy

    Was the biopsy incisional or with a needle (FNA)?

  • Rnikki28
    Rnikki28 Member Posts: 4
    edited November 2019 #3
    ShadyGuy said:

    your biopsy

    Was the biopsy incisional or with a needle (FNA)?

    FNA. i believe he took more

    FNA. i believe he took more samples from my right side (the one w/issues)then the left. I have been trying to get him to look at it further but he won't even acknowledge my symptoms could be related to the thyroid And insists that my biopsy is ok so unless he "feels" my thyroid is enlarged more than he won't repeat. It was originally a hair over 2 cm. I just don't completely understand the molecular testing. My research shows me that it is testing for markers or genetics only. So i would assume I could still have an issue and it's a watch and see but w/ symptoms additional swelling you'd think he'd be concerned.

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    edited November 2019 #4
    Rnikki28 said:

    FNA. i believe he took more

    FNA. i believe he took more samples from my right side (the one w/issues)then the left. I have been trying to get him to look at it further but he won't even acknowledge my symptoms could be related to the thyroid And insists that my biopsy is ok so unless he "feels" my thyroid is enlarged more than he won't repeat. It was originally a hair over 2 cm. I just don't completely understand the molecular testing. My research shows me that it is testing for markers or genetics only. So i would assume I could still have an issue and it's a watch and see but w/ symptoms additional swelling you'd think he'd be concerned.

    my non professional opinion.

    we are similar in that when I was originally diagnosed at stage 4 my blood work was good and my only palpable node was on the clavicle. I personally do not trust FNA as they frequently give false negative results. I would say deal with an oncologist/hematologist only and insist on an incisional biopsy. My experience with ENTs has not been good. Hopefully our member Max will chime in. He is very good at articulating these things.

  • lindary
    lindary Member Posts: 711 Member
    #5
    lymph nodes

    I was diaagnosed with Follicular lymphoma. The nodes around my neck and in the armpit were fine. My Dr found an enlarged node in the andomen which was the cause of some bowel issues I had. For me the needle biopsy showed the cancer. After several years of reading posted comments I would agree with Shady and get an appointment with an oncologist/hematoligist.

     

  • po18guy
    po18guy Member Posts: 1,505 Member
    #6
    Cancer produces symptoms but...

    ...symptoms to not necessariliy produce cancer. Your immune system took a hit from the prior treatment. It can act up, at any time, for any reason or no reason at all. 2019 has been a completely unusual year, IME, for the variety of unknown viruses in circulation. I am fighting #6 for 2019 as we speak. Until and unless a pathology report states that it is a recurrence, best for peace of mind to think that you do not have cancer. It is a bridge that we worry about, but which we may very well never have to cross.

    Worst case scenario: As time has passed, you now have more options than ever, a far greater knowledge base from which to be treated, new drugs and regimens, clinical trials and an even higher chance of long-term, even liftime remission. This is the worst case.

    At this point, no one has said that you have a relapse. My advice is to keep busy enjoying each moment of life, and keep doctor busy with diagnostics.

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #7
    ShadyGuy said:

    my non professional opinion.

    we are similar in that when I was originally diagnosed at stage 4 my blood work was good and my only palpable node was on the clavicle. I personally do not trust FNA as they frequently give false negative results. I would say deal with an oncologist/hematologist only and insist on an incisional biopsy. My experience with ENTs has not been good. Hopefully our member Max will chime in. He is very good at articulating these things.

    Fact is ...

    Regardless of what some people on here will tell you, your concern about relapse is valid. Get it checked out by a hematologist or oncologist. It could be a "mystery virus" but even in that unlikely event the symptoms are serious enough to draw concern and warrant treatment. Remember that essentially your white blood cells are your immune system, or at least the majority of it, and do cause a lot of other auuto-immune conditions. Please check it out.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #8
    ShadyGuy said:

    my non professional opinion.

    we are similar in that when I was originally diagnosed at stage 4 my blood work was good and my only palpable node was on the clavicle. I personally do not trust FNA as they frequently give false negative results. I would say deal with an oncologist/hematologist only and insist on an incisional biopsy. My experience with ENTs has not been good. Hopefully our member Max will chime in. He is very good at articulating these things.

    Worry

    Renee, (one of my favorite names, incidentally)

    The last sentence in your post said in-effect that "the time is right" for you to relapse, since most HL relapse comes after ten years.   You are closer to 20 years since remission, and actually the overall statistical liklihood of relapsing from classical Hodgkins (of which your strain was a variant) is extremely low.  I had the one non-classical strain (NLPHL), which is the most prone to relapse of all HLs, but even NLPHL relapses at only around 15% (NLPHL is in essence the Follicular/indolent version of HL).   In other words, most cHLs do not ever recur.  I do not recall the lifetime freedom from failure (relapse) liklihood of classical HL, but it is well under 15%.  Mathematically, then, at no point are you "ripe" for relapse.

    Worry is reasonable, and do insist on proper monitoring.  Shady recalls my oft-repeated adage of Don't let an ENT antibiotic you to death, via their tendency to always deny cancer and treat issues with antibiotics for long periods with no improvement.   And I also agree with all here that aspirtional biopsies are to be avoided; insist on surgical removal of the node instead.   We are interested in your journey and what you discover regarding all of this.

     

  • Rnikki28
    Rnikki28 Member Posts: 4
    #9
    Max Former Hodgkins Stage 3 said:

    Worry

    Renee, (one of my favorite names, incidentally)

    The last sentence in your post said in-effect that "the time is right" for you to relapse, since most HL relapse comes after ten years.   You are closer to 20 years since remission, and actually the overall statistical liklihood of relapsing from classical Hodgkins (of which your strain was a variant) is extremely low.  I had the one non-classical strain (NLPHL), which is the most prone to relapse of all HLs, but even NLPHL relapses at only around 15% (NLPHL is in essence the Follicular/indolent version of HL).   In other words, most cHLs do not ever recur.  I do not recall the lifetime freedom from failure (relapse) liklihood of classical HL, but it is well under 15%.  Mathematically, then, at no point are you "ripe" for relapse.

    Worry is reasonable, and do insist on proper monitoring.  Shady recalls my oft-repeated adage of Don't let an ENT antibiotic you to death, via their tendency to always deny cancer and treat issues with antibiotics for long periods with no improvement.   And I also agree with all here that aspirtional biopsies are to be avoided; insist on surgical removal of the node instead.   We are interested in your journey and what you discover regarding all of this.

     

    Thank you for responding. I

    Thank you for responding. I saw the ENT today. Yes he did put me on antibiotics first but surprisingly I am okay with this for now. today was the first time this entire year I felt taken care of. He went over my history with a fine tooth comb and shared sympathy for my journey. He scoped me and discussed everything in great detail and felt my nodules. He did state the mass was NOT my thyroid but in deed my lymph node. He is only putting me on antibiotics for 10 days and I have a follow up appointment.  plan is if node is still swollen he will CT and see what is enlarged so he knows what he needs to biopsy. (lymph nodes or thyroid) He was honest about all my options. He said I have some inflammation and drainage but no puss indicating infection but could still be one or issue would be thyroid related or revealed in lymph node biopsy. so I am now waiting. I just finally feel better that someone cares to take care of it a little more. 
    I appreciate all of you for listening to me so far and helping me while I have been every emotional. this is a beautiful site with amazing people.

    i will keep you updated.

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #10
    Max Former Hodgkins Stage 3 said:

    Worry

    Renee, (one of my favorite names, incidentally)

    The last sentence in your post said in-effect that "the time is right" for you to relapse, since most HL relapse comes after ten years.   You are closer to 20 years since remission, and actually the overall statistical liklihood of relapsing from classical Hodgkins (of which your strain was a variant) is extremely low.  I had the one non-classical strain (NLPHL), which is the most prone to relapse of all HLs, but even NLPHL relapses at only around 15% (NLPHL is in essence the Follicular/indolent version of HL).   In other words, most cHLs do not ever recur.  I do not recall the lifetime freedom from failure (relapse) liklihood of classical HL, but it is well under 15%.  Mathematically, then, at no point are you "ripe" for relapse.

    Worry is reasonable, and do insist on proper monitoring.  Shady recalls my oft-repeated adage of Don't let an ENT antibiotic you to death, via their tendency to always deny cancer and treat issues with antibiotics for long periods with no improvement.   And I also agree with all here that aspirtional biopsies are to be avoided; insist on surgical removal of the node instead.   We are interested in your journey and what you discover regarding all of this.

     

    Max

    what you say is very true BUT .... the odds of getting any lymphoma in the first place are much smaller than the 15% chance of relapse you cite. Not sure but I think it is less than 2% probability for the population at large. 1/7 chance of a man getting prostate cancer (14%) 1/8 chance of a woman getting breast cancer (12.5%) less than 1% chance of contacting Hodgkins in the first place. So 15% is some cause to be alert to relapse. If you take away those who die of accidents etc a Hodgkins survivor over 60 probably has a much higher than 15% chance of relapse. Just saying. I take it you would never buy a lottery ticket? You are a good man and I value your insights. I just remember the Drs. who poopoo'd my concerns about cancer with arguments similar to yours. It nearly cost me my life. Don't obsess with relapse but be alert to it. Odds are definitely in your favor. Sometimes those hoofbeats are zebras, not horses.

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #11
    po18guy said:

    Cancer produces symptoms but...

    ...symptoms to not necessariliy produce cancer. Your immune system took a hit from the prior treatment. It can act up, at any time, for any reason or no reason at all. 2019 has been a completely unusual year, IME, for the variety of unknown viruses in circulation. I am fighting #6 for 2019 as we speak. Until and unless a pathology report states that it is a recurrence, best for peace of mind to think that you do not have cancer. It is a bridge that we worry about, but which we may very well never have to cross.

    Worst case scenario: As time has passed, you now have more options than ever, a far greater knowledge base from which to be treated, new drugs and regimens, clinical trials and an even higher chance of long-term, even liftime remission. This is the worst case.

    At this point, no one has said that you have a relapse. My advice is to keep busy enjoying each moment of life, and keep doctor busy with diagnostics.

    Symptoms ...

    are the result of an event, not the cause. 

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #12
    ShadyGuy said:

    Max

    what you say is very true BUT .... the odds of getting any lymphoma in the first place are much smaller than the 15% chance of relapse you cite. Not sure but I think it is less than 2% probability for the population at large. 1/7 chance of a man getting prostate cancer (14%) 1/8 chance of a woman getting breast cancer (12.5%) less than 1% chance of contacting Hodgkins in the first place. So 15% is some cause to be alert to relapse. If you take away those who die of accidents etc a Hodgkins survivor over 60 probably has a much higher than 15% chance of relapse. Just saying. I take it you would never buy a lottery ticket? You are a good man and I value your insights. I just remember the Drs. who poopoo'd my concerns about cancer with arguments similar to yours. It nearly cost me my life. Don't obsess with relapse but be alert to it. Odds are definitely in your favor. Sometimes those hoofbeats are zebras, not horses.

    exact numbers

    The odds of getting Hodgkins are 512 in 100,000 or .512 %. 15.000% seems pretty big compared to that. Its kinda like a lottery, the odds of any one person winning are minute but the fact that someone will win is almost a certainty. That's why people check their lottery numbers and also why we watch for relapse. 

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