My husband NHL..... remission new issues...

mandzsmomma
mandzsmomma Member Posts: 4
edited June 2017 in Lymphoma (Hodgkin and Non-Hodgkin) #1

June 2015 my husband underwent surgery partial parodictomy to remove a necrotic salivary gland. They dx him with Sjogren's and then the Biopsy came back... differential: marginal/mantle/CLL he was treated with 12 radiation sessions and has had PET every 6 months since. Blood work points to Sjogrens but other antibodies are all wonky. So far PETS normal... in Feb this past year he had epidymitis and missed some work. March 1 they do PET due to gland on opposite side of face swelling... appears normal. (I looked at it and started asking ?s based on research becaues he was lit up in other places (not just heart, bladder, brain and kidneys). Stomach some, and groin area some. Then he had abdomenal pain and they did an ultrasound because they thought he might've had a hernia. Showed "reactive" nodes in groin. (end of march this year) I look at March 1 PET and it appears that area is lit a little as well.... (I looked at each slicer). Well now continued groin pain, sudden severe swelling of veins in left leg (vascular dr says unrelated) to continued groin lymph node area pain... follow  with ONC. Rheumatology said blood work a little off but not bad follow up with Onc. Our 1st Oncologist retired in Sept.

We have a new one. She says no worries... when we followed up after the other salivary gland (per ENT) swollen.... we followed up per gastro from US of the groin, she said no worries... now this thing is persistant. My husband is increasing fatigued, his appetitie is okay, but he is hurting, they found a random calcification in his wrist because his hand started to swell too. I am so sorry I feel like I am all over the place at the moment but I am so frustrated.... so new US of lymph nodes comes back yesterday says just like his original CT on his salivary gland normal appearing, but notes sizes at (1,1X0.9X0.3cm) and adjacent (0.7X0.8X0.3cm)... Oncologist says no worries.... um.... r u kidding me? She said well marginal zone is "rare" to reoccur and if it did it would more than likely be in the jaw area not the groin. (Remember in the beginning original cytology did not nail down exact NHL). In the meantime vascular doct said needs ablation and not related to groin. Rhem comes back and says (ran Lupus) negative lupus but slightly low concentration of a "clotting antibody" to be retested in 6 weeks. 

I am so frustrated... I feel like no one is taking all his symptoms seriously and he is being given the run around. Previous to the 1st surgery he had his gallbladder removed (rare apparently in men) and no one could figure out the cause of his jaw/skin/sweating issues (Sjogrens rare in men too and he didn't have the classic dry eyes and dry mouth).... I also feel like this oncologist is not taking the groin nodes seriously. It causes my husband pain when he coughs, sneezes, uses serious exertion, etc.... no pain when urination and epidymitis went away. No STD no HIV no Liver issues, etc..... am I crazy? I know too that what i read shows normal lymph node sizes for groin in the mm not cm. ?????????????? I don't even know what question to ask, I am just hoping that someone out there can give us some pointers.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #2
    Generalities

    mands,

    Your husband's case is so complex, and your seeming frustration so deep, all I can recommend is consulting with a different doctor. Are you using a large cancer institute , local yokel, or what ?

    CLL is easily and frequently misdiagnosed.  A minor note: gall bladder removal is common, not uncommon, in men. I've had mine out, as have a goodly number of friends who are around my age.

     It seems that several doctors are involved in reviewing his particulars (two oncologist, an ENT, a vascular specialist, a gastrologist, the radialogists).  You say that is "March 1 PET looks a little lit." Looks that way to whom ?  The radiologist and oncologist ?  Unless you are a trained as such I would not be second-guessing their expertise.

    All are telling you that he does not have active lymphoma at this time; his PETS are (as best I can follow your timeline) negative.  By itself, size of nodes does not indicate for or against cancer, and none of his are grossly enlarged.  Plus, radialogists are trained in identifying when nodes look suspicious for cancer or not, but this is not definitive, of course.   Lymphoma virtually never "hurts," so the groin pain is extremely unlikely Lymphoma in source.   It might be time to call a time out and see what occurs.  Lymphoma seldom "hides"; if he has it , it will show itself, virtually always. My next-door neighbor went 5 years getting biopsies, as there was something suspicious in his Lymphatic system, but all kept coming back negative, as did his PETS. Then it just virtually "blew up" suddenly , and he went from N.E.D. to stage IV, in a six-month's gap between doctor's visits. A strange case, but all the doctors can really do is remain vigilent and test frequently.

    max

  • po18guy
    po18guy Member Posts: 1,465 Member
    #3
    What Max said!

    You must be comfortable with your hematologist. Do a little research and find one that is highly rated. Don't worry if they turn out to be a highly competent jerk. I would much rather deal with poor bedside manner than some friendly incompetent who would gladly attend my funeral! 

  • ShadyGuy
    ShadyGuy Member Posts: 902 Member
    edited June 2017 #4
    Wondering

    What is your husband's age?

  • mandzsmomma
    mandzsmomma Member Posts: 4
    edited June 2017 #5
    Max Former Hodgkins Stage 3 said:

    Generalities

    mands,

    Your husband's case is so complex, and your seeming frustration so deep, all I can recommend is consulting with a different doctor. Are you using a large cancer institute , local yokel, or what ?

    CLL is easily and frequently misdiagnosed.  A minor note: gall bladder removal is common, not uncommon, in men. I've had mine out, as have a goodly number of friends who are around my age.

     It seems that several doctors are involved in reviewing his particulars (two oncologist, an ENT, a vascular specialist, a gastrologist, the radialogists).  You say that is "March 1 PET looks a little lit." Looks that way to whom ?  The radiologist and oncologist ?  Unless you are a trained as such I would not be second-guessing their expertise.

    All are telling you that he does not have active lymphoma at this time; his PETS are (as best I can follow your timeline) negative.  By itself, size of nodes does not indicate for or against cancer, and none of his are grossly enlarged.  Plus, radialogists are trained in identifying when nodes look suspicious for cancer or not, but this is not definitive, of course.   Lymphoma virtually never "hurts," so the groin pain is extremely unlikely Lymphoma in source.   It might be time to call a time out and see what occurs.  Lymphoma seldom "hides"; if he has it , it will show itself, virtually always. My next-door neighbor went 5 years getting biopsies, as there was something suspicious in his Lymphatic system, but all kept coming back negative, as did his PETS. Then it just virtually "blew up" suddenly , and he went from N.E.D. to stage IV, in a six-month's gap between doctor's visits. A strange case, but all the doctors can really do is remain vigilent and test frequently.

    max

    Thank you for your insight!

    Thank you for your insight! To answer your questions, I looked at the PET, with the Onc/Rad Onc. the later of the two explained to me since he has an underlying auto immune (Sjogren's) he will be lit in places and they are looking for issues, where there already are issues. 

    No we have not gone to a larger cancer institute. We are debating now (as my husband only 40 is off work due to some crazy veins in his leg that popped up causing him pain). 

    I know that it typically doesn't hurt, but it hurt him the last time, and everyone including the ENT specialist were shocked when it came back positive. Every CT, MRI, etc. said "likely benign". And yes, I understand sometimes with his type it is a "watch and wait" situation. We have been told that. I am just a wreck with trying to help my husband and if there is something there don't want them to dismiss it. 

  • mandzsmomma
    mandzsmomma Member Posts: 4
    #6
    po18guy said:

    What Max said!

    You must be comfortable with your hematologist. Do a little research and find one that is highly rated. Don't worry if they turn out to be a highly competent jerk. I would much rather deal with poor bedside manner than some friendly incompetent who would gladly attend my funeral! 

    ME too... hmmm hematologist.

    ME too... hmmm hematologist. We don't have that in the mix of drs. The only dr that seems concerned and is diggging deeper is his Rheumetologist and he is exactly what you described but he is thorough!

  • mandzsmomma
    mandzsmomma Member Posts: 4
    edited June 2017 #7
    ShadyGuy said:

    Wondering

    What is your husband's age?

    He is only 40

    He is only 40

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