hubby waiting for a diagnosis? Incidentally found Multiple enlarged lymph nodes in abdomen

whitepony
whitepony Member Posts: 15 Member

Hello to all,

my husband (only 40 years old, normally super healthy, thin, eating organic, stopped smoking 10 years ago, but wasn’t smoking much anyway, had yearly blood check-ups…) had 2 months ago an MRI for an unrelated reason and it showed “enlarged mesenteric lymph nodes” in the stomach.

of course he went to his GP and had blood work done, which were ok. Then to a heamatologist who sent him to a CT scan (which took placr almost 6 weeks later than the first scan) and unfortunately it still showed “pathologically enlarged mesenteric lymph nodes (10 mm) plus enlarged aortic lymph nodes (12 mm)” in the abdomen. Spleen looks normal. He had another round of blood tests which also look good, with very low inflammation markers such as CRP and SED rate, normal LDH and maybe a slightly reduced RBC count.

Hubby doesn’t have any symptoms, he feels well and is convinced “it’s nothing”. He is scheduled for a colonoscopy next week to rule out a malignancy in the bowel. His doctor told us the biopsy of the abdominal lymph nodes is no “no big deal”, hence the unusual choice of colonoscopy first.

it’s been more than 2 months and we feel lost in this waiting game. We have 2 very young kids (1 and 4 years old!) which only adds to our worries…

I still hope “it’s nothing” although it’s now a very plausible probability that it’s lymphoma. If it’s lymphoma, I can only hope it’s a “good kind” which will allow us to be together for decades to come and see our kids grow…

Are there here any patients who found about their lymphoma with an incidental finding?

is it a good sign that the blood work is good?

Have a nice week end,

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Comments

  • PBL
    PBL Member Posts: 355 Member

    Hi Whitepony, and sorry for your concern, which calls for a couple of remarks:

    • I do not hold a medical degree, but I do have a few years' experience as a lymphoma patient;
    • the diagnostic process, with the waiting and uncertainty, is very difficult on the nerves. Try and carry on with life as usual - trust your medical team and do not worry yourself sick;
    • enlarged lymph nodes are not necessarily caused by cancer, and the final diagnosis may well be a benign one;
    • there are several dozen lymphoma varieties, and an accurate diagnosis is essential to determine the most appropriate treatment approach. Therefore, please consider that your medical team are being thorough, that this is time well spent, and remember to carry on as usual throughout the process;
    • the fact that your husband has no symptoms and that his minimally enlarged lymph nodes do not seem to have significantly changed over a two-month period would suggest that, IF indeed he has lymphoma, then it is likely to be an indolent (meaning, slow-growing) strain. This means that, although it is trying for your nerves, your medical team has all the time in the world to pinpoint their diagnosis, as there is no emergency;
    • a definitive lymphoma diagnosis requires an excisional biopsy, and you will not know for sure what you are dealing with until and unless a pathologist has examined one of those lymph nodes to determine what is going on in there.

    Last but not least, in the event your husband should be handed an actual lymphoma diagnosis, in the absence of symptoms or concerning organ involvement, the approach of choice may well be "watch and wait" - which, counterintuitive though it may seem, consists in periodic (quarterly or semestrial) blood draws and hematology appointments to check on any new developments.

    Watch and wait can go on for many years before actual treatment is required. If this did turn out to be lymphoma, it might take some adjusting to the idea, but would not necessarily mean a life-changing event.

    I hope this helps. Do keep us posted on your husband's progress towards diagnosis.

    PBL

  • whitepony
    whitepony Member Posts: 15 Member

    Dear PBL,

    thank you for your answer. I’m new here so I don’t know your story but I hope you’re doing well!

    I have been googling a lot ( I know I shouldn’t!) and I have also been thinking about indolent/follicular lymphoma since the lymph nodes aren’t growing super fast. I have read that there is no cure for this specific kind of lynphoma, but a lot of treatment options, which does look encouraging. But you’re right, it could also be a benign condition, we just have to wait for a diagnosis…

    If the lymph nodes were located in a easier spot such as under arm or neck, they would have probably already done a biopsy by now but since it’s located in such a difficult place they are doing a colonoscopy first. My husband did a couple of home tests to check blood in his stool which were negative, so we’re hoping it’s not colon cancer…

    He has a grandmother who had NH lymphoma, ( which kind we’re not sure) she died at 67 from another cause but it makes us worry even if they say lymphoma doesn’t run in the family…

    Another question: Which supplements would you suggest as a lymphoma patient? My husband is not against conventional therapies but anything to make cancer grow slower would be useful. I have come across green tea, selenium and bio-bran. Bio-bran is a bit pricy so I’d be glad to hear other patients opinions about it.

  • PBL
    PBL Member Posts: 355 Member

    Hello again Whitepony,

    I am currently in remission, thank you for asking. You can read my profile for details.

    You have stated that your husband is fit and thin and eating organic, so there is likely no need to look into any changes in diet or supplements. Furthermore, I believe it is unadvisable to start meddling with anything while the diagnostic process is ongoing.

    The one thing that might actually be helpful and that a hematologist would probably not frown upon is a vitamin D3 supplement if - and only if - his blood levels are demonstrably low. There is such a thing as too much vitamin D, and that can be harmful, so in the absence of a blood test showing a need for supplementation, it's best to refrain from it.

    For the time being, I would suggest letting the diagnostic process take its course, however long it may take, bearing in mind that you do not have a lymphoma diagnosis.

    Kind regards,

    PBL

  • PBL
    PBL Member Posts: 355 Member

    Whitepony,

    I understand your desire to do something - anything - to help your husband. Here is some info on "Biobran" from a reliable source:

    "Biobran (MGN3)

    Biobran (MGN-3) is a natural compound. It is made from breaking down rice bran with enzymes from the Shitake mushroom. There is not enough reliable evidence to support MGN-3 as a treatment for cancer.

    Summary

    • Biobran is made from rice bran using enzymes from Shitake mushrooms
    • There is not enough reliable evidence to use it as a treatment for cancer
    • It has no reported side effects, but you should not take it with drugs that lower the immune system"

    [https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/complementary-alternative-therapies/individual-therapies/biobran-mgn3]

    PBL

  • tgyphilly
    tgyphilly Member Posts: 45 Member
    edited September 2022 #6

    Hi PBL,

    You're likely better off getting a second opinion from a hematologist/oncologist on biopsy strategy rather than trying to take any actionable advice from this board...except that advice, of course : ). I say this with the kindest intentions.

    A good surgeon can get at those abdominal nodes. I have had several abdominal biopsies for nodes that are tucked away next to very scary blood vessels and my surgeon seems to be able to navigate really well in tight places. Nothing beats a great surgeon!

    Good luck -- chances are, whatever it turns out to be, it will be treatable and not all that life altering for you and your young family.

    T.

  • ShadyGuy
    ShadyGuy Member Posts: 843 Member
    edited September 2022 #7

    I was reluctant to reply to this thread because what happened to me may not apply or may cause fear of biopsy. My PET showed deep enlarged mesenteric and aortic lymph nodes. No palpable nodes any where else. I signed on for a biopsy by a surgeon with a great reputation. He had done surgery on my wife 2 times with excellent results. I nearly died from the 6/ 1/2 hour procedure and was hospitalized 8 days. It took 2 months to recover enough to start treatments for my lymphoma. !t was originally scheduled to be a laparoscopic surgery and I was expecting to go home that day. However I signed permission for him to open me up if necessary. “ due to presence of extensive scar tissue” they opened me up with awful consequences. Surgery in that part of the body is very very risky (my opinion) and in my non-professional opinion should be avoided except as a last ditch effort. Just sayin’ based on my experience. This took place in 2011 so equipment and techniques are likely better now so this may or may not apply to others. Good luck and best wishes.

  • whitepony
    whitepony Member Posts: 15 Member

    Dear Shady Guy,

    thanks a lot for your answer. I am sory you had to go through all this. But it was 11 years ago and it’s nice to see that you’re still around! May I ask you how you discovered the enlarged lymph nodes in the stomach if you didn’t have any palpable nodes, was it also an incidental finding like my husband’s? For the moment being he doesn’t have any symptoms abd blood work is also OK. And what kind of lymphoma do you have? I guess that fnhl is follicular lymphoma, right?

    I hope you’re doing well now,

  • whitepony
    whitepony Member Posts: 15 Member

    Dear tgyphilly,

    thank you for your answer. Like you say, it’s a good idea to get a second opinion. Luckily we’re living in a big city in Germany so hopefully it won’t be much of a problem. I am glad that your biopsy went well and you didn’t experience any complications.

    Thank you for your kind wishes and I hope you’rendoing and feeling well!

  • ShadyGuy
    ShadyGuy Member Posts: 843 Member
    edited September 2022 #10

    Whitepony

    I had been feeling bad for 2 years but never ever thought I had cancer. I was slim and fit and very active. I noted a gradual decline as fatigue increased. GPs treated me for everything else. They love prescribing antibiotics. My GP ran extensive tests and concluded there was nothing wrong with me. He said he had “eliminated everything but lymphoma” and he was “sure you don’t have that”. “Your bloodwork is normal”. He recommended psychiatric counseling, thinking I was hypochondriac. Exactly one week later I had an MRI for a chronic back pain. The radiologist noted swollen lymph nodes. The back doctor never mentioned it so I asked about it. He said “don’t worry, its nothing”. His PA followed me me into the hallway as I left the office. Mr. Xxxx I think you need to see an oncologist. I set up an appointment and a CT and PET were ordered as was a BMB. I had stage IV lymphoma with heavy bone marrow involvement. Then came the biopsy from hell. Since then I get a second opinion on everything. My advice to people who ask is that if you suspect lymphoma - go to an oncologist! GPs are good for common colds and little else - just my opinion. I confronted (very loudly) my GP. He left the practice and became a herbal/holistic doctor. Once again - good luck and best wishes.

  • ShadyGuy
    ShadyGuy Member Posts: 843 Member

    GP/ENT doctor saying;

    ”If you hear hoofbeats (swollen lymphnodes) expect horses (infections) not zebras (lymphoma).

    “Give the patient antibiotics” especially the ones that cute drug sales lady gave me free samples of.

    Tough luck if it’s really zebras!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,781 Member

    Whitepony,

    I have been following your thread since you began. I have not posted prior to today because it seems there is little to be added, especially after PBL's excellent summation post on September 11. I disagree with nothing that has been written as a reply to you thus far. I will add a few thoughts ad random - 'at random.'

    You discuss at some length your husband's healthy lifestyle. That is wonderful in many regards, but almost always irrelevant in a cancer diagnosis. Environmental or dietary factors are usually of no consequence in developing the majority of cancers. There are a few clear exceptions: cigarettes contributing to lung cancer; alcoholism contributing to digestive trac or liver cancers; radiation contributing to thyroid cancer or leukemia -- but outside of these and a couple of others, cancer has no clear causality.

    It is highly ill-advised to attempt to steer any cancer via 'nutrition' or 'supplements.' Some are known to worsen certain malignancies, and at best, they waste money. Besides HL, I have also had prostate cancer, and over the decades, tens of thousands of men have spent several billion dollars on 'Saw Palmetto' as a preventative. Trouble is, all aggregate studies today agree that Saw Palmetto has no effect in either preventing prostate cancer, or in reducing its intensity.

    Your husband's involvement with enlarged tumors (neither of which is very large yet) is minimal, and in a difficult to access location. IF the disease is lymphoma, new nodes will choose to vacation elsewhere, and become easier to fish out. I first learned I had a tumor problem due to chest pain, and the ER said I had unstable angina. Cardiologists soon learned that my arteries were clear -- huge nodes compressing the heart were the issue. This is not uncommon: learning of lymphoma due to organ compression. The docs soon knew also (via CT) that my esophagus and superior vena cava were also compressed, as well as both lungs. There was extensive node grouping in both axillary (armpit) regions, despite me never having had a palpable node anywhere.

    While cutting out a deep node can be tricky, there are situations in which it must be done. Nodes CAN be removed from virtually anywhere in the body, but I do believe that you are in for a period of 'Active Surveillance,' which in some cases can persist for years. Luckily, lymphoma is usually as treatable in advanced stages as it is in incipient ones.

    Finally: Blood tests, which usually consists of a CBC, a Metabolic Profile, and an LDH. I have been diagnosed with Hodgkin's twice, roughly ten years apart. Both were advanced, Stage III. I begin infusion for the second occurrence this Monday, September 19. My blood panels today are PERFECT. In 2009, with bulky Stage III-B disease, my blood panels were perfect. While these blood tests are critically necessary, I know full-well that by themselves, clear blood results prove nothing as regards the presence or absence of lymphomas.

  • po18guy
    po18guy Member Posts: 1,376 Member

    This may sound odd, but one of my suspected relapses found that I had enlarged nodes whhich were too deep to safely biopsy. We were 99% sure this was a relapse. Doctor told me to go home and grow some more (tumors) closer to the surface. Following doctor's orders, I went home and did exactly that.

    However, one way to survive this with some sanity intact is to consider: He does not have cancer until a pathology report says he has cancer. At last count, the W.H.O. classified 68,069 known human illnesses and conditions. Thousands of those symptoms produce enlarged lymoph nodes, which are most often a sign that our immune system is working. Had a vaccination lately? Giuess what? You have enlarged lymph nodes. Cold or sniffles? Same thing. Nevertheless, at this point, it is psychologically safe to think that it is not cancer. If it is, face it down. Make it a challenge.

    "IF"

  • ShadyGuy
    ShadyGuy Member Posts: 843 Member

    There can always be false positives and false negatives. That is why second opinions are, in my view, necessary. My GP gave me a false negative. Pathology reports can be wrong too. Mine was sent to 3 top labs - two positives and one undetermined. And try having multiple radiologists look at your CTs. You may be surprised how different the findings can be.

  • whitepony
    whitepony Member Posts: 15 Member

    Hello to all and a little update from my husband:

    he had a colonoscopy and endoscopy last week which came out as clean. An advanced case of boweL or stomach cancer would be indeed much harder to deal with.

    he had another round of blood tests which also look OK: igA, B,G,M, immunoglobuline beta 2 etc are all in the normal range, too. But like many of you have said, as much as it may sound relieving, it doesn’t mean much when it comes to rule out lymphoma.

    he also had an abdominal ultrasound this morning and all organs look normal, the doctor told it’s hard to see the lymph nodes but apparently they weren’t more enlarged, she could measure a single lymph node of 9 mm.

    His heamatologist does have weekly discussions on the current situations of his patients with other colleagues and he told my husband they were’nt going to rush him for a biopsy. He’s scheduled to have a follow-up MRI and blood tests In a couple of months. They are probably reluctant on exposing him to too much radiation so that’s why they are preferring an MRI…But we still want to get a second opinion just in case!

    So we don’t have an official diagnosis yet but it’s safe to say he’s already on some kind of “watch and wait”, minus the biopsy!

    I must say that this website has made me feel more hopeful, it’s nice to know that we have tools to fight the disease in case he does have something.

  • PBL
    PBL Member Posts: 355 Member

    Hello Whitepony,

    Overall, this sounds like very good news, and your husband's hematologist is going by the book. He will assess that unspecified "thing" over the next few months through those blood tests, MRIs/ultrasound and clinical exams. If it remains more or less the same, you should expect the imaging and clinical appointments to gradually become farther apart.

    It is also possible that these small lymph nodes go back to normal on their own, be it because the cause is benign or not; this is known to occur in up to 20% of Follicular Lymphoma cases (it is called "waxing and waning").

    Your husband will always be able to call his office at any point should there be new and significant developments, such as persistent or acute abdominal discomfort, the appearance of superficial cervical, axillary or inguinal lymph nodes, or the "standard" red flags.

    Kind regards,

    PBL

  • whitepony
    whitepony Member Posts: 15 Member

    Hello to all and a little not-so-happy update from my husband

    his doctor had ordered a couple of weeks ago something called flow cytometry test and he called him today to say that the results are abnormal. He got his MRI rescheduled to next week and then he has a new appointment with his hematologist. He told him at the phone “an infection or follicular lymphoma”

  • PBL
    PBL Member Posts: 355 Member

    Hello whitepony,

    Has the doctor said anything about "abnormal cells"? Those words are essential... If the doctor has stated that it might be "infection or FL", without any mention of abnormal cells, there is a chance that it is still much too early to tell.

    Try not to worry until all the results are in and the diagnosis is final.

    How is your husband feeling so far?

  • ShadyGuy
    ShadyGuy Member Posts: 843 Member

    Has his doctor said why he ordered an MRI and not a CT scan?

  • whitepony
    whitepony Member Posts: 15 Member

    Hello Shady Guy,

    I think that was partly my husband’s own wish. He didn’t want to get exposed to too much radiation, and save the CT scans for later.

    But he did have one CT scan almost 2 months ago.

  • ShadyGuy
    ShadyGuy Member Posts: 843 Member

    I understand about the CT and radiation. I have had way too many but I also know they an excellent diagnostic test. The best diagnostic tool is an @ctual biopsy. Then comes PET scans which usually include a CT. Good luck. I have follicular and it can be lived with for years or decades.