8 months sick. misdiagnosed. waiting for bone marrow biopsy

Dallasss7

Hello friends. I am 34 years old, and was a healthy and active male. In early Sept of 2020 I started experiencing stabbing, and piercing pain in my gut. I went to my PCP who ran a few blood tests but found nothing wrong. He gave me some pain meds and sent me on my way. In Oct I had to go to the ER the pain was so bad. I was diagnosed with mesenteric adenitis. I have had 2 more ct scans since then (dec, and late feb) with no changes to the adenitis. Since then my symptoms have continued to change and worsen while my doctor continues to run tests and find nothing wrong (as of today I have also seen a urologist, 2 gastroentinologists, a cardiologist, a neurologist, a stroke specialist, an oncologist and a pulmonologist). In late january I ended up in the ER again for neurological symptoms and a small ischemic stroke was discovered of unknown age. After a slew of tests with the stroke specialist and neurologist, it was chalked up to my past history of drug and alcohol abuse (I am currently 7 years clean and sober). In april my symptoms and pain increased so my GI doc had a laprascopic surgery performed which revealed a number of growths and nodules all over my mesentery. Pathology did not reveal much and indicated that in the correct clinical setting this could be Sclerosing Mesenteritis. A bone marrow biopsy was recommended though due to my B symptoms and me not being a good "fit" for the SM diagnosis. Since then my GI doctor has had me on prednisone treating me with the assumption that I have SM. Unfortunately I am not responding well to the meds and my symptoms have worsened. I had a meeting with my GI doc last week and she consulted with an oncologist. Now I am scheduled (June 2nd) with the oncologist for a bone marrow biopsy, with a suspicion of t-cell non-hodgkins lymphoma (on the pathology from the surgery, my t-cells were elevated). I don't know what to do at this point as my symptoms are bad. I can barely walk around the house with my pain, I have lumps in my stomach, my face is covered in a rash, and i can barely eat without vomiting. I still have drenching night sweats, little appetite, extreme fatigue, and occasional tremors. As well as stabbing nerve pain in my feet. I called the oncologist to try to move up my appt but she is completely booked until my appt. The only thing I know to do now is to wait, take my oxy, and try to rest and take care of myself. My wife got me some organic meal replacement shakes that I seem to be able to keep down, as well as birkenstock slippers to help with the peripheral neuropathy. Any advice, or ideas on what to do, or how to manage the pain is welcome because I feel so helpless right now.

PS: I am scheduled to get my second covid vaccine tomorrow. My doctors assure me I should be fine, and I think I will be but my wife is quite worried about how my body will react.

po18guy

Sorry to hear this

If they suspect a T-Cell malignancy, then some piece of one or more of the growths shold be removed for pathology. That is the only way to rule cancer in, or out. At this point, if a doctor wants to wait, it is time to run for your life. Jumping ahead a bit - if it is a T-Cell malignancy, I would go nowhere other than to a hematologist who specializes in T-Cell cancers. While being similar to B-Cell cancers, they are also a world apart. Treatment is substantially different and outcomes are more heavily dependent upon correct diagnosis and treatment.  

Dallasss7

po18guy said:

Sorry to hear this

If they suspect a T-Cell malignancy, then some piece of one or more of the growths shold be removed for pathology. That is the only way to rule cancer in, or out. At this point, if a doctor wants to wait, it is time to run for your life. Jumping ahead a bit - if it is a T-Cell malignancy, I would go nowhere other than to a hematologist who specializes in T-Cell cancers. While being similar to B-Cell cancers, they are also a world apart. Treatment is substantially different and outcomes are more heavily dependent upon correct diagnosis and treatment.  

thank you so much for the

thank you so much for the advice. i plan on calling this morning to check in with my oncologist and see if they have had any cancellations. My first PCP wanted to wait for "the tincture of time", which is just insane. I quickly got a new PCP.

Max Former Hodgkins Stage 3

Dallasss7 said:

thank you so much for the

thank you so much for the advice. i plan on calling this morning to check in with my oncologist and see if they have had any cancellations. My first PCP wanted to wait for "the tincture of time", which is just insane. I quickly got a new PCP.

Scenario

Dall, 

What sort of laproscopic surgery was performed ?  If the surgeon was inside, next to these nodules, it seems highly irresponsible for him to not remove one for biopsy, which is what you mostly need at this point.  But the bone marrow biopsy is also necessary, and its results will assist in solving your diagnosis.  It is also quite odd for surgery to identify nodules that were not detected on CT

You were wise to seek a new PCP, in my never very humble opinion.

As Po noted, only a biopsy will ID your exact problem, and only then can the correct treatment begin.   If lymphomas are ruled out, ask your oncologist about Peritoneal Cancer, based upon the location of the tumors and your pain.  Peritoneal cancer is closely likened to, and often confused with, Ovarian Cancer, but it does occur fairly often in males as well.  Also, be careful with the pain meds, given your particular history.

max

Dallasss7

Max Former Hodgkins Stage 3 said:

Scenario

Dall, 

What sort of laproscopic surgery was performed ?  If the surgeon was inside, next to these nodules, it seems highly irresponsible for him to not remove one for biopsy, which is what you mostly need at this point.  But the bone marrow biopsy is also necessary, and its results will assist in solving your diagnosis.  It is also quite odd for surgery to identify nodules that were not detected on CT

You were wise to seek a new PCP, in my never very humble opinion.

As Po noted, only a biopsy will ID your exact problem, and only then can the correct treatment begin.   If lymphomas are ruled out, ask your oncologist about Peritoneal Cancer, based upon the location of the tumors and your pain.  Peritoneal cancer is closely likened to, and often confused with, Ovarian Cancer, but it does occur fairly often in males as well.  Also, be careful with the pain meds, given your particular history.

max

Much Appreciated

Hi Max,

 

Thanks for your reply. The laprascopic surgery was an abdominal surgery to check some mesenteric haziness found on my multple CTs as well as enlarged mesenteric lymph nodes. Unfortunately the mesentric lymph nodes were inaccessible to the surgeon, but he did biopsy one of the nodules and the results were "suspected sclerosing mesenteritis. but proper clinical correlation is required, otherwise a bone marrow biopsy may be indicated". So I had a second opinion performed which came to the exact same conclusion. I agree with the not detected CT results. I was told by the performing surgeon, in  our post-op checkup, that he has never seen what he saw on my mesentery before. He even asked every GI surgeon in his clinic and no one had ever seen it before.

 

Thanks and yes, my PCP on monday informed me that this pain I have been experiencing could be due to or worsened by tight pants. I nearly laughed myself out of the clinic. Yes doc, I have been having all of these B symptoms, and pain (not to mention odd blood work or enlarged lymph nodes) for this long and who knew, my pants were the cause.

 

Thank you for the advice on Peritoneal Cancer, I will mention it to my doctor when I see her on Wednesday. Per the pain medication yes, thank you, you are right. My wife is helping me to manage the pain medication and my sponsor is on the up and up with everything goin on.

 

I am grateful to all of you responding. This is such a difficult time and not a lot of people understand the pain, the process, and the existential feelings of something like this happening. So much thanks, it means the world to me.

Dallasss7

Update

I wanted to give a quick update. the bone marrow biopsy went well. and we ran a bunch of blood work. so far only the blood work has come back and it doesnt look good. my neutrophils are very high and my lymphocytes are low. so my doc went ahead and submitted a request for a PET scan for next week

EllenChristian

https://csn.cancer.org/discussion/323480/8-months-sick-misdiagnosed-waiting-for-bone-marrow-biopsy

I have been recently diagnosed with Large B Cell Non Hodgkins Lymphoma and have completed my first round of IP R-EPOCH chemo at 6 days every 3 weeks - I too have had a lot of nerve pain and nausea to include pinching in the abdomen area - nothing tastes good. The mass grew large quickly but the R-EPOCH knocked it down so that I couldn't feel or see it. I am about to go back for my 2nd R-EPOCH this month the 22nd. It is important to reach out to the Oncologist when certain meds don't work well or, in my case constipation and nausea occur. I remember initially have drenching night sweats too, and trouble digesting my food. Then, the mass started to grow quick. It was pushing on my sternum and stomach and created a lot of discomfort and at times unrelenting pain. It is important to get the right diagnosis quickly and so be sure you have an oncologist/hematologist that gets back to you - at least the nurses. I will tell you that God is my ROCK and Jesus is the Great Healer and Physician. It's so important to have a supportive and loving spouse - and to pray. Mark 10:27