8 months sick. misdiagnosed. waiting for bone marrow biopsy

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 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 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

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.