Lymphoma Recs

[Anonymous]

I am going through a Lymphoma work up, long story short, I am the lung mass poster, after waiting for 4 weeks for biopsy results--suspicious for extranodal B cell MALT Lymphoma. I see a rheumatologist and nephrologist at Hopkins and with the lung biopsy now a pulmonary team and oncology are involved. I am very underwhelmed with the lack of coordination of care. Basically next step is larger lung biopsy, but for example oncology tells me to contact pulmonology myself and ask for attending to do the new biopsy(and not a trainee) vs oncology calling them and saying "hey, this is a large biopsy needed, specifically for lymphoma-we need someone experienced doing this"(pulmonary lymphoma are EXTREMELY rare and the biopsy involved is totally different than a routine one). The pulmonologist who did the routine biopsy one month age is done with his training and no longer at Hopkins. Hopkins isnt even telling me who I would see next for interventional pulmonology. It just seems like no one is advocating for me nor leading this work up, I feel like I am having to constantly work so hard,harder than at my work, harder than anything Ive done before, this shouldnt be the case. is there any hospital system better coordinated? Venting here I guess......

[Anonymous]

Are you in Baltimore or do you have to drive up every time?

[Anonymous]

Anonymous wrote:Are you in Baltimore or do you have to drive up every time?

I drive there from NOVA, its exhausting, loosing money by taking day off work and feel like fn crap when I get back home bc its all so depressing AF

[Anonymous]

This sounds terrible, and Hopkins is supposed to be the gold standard. Have you expressed to them directly that you’re finding this extremely difficult?

Maybe part of the problem is that oncology usually takes over with a treatment plan once there is a definitive diagnosis, so in your case it is the pulmonology office who should be taking the lead to get you to biopsy, and they sound like a weak link. But the two offices also need to be in communication with each other, and it sounds like they are not accustomed to working together, which I’m sure is extremely frustrating.

But I don’t think I’m fully understanding the barrier. When you talk to the pulmonologist office, are they not able to get you on the schedule for a biopsy?

[Anonymous]

I saw the oncologist at Hopkins and he was willing to hear me out on postponing the PET, he ordered US of axillas and both had enlarged suspicious nodes, they are biopsing them end of month as well as doing my second lung biopsy..it seems to me I have stage 4 lymphoma..the crazy thing is I feel perfectly fine,, I reduced my immunosuppresants and my breathing is much better, I am livid at my rheum and nephro for not lowering my immunosuppresants earlier and mad at myself for not pushing them, there is a black box warning for these immunosuppressants for lymphoma and skin cancer,,,yet when I had these conversations they were "no one gets lymphoma from them"-well i did and now am livid...

[Anonymous]

Are you sure you have lymphoma? I’m having a bit of a hard time following. Do your doctors think it’s a certainty? What are the differential diagnoses? And why would you postpone the PET?

I know it’s so hard but I would wait until all of the diagnostics are done before writing off the immunosuppressants. I imagine it’s a rare reaction, and the benefits outweighed the risks. Like I had radiation for breast cancer, which carries a risk for lung/heart damage and a separate kind of cancer, but it was still a no-brainer and I did not dream of declining it. It sounds like you got the gold standard of care for your autoimmune condition, and it was a reasonable and recommended path - so I eoukd try to let go of the regret over that. You have to focus only on what you can control on the path ahead.

[Anonymous]

Thanks above poster, yes I know I needed these immunosuppressants but I was in relative remission for two years and should have pushed lowering the dose at that time. The lung biopsy and the lymph node biopsy that i am having soon should provide the correct diagnosis.

[Anonymous]

Anonymous wrote:Thanks above poster, yes I know I needed these immunosuppressants but I was in relative remission for two years and should have pushed lowering the dose at that time. The lung biopsy and the lymph node biopsy that i am having soon should provide the correct diagnosis.

Please keep us posted. I know it’s so hard to be in limbo. I hope everything goes smoothly!

[Anonymous]

Would you consider going to msk?

[Anonymous]

Call the patient advocate hotline at Hopkins

[Anonymous]

Anonymous wrote:This sounds terrible, and Hopkins is supposed to be the gold standard. Have you expressed to them directly that you’re finding this extremely difficult?

Maybe part of the problem is that oncology usually takes over with a treatment plan once there is a definitive diagnosis, so in your case it is the pulmonology office who should be taking the lead to get you to biopsy, and they sound like a weak link. But the two offices also need to be in communication with each other, and it sounds like they are not accustomed to working together, which I’m sure is extremely frustrating.

But I don’t think I’m fully understanding the barrier. When you talk to the pulmonologist office, are they not able to get you on the schedule for a biopsy?

I found Hopkins way too disorganized to trust them with my multiple myeloma treatment.

[Anonymous]

Anonymous wrote:

Anonymous wrote:This sounds terrible, and Hopkins is supposed to be the gold standard. Have you expressed to them directly that you’re finding this extremely difficult?

Maybe part of the problem is that oncology usually takes over with a treatment plan once there is a definitive diagnosis, so in your case it is the pulmonology office who should be taking the lead to get you to biopsy, and they sound like a weak link. But the two offices also need to be in communication with each other, and it sounds like they are not accustomed to working together, which I’m sure is extremely frustrating.

But I don’t think I’m fully understanding the barrier. When you talk to the pulmonologist office, are they not able to get you on the schedule for a biopsy?

I found Hopkins way too disorganized to trust them with my multiple myeloma treatment.

Where are you getting treatment?