Immunohistochemistry (IHC) results: Scared I may have lymphoma

Hi @mwtexas. The note, “Clinical correlation necessary” with your biopsy results, basically means just that. That the imaging must be combined with all the other information about your medical history for your doctor to make the diagnosis.
Your doctor may order more tests for confirmation such as imaging.
Have you had diagnostic imaging such as a PET scan or MRI?

I've had CT and MRI with inconclusive results but I live in a really small town with not so great medical equipment. This has been my first visit to a large hospital in a big city and no imaging has been done here yet.

I’m sure you’re on pins and needles waiting for a definitive diagnosis so you can get on with life! Being able to have access to a larger hospital usually gives you the opportunity for more state of the art diagnostic equipment and specialists. So I hope you get your answers soon.

You must have just gotten the biopsy results on the portal. This is usually followed up with a consultation. Or the doctor may read the results and request imaging or further tests before that consultation appointment.

Non Hodgkin’s lymphoma is a broad group of lymphomas so your doctor will want to zero in on your specific type before going ahead with a diagnosis and treatment plan.

We have quite a few NHL members in the forum and when you get your diagnosis I’d be happy to connect you! It can help to talk with others who are going through the same medical mystery tour! 😉 I’ve been there myself with a different blood cancer. We are blessed to live in an age where we have treatment options with positive outcomes.

Mayo Clinic has a good article on NHL that you may want to read.
https://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/symptoms-causes/syc-20375680#:~:text=Non-Hodgkin%20lymphoma%20happens%20when%20germ-fighting%20cells%20in%20the,lymphomas.%20There%20are%20many%20subtypes%20in%20this%20group.
If you don’t mind sharing, what were your symptoms leading up to your testing? Do you have a consultation scheduled?

It's been a year long journey of symptoms such as extreme fatigue, swollen lymph nodes, chills, gi issues, shortness of breath and dizziness, among things. I also developed a large mass that appears to be located on or around the pancreas but the imaging so far has been inconclusive. I have been dismissed by most of the
doctors I have seen in my town so that's why my PCP referred me up to a larger hospital in another city. The surgeon there performed a laparoscopy and removed one of the enlarged mesenteric lymph nodes for biopsy. I have a follow-up scheduled for this Thursday but the results of the biopsy came back last Monday. I'm hoping that during this time he is ordering additional pathology tests on it based on the initial results but I feel left in the dark and it's horrible. I have a strong medical background so I know what all these tests are for but so far I don't have a definite diagnosis.

Oh gosh, that’s horrible to feel left in the dark like that! It’s incredibly frustrating to have your doctor be dismissive. I went through similar with my PCP in my early stages of AML! We KNOW when we’re not feeling well and we shouldn’t have to beg to be treated with respect.

It’s a relief your doctor was able to refer you to a larger hospital. The ball is at least rolling in your favor there! It’s not unusual to have a lag time between results reported in the portal and the follow-up appt. It looks like you have that appt in a couple of days. I think you’ll know more after that appointment.
Having a strong medical background can be helpful but also arms you with too much information, right? 😉 Please try not to do too much searching before you even know the diagnosis. That can lead you down rabbit holes on the internet that may not even apply to you. So, wait for your consultation on Thursday. Please let me know what you find out.
Do you have family with you so you’re not having to drive and attend appointments on your own?

Oh gosh, that’s horrible to feel left in the dark like that! It’s incredibly frustrating to have your doctor be dismissive. I went through similar with my PCP in my early stages of AML! We KNOW when we’re not feeling well and we shouldn’t have to beg to be treated with respect.

It’s a relief your doctor was able to refer you to a larger hospital. The ball is at least rolling in your favor there! It’s not unusual to have a lag time between results reported in the portal and the follow-up appt. It looks like you have that appt in a couple of days. I think you’ll know more after that appointment.
Having a strong medical background can be helpful but also arms you with too much information, right? 😉 Please try not to do too much searching before you even know the diagnosis. That can lead you down rabbit holes on the internet that may not even apply to you. So, wait for your consultation on Thursday. Please let me know what you find out.
Do you have family with you so you’re not having to drive and attend appointments on your own?

I will keep you posted on what happens. I think I'm just so used to being dismissed by doctors here that in the back of my head I keep thinking that the same will happen this time. The past year I've hit brick wall after brick wall and I feel like I'm at the end of my rope if no one can figure this out once
and for all. It's so distressing to be able to feel this mass with my own hands and see that it continues to get larger, and there's nothing I can do about it. I'm not scared about what it could be, but I'm scared of them not finding the answer. Thank you for all your support and encouragement. It means a lot. 🙂

I will keep you posted on what happens. I think I'm just so used to being dismissed by doctors here that in the back of my head I keep thinking that the same will happen this time. The past year I've hit brick wall after brick wall and I feel like I'm at the end of my rope if no one can figure this out once
and for all. It's so distressing to be able to feel this mass with my own hands and see that it continues to get larger, and there's nothing I can do about it. I'm not scared about what it could be, but I'm scared of them not finding the answer. Thank you for all your support and encouragement. It means a lot. 🙂

@mwtexas, I thought I'd check in. Any update? Have you learned more in the past couple of weeks?