u/Suitable_Towel_7590

32F, suspected lymphoma, urgent referral to oncology.

What can I expect from my first oncology appointment? I've only had an ultrasound so far. What questions will I be asked and how do I make sure I'm not written off. I'd feel comfortable getting a ct scan of at least my lower abdomen where my issues have been.

My first appointment with oncology is in two days. I had an ultrasound on my bikini line. It was only noted that one lymph node was 2.2cm but was "morphologically benign appearing". The tech did ultrasound the wrong area though and that's noted in my clinical notes. (I should have spoken up during the ultrasound but I didn't)

I got referred to oncology by my pcm after the ultrasound based on a lot of symptoms and her feeling more enlarged or hard nodes in a few other areas.

My bloodwork is normal. Monocytes, lymphocytes, wbc, are all normal and LDH is a very normal 160. I'm a little worried the oncologist will think I'm wasting their time and not push for anymore testing because "hormones". (Like the rheumatologist did 3 months ago when i was referred for a high ANA count) I just want to find the source of my fatigue, malaise, constant hangover feeling, fevers, pelvic and lower back pain and fix it.

What do I do if they don't think I need any more imaging done?

I'm not the best at advocating for myself and I really don't have great communication skills. I have a tendency to ignore my discomfort and dismiss myself even when something is really bad. The only reason I even went to see a doctor in the first place is because my spouse(a nurse) is really worried about me and the last 8-9 months I've really taken a turn healthwise. Annddd the whole visibly swollen groin for 5 months thing freaks him out.

I'm sorry if this all comes off like health anxiety. I genuinely don't have it. I'm just trying to do this the right way for my family. Unfortunately, my husband can't come with me because he has to stay with our daughter for the appointment otherwise I'd have him chime in.

My pcm was very concerned and very serious about my symptoms as well, despite the seemingly normal ultrasound. hence the urgent referral. I don't know if I have lymphoma yet, but i know this referral is serious. I know something is wrong and I think my pcm does too.

How do i do my first appointment right? I'm not a strong or confident person. I'm insecure and meek. All of this is very new to me and it all happened so fast and I feel so sick and don't have the energy in me to care enough to stand up for myself.

I do have a comment on the pre diagnosis thread in but I'm not sure if it'll get responded to by Friday. And i really don't know if i can post this in there since I'm still not diagnosed. Thank you for reading. I'm sorry if this is the wrong place. I just want to make sure i don't make a fool of myself, cause something to be missed, or come off as demanding or disingenuous during my appointment.

I haven't told anyone. I've had a swollen node in my hip since November. I didn't even know it was a lymph node. Though it was just a fat lump or another bulging vein or something idk. and I started getting back pain and just a whole bunch of other symptoms I've written off as connective tissue/vascular/dysautonomia issues and I thought i was just going through a super long "man i feel like crap today" phase or flare or whatever you wanted to call it. I even posted about just not feeling well not too long ago. Apparently a lot of what I'm experiencing are sometimes hallmark "b" symptoms of lymphoma. Along with the other icky symptoms of something serious going on.

Well... the ultrasound results on my groin and hip were troubling to say the least. Pcm then discovered hard and swollen nodes all in my neck, left armpit, and behind my knees. I got an "Urgent" referral to oncology to discuss my results and get more imaging and decide where to take a biopsy from and how to even do it bc fragile tissues or whatever. My first appointment is a week from now. I'm on a ton of prednisone to help slow tumor or cancer cell growth/spreading (or something like that "just in case". And it will "hopefully help some of the inflammation too". My mind kind of went blank when oncology was brought up) until then but its not doing much for the swelling.

Would be really cool if someone went through something similar and was completely fine ha.

I feel so.... regretful? Ignorant maybe? I'm not sure what the word is I'm looking for. It was just so easy to write off what I'm feeling as dysautonomia or hormones bc I've been written off by doctors for as long as I can remember.

Not entirely sure why I'm posting this. I guess I just need to get it out because i dont feel comfortable talking about it with anyone in my support team yet. Plus i don't want them to worry about me. And I'm going to feel really silly for stressing if the biopsy and scans come back fine but if they don't... from what I've read vEDS and cancer treatment can be a very slippery slope. I am worried about that. Like.... super worried.

Anyways. Pay attention to your bodies. I literally never even knew i had lymph nodes in these places. I spent so much time and effort into freaking out and learning as much as i could about the vascular systems we have that I just didn't care to learn about stuff like this. My bloodwork is better than it's ever been though! So i guess there's that!

I was genetically confirmed vEDS, but I'm just wondering.

We don't really talk about other symptoms much. Do any of you have any of the "typical" symptoms associated with any other subtypes of EDS?

For example: hypermobility, gastroparesis, joint pain, chronic fatigue or instability

I've got a lot of joint pain, instability, and deformities and I'm making the transition to using mobility aids and having a few surgeries done. I'm not super hypermobile but I am in my hands and feet and one of my knees. My orthopedic surgeon says my joints are "separating". I always feel like poo and I've always got an upset stomach. I'm also very sleepy. All. The. Time.

I was originally diagnosed with hEDS and told by rheumatologist there was no point in getting genetically tested. My cardiologist seemed to think otherwise given my medical and family history. I'm glad he made the referral.

I'm not sure if my symptoms are all vEDS or just general vitamin deficiency and malnourishment. It's hard to tell.

If you do have other symptoms or comorbidities, what are they? I find you all to be so much more informative and supportive than anything I've found online when it comes to our disease.

I hope you're all having a wonderful week. Thanks for reading this far!