Surgical biopsy results - Inconclusive

I am so frustrated right now. 2 months of biopsies (one fine needle and one surgical), CT scan and ultrasound and I'm still not much closer to finding out what is going on. The nurse rang me today and explained that my surgical biopsy results - where they removed a part of the lymphnode - has come back inconclusive. Something about there not being enough to give it an 100% diagnosis. Frustrated is not the word, at 20 years old there is so much I should be doing but instead I'm sat waiting constantly for results that turn out to be inconclusive. I haven't cried once during this whole thing, not when I was told it's 99% likely to be lymphoma, not when they found a 7.5 mass in my chest, not when they said most likely the worst - but now, after I've based my whole thoughts around finally getting closure and for it to be inconclusive, again, is when I've cried. I am so angry at myself for believeing they would finally know, has anyone else not been told after their second biopsy? The nurse told me they'd removed a good part of the lump - so how?! I am so upset right now and don't know what the next steps are. Different nurses have drip fed me different information and now I believe none of it.

My breathing has become heavier recently and my head keeps feeling very tight, but I haven't had a CT scan done in a month so who knows if the mass has grown? Feel very alone and upset as I'm writing this and genuinely want to tell the docs to leave it now because the waiting is unbearable, I'd rather not know at all.

  • Sparksfly I like your name. What you describe is a nightmare. I’ve found that being politely stubborn gets results. I try to know what I need and I direct my efforts to getting it. Perhaps you’d want  a clear and full explanation  from the consultant of what the hell is going on. It might make to feel in control, and that’s the thing. Be stubborn.  I hope this helps. 

  • Hi Frieda

     

    Haha thank you! An old favourite song of mine was the inspiration. 

    It really is a nightmare! Guess what? I went in today and the haematologist told me that the reason the results were inconclusive was because the surgeon didn't actually remove ANY of the lymph node. They only got tissue surrounding it! Connective tissue and a blood vessel! I am in complete shock that this can even happen, they opened me up to remove the lymph node and didn't do that! No wonder the results were inconclusive.

    Xx

  • Hey Sparky! I take that as a warning. Thank you. I’ve just started here, but maybe between us we can navigate the fog. I hope you get some effective person to stand by you, and you have to push. It’s pretty disgraceful but not unusual unfortunately. I tried very hard to even get a first referral from my GP. She advised me to wait three weeks and if there was no change she’d refer me, for a six week wait. I used my private health care, and it’s lymphoma. I feel very angry. How do you feel about it?