Waiting for Diagnosis for Blood Cancer

Hi Lorraine GraL and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your ongoing Lymphoma diagnosis.

I am Mike and I help out around our Lymphoma groups.

For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell (CTCL)........ (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. my type of of CTCL is called Mycosis Fungodes (MF)........... Sezary Syndrome is rather the same as my MF but it's more aggressive and seen as a type of fast growing High-grade non-Hodgkin lymphoma 

I eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell  NHL........ a type of fast growing High-grade non-Hodgkin lymphoma was then presenting so although my Lymphoma ‘type’ may be different I most definitely appreciate the challenges of this journey rather well.

To encourage you....... I am 9 years out from my last treatment, I turn 70 this year and I am living a great life.

Back in 1999 my consultant was 99% sure as to the typeof T-Cell I had but it took a full year, a few CTs and 6 biopsies to provide the evidence....... unfortunately this can be normal for rare T-Cells

These types of Lymphomas fit into the T-Cells group of Lymphomas and I do see that you have already joined our dedicated T-cell lymphomas support group.

This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

But I am happy to support you on this thread until you get a clear diagnosis......... or you may want to put up a post in the T-Cell group but as you will realise the group is not that busy due to the rare nature of T-Cells ((hugs))

Thank you so much for your reply. I knew absolutely nothing about blood cancers before all this but am rapidly learning that they are not straightforward! It's good to know that I'm not alone and that there's hopefully light at the end of the tunnel, even though it could be a bumpy road to get there.

Yes blood cancers are complicated as there are over 100 different types with the main types being Lymphomas that accounts for over 60 of the types, Leukaemia’s and Myelomas then there are the newer types that have been slowly re-classified over the years from being a blood disorder to be now classified as a blood cancer….    like myelodysplasia (MDS), myeloproliferative neoplasms (MPN), essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF)

So you do need to accept that this may take time and each treatment journey can often be completely different - My story is rather complicated See my story but this can be done ((hugs))

Hey you may have seen from my thread I'm travelling a very similar path. X-ray, CT, PET, then two biopsies...neck lymph node and bone marrow.  Had the first biopsy on 14 Jan and the second 21 Jan.  Also had a 3 day course of steroids whilst admitted to hospital (they did the biopsies as an inpatient so they could get the steroids going). Now everyone, doctors included, are waiting for the results of the biopsies....do stay in touch, about how you get on, I'll let you know when I hear anything which I hope will be soon given it will be 3 weeks on Tuesday.

That does sound very similar. How are you feeling after the lymph node biopsies? I've had a lot of facial and neck swelling. I've got my next appointment on 11th, so you may hear something before me!

It was a bit uncomfortable but couldnt really feel anything and certainly no pain.  I didn't / don't have any obvious lumps or bumps so they had to use an awkward one in the neck and use ultrasound to make sure they could find it and do the biopsy successfully.

Hi there I'm waiting on some results also had blood tests and ultrA sound scans on my neck when I found I had a lump on lymph node back in April. Told me it good be lymphoma I've had needle biopsy 10 weeks ago. It seems soo long g to wait and so nervous. Fingers crossed for you. 

The waiting is definitely hard. I'm hoping to finally get a diagnosis and treatment plan tomorrow, but I thought that at the last appointment too. I hope you don't have to wait too much longer.