Hematology

Hi sueCC and sorry to see you joining this corner of the Community. From reading your post and your profile you and your husband have had some journey.

First I will say at the very start that there are other 'blood disorders' other than Lymphomas, Leukemias and Myelomas....... that Hematologists cover so until he is actually given a 'blood cancer' diagnosis this is all guess work.

If it does turn out to be Lymphoma, Leukemia or Myeloma there are many types so this group may not be the correct one........ for instance there are actually over 60 types and subtypes of Lymphoma alone!!!!!....... but we can deal with that later on.

Basically a blood cancer can't be cut out (apart from where it is presenting in an area that is left threatening) so yes the main Treatments are one or a few from Chemotherapy, Radiotherapy, Immunotherapy, Stem Cell Transplant and a few others....... if you look at (my story) it will give you taste as to how things can pan out but my journey was very extreme and not many people would navigate this.

Chemotherapy Treatment is a selection of different drugs that are given over a a day or a few days then the rest of the 3 weeks cycle is rest then it starts again for say 6 cycles.

Radiotherapy is a targeted therapy that is used to break down a growth areas.

To prepare for your upcoming Hematologist appointment you may want to have a look at this link Questions to ask your medical team about Lymphoma as it can help you set out some questions you want to ask.

Let's hope that this is something that can be dealt with quickly and easily but we are here to help out as best as we can ((hugs))

Thank you so much, it’s lovely to know you’re always here.

Well he went for his gastroscope but they didn’t do it, they said they looked on his PET scan and could see nothing of concern and didn’t want to put him through it for no reason, so writing to the surgeon to say why but if surgeon wants it they’ll do it. He also said about the lymph nodes that  they wasnt so bad, my husband could of mis heard him as he’s a bit hard of hearing. But I feel a bit better now after hearing from you and they couldn’t see anything of concern on his PET scan. 
I’ll be back on Tuesday and thank you so very much Mick Xx

Oh Sue it’s all a rollercoaster, but let’s keep the nerve and see how this pans out ((hugs))

1. Really scared this morning, had another phone call yesterday we also have to go to urology this morning then on to hematology, just want it all to be over. Xx

Sue the one thing you will come to realise that in Lymphoma diagnosis it’s not a straightforward process. Over the years I was seen by a few different departments as part of the process - supportive ((hugs)) sent xx

Thanks Mike, it’s all a learning curve, I’d got my head around Bladder and Kidney cancer now a new one to deal with maybe but lovely you’re here, thanks x

Do get beck to us Sue once you have had the appointment. Try and ‘take in’ as much as you can, find out if he will be assigned a CNS and if so get their bane and contact details and once your appointment is finished go sit and have a cuppa and talk through everything that has been said as this helps ground the information ((hugs))

Thank you very much Thehighlander  the Lymphnoma turns out to be Non Hodgkin Follicular, was told it’s a slow growing one, if only a few lymph nodes involved he would have radiotherapy, if more than they just leave it, that was hard trying to understand that but apparently it isn’t curable and as I said slow growing, been as my husband 80 next year I’ll go with that. He had a load of blood taken and going to have a lumber punch so like you said a load of tests.

Urology went well no spread from Kidney but they still want him to have the gastroscope.

Thanks again you’ve been a great help in my time of need, I’ll look on the Follicular site Xx

Hi Sue, my type of NHL is also a Low Grade so I understand this journey well.

Do join the Follicular lymphoma group and introduce yourself and I will pick up your post there.

Had my biopsy, just waiting for results can’t sleep