I am so confused and have no trust in the hospital.
Last year I was diagnosed with Follicular NH lymphoma in three lymph nodes in the stomach area. They said that it was slow growing and wanted to a a 'Watch and Watch' treatment. I was seen twice with a 3 month follow up appointments then they moved me to six months follow-up.
At the last appointment I was not feeling great and I had said something is not right, but all I got told was, your bloods are fine and it is not related to your blood cancer. I then asked when my CT scan was as I was told by letter I would have one in August this year. It was quickly dismissed and told, you dont need one as your bloods are fine. I fought for it, and got a CT scan in June.
Again the result letter said all is fine with your lymphoma but there is something showing up behind your nose so being referred to the ENT department.
Went along, got the camera up the nose and told I was on the emergency biopsy list for a biopsy in the sinus. I was always hopeful that it was something else, as I gave my symptoms to my local doctor and was told it was hayfever.
Well, last week I was told that it is lymphoma cancer in the sinus. The cancer nurse said but all is okay so we are doing nothing. I was so angry on the phone and said what about all the issues I have. The reply was ooh, didnt know that, well read my notes!!!
I feel the doctor has not seen me, to tell me is it the same lymphoma cancer (which I suspect it is), what stage is it at etc.
I am going to the hospital this week, but I feel totally drained that I have to fight for them to listen to me. I am so scared as it in the face, close the throat and brain. To me, having the lymphoma spread within 10 months is not slow growing and something to 'watch and wait'.
Am I over re-acting to the results, has anyone got advice for me for the appointment, thank you.
Hi again Nana Lou sorry to hear about your challenges. The problem with Low-grade non-Hodgkin lymphomas like your Follicular Lymphoma and indeed my Cutaneous T-Cell Lymphoma that I have lived with for over 25 years is comprehending what slow growing actually means.
High-grade NHLs is more understandable as it can grow significantly within a few weeks/months making treatment imperative……. This happened to me in late 2013 when my second aggressive type of Cutaneous T-Cell NHL appeared taking me to stage 4.
Over the years I have helped out on this Community but also with Lymphoma Action….. on their Support Platforms your story is ever so familiar….. with many people with FL…… reaching stage 4 (Staging in Lymphoma is rather different from solid tumour cancers like Kidney, Lung, Breast) and not reaching the point where treatment is required……
It can be confusing and unfortunately some medical professionals know exactly what is going on…… but their ability to convey this information in a way that ‘we’ understand at times can be lacking.
The link below is a set of questions that are separated into the various parts of the Lymphoma journey.
Questions to ask your medical team about lymphoma
You need to prepare for your appointment next week and ensure that you ask the right questions that will help you understand exactly what is going on…… and don’t leave the appointment until you have a clear understanding.
Yes on paper, if Lymphoma appears above the diaphragm it is classed as stage 4……. But it’s all down to where it is presenting that triggers full on treatment.
My skin was 70% covered with tumours and on paper I could/should have been classed as stage 4 but it took 14 years before it showed up in an area (in my neck) that pressed the green button for full on treatments.
