Hello everyone,
Just before Christmas I had a CT scan on my pelvis. It was discovered that I have Prostate cancer and a lump in my bladder. A biopsy was taken and a month later it was diagnosed as a low grade marginal b nhl. It was not anywhere else in my lymphatic system. I have tried to find out more about this and found it nigh impossible to get any information as it is very rare 0.02%. I have very little faith in my haematologist who is totally different from my oncologist. I have just completed hormone and radiotherapy treatment for my prostate cancer and I need now to tackle my nhl. My haematologist doesn't seem too bothered and has adopted the watch and wait approach which I'm not comfortable with because a good friend died of nhl.
Hi RAYW and a second welcome to this corner of the community. I am Mike and help out around our Lymphoma Groups.
Lymphoma is the UKs 5th most common type of cancer. it's a very complicated condition with over 60 types and sub types and one treatment 'size' does not fit all....... and the treatment approach will be very very different from your Prostate Cancer.
Had you been diagnosed with a High Grade Non-Hodgkins Lymphoma you would most likely have started treatment very quickly as this tends to be a very aggressive type of Lymphoma the same as Hodgkin's Lymphoma........... but when it comes to Low-grade Non-Hodgkin lymphoma these tend to require a completely different approach.
There are few types of Marginal Zone lymphomas and these represent a good % of all types of NHL.
Extranodal marginal zone lymphoma (also called MALT lymphoma)
Splenic marginal zone lymphoma
I was diagnosed way back in 1999 with a different - very rare Cutaneous T-Cell (Skin) NHL..... my type fits into the little light green section of the graph above.
My CTCL is also Low Grade Indolent and although I had to have some skin treatments - the same as someone with very bad Psoriasis has....... it took over 14 years before I needed any big gun treatments like Chemo, Radiotherapy and eventually Stem Cell Transplant (see my profile)
I was on Active monitoring (watch and wait) for all that time. Sometimes, lymphoma doesn’t need treatment straight away. Instead, you have regular check-ups with to monitor your health and to see how the lymphoma is affecting you. You don’t start treatment unless the lymphoma begins to cause significant health problems.
You say that your "haematologist doesn't seem too bothered"......... in some respects this is true as at this point in time there is very little to treat...... and if you jump into treatment quickly it would most likely not have the same effect on your condition as if it's used at just the right time.
My Hematologist is a very dry, to the point...... even obnoxious person but is very good at his job. As Londoner12 says you could look to get a second opinion or see another consultant in the unit (if there is one).
Many types of Low Grade NHL are incurable but very treatable..... as I said i have been on my journey for over 23 years now. Had lots of treatment and I am now coming up to 6 years in remission.... but I am not cured and never will be.
When it comes to Lymphoma you are not comparing like with like so I would imagine that your friend most likely had one of the aggressive type.
Always around to chat.
