Hello folks
I had a diagnosis of NHFL Stage II (pelvis) two weeks ago. It took 11 weeks from the GP requesting an X-ray to getting the diagnosis (via the 2WW cancer pathway). The consultant haematologist has confirmed that first line treatment will be radiotherapy and I’m still waiting to see the Clinical Oncologist (who has been on annual leave for two weeks), so I don’t yet have an appointment.
Whilst trying to get my head around the NHFL, clinicians called to tell me that the PET CT scan showed a separate area of illumination on the left breast, and I’m now on a 2WW with the breast team (no confirmed appointments as yet).
I had a hip replacement in June (difficult recovery) and currently scheduled for a total knee replacement in November. All of the cancer clinicians I’ve spoken to have suggested not to cancel anything until we know more. But the clock is ticking.
I've been told that Clinical Oncology and the Orthopod/hospital will have to liaise and separate MDTs decide what should come first.
The knee is really painful (bone-on-bone) and has impeded the hip rehab.
And then there’s that curveball of another area of illumination.
Does anyone have experience of two primary cancers being identified in this way? [Appreciate that we don’t know what it is yet.]
And I’m assuming that Lymphoma patients can have major surgeries (0.2 lymphocytes). Does anyone have experience of additional safeguards put in place for their surgery?
It’s all been a bit of a rollercoaster ride - so many questions and a distinct lack of answers at the moment. But I’m sure it will come together at some point.
Mike (aka The Highlander): I’ve read several of your posts; your journey is inspirational!
Thank you to anyone who takes the time to read my post.
One takeaway is that I definitely need to be kinder to myself!
Take care
Hi Olliefreddiecat and very warm welcome to our little corner of Community although I am sorry that you had to find us and especially sorry to hear about your FL diagnosis and the other challenges you are having.
I am indeed Mike the Highlander and unfortunately glad to meet you.
As you may have seen I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)……. your FL falls into the same grouping of slow growing NHLs.
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’ is different I most definitely appreciate the challenges of this journey rather well……. I was also diagnosed with Asbestosis in 2012 and Prostate Cancer this April past.
I have to say that your 11 weeks from your GP requesting an X-ray to getting the diagnosis is actually fast compared to many people as Lymphoma is at times very difficult to diagnose……. In my case back in 1999/2000 it took a full year and 6 biopsies.
I have had 45 sessions of Radiotherapy having 5, 10 and 30 sessions and on the whole, compared to my chemo and Stem Cell Transplant…… radiotherapy was a walk in the park.
I can’t see any reason for you not being able to have surgery…… it will all obviously depend on your blood counts being good and there not being an increased infection risk.
The breast ‘thing’ could be anything…,,, but based on my long experience I have had a number of ‘things’ show up on scan over the years only to be found that they were not an issue……. of course as Lymphoma can turn up anywhere it could be a small spot of Lymphoma…. Time will tell.
You just have to trust the various trans who meet at the weekly MDT meetings to get the best plan in place for you.
Always around d to chat.
I totally understand the control issues having been in teaching in Further Education for 20 years…… you will have to develop the ability to ride the waves….. yes there will be sum bumps to navigate but on the whole your FL just like my 2 T-Cell NHLs are treatable as and when required 
