Scan decision

Hi Hilo13 and a warm welcome to this corner of the Community although I am sorry to hear about your journey to date. 

I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic lymphocytic leukaemia (CLL) (I got this from your bio/profile) but 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 NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Scans?……. apart for pre treatment, mid treatment and my initial post treatment scans……. my consultants were not going to specifically do any other scans if I was not showing any symptoms…… mainly to reduce the amount of radiation exposure as there are risks relating to over exposure….. this is important.

Over my 25 years I have only ever had scans when my various consultants (Dermatologist, Oncology, Heamatology and Stem Cell Transplant) thought that they were required…… and for me it’s been the right decision.

You will see from my profile/bio that I have had 2 Allograft (donor) Stem Cell Transplants…… and without them I would have been gone 8-9 years ago…. But I turned 69 last Nov and I am living a great life.

We do actually have a dedicated CLL, SLL and HCL support group as well due to these types of blood cancers, in Hematology terms, actually coming under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.

Always around to chat,

Thankyou 

A conundrum most certainly. Lacking symptoms, less scanning is better. IIRC, a suspected relapse of CLL can be detected via blood tests. If so, I would think that regular blood tests would be appropriate. I have had an absolute tonne of scanning, yet have minimal effects that I know of. It is always a worry, but the further in the past it becomes, the more life intervenes and the less CLL is thought of. We can always hope and pray for the best, knowing that we hacve a second lease on life, so to speak. 

Thankyou for replying reading your story you have been so brave . I think I should point out that my CLL has transformed into richters syndrome as non Hodgkin lymphoma negative presenting as an aplastic . The prognosis is not good and really I don’t seem to be able to find too much about what’s next other than it will come back . Blood tests don’t show lymphoma only symptoms that I begin to experience. I will have another chat with consultant and see what happens. I wish you well. Thankyou for your positive words

Lymphoma is more difficult to detect in the blood. Indeed, it is normally physical symptoms which signal a relapse. In my case, I viewed each relapse as a challenge, the rub here being that we are not always in the mood for a challenge. Yet, time is our friend here, since research is ongoing and better, less toxic therapies are arriving fairly regularly. This is only my opinion, but scanning does not prevent relapse, it only confirm or denies the event.

Since lymphomas are usually detected via physical symptoms, the scanning is much less controversial at that point. In the interim, we simply move back into life with a much different perspective. 

Hi you have actually said more or less what my consultant said … scan if I have symptoms. Some of my family and friends say just to have it to see if anything is happening my cns was if the mind that might cause me more anxiety. At the minute fingers crossed I am doing ok recovering from the chemo and feeling physically stronger as for my emotions they could be better . Thankyou for replying everyone has  helped best wishes Chris 

16 years and four cancers with 3 relapses count for something. Cancer no longer frightens me. My advice: dig into life. Take up a new hobby. Re-start an old one! Dress up and hang out at the Ace Café. Things like that.  

Thankyou.