Hello everyone,
I'm posting here to introduce myself, along with my wife, who has recently been diagnosed with CLL/SLL, following a punch biopsy on a lump on the side of her breast. Right now, despite having had an initial consultation with a Consultant Haematologist in the Oncology Unit of our hospital, we feel like we are in a holding pattern. They've been extremely good about answering some initial questions we have, and some we didn't know we had (!) about my wife's 'potential' treatment, and she's been given a specialist nurse contact for any questions and help with arrangements and appointments.
Despite the Oncology Unit's care and concern, it feels like we are waiting extraordinarily long times (months) between biopsy, bloods and initial consultation, CT scan and follow-up appointments. That waiting time must be some sign that they aren't too worried, right, or is that too much to read into what may just be a huge demand on the service? She had her biopsy in late February with results in early March. Her bloods and initial consultation was in the second week of April, her CT scan appointment is in a few days' time, and the follow up to that scan is in the first week of June.
My wife was initially diagnosed with Monoclonal B-cell Lymphocytosis, in 2018, after reporting to her GP with fatigue and higher lymphocyte counts. A full blood panel was taken and she was found to have the 13q deletion as well as some abnormalities on the TP53 (but at that time these abnormalities weren't analysed or taken into account for any diagnosis/prognosis). She has been really good in pushing for regular follow up bloods, which showed a steady increase in white blood cell count, low red blood cell count but no real crossing over a threshold that would flag up a conversion of MBL to CLL/SLL. I guess the other factor that is important in her story is that her father also had non-Hodgkins Lymphoma and eventually (14 years post diagnosis) died from it.
As I've read before, the psychological toll of not knowing what to expect, or what her prognosis is is horrible, especially for her. I wish we could be the kind of people who could shelve our worries until we know for certain what the doctors have planned for my wife (and me, by extension), but we aren't. We are trying to be philosophical about this, and I want to be as supportive as I can for her, but having to go from metaphorically sleeping to sprinting in researching everything about these diseases, is mind-blowing. Where to start with information? The pamphlets and books we've been given are helpful in explaining the overall condition, but I guess we are hoping that people here will be able to give us the practicalities of living with CLL/SLL, and how to navigate these new waters. Is it typical with this type of cancer to have such long waiting time in between diagnostic procedures and potential treatment? If so, does it get easier to deal with the waiting?
I realise that everyone here is on their own journey, and we are only beginning ours. I'm hoping that I won't ask the ridiculous or ignorant questions here, or say the things that really aren't helpful to other people's situations. Mostly, I just want to be able to support my wife while she is going through this extremely difficult time, and I am grateful for everyone's input about their experiences.
Thank you everyone who takes the time to read this, and thank you to anyone who might help us out with a few words of support. It does mean a lot to be seen and understood, to ask questions and seek support.
Hi HHOG and a warm welcome to this corner of the Community although I am sorry to see folks joining us and sorry to hear about your wife’s CLL/SLL diagnosis especially on the back of her father have had NHL
I am Mike and I help out around our various Blood Cancer groups. I don’t have CLL/SLL 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.
There are a number of active members on the group at the moment so let’s look for them to pick up on your post.
Although CLL/SLL has the word Leukaemia in it, in Heamatology terms it actually comes under the big umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say….. but this is why CLL, SLL and HCL have a group on their own.
it typical with this type of cancer to have such long waiting time in between diagnostic procedures and potential treatment?
Based on my long experience (See my story) the time it takes to get a clear diagnosis and plan put together can indeed be long. With over 60 types and sub-types of Lymphoma with low-grades like NHLs and CLL/SLL/HCL being hard to diagnose it just takes time……. But unlike fast growing high-grade NHLs the time will not make much difference….. if any to outcomes.
When I was diagnosed with my CTCL back in 1999 it actually took 6 biopsies and a full year for the pathology to pinpoint my type……. our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years then in late 2013 my more aggressive fast growing High-Grade NHL came along taking me to stage 4……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and as a family we celebrated 9.5 years since my last treatment.
I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
Please do also check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment.
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others….. both patients and caregivers who have or are walking the journey.
I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.….. both for patients and caregivers.
They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
I am always around to help more, just to chat and to answer questions.
