Misdiagnosis? A complicated story

General chat
1

Hello everyone. Here’s a complicated one…

In 2023 I was diagnosed with Small lymphocytic lymphoma (SLL), and like others before me and those yet to come it was a shock. I am currently on Watch and wait with bi-annual testing. The original testing to go with my raised marker came from a blood test looking from something else.

In April 2022, 10 month before my diagnosis, I had a knee operation that subsequently got a wound infected with E-coil, within 2 weeks of this operation and before the dressing was removed, as per surgeons request. This infection started a massive battle to get this cleared up and this was finally achieved in January 2023. With a few clinics and a significant period of time getting to have my leg full heal, I was still in pain and sought a 2nd opinion in February 2025, to be told I have chronic osteomyelitis.

Now its this osteomyelitis that has raised a few points that are bothering me. I am researching the osteomyelitis and the treatment for that I received. I am told this was avoidable. No diagnosis was made prior to this 2nd opinion, following a MRI Scan, despite having a PET scan shortly after the Small lymphocytic lymphoma (SLL) was confirmed. Surely that should have been spotted them.

The pertinent point about the osteomyelitis and the infection, is that is seems that if its allowed to fester for any length of time, it can lead to lymph nodes and marrow getting infected and develop into Lymphoplasmacytic lymphoma, or AKA Waldenström’s macroglobulinemia (Waldenström macroglobulinaemia (WM))

Is this true? Is it possible that I’ve been mis-diagnosed and don’t have Small lymphocytic lymphoma (SLL) but have Waldenström macroglobulinaemia (WM) instead? I do know both are in the Non-Hodgkin’s Lymphomas category. How would I know? If its possible, how should I present my fears and get this revisited.

I have always had issues about the timing of the cancer diagnosis so soon after a massive spell of what is a bacterial infection. Co-incidence? Maybe, but bothersome nonetheless. I know the mental issues surrounding the issues of cancer, so I think you’ll appreciate what I am going through with this. As a lay person, I struggle to ask the right questions at the best of times, but this one has truly gotten under my skin.

I would really appreciate some views on this, expert views especially welcome.

Many thanks in advance of any points expressed.

Alan

2 Likes
2

Hello there @Alan, I’m really sorry to read of the complications you’re tolerating. I can’t even pretend to understand about those overlapping and possibly linked conditions, and it’s perhaps unlikely that other forum members share your unique health history.

But I bet Nurse @Heidi_BloodCancerUK and her great specialist colleagues at Blood Cancer UK can point you in the right direction and answer medical questions. You can also call them on 0808 2080 888 if you’d prefer.

Hope that helps, and that other forum members do comment too.

1 Like
3

Hi Duncan,

Thanks so much help with this. Since you’ve nudged Heidi, I will give her time to offer up a response here.

Any info, be it good or bad news and anything in between, best serves the community if its available for all to see. I do find questions and answers here, very helpful for my own consultations and if by getting a reply answers a question for somebody else that that will truly represent the old adage, of a problem shared is indeed a problem halved.

2 Likes
4

Hello Alan,

Sorry to hear about all of the issues you have had with your knee surgery, infections and Small lymphocytic lymphoma (SLL) diagnosis. It is good to know that your Small lymphocytic lymphoma (SLL) is stable and you’re being monitored. Apologies also, that this may be a lengthy reply, but I want to try and answer your post as best I can.

As you are probably aware osteomyelitis is a bone infection, and it can become chronic if not treated. So it is likely this was caused initially from your E.coli infection, but how it becomes chronic I am not sure. Are you still taking antibiotics? Are you under a specialist for your osteomyelitis, do you have reviews and pain management?

You’ve mentioned that you had an MRI scan and also a PET scan. I am not an expert but do know that the MRI and PET scans work differently. MRI looks at different structures and organs in the body, and the PET scan gives information on ‘function’. If you had an MRI for your knee, this would not have shown lymph node activity, and vice-versa the PET scan would not have shown structures in the knee. When either a PET scan or an MRI is requested, the person requesting it has to be quite specific of what they are potentially looking for, the scan will then be set for that area or organ for the best images.

Whilst I honestly can’t comment on your diagnosis of Small lymphocytic lymphoma (SLL) being caused by the initial infection in your knee or the chronic osteomyelitis, there is research that links causes of some lymphomas with viruses. Maybe your Haematologist can answer this question for you. Do let them know in your next appointment that you’ve got questions around what may have caused your whether your Small lymphocytic lymphoma (SLL) could have been caused . It’s also hard to say if the osteomyelitis could have been avoided, again this is something to ask the specialist you are under.

You’ve asked whether possibly you may have Waldenström macroglobulinaemia (WM) and not Small lymphocytic lymphoma (SLL). Again, I can’t really comment on your individual diagnosis, but it would be highly unlikely to be the case. To get most blood cancer diagnoses, there are blood test markers and also genetic tests that are specific to each type. With Waldenström macroglobulinaemia (WM) the blood tests often show an elevated level of paraprotein, (which can also happen in Small lymphocytic lymphoma (SLL)/Chronic lymphocytic leukaemia (CLL)) however, as high as 95% of people diagnosed with Waldenström macroglobulinaemia (WM) have the MYD88 gene mutation or the second most common is CXCR4 gene. Usually these genes would be tested from a bone marrow biopsy if blood tests showed a high paraprotein level. You could ask your Haematologist what markers have been done on your samples to conclude you have Small lymphocytic lymphoma (SLL), this could help to reassure you that the right tests were done.

I hope this is somewhat helpful and not more confusing, but if it would be helpful to talk any of this through, then you’d be more than welcome to call our support line. We could also discuss any questions you may want to ask your specialist too.

Take care, Heidi.

4 Likes
5

Thank you Heidi,

There is a lot to digest there, so thank-you for your lengthy reply, this is very much appreciated.

The Small lymphocytic lymphoma (SLL) was diagnosed just as the infection in tibia was finally cleared up after 7.5 months of an E.coli infection began days after a High Tibial Ostectomy, where the top of the tibia is sawn into and prised open and bone wedge inserted, to correct my gait and elevate pain.

I had Lymph node biopsies a few weeks prior to diagnosis. The Osteomyelitis was confirmed, when getting a 2nd opinion of to future possibilities in getting a total knee replacement, which confirmed that this will prevent future orthopaedic surgery was possible.

Heidi, you have given me plenty of information on how you see things and truly am grateful for that. I will print this out and show my Haematologist, what has been written and see if we can together find out these things to get some defined clarity to this.

My concerns stems from a few articles I’ve come across that suggest the Chronic lymphocytic leukaemia (CLL)/Small lymphocytic lymphoma (SLL) and Waldenström macroglobulinaemia (WM) present themselves in similar ways and can be mis-diagnosed. I’m a boat-builder, not in anyway medically inclined, and have heightened anxiety most of the time anyway, so you can imagine the mental hoops I am experiencing, and clearly want to be sure that I get the right treatment once (or if) it becomes necessary.

Once again thank you for giving me some foundations to work from at my next appointment in a couple of months.

5 Likes
6

Just a quick update, I am getting a face to face appointment on September 8th, armed with my notes and with some fantastic advice from Heidi here, I will keep you posted on how things go.

2 Likes
7

Great news @Alan I have learnt to be pleasantly assertive.

Look after yourself and yes, keep us posted

8

Thank you Erica, I learned the hard way that assuming the professionals dont get things wrong, doesn’t happen. Foolishly I ignored gut feelings to my detriment, and i am paying a price for that.

But we move on, lifes too short to stay at that bad place and not living.