Hello
After thinking I had at least stage 3 bladder cancer I have been told that I have Malt lymphoma in my bladder instead.
This is going to have a much better outcome than having stage 3 bladder cancer.
I’m waiting for haematology appointments but in the meantime I’ve not been able to find out much info, I gather this is pretty rare.
Has anyone here had experience of this? What might I expect?
Thank you
Oh @Pictime it’s a new one on me! I’m glad you are feeling positive about it, although I can imagine it’s all been a lot to process.
I had a similar experience when my bone lesions were found - I had been led to believe they were secondary cancer and they were trying to find the tumour cause. Turned out to be Multiple Myeloma, which I’d never heard of and certainly isn’t a walk in the park, but I saw my life flash before me when an orthopaedic surgeon and my GP had previously said it was secondary! Crazy isn’t it, to be relieved to have blood cancer 
I’m assuming you’ve found this resource? About MALT lymphoma | Blood Cancer UK . Also macmillan have pages on it too.
The support team and nurses on this forum are amazing- @BloodCancerUK-SupportTeam @BloodCancerUK_Nurses
I’m sure they can help you in the interim while you wait for your haematology appointment to come through.
All the best xx
Hello there @Pictime, welcome to the forum at this worrying time. I’m really sorry to read you had concerns about bladder cancer which have gone on to be diagnosed as a type of blood cancer. What a lot to think about and I’m so glad you found the forum.
I won’t pretend I know what you can expect, living as I do with a different type of blood cancer called Polycythaemia vera ('PV'), plus as a fellow forum member I can’t offer medical advice anyway, but I see dear @Spangleystar has shared the great Blood Cancer UK information about MALT lymphoma which I would urge you to read.
The Macmillan information that @Spangleystar suggested is also really good, and their information about potential treatments is helpful: MALT lymphoma (NHL) | Macmillan Cancer Support
Lymphoma Action also have some great information for you: MALT lymphoma | Lymphoma Action
At this early stage after diagnosis it can really help to keep note of all your queries, big and small, no matter what comes up for you. You can take these notes to your appointments to ask your specialists.
You should be given the contact details of your own clinical nurse specialist (CNS), but in the meantime if you have any medical questions the lovely expert Blood Cancer UK nurses are at the end of the phone. Do consider giving them a call on 0808 2080 888.
I hope you don’t mind but I had a look around the forum and found a couple of threads where forum members have found out they have MALT lymphoma too, which may be of interest as there are some links to further information included: Suspicion of lymphoma and Recently Diagnosed and Stressed
If you’d like to reach out to others in any threads just pop an @ before someone’s username and they should get a notification. If you’d like to look further around the forum just use the search box at the top and I’m sure you’ll find others who can share their experiences.
May I just say I’m really sorry you’re in this position right now and to be very kind to yourself. Do lean on loved ones, and I’d say keeping busy in healthy ways between tests and results at this early stage might help alleviate some very understandable worries.
Do please keep us posted @Pictime.
Hello
Thank you both for replying. I feel fine about it. When I was told it was MALT lymphoma and not stage 3 bladder cancer I was most definitely euphoric. Happiest person with cancer that day.
Obviously I have no idea what is coming but it should hopefully be better than multiple organ removal (with permanent bag for wee) and whatever else they would have thrown at it.
I got a call from haematology today and my first appt is on the 16th of September.
Is anyone else a patient at kings college london? Urology were great (if a bit dr doom) so fingers crossed haematology there also good
I do have a fear though that my biopsy was mixed up with someone else’s, and they should have had the good news. That is what has killed my euphoria for now
Hi @Pictime
I was at UCLH and back to Worthing now, but have a friend under Kings for colorectal cancer, he is doing really well and full of praise for the team there, obviously a different team again but maybe it gives you some comfort on standards?
What do you think has prompted your fear of a biopsy mix up? Is it based on a previous patient mix up or some incorrect details, or one of those nagging self doubts ‘what if I’ve gone through a ‘phew’ moment and they’re going to tell me it was wrong after?’
If they asked you to confirm your details name, dob, address etc and you know your hospital number at the time of biopsy (which you can check against the sample results in your letter) I would expect there to be a very low risk of a mix up. Definitely raise it with your team, as the only outcome is clarification xx
Great stuff @Pictime, feeling fine about this would be my ideal scenario, and I love that you found something euphoric about what your diagnosis was not! Although of course I wish you didn’t have any reason to be using the forum at all.
Not personally had any dealings with London hospitals for blood cancer, nor can I recall other forum members mentioning them, so I’d say using the search box specifically for that will help you locate others faster.
Have you had a chance to look through the Lymphoma Action website? Pretty sure they organise conferences, which I’ve found to be great places to meet others with similarly rare disorders.
It might be the case that reaching out to the wider lymphoma survivor community around the forum here and other organisations will offer most relevant support. This was the case when I found others living with Polycythaemia vera ('PV') like myself as we often have very similar symptoms and tips for dealing with them.
Keep us posted @Pictime and I hope your upcoming haematology appointment will be really productive.
Aye Bladder Cancer is bad news and I accidentally once went to a Bladder Cancer meeting after misreading Bladder Cancer for Blood Cancer!I have Mycosis Fungoides one of the T Cell Lymphomas which are much rarer than the B Cell ones like MALT but the Bladder Cancer people were quite interested to hear about it especially when they found out that Paul Eddington of the Good Life and Yes Minister had died of it.As for MALT I’ve read about it and I think that it’s the one associated with a kind of bacteria in the gut.
Hello everyone
I had my handover from urology last week, he was pretty dismissive but I am finally believing that they didn’t mix up my biopsy with someone else’s.
First haematology appt on Wednesday. I imagine they will want to do some tests so no idea when I’ll start treatment but I’m not too worried. Hoping I don’t get chemo but that is only because I want to go to a festival in jan!
Hello again @Pictime, sounds like being handed over from the urologist may not be the biggest loss considering his bedside manner! I’m glad that you’re trusting the biopsy results. When in doubt, follow the science I’d say.
I hope your appointment on Wednesday goes really well, do you have your list of queries at the ready? Your haematologist may be like mine and appreciate you taking in questions and double-checking stuff you’ve read online with him.
It’s great that you’re not worried but I’d say anxiety is to be expected with health challenges like these so please know you can share however you’re doing here and people understand. If you’d like to read more about typical treatments just have a lot at those links above. Like you, I hope you don’t need anything beyond active monitoring @Pictime!
Keep us posted about Wednesday and beyond please—keep that festival in mind as a goal, what great thing to look forward to!
Hello everyone
I had my appointment yesterday. All very positive. I’m going to get a pet scan then they will decide between radiotherapy or 4 weeks of rituximab.
I’m under the impression it would have been watch and wait if I hadn’t been bleeding. Treatment should start in 4/6 weeks.
I was hoping to change careers but that will have to wait another couple of months.
Could be worse i could be getting my bladder taken out and much more invasive treatment!
Hello @Pictime,
Glad to read this update, and that your appointment went so well. Having a clear plan, even with the PET scan still to come, must feel like a relief after all the waiting and uncertainty?
I’m sorry about the career change being put on hold, it’s a real disappointment amongst the positives; I can relate, as I had plans to do a PhD when I got my diagnosis. Putting a festival on the calendar as something to aim for sounds like a great idea to me.
Keep posting whenever you need to, we’re here.
Take care,
Ceri - Blood Cancer UK Support Services