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New member in diagnosis stage for a tumour + Lymphoma

23 Apr 2022 19:33

Hi I'm Marc, new member. Expat in Spain planning to return to UK for good.. In my early 60s.  This week had CT scan, blood tests. Start of next week 3 more appointments.  First one I think haemotology again to take a sample from a gland or node, and later on day another but I not sure what. I'm still at the waiting to find out stage but coping OK. Only a few days have gone by but feels like a month!

This has been a crazy ride this last week or two. Since last autumn I had been going to GP about a hard lump under skin, a 'cyst', then next visit it gets called a 'lump' , then called a 'lipoma', on waiting list for non-urgent surgery to have 'sabaceous cyst' removed, probably one year with covid. Then while waiting months, the lump changed and increased size at which point I went private and got biopsy done of it, just for my own peace of mind. I calmly collected the report, sat down with a coffee shop nearby to read the biopsy report and my jaw dropped with total disbelief. Very malignant and full of bad CD.. / bcl-.. code numbers. The moment I showed it to my GP all hell then broke loose. 

Now the crazy thing is I'm suddenly getting phone calls to come in for surgery to have the 'lump' removed, in first week May, I ask them if they know about a lymphoma diagnosis they know nothing about it. I now I feel nervous about having this "cyst" 'removed and sent of for routine biopsy', with what with what's been going on so far.. So this is my story so far. I think this is going to be crazy.

 

 

New member in diagnosis stage for a tumour + Lymphoma

25 Apr 2022 15:23 in response to marcexpat

Hi Marc,

Welcome to Cancer Chat. It sounds like you've been through a fair bit with this recently, but also that you have been dealing with things well. I'm sure it must all have been at times confusing and worrying.

If you have any doubts, concerns or questions, keep speaking to your doctor/specialist so that you can get any reassurance you need, as well as understanding any next steps.

Hopefully you'll receive further replies from other members of the forum soon.

I hope things go well with your next appointments.

Wishing you all the best,

Ben
Cancer Chat Moderator

New member in diagnosis stage for a tumour + Lymphoma

25 Apr 2022 22:29 in response to marcexpat

Thanks Ben. 

Thinking about all this, what's driven me to kick up such a fuss getting a biopsy was my own past experience. I suspect I might have had a low grade non-symptomatic lymphoma for many years. I say this because about 15 years ago I had a 'boil' come up on neck which grew slowly, I'd been to GP several times treated as a lipoma which is not covered by the NHS unless causing problem while on long waiting list.  Then started growing quicker.and people mentioned it to me, I put it off then I went to my GP about something else unrelated and then right after dealing with what I'd came for, he said something like  "Please do not get up and leave, I want you to stay with me here while I make some phone calls"  A week later I had a appointmernt to have the 'lipoma' removed.   I asked at the time about whether there's a routine test of what they cut out and I don't remember what I was told, probably evaded the questionI , certainly never did hear any more.   So this brings me to the current day, I had another of these 'lipomas', while on waiting list it suddenly changed and grew. But this time there'e no "stay there while I make phone call" and passed more weeks and weeks of "cyst", "fatty lump" etc.

I decided to get a biopsy done, just to put my mind at rest - but instead it did the complete opposite.

New member in diagnosis stage for a tumour + Lymphoma

25 Apr 2022 23:14 in response to marcexpat

Hi Marc ,  I'm sure this must an incredibly worrying time for you , but all the help , support and information are close at hand .

Make a list of all your concerns and worries as its sometimes difficult to recall each and every important thing of concern when talking with your consultant or nurse . Making sure they know your worries will help them to answer any questions you may have , allay any fears and help you understand everything without information overload. 

Wishing you all the best .

Stay strong ! 

Paul. 

 

New member in diagnosis stage for a tumour + Lymphoma

12 May 2022 18:23 in response to Moderator Ben

It gets worse. Diagnosis clearly gone off the rails and everyone talk to just keeps refering back to the 'diagnosis', which is chasing a red herring and doing all the wrong tests.  Tumour doubled in size. Of course all these tests for systemic involvement and "B symptoms" etc. of course will come back negative, because I haven't got them (yet anyway).  I can see where this is going: "watch and wait" me into getting what they've misdiagnosed me with, and (eventually) end up with the wrong treatment for what I don't have which probably won't work, because there's been no lymph node biopsy or cytogenics for example. No way hosé.

Anyway cut a long story short (to salvage what can from the 'diagnosis') I ended up seeing the chief of the haemotology department of the lab where they analysed the biospy in the first place. Showed him the point where things gone screwy. Right after that happened that moment again "stay here while I make some phone calls" very similar to 15 years ago. He then told his pathologist urgently revise the biopsy report fill in crucial missing information (i.e. sub-typing) ,to clarify pathological context and update the hospital. I notice now in my electronic patient history 'Preliminary diagnosis' has quietly appeared. It's worth a try.

I've taken this privately now. I'm starting a independent diagnosis to find what I've actually got and the get that fixed at source, without going down the watch & wait route. It seems I've got an LNH-DLBCL, extranodular. Yet to be differentiated. Likely DLBCL-ABC because of how all the other test results fit in so far. Need more tests which the hospital hadn't got.  I've booked a private PET scan to see for signs of 'diffuse' type.

I'm a scientist by the way.

 

New member in diagnosis stage for a tumour + Lymphoma

13 May 2022 22:35 in response to marcexpat

Hi Marcexpat,

I have found your post very interesting. I am awaiting cytology and histology results on a lump which I was told was various types of benign cyst before it was removed. Mine was in a more unusual area (my buttock) but has been the source of a lot of discomfort. After removal the surgeon didn't actually say what he thought it was, and I am now 6 weeks down the line waiting for diagnosis. I found out today that samples of my lump have been sent to another lab (was told this rarely happens) and they don't really know when the result will be back. I guess what I am trying to say is that lumps shouldn't be ignored, however 'benign' they may seem. I hope that now you know what you have, you will get the right treatment.

New member in diagnosis stage for a tumour + Lymphoma

15 May 2022 12:05 in response to Songbird68

It's great you're getting cytology/FISH because without it they wouldn't know which chromsone pair has transposed for chemo, they could give you a wrong one and cause more harm than good. Pathology on removed lump biospies often varies, so a different lab is good idea, and doesn't have to take weeks, computerised. It's much better to take a bit of time get the diagnosis right first time, than waste time following the wrong diagnosis and treatment for something you haven't got.

With me not in bone marrow (yet?).  And all these negative results of course is what they're recording on the system. Curiously, they've never done a lymph node biopsy which is supposed to be the very first thing with a lymphoma. Also I realise now by looking at my CT imaging - it doesn't include the tumour. They stopped the scanner before reaching it and then reposed me to place it behind the scanning path. there's two overlapping scans where the tumour would had been. Maybe that's standard practice?

I'm not keenon letting the hospital 'watch & wait me' to let it proliferate into what they've currently misdiagnosed me with, so I've little confidence the appointments are going to help, but will salvage what I can, which will help now I've had to go private.