Non-Hodgkin lymphoma

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Reliability of ultrasound

stacynoe
Posted by

Hi. A quick background history - I was diagnosed with Stage 4 Lymphoplasmacytic Lymphoma in December 2016 - found by accident after a routine blood test (I have other conditions) and it was confirmed by a (very painful) bone marrow biopsy. I had no other symptoms and I'm currently on watch and wait.

Recently I found a lump in my back, I saw my GP who said it was probably just a fatty lump but he requested an ultrasound and said to see my haematologist. I saw her a few days later and she confirmed it was a lymph node - not particularly worrying but she would see what the ultrasound showed up. (She also said I'd got some tiny ones in my neck) I had the ultrasound yesterday and when I walked in, the radiologist hadn't looked at the PC screen so didn't even know why I was there, which wasn't a good start. To cut a long story short...when I told him I had a swollen lymph node in my back he said "I doubt that". I said "That's what I've been told", at which point he actually looked at the PC screen. He said it was very unusual to get a lymph node the back and asked "So when did you have lymphoma?" to which I replied "I've got it now". This really wasn't going well! Anyway, he asked me to show him, which I did, and he said "yeah it's a fatty lump". I told him that's what my GP thought but my haematologist said different (and, let's face it, she should know). He did the ultrasound and said "well I can't see anything suspicious but don't be surprised if you get sent for an MRI". I said that was weird, if there was nothing suspicious why would I need an MRI? He just laughed and said "Just don't be surprised".
I came away feeling very annoyed at his attitude. I didn't expect to be given any details yesterday but I didn't expect that either! I'm seeing my haematologist on Thursday so I'm sure she'll clear things up but I've got 2 more sleepless nights 'til then. I just wondered if anyone else has had a similar experience?

I posted on a lymphoma.org forum yesterday and one reply said ultrasounds aren't always reliable - this seems to be a common opinion from what I can see.

Thehighlander
Posted by

Hi Stacy, sorry you had to find us but welcome to our little corner of the Macmillan Community.

You just want reassurance when you go to get scans etc and sometimes (from experience) it just does not go that way all the time, its soooo frustrating and just puts the brain into over drive.

You are correct in that an ultrasounds is not much use for this type of investigation (so why send us??) and yes your Haematologist will most likely send you for a different type of scan.

If you don't have a follow up appointment with your Heamatologist you should look to make contact with the clinic to keep everything moving along.

We are always around to answer your questions.

Doh
Posted by

Just because they are health care professionals, it doesn’t automatically make them experts on all conditions.

Even some Haematologists seem to be painting by numbers.

Yes, Ultrasound is rubbish and you could expect a CT scan if the Ultrasound shows anything of concern.

My only other thought is that if you feel ok, you probably are.

debala
Posted by

Just my opinion - but just keep questioning the professionals. Agree with everyone here! Not all professionals are skilled/knowledgeable in all areas. The more questions you ask of the varied medical team members the more knowledge you will gain to be your own advocate. And perhaps it's a matter of starting with least invasive or damaging to investigate such as the ultrasound. It seems that with medical it's a lot of hurry up and wait! Good thoughts for you!

stacynoe
Posted by

These replies are reassuring, thank you. We thought similar - that they start with the quickest, cheapest and least invasive. My trouble has always been that I listen to the very little I'm told by the health professionals, accept it then forget to ask them questions. My partner is more pushy than me but sadly can't come with me to every appointment. 

My adult son is coming with me to my 3-month check/ultrasound follow-up today and I've told him to ask anything he wants to know. 

johnr
Posted by

Hi the advice we always give is have a little notebook to hand and as the questions pop into your head write them down, then you have all the questions you want or need to ask when you see the consultant. Also the are ties you have to become your own advocate, otherwise the system swallows you up and you become part of the processes and protocols.

John


pundamilia
Posted by

The whole question of diagnosis is very difficult particularly with lymphoma which is not in the lymph nodes.  I have two lumps on my head which are probably secondary lymphoma as I have marginal zone lymphoma which is now Stage 4 for 15 years.  My haematologist at the local hospital insisted they were cysts.  I insisted on being referred to Kings where there is an excellent blood cancer dermatologist.  She was not sure whether or not they were lymphoma and did not do any investigations.  She said that investigation would mean surgery.  Apparently even if they are secondary lymphoma nothing will be done about them as I am on watch and wait due to having myelodysplastic syndrome which is a form of leukaemia.

SimLuc2725
Posted by

Dear Stacynoe, 

I have just discovered this thread having avoided such sites with a passion.

I was diagnosed with Stage 4B Lymphoplasmacytic Lymphoma (reactive) this summer after a year challenging the NHS doctors; going back and forth between GPs and ENT specialists - all who missed it, the original GP commenting that I should keep an eye on the lump in my neck and the constant fatigue I was feeling, but nothing more, after all he had them too!

In the early part of the this year I took a job where I was fortunate enough to have private healthcare and it is through private appointments that I was able to discover what I later found out to be cancer. It is in my blood, bone marrow and there are multiple lymphomas in my body.

The lump in my neck continued to grow and I became increasingly worried. I was referred to an ENT professor in London who immediately sent for a very comprehensive group of blood tests where one highlighted that something was wrong, giving an exceptionally high reading. Then he sent me for an FNAC - fine needle aspiration cytology test (I had already had one of these through the NHS except that this one was also sent to Haematology for more testing). That raised a suspected low grade b-cell lymphoma which needed more investigation.

I then had a CT scan and a lumpectomy so the lump could be biopsied for analysis and diagnosis. Then I had a PET scan followed by a bone marrow test and more blood tests. All in all, this confirmed my cancer diagnosis and since it is aggressive, I was put on a course of chemo-immunotherapy (Rituximab and Bendamustine) which gives me the most awful nausea but thankfully my Haematologist understands that I have a phobia of being sick, is giving me enough anti-emetics to prevent this. There have been other side effects too but I am having great care which is important, though I cannot wait to return to my normal life again....

I have just completed my third cycle of four. While I feel absolutely lousy, I am quietly confident that I am beating the evil that is invading my body and affecting my life. I recently had more blood tests and another CT scan which showed there is some change and I don't have the multiple lymphomas in my body any longer, including my head. It's a huge relief but only made possible because of my job and private health. I honestly do not know what would have happened to me or where I would be had I persevered with the NHS. 

That said I would not be put off. You need to challenge people. Do this while you have energy. Ultrasound is only useful in the moment you are having an FNA (see above) and not as a diagnostic tool. You need blood tests, CT scans, PET scans, bone marrow tests etc. 

Good luck on your journey... x