I’ve had a double whammy re cancer diagnosis in the last couple of months. I’ve had various tests to determine whT type of Non Hodgkin’s Lymphoma ( possibly rare marginal zone one) A Pet/ct scan picked up a hot thyroid nodule. My Hematology/prof said unlikely to be anything but one of the tests I had last week after an incredibly painful bone marrow biopsy was a thyroid ultrasound and biopsy. The doc who did this said it was a very small 6mm papillary cancer, then took a needle biopsy ( awaiting results) He said so many more are detected by other scans and I’d probably had it a while. He advised that the current thinking is to leave it alone and have no treatment- just 6 monthly check ups.
However I’m awaiting the results of what type of non Hodgkin’s lymphoma, awaiting to have an endoscopy appointment. I have glands swollen - except for an enlarged spleen and my lymphocytes count is increasing. My platelets are slowly decreasing ( plotting a graph of my bloods).
The doc that did the ultrasound said no connection to my lymphoma. I have no other tumours ( yet). I feel ok just very tired and losing a bit of hair.
Do I have it cut out while I can ?
The unknown of waiting for diagnosis is very difficult. Has anyone had a similar experience experience?
Hey there Obiecat,
So sorry to hear about your recent issues!
I'm afraid I need to query something though, as something isn't sounding right. Did your ultrasound tech tell you that you had papillary thyroid cancer after just the ultrasound? Then took a sample of it? The folks doing ultrasounds usually aren't doctors, just as an FYI.
The reason I'm asking is that an ultrasound cannot Diagnose thyroid cancer. Categorically, it can't. It can show suspicious nodes, and depending on grading advise if an FNA is needed or not. But that's it. So if someone has told you that you have papillary cancer based on just an ultrasound then they need their knuckles rapped hard!
thanks for your message- I had a Pet/ct scan prior which showed a hot nodule. It was a doctor that did the ultrasound and biopsy. He advised that it was a 7mm Papillary thyroid cancer. I must admit I was supposed to her this before the biopsy results. I suppose he has seen many of the before.
I will post the results when I have them.
When I had my first ultrasound (no biopsy at that stage), the terminology the doctor used was "highly suspicious of papillary carcinoma". They identified micro calcifications by ultrasound as well as a small growth, which is what earned the highly suspicious tag. Mine was confirmed as a papillary carcinoma after a later biopsy, and whilst nobody categorically said You Have Cancer before the biopsy results, the conversations with the various professionals involved in my care prior left me in very little doubt what result to expect.
Your PET scan beforehand plus the ultrasound alone may have given them a degree of confidence in the diagnosis, or it may be the case that your doctor was a little less careful with their wording than they ought to have been; as Lass says, the biopsy results are usually required to know for sure. Either way, hope you get your results soon Michelle x
Hi your experience sounds very similar to mine. I was diagnosed with blood cancer, in case myeloma, in may 2018 and at the same time with hypothyroidism. Immediately I had thyroid inflammation and asked for a scan which revealed s nodule which the radiologist thought was suspicious although FNA was inconclusive. As I needed treatment for myeloma, including a stem cell transplant, I wasn't able to have the thyroid dealt with until July this year when I had s hemithyroidectomy. The biopsy revealed the nodule had been a small encapsulated papillary carcinoma and the inflammation Hashimotos.
A mutation of the gene BRAF 600e, which generally causes melanoma, is implicated in some papillary thyroid cancers and in some blood cancers, esp non Hodgkin's lymphoma, but also in 4% of myelomas. I suspect that I have this mutation ( my brother, father & aunt have had potentially BRAF mutation related cancers too). I am trying to be tested at the moment, if not on NHS then privately, as this could have implications for my myeloma treatment later. (I'm currently in remission, but myeloma always relapses).
I am waiting for a thyroid appointment scheduled for January at the hospital my myeloma is treated at- I haven't confidence in the Endo at the other one as he told me that the nodule would not be cancerous and that' I do not have autoimmune problems (Hashimotos is autoimmune). And I was left after the diagnosis of a papillary cancer with nothing but a follow up appointment in 12 months time, no info about TSH levels, or follow up of the inflammation I still have. Anyway I hope to be here for a long haul so it would be better to have it all dealt with by one hospital.
You asked about timing of removal of your nodule. I had little option to waiting a year or so, and in this time the nodule did not get significantly bigger. I had it rescanned early in the year which was reassuring. However if it is feasible to get it removed soon, I would, and would ask , if the nodule is cancerous, for it to be tested for BRAF mutation just in case this helps you later on.
Oh how much we have to learn as cancer patients!
PS Despite the diagnoses of two cancers and an autoimmune disorder eighteen months on I feel pretty well, a fraudulently well patient. The worst thing is getting the thyroid dealt with, not the direct consequence of the disease, so don't loose hope. I wish I'd had confidence I'd feel well again this time last year, if not 18 months ago when I was having the first of those awful BMBs.
Have you had the results back yet?
As others have said, they could give you a heads up that they thought it was cancer with their experience. But they cannot 100% know it is cancer from an ultrasound. They certainly can't know that it's papillary thyroid cancer, if it is cancer, then it might be follicular. There's also a couple of other types that are more rare, as well as different variants too.
So as I say, that Doctor needs told not to say things like that. Because regardless of skill and experience, there's just no way to be sure at that stage, and telling people a diagnosis like that is irresponsible.
I'm hoping you've got your results back by now, and the doctor was wrong. But if not, please shout if there's anything we can help with.
Genetic testing of lumps is quite often done in the US where the insurance companies pick up the bill. However in the UK, the lumps are almost never genetically tested because the cost is far too high with little to no benefit to discovering any mutation there might be. So asking for a lump to be tested on the NHS will 99.99% of the time result in an answer of no.
The UK has however recently done a trial around genetic testing. It is called the 100,000 genomes project if you want to look it up and have a read into what they are looking to accomplish. I was lucky enough to be a part of it and am waiting for my results to come back. So we'll see if it finds anything.
hoping you can give me more information about genetic tests on a thyroid tumour.
The initial FNA (two samples) came back as not cancer but they didn’t know what the nodule was so asked ne to come back three months later.
Three months later the ultrasound showed the nodule had grown so another FNA (three samples) was done.
The second FNA confirmed the nodule was a tumour but inconclusive for cancer so had half my thyroid removed.
Unfortunately some parts of the pathologist report is still inconclusive so the tumour has now been sent for genetic tests. I left the meeting yesterday unsure of what the genetic diagnosis will give that the pathologists tests couldn’t, don’t think I asked the right questions. Are you able to clarify for me please? Thanks
Hey there Dacsa
So, the pathologist takes samples of the nodules and lumps and looks at them through the microscope. They then, very basically, count the types of cell there are, and if there's more of a type of cell than there should be then it's classed as cancerous - because papillary and follicular cells do occur naturally in the thyroid. So it's when one of these starts to grow out of control that tumours start to form and spread. So if the pathologist isn't sure what they are looking at, and there are lots of reasons for that, then they will have to send the samples off for further testing - which can include genetic testing.
Genetic testing is where they take the cells and remove the DNA from it, then they sequence the DNA to look and see how all the parts line up. Again, this is all a very basic description and explanation. They then look for mutations in specific areas to see if the cells are cancerous or not, and the type of mutation should tell them what type of cancer it is, if it is cancer.
I hope that helps?
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