Hi All, I am still waiting for the Biopsy of the neck, and CT neck Scans, as well as a full body scan..
The dates are 4th September, for the neck scan, and full body scan, and the 14th September for the Ultra Sound Biopsy, both side of the neck.
It seems that I either have a separate small tumour, which I am told, is on the move from my Mandible area, to my Skull base, or a Lymphoma.
The Biopsy will be able to determine exactly what it is. and I will be advised as to what, and if there are any treatments available. I am well aware of the threat of secondary cancers, after CLL diagnosis, and am led to believe that Brain, Liver, and Lungs are a real threat.
As I may have mentioned, my CLL treatment which was ready to proceed before the tumour was found, has been put on indefinite hold. My Haematologist has told me to inform her as soon as I have the result of the Biopsy (I can't understand that, as she is part of the Multi Disciplinary Team . (MDT) involved in all of this.)
From what I have researched, and after, straight talking conversations, (No holds barred) with the ENT man and my GP, I am of the view that the tumour is related to a couple of earlier benign mixed parotid tumours taken out of the same area of my neck in 1974, and1984. the latter receiving Radium treatment.
If this is the case, I don't qualify for an operation which would be major, due to my age and medical history. It is in a tricky area seemingly, and as I have had radium treatment before in this area, it would not be used again, so as far as I can see, my options are limited.
The chances of it being Lymphoma are diminishing it seems, and I am getting used to that. However it is the waiting, which is the difficult part and it will be 2-3 months from when I was first told about the tumour, to when I finally get the results.
It is not too bad for me, as I am fairly well resigned to some bad news, but my close family are finding it difficult to accept, until the results come through, and we cannot invoke Plan B until they do.
I was told by my Haematologist, that she is a Locum, and has one retired Haematologist that helps out now and again, it appears that recruitment is a large problem. The same applies to the ENT department, they are short staffed and under great stress. I am also aware of the huge cancer waiting list for diagnosis and treatment, and that countless thousands are encountering similar problems to me.
Any information or views would be appreciated, all the best. Ron
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Hi Ron, I’m afraid I can’t offer you any expertise but I do know, as do many of us, how horrible those long delays are. I’m so sorry you have to endure that difficulty on top of everything else. I’m still keeping all fingers and toes crossed for you. Take good care.
Thanks Mogane, I think it's worse for close family, as they beed official confirmation.
I like to think I know my own body workings, better than anybody., and being a Worse Case Scenario' man, with a half bottle full attitude, I can still have a laugh during the wait, others find that difficult.
Thanks again for your interest, I wish you well, and hope you are going through one of the 'Good Periods' that very often occur with us CLL'ers.
Dear Ron, I have CLL and also a schwannoma, the latter for the past 10 years. In my case, the Schwannoma, nestled in my collarbone, growing out of the nerve which runs down my arm to the tip of my fingers, is benign. You don't say where you live? I am in the UK where I think you may be also because of your discussion about waiting lists and delays.
When my schwannoma was being diagnosed, they touched the nerve on which it grows, resulting in me almost leaping off the table as a searing pain shot down it to the tips of my fingers. It is now just being monitored and has grown only the smallest bit so far. Operating would be tricky, could hugely affect my arm, and will only be done should it grow so that it affects my swallowing.
But enough about me. Yours sounds like it is definitely moving and I can hear your fears that it may not be benign, although as I understand it, schwannomas usually are. I'm unclear where Lymphoma comes in, as that I think? is more likely to be cancer? But of course what you hope for is, whatever it is, it is benign.
Living with 'not knowing' is not easy and especially in today's climate of long waiting lists and delays. Worry can be debilitating on us all so the challenge for your family and yourself, I guess, is how to enjoy what there is to enjoy in the meantime, and not let WORRY dominate too much so that it takes away any small pleasures. Your dates of the tests are coming soon. Do let us know the results and of course, hoping for the best. Eleanor
JEEA, that was a most articulately written and, a realistic assessment , based on your own experiences, thank you so very much.
As you suggest, if I have a Schwannoma, or some other type of tumour, it being in an a tricky area, is a worry, as there will be no operation or radium treatment for me.
I can only hope that it slows down or stops for a (Long while)😀
As I said earlier, I personally don't think it's Lymphoma, and the two different ENT consultants, seem to differ on this. But as they say, util they get the Biopsy results we will not know for sure.
Before I got the 'Palsy Symptoms, I had already slight difficulty in swallowing, for many years prior.
You are spot on regarding the effects waiting can have on all concerned. Being a bottle half full person, I always grab any little hint of happiness.
You obviously have had your fair share of problems in the past, and it's good to hear you are being monitored, I wish you well, and thanks again, I am somewhat reassured and uplifted in some ways, by your words.
After all, what's the worst that can happen, apart from the worst😀
The waiting is so very hard. I have no wisdom to share other than support for you and your loved ones as you take each step on the path to discovery and next steps. Blessings to you and your family as you navigate your way.
You could get a third ENT consultation to add input, since your other two ENTs disagree. I requested and got a telephone consultation with a leading ENT specialist in another part of the country after I had my scans and med records sent to his clinic. He gave me good advice like having the biopsy done in a hospital operating room during a M-F time when a vascular surgeon would be available within minutes in case the biopsy of the mass which was in a tricky area ended up with a major blood vessel accident.
In my case the mass was so painful that general anesthesia was the only option I could imagine. The pathology was not a new tumor, and it was not Richters, just garden variety CLL and I did not need any rescue during the biopsy, which turned into a 2-hour surgery, and immediately upon waking up I was a happy and much healthier person. Two years later I still have scar tissue lumps I can feel and which show on CT scans, but have not increased in size.
I hope everything goes perfectly for you as well Ron
Thanks Classicaljazz, that was very interesting, and pertinent to me, I think. I was a little concerned about the two hour operation under general anesthetic.
Could I ask what part of your body was being Biopsy'd, and was it by Ultrasound, and why it was tricky.
I have been told that this is an ultrasound, two needle biopsy, of the neck, lymph nodes. under local anesthetic. The tumour is hard to get at, and remove or treat, as it starts at the Mandible area, and is moving towards the Skull Base.
I was told that it would be a major op, which in any event I would not qualify for, due to my age and complicated neck history, and previous tumours in that area, with Radium therapy.
As I said earlier, they think it could be either Lymphoma, or a separate Tumour in the parotid area. The consensus now sems that it could indeed be a related to old tumours taken out 40 - 50 years ago , followed by radium treatment.
In any event they are putting my CLL treatment, which was about to start, on hold, with all attention on the tumour. Although I am a bottle half full man, I don't like the sound of that, and where it's all going😀
I am glad you had a good result with your particular biopsy, it must have been very worrying for you at the time. It seems that it made a difference, and it sound like you may be going through a 'Settled' period at the moment, I do hope that is the case.
Thanks again, Classicaljazz, all the very best Ron.
It was on the side of my neck but impinging on a jugular vein, so would not have been safe to even try radiation. A couple months after surgery I started O+V and had an easy time completing the year of treatment--this got rid of all of the 3 to 5 cm lumps distributed everywhere else, but the scar tissue of multiple 2 cm nodes below my mandible are still palpable and show unchanged on MRI, CT, and sonogram scans. Before surgery, a PET scan SUV was over 10 --which turned out to be from the mass of enlarged infected necrotic lymph nodes and not a Richters or other tumor.
Thanks for sharing that, Classicaljazz. sounds dodgy and very painful, I'm glad it turned out well for you. This small tumour of mine is also under the left mandible.
I hope they can get a good Biopsy by Ultrasound, as I do not fancy going through what you did.
Thanks again for the info it was very helpful indeed.
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