Very confused! Cancer or not cancer?

djs
Occasional Contributor

Very confused! Cancer or not cancer?

I thought I would start a new topic about my cancer or not cancer. I was told I had cancer in my neck in early March this year after having a CT scan,  MRI scan and Ultrasound with Aspiration to take a biopsy from my right lymph node. So then I had a PET scan and had a tumour behind my right tonsil and at the base of my tongue. So they were going to remove them but ended up just taking a biopsy of both. The tests came back negative.  So after more CT scans and ultrasounds that showed the cancer in my lymph node had grown from 15x13x20mm to 36x13x21mm. 

They decided to remove the tumour from the base of my tongue and from behind my tonsil. After the operation I was told the tumour behind my tonsil had grown from my scans and had started to attach to the muscle in my neck. They both came back negative so I was classified as secondary cancer in my lymph node without a primary cancer. 

So Thursday 30/06/22 I was told they were looking at treating me with a very aggressive kemo for 5 day's a week for 6 week's and then Radiation therapy because although it was classified as a MSS ( Squamous Cell Carcinoma ) they didn't know exactly which one. 

 

This is were it really gets interesting. 

Because every sample has come back negative for cancer except for the first pathology test. So I was sent for another CT scan with contrast and then an Ultrasound with a biopsy from my lymph node. This time it was where they stick a 16 gauge needle in my neck and then something to take small chunks. On Thursday 7/7 I was told it had come back negative??? 

 

So after 4 months of scans, test's, operations and in and out of hospital they now think I might not have cancer! They are having everything that has been test, will be disected down to the smallest peices to make sure they haven't missed anything and get the original biopsy retested to see if it was mistakenly diagnosed? 

 

I'm not throwing a party just yet as I understand that because they only test a part of the samples and could of missed an active bit of cancer, I will wait.

 

So after not know, mind playing game's with all the worst outcomes, the unbelievable pain from having my tonsil and base of tongue removed.  To now I might never of had cancer, still in a different pain as it still must be an infection in my lymph node.  

I really am in limbo land. 

But just thought I would share this with everyone. 

David.

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Debbie1957
Occasional Contributor

Re: Very confused! Cancer or not cancer?

I was just told they found 2 cancer cells in the fluid removed from the lining of my lung.  I have no appt yet - waiting (anxiously).  Hearing your story makes me worried.  Are we basically guinea pigs for them? 

 

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djs
Occasional Contributor

Re: Very confused! Cancer or not cancer?

Hi Debbie, sorry to hear but no I don't think we are.  Yes mine has been a long slow process but being in my lymph node's ( and I only just found out on Monday that there are a few in the neck ) that yes they could of taken samples from the wrong lymph node.  More to what I've been told is that bit's of cancer can die so there are 2 reason's for getting a negative return. 

I am being treated as my first biopsy which was active. I've just gone through CT scan,  PET scan and biopsy on both lymph nodes, but this time a Radiation doctor showed exactly where they wanted the sample's taken. On my right hand side it was about an inch down my neck from where the kast one was taken. 

Yes it is confusing and your mind plays game's. All you can do is write down every question you can think of, and ask. Make sure you take someone with you to either just help listen to what they say or they might ask something you might of forgotten. 

Please remember yes I was very confused but everyone that you see is trying to make sure that they get all the cancer with the right treatments so you can make a full recovery as it's not like a normal illness. I've found put my feeling's, frustrations on here has helped. 

All the best.

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