About djs

djs

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.

djs

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.

djs

Hi, I was interested in reading you comments as I'm just 2 weeks after having the base of my tongue removed and my right Tonsil. Just starting to eat really soft meat with vegetables, but small bit's at a time, retraining the tongue to close the wind pipe after the pain is under control is frustrating, I'm glad you are getting there. David.

djs

Hi all, I have a SCC cancer in my Right Lymph Node, it has doubled in size in 9 weeks. I've had a tumour and my right Tonsil removed, I also had a tumour and the base of my tongue removed. Both came back negative. So they can't find a primary cancer. I'm having a CT scan with contrast next Tuesday, then a meeting with ENT surgeon, Chemo therapist, Radiation therapist, Ocologist to discuss what's next. The surgeon today said that they are looking at Chemotherapy 5 day's a week for 6 week's. Then Radiation instead of removing the Lymph Node. Just wondering if anyone has gone through this amount of Chemo? I understand that it affects everyone differently, but just a bit of insight would help. It might even just give me some questions to ask? Thank you. David.

djs

Hi SCH, thanks. I understand there are people out there reading and understanding. As I said it helps just to get it out, even on paper. Thanks.

djs

Hi Linda, thank you. I have a meeting Thursday, the cancer in my lymph node has doubled in size over the past 2 months. I'm still positive but the mind is very dangerous, the game's it plays. I've noticed how it would be easier if when you are diagnosed with cancer, you were allocated someone you could contact for support, advice and ask questions? The only person I have is the head nurse that passes on my question to the ENT surgeon's who sometimes get back if they can. Thanks again.

djs

Hello all, well I'm back to were I started from. After having surgery to remove 2 tumors, 1 from the base of my tongue and 1 from my right tonsil which was a lot larger than the scans showed and it had started to attached to the muscle so they had to go in much further, I ended up back in hospital with swelling that made it hard to swallow. I missed my appointment with the ENT surgeon and speech therapist. While in hospital I spoke to a ENT surgeon and found out both tumors are negative. So as I have cancer in my right lymph node I still don't have a primary cancer. Although it will need to be discussed from what I understand it might be having the lymph node removed first, or it would be Radiation therapy from my ear down my neck to my shoulder's? Which I don't think I would enjoy to much. I think the hardest park is the not knowing. It's so hard to stop your mind from thinking of all the worst outcomes. It's great to be able to just put your feelings on here even if no one answer's. I understand that eventually most get a team to help them even if it sound's like some arn't happy with them, it still good to just let it out.

djs

Hi Linda, thank you. They have given me what they could but all it does is take it from 20 out of 10 to 7-8 out of 10. I know they don't want the pain completely gone as I might forget and cause damage if I eat the wrong things. Also because they removed the base of my tongue I gave to remeber so I make it close my air way first.

djs

I had an operation on 15/06/2022 to have my right tonsil tumor removed that ended up being bigger than the scans showed and it had started to attach to the muscle in my neck. They also took the base of my tongue that also had a tumor. I can now feel so sorry for anyone that has had this done as the pain is unbelievable and it never stops. I'm hoping to get the biopsy results back on Thursday and see a speech therapist because of having trouble swallowing.

djs

Thanks Linda, my GP has made phone call's, I have also spoken to the head nurse. I know the hospital has people away and although I'm category one, supposedly my operation has to be done by a specialist surgeon who only works there on a Wednesday. Everything seems to take 2 week's to happen and the surgeon's meet on a Thursday to discuss every case. Yes all cancer case's are different.

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