Hello,
I’m 29 and in April I was diagnosed with an extremely rare form of soft tissue ewing sarcoma, which is in my lymph nodes of my neck only.
I’ve had 9 rounds of chemotherapy and recently had a neck dissection. The surgeon removed 33 lymph nodes and of those lymph nodes, only one tested positive for cancer and was inactive. All lymph nodes around the area were removed also as a precaution.
I’ve only been able to meet my surgeon so far to discuss these results and he said I’ll meet my oncologist to discuss possible radiotherapy or chemotherapy.
I can understand the possible need for chemotherapy, but why radiotherapy? I thought that radiotherapy had to be aimed at cancer? But if there’s no cancer left in the neck, how can they suggest radiotherapy?
I’m really against having RT, mainly because I suffered so much with mouth ulcers during chemotherapy.
Can anybody give advice/ shed any light? It’s a horror having to wait over the Christmas period to find out what’s next.
Hi. There are many more than 33 nodes in your neck, around 300 so the surgeon hasn’t taken all of them away on one side. Small cancers can’t be spotted on a scan. The pathologist found cancer in one hence the opinion that RT is needed to mop up any remaining cancer.
See if your CNS is around tomorrow and give them a ring to clarify.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
Thank-you so much for getting back to me, I really appreciate it.
I understand a bit more now thank-you. I don’t really understand how radiotherapy works so I will look into this too.
Hi,
Both my surgeon and my oncologist were of the opinion that ‘in all likelihood’ all of my cancer had been removed via surgery however and as Dani says, there are microscopic cancers that can’t be seen by either the naked eye or by scans.
Even though I probably did have (hopefully) all of the cancer removed, the above was explained to me and that cancer cells move from the tonsil to the lymph nodes via lymphatic channels. So in essence, my RT isn’t being aimed at a tumour per se, it's hitting the area of my neck dissection, between there and where my tonsil was.
I saw my planning scan and it looked like two large circle(ish) areas. The inner circle was getting 60gy and the outer circle a lesser dose.
Hope this makes sense
Radiotherapy uses high powered X-rays that damage DNA. Cancer cells can’t recover whereas normal tissue does. I had a cancer in the tonsil tissues at the base of my tongue. The scans didn’t show any lymph node spread but I had my neck targeted anyway just to be sure.
Your hospital may well let you look round the radiotherapy suite and the radiographers should be able to answer questions about it.
When you meet up with your oncologist after Christmas just make sure he explains everything so that you understand.
When you have a plan we can support you as well.
Good luck .
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
Thankyou for taking the time to get back to me and for explaining.
Please could I ask if you were given a choice between chemo and RT?
Thank-you again.
Thank-you for the information and your support. I feel much more informed now.
No problem, ask anything you like.
I was given the choice yes. I met with my head and neck cancer surgeon and my oncologist to discuss my options.
I chose surgery with the understanding that I would potentially need to be given RT after surgery. I was told that if I had the surgery done first, the likelihood of needing chemotherapy drops and that turned out to be the case.
Please could I ask if you were given a choice between chemo and RT?
For throat cancer we tend to be offered either radiotherapy or radiotherapy with chemotherapy
If surgery is offered it is usually beforehand and the decision to go forward is made after that
Chemotherapy is given for more advanced cancer.
But we are talking about HPV driven squamous cell carcinoma and I think your sarcoma is different.
I’m afraid I don’t know much about it.
We do have an Ask a Nurse section. You could try there
https://community.macmillan.org.uk/cancer_experiences/ask_the_expert-forum/ask_a_nurse
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
Hi Chris_2024,
In my experience, it was easier to get information from my specialist nurse than the surgeon, at least if I didn't want to wait until the next appointment.
Do you have their contact info? Mine responds to emails within 24h.
They also can access your files and notes too.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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