Hi Everyone Squamous Cell Carcinoma 16 positive HPV lymph node.

Loveday said:

I am booked to have robotic surgery for a tongue biopsy and I was wondering how painful the recovery is and how long it lasts for.

Mine wasn't robotic but Cocodomol for a day or two took care of it. Because you have your mouth open for quite a time while they position the gear I suspect your jaw might ache for a bit. It won't last long...really

Tongue123 said:

I had a tongue biopsy when I had my tonsils out now I’m not sure if it was robotic but I was fine after. X 

Hi...I think you'd know if you did. THIS one you can google. The Da Vinci system is a thing of purpose. You can have a surgeon the other side of the world operate remotely. Amazing

Hello Sarah, just popping up to echo what everyone else on here has said - waiting for full diagnosis and a treatment plan is the toughest time I think but hang on to the fact that HPV-related cancers are very responsive to treatment - I'm a good example. This forum was a fantastic source of info, advice and support for me - stick with us!

Sending luck & love

Catriona

Hi Everyone, how we all doing? It's Sarah here, Just an update.

. Saw my consultant and my head and neck nurse on Fri 28th June to get the results of all the findings and discussion at MDT meeting.

. FNA showed squamous Cell Carcinoma 16 positive HPV in lymph node left side neck.

.further investigations needed to determine primary site of cancer

. MRI showed abnormal lymph nodes for metastatic cancer, however this could not identify a primary site.

. Pet scan/CT done again no primary site seen (consultant said this was unusual)

. Panedoscopy done and 6 biopsies taken sent to pathology and the biopsies taken was reported that squamous Cell Carcinoma to left tongue base (the back of tongue) small tumour less than 2cm.... (Ummm puzzling how would they know that is was 2cm! They only take a tiny biopsy) 

. Lymph node 3cm, in neck, no neck dissection needed, good news on that front

. Staging given T1 N1 M0

. Consultant  with MDT mentioned in report primary non surgical treatment (radiotherapy+/- chemo)

. Got appointment to see Oncology Consultant on 2nd July to discuss treatment options etc 

. Appointment on 1st July to see Maxillofacial dept for dental assessment (X Ray done) been sent to this dept.

As of yet do not know how many radio sessions or whether Chemo needed.

So depending on results of dental findings I should image that it could be few weeks for treatment to start..

I'm still a little confused by it all so hopefully some of my queries will be answered by the oncologist.

Under Sherwood Forest kings Mill hospital, Nottingham City + Queens Medical Nottingham) so under 3 different hospitals.

Watch this space love to everyone Sarah xx

Hi Sarah. Good that they found the primary. Left base of tongue is where mine was but I had no nodes involved so escaped the chemo. Just had 6 weeks RT which is the standard unless you are in a de escalation programme. Chemotherapy varies between once weekly to two or three doses spread out. The total dose being the same whichever way it’s delivered. It’s a drug called Cisplatin. What questions do you have. Some of us might be able to help. 

Hi again,

Glad there has been progress in your journey.

Are they saying it is a secondary cancer? If not, the good news is that you have a T1N1 ..my husband a T4 N2.... And he was declared as in remission 6 months after DX..so, there is a positive.

Take good care, and let us know how everything goes.

Xx

Hi Sarah. Usually 6-7 weeks of radiotherapy and with lymph nodes involvement cisplatin  chemo either weekly smallwe

doses or 3 doses larger spread out week 1 3 and 6. 
just remember hoc driven rumours respond well and curable is the aim. Any questions just ask. 
Hazel z

Thanks Hazel, do you think I will need Chemo? Is this because of the lymph node.

Can radio work well without the chemo?

I was given a booklet about the chemo which I haven't got around to reading as yet.

Sarah

skft said:

do you think I will need Chemo? Is this because of the lymph node.

Can radio work well without the chemo?

I was given a booklet about the chemo which I haven't got around to reading as yet.

Having metastasis to lymph nodes means you are stage 3 ( different from the T1 in your T1N1M0) so chemo will be prescribed. While the cancer is very sensitive to radiation the chemo acts as a radiosensitiser increasing the effectiveness of the RT. It increases the chance of cure by around 6%. It’s not critical though. Lots of people don’t have the full course. 

HinYes its usual to be offered chemo with lymph node involvement. I had 2 of a planned 3 chemo ( the last chemo was cancelled in a joint decision between me and oncologist my noticeable lymph node had gone by week  5 chemo adds apex 6% to the overall result it helps with radiotherapy by increasing the effectiveness of radiotherapy. But very few of us have all the sessions. While cisplatin is a toxic chemo I coped very well with it I followed the teams instructions to  the letter  and I had no sickness but some do. We don’t loose any hair because of the chemo it may thin yiur hair but we do tend to ooose hair at the back due to the radiotherapy beams exiting there.  I lost a crescent Shante ear to eat but it soon grew back. Treatments hard but the results worth it. 
hugs Hazel x