Hi all,
I'm here as a my husband has recently been diagnosed with cancer in his tongue. He is now 3 weeks post Op , after the removal of the mass. He's recovering really well.
It is apparently an extremely rare type of cancer in the tongue we are told, mucinous adenocarcinoma, that could be mets originated from his bowel. But they have yet to find any other ca on a Pet scan. Awaiting further investigations and referral to colon team.
In the post operation appt the surgeon said that the margins were not wide enough due to the location of the tumour by O.8 cm. So that my husband may now need radiotherapy. We have an oncology appointment next week.
I have lots of questions and would value your input and advice from your past experiences if you would like to share.
We have not had any type of staging information, did you receive staging/prognosis at your first oncology appt?
What questions would be useful to have in mind ready for the appt?
What types of radiotherapy/chemo/Immuno did you receive for base of tongue?
What side affects short and long term have you had after these treatments?
Has anyone had a false clear pet scan?
Any info would be great , thank you in advance
Hi RonnyBubble welcome.
Staging is completely different in HPV positive oral and oropharyngeal cancer so might not be of much help. We do get tumour and number staging but HPV isn’t graded.
I was T2N0M0 which means my cancer was less than 4 cm with no nodal spread or distant metastasis. Because I had no nodes involved I was stage 2 which meant I avoided chemotherapy.
I was told to avoid googling survival statistics but that HPV positive cancers are largely curable and that my radical radiotherapy was aimed at cure ( cure rates are 90%but I wasn’t told that exactly)
I had a base of tongue cancer and had six weeks of radiotherapy
Have a look at my blog linked below. There are some details on what to expect.
Long term I have reduced saliva but that’s liveable with
I can’t help with the PET. I had a false positive after treatment.
Macmillan have info on what to ask at appointments. It’s a bit generalised but still helpful
I would suggest that you go in with your husband and take notes or even records the session.
Finally take a look round the group. There are members at various stages along the road. Reading some of their posts might be helpful too
Best of luck
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
