Hi,
my father just emailed me today to tell me that he has cancer. Probably tongue cancer judging by his description.
He lives in northern Australia. I live in the UAE. He is 72. I'm nearly 40. I have two young kids (2 1/2yo and 8mo). He has a business that has sucked up all his time, literally, 24/7 (its a motel) for the last 4 years. He has met his grandson once, but never his granddaughter.
He starts chemo/radio tomorrow.
I know nothing about his diagnosis, I know nothing about his treatment. I know nothing about any prognosis.
I joined this site because I know that I'll have lots of questions that he will not, or cannot, answer, or that I can't ask.
I'll just be here, reading your posts. This is so very, absolutely new to me.
I think my world changed six hours ago, when I read that email. I'm not sure whether the sandstorm in my head will clear to allow me to think clearly about what to do next. I don't even know whether I should go see him now, or wait till the chemo/radio treatment is finished. I know so little.
Thanks for this forum. I never even suspected that I'd need it. Thank you. I support you.

Hi Debo,
Welcome to OCF. WOW - you found us very quickly. This site one of the very select that offers solid information and first-hand experiences from those with head and neck cancers.

First, take a deep breath. The cancer is not going to spread like a wildfire and change the landscape in a day, week, or even a month. This assumes you have been notified early on; if he is just sending you an email at some time after diagnosis, treatment, recovery, his condition today can vary greatly.

My recommendation is to get on the phone and find out what is going on - all the questions you listed as needing answers. Then you can make a more informed decision on what to do after asking lots of questions and learning a lot about his specific situation.

Every case is different, so having as much detail about his condition and past and planned treatments would be very useful to receive more thorough and accurate comments.

Best to you, don

Hi Debo, Just another voice here saying welcome, and sorry to hear about your father. Let me echo what Don recommended, and let me reassure you that you're in the right place. Good luck to you and him,

Bart

Hi, Debo
I am going to respectfully disagree with Don in that I would NOT ask about prognosis. I would ask about what chemo agent(s) they are using, and what the schedule is for the chemo and radiation. That will give us a clue about when he will feel the worst, and maybe need some extra help. You could also ask about staging, but you may have to be careful asking about this, too.

Best wishes -
Maria

thanks everyone for your replies.
Your replies have already generated more questions for me. Maria, you mention 'staging' - what is this, and why be specifically careful about asking about it?
Also, is there a general rule of thumb of when people in chemo/radio treatment feel most awful?
Is there any rule of thumb about being present or staying away?
thanks again everyone.

Welcome to OCF! Im sorry to hear your father has recently been diagnosed with it. Im glad you have found our site to help you learn about oral cancer. Take some time and read to educate yourself. There are also the main OCF pages which are full of important info as well. Things are outlined of what to expect all thru the journey on the main OCF pages. Click on the words "The Oral Cancer Foundation" towards the top left of the page.

Hopefully he has friends and relatives there to help him get thru this. Many of us OC patients had to stop working for a while during our treatments. Does he have someone to take over the business for him? If not he may want to start rounding up helpers now before he begins any treatment.

Best wishes!

Hi - welcome... First off I understand your dad has been crazy busy for quite some time. I am not sure if there is animosity over this or just acceptance. I think your next actions may depend on how close you two are. Does he have someone else to help care for him? At 70 it will be a hard long haul if he doesn't no matter how healthy a 70 year old he is.

First off you need to find out if it is base of tongue cancer - or oral tongue cancer. Oral tongue is most often located inside the mouth, base of tongue in the throat. Most base of tongue (bot) cancers are HPV related - they do have a better prognosis because being a virus related cancer they respond better to radiation and chemo. It's because if this they don't always operate on this type of cancer.
If it is oral tongue usually the first line of treatment is surgery - then if necessary - chemoradiation -
Staging indicates the size of the tumor and involvement - the higher the stage the more involved the cancer is.
Usually the first three weeks of radiation are manageable, then after that it Gets progressively worse, until two weeks after treatment finishes, then its a slow climb out of that hole.
Most treatment lasts 6-7 weeks. And it's usually 3 chemos and 30-35 rads depending on the dr. And hospital.
I would call... Hugs.

Hi, Debo -

"Maria, you mention 'staging' - what is this, and why be specifically careful about asking about it?"

Cheryl answered about staging for me above. If is stage four, people tend to flip out a bit (I know I did) and it is hard to say. Many of us caregivers and survivors use the T (tumor) N (nodes) M (distant mets) staging description - but there are a lot of stage fours that are doing really well.


" Also, is there a general rule of thumb of when people in chemo/radio treatment feel most awful?"

If treatment will be the 3 big bag cisplatin, the days of the chemo and the days following it will be pretty sucky. Other schedules and chemo have there on special miseries - but the doctors have come a long way in their ability to control the side effects.

The radiation is cumulative, as Cheryl noted.

"Is there any rule of thumb about being present or staying away?"

This will depend on the specific chemo as to how careful you have to be; some impact the immune system more than others. Common sense is in effect! You don't want you Dad getting sick and having the treatment delayed!

Maria

Wait I noted In your other post you said it hurts to talk for him so of course I would then say email him. And saying it hurts to talk tells me its likely oral tongue cancer, I would ask him to get a second opinion from a head and neck specialist, the primary treatment for oral tongue is firstly surgery. They should remove the tumor and any lymphnodes involved (some do a neck dissection even if there is no sign of it in the nodes because cancer can seed to the nodes and microscopic cancer does not show up on a scan, this generally gives a better survival rate, particularly if they follow up with rads and chemo.

Hugs...