Hi everyone,

We went to the doctor who received the biopsy results. He recommends no surgery! But radiation and chemotherapy for 7 weeks (I believe I'm recalling that correctly). We are going to another facility for a 2nd opinion tomorrow. The doctors are still waiting to see if the oropharyngeal cancer is HPV+ or not. The doctor informed us of the survival rate statistics for my dad's case and expressed that some patients undergoing these treatments will need permanent feeding tubes.

These statistics are quite scary, but we are trying to stay positive and hopeful. Any insight?

Thank you for taking the time to read or respond. I pray for everyone on this forum everyday. I promise to return all your kindness through donations and charity events this summer to further support this foundation.

Jmassa,

Unfortunately, your story is becoming all to common. In a study done a few years ago, it found 70% of BOT cancers are HPV related. I believe that number is much higher now. It is not that the non HPV are going down. Its more that the HPV cases have risen sharply.

If it is HPV related, a lot of the time surgery is not necessary or recommended. Radiation with Chemo has proven to be successful for the majority of the patients. The down side is, the treatment can be brutal. A few get by relatively easy, most experience mild to major discomfort, and a few really struggle to get thru it. I fell closer to the struggle side. I was unable to eat orally for about 6 weeks. However, about 5 weeks after treatment ended, eating was painful but doable.
I really don't think anyone can predict how people react to treatment.

I am now 3.5 years out and doing very well. Looking back on it, it was about 6 months of less than fun. I call it the brutal winter of 2012.

My advice is get a as much stuff done around the house, garage, cars... as you can now. Once treatment starts he may not be willing or able to the things he use to. Get help when and where you can. 35 trips to the cancer center takes a lot of time. I only drove myself a few time. I don't recommend driving on chemo, which can last 3-5 days of "chemo fog".

I wish you father well in his treatments. Good luck,

Try your best to avoid getting hung up on the numbers. I know plenty of survivors who beat the odds and are doing great after their treatments, myself included. Im glad you are going for a second opinion.

Have your father begin eating all his favorite foods now, desserts too. His intake is what has to be his main focus, starting right now thru at least the first year post treatments. If your father is slim, he should work on bulking up and putting on some weight before he starts.

Many patients who go thru this end up with a feeding tube. Most of those patients will eventually relearn how to eat well enough to get rid of their tube. Make sure your father swallows throughout the day even if his throat is sore. This is very important as his swallowing muscles can be very stubborn to bounce back after they "forget" how to function. Even if he takes a few sips of water several times a day this will help to keep his muscles active so recovery is much easier. In your line of work you must see these patients with swallowing issues as an after effect of OC. Hopefully with your experience, you can help your dad much more than a regular non-medical background caregiver.

If you havent already done so, try to line up several helpers that can driver your father to and from his treatments. I think I mentioned in a previous post, the ACS has a volunteer driver program thats very helpful too.

Best wishes to your father with the treatments.

Hi Julie, I remember reading statistics and being terrified. Then I realised that they did not apply to Kris. They are taken on a huge cohort of patients with multiple co morbidities that just don't apply to you. As someone on here used to say, you are either a survivor or you are not. Always stay positive and do your best to keep Dad positive. I am a very firm believer that mindset has a lot to do with surviving. Your dad is extra lucky to have you as you have wonderful skills that will help him through this. If you can become his "case manager" you can guide him through this. I'm a bit of a control freak and I took over everything when Kris went through rads and chemo. This helped me cope and it helped Kris as he knew I had his back and he trusted me to manage everything and to be his advocate.
As an SLT you have great insight into swallowing difficulties. Kris did have the PEG, but really he only used it for about 8 weeks. Try not to get hung up on this. Just be there to encourage and support Dad.
I wish you both well with the second opinion and treatment. Please keep us updated and let us help you as Dad progresses through treatment.
Tammy

Hi Hockeydad,

I am happy to read that you are doing well now. Thanks for your advice!

Prayers being lifted up. Remember, statistics are just that. Easier to say than do I know, but help keep him focused on his health, not a number. All will be well.