Meet others living with Head & Neck Cancer: Introduce yourself

Just starting my journey with tonsil cancer, had first round of chemo and 2 radiation so far, any tips on keeping my ability to swallow and talk would be extremely helpful, I noticed someone said honey before and after rads helps, need to know whatever your thoughts are

I too had Squamous Cell cancer on a tonsil although at that time chemo was not part of the treatment, only surgery and radiation. Your roller coaster ride is just beginning.
You may want to consider a temporary feeding tube. I didn’t have that option so my diet became mostly liquids, Ensure, broth and jello for several weeks. Find what works. Taste will change or hopefully become nonexistent but this is usually temporary and usually begins recovery a few weeks after radiation ends.
If you wish, please contact me either through this feed or direct message me if you need to be pealed off the walls. It’s going to be a tough battle but you can do it. Tough times never last but tough people do. Any questions you have there are people here that can probably answer.

Have you had a consult with a speech therapist? I was given guidance and exercises to help maintain swallowing function during and after treatment. If you are not able to see one, I recommend searching online for exercises to help dysphagia and do them 2-3 times a day. They consist of tongue exercises and things like swallowing with your mouth closed and tongue on roof of mouth. If you can see s speech pathologist do so ASAP as you already started treatment. Hope this helps.

I saw a speech tharpist today and will be seeing every wed. Yes she had some greats tips. It all gets a little overwhelming, Friday I am scheduled to see palliative care to decide how to treat any future pain as I am on lyrica and baclofen and much needed tylenol for a totally different issue

Hi @new1, perhaps I can help. Mayo Clinic Connect is a place where you can connect with other people to talk about health issues, and give and get support. It sounds like you would like to know who you can see to confirm or rule out the possible diagnosis of oral cancer.

The best specialist to consult is an otolaryngologist, sometimes referred to as an ENT specialist or ear, nose and throat doctor. I might consider contacting Mayo Clinic again to confirm as cancer care at Mayo includes the latest diagnostic as well as treatment options. You may also consider Moffit Cancer Center or if travelling out of state is an option Mayo Clinic in Arizona or Minnesota or MD Anderson in Texas. All of these institutions have the top specialists.

Has your dentist or doctor suggested a referral to a specialist?

Mayo Jacksonville and Mayo Rochester are both the same deal: Send them a referral and then they cherry pick who they see.
Do u have experience
with Moffit and/or have
U been told they are
" topnotch" by someone
U know?

Thanks for the reply. I
contacted Mayo Jacksonville 2 weeks ago.
As I suspected they would
not even consider seeing
me unless I have a cancer
diagnosis and then they
screen and cherry pick
who they see( even though
I have been seen there previously for something else).
In regards to your other comment I am not looking for or wanting anyone on this site to make any decisions about Dr's or
anything else for me.
I simply asked if anyone was willing to share names
If they wanted to.
Apparently, based on your
comments that is not
going to happen. I will admit I do not understand
what this site is for.

This is a good idea to know other cancer patients in this category.

I am 70 years old and was diagnosed for oral cancer , verrucous carcinoma in late 2007 . Underwent surgery but as the margin was not adequate got a recurrence at the same location and which lesion was removed by surgical excision. Since then, I have had many recurrences as mine was a multi focal cancer of the oral cavity, head and neck , mainly squamous cell . Treated by surgery , radiation as well in 2015 and 2020 again had further recurrences and had 2 surgeries in March 2020 and have been through a lot of trauma as the second surgery was not really warranted and was coerced by the oncosurgeon on grounds that they wanted to check if the cancer had gone to the bone , though there were no signs of bone erosion. Was basically duped and now suffering as a victim due the free flap fibula implant in the lower mandible followed by radiation and 3 cycles of chemotherapy. Now the side effects of radiotherapy are causing me stress, swollowing and speaking difficulties and am on a PEG tube for feeding as cannot take any food or liquid by mouth which is all sore and painful . Had other 2 recurrences, one in November 2021 when I was treated with Keytruda for 14 cycles but stopped due to another recurrence . Just had laser ablation treatment to remove the lesion / tumor at the base of the tongue , which has been successful and currently on immunotherapy with Ebutrix and low dose chemotherapy to fight any residual cancer. It has been a long struggle and more so recently as have become weak and suffering from pain which is depriving me of sleep.

Any advise ?

Anyone been in a similar situation?

Best
Shailesh Patel

Hi @new1, several people here have been treated at Moffitt Cancer Center, for example @donfeld and @dsh33782. Here is more information about their rankings from US News https://health.usnews.com/best-hospitals/area/fl/moffitt-cancer-center-6391069/cancer