Meet others living with Head & Neck Cancer: Introduce yourself

Thanks so much for your concern and unfortunately you know what I’ve been thru.
Doctor wants to do 5 radiation treatments. And start me on
Keytruda.
It’s supposed to be very effective in boosting your cells to fight off cancer.

@bcu . My mother in India just got diagnosed with cutaneous Angiosarcoma. She started with a rash on forehead and now has pimple like nodules on her scalp. Doctors are not sure exactly what is the correct pathway of treatment since nodules are on scalp and has rashes spread in face and cheeks . One doctor suggested chemo followed by surgery but another doctor said only chemo and radiation and no surgery because the rash is all over the face.any advice from your treatment?

I’m currently on the last week of a five week protocol of 50gy radiation with once weekly chemo (Cisplatin) treatment. This is a reduction from the standard 7 weeks and my care team gave me this plan because I had a successful surgery to remove the primary tumor in my tonsil, and only had two level 2 lymph nodes involved. They also found cancer on the base of my tongue and took some of that. I had clear margins which meant no radiation directly on my throat. However it was explained to me that 30 gy of the 50 gy radiation was still hitting my throat due to the Way it was applied to my neck. In fact my surgeon said the chemo may not be needed but I chose to do it based on the oncologist’s recommendation.

Sorry to hear your mother has this awful disease. My case was different in that it was found and removed very early and was only in one small spot on my cheek and now 11 yrs later- it is small area as well . If you can get her to a specialist in Angiosarcoma, they will direct you the best. I know all of those are treatment options I have heard of being used. Best wishes!

I have already made appointments with my dentist and a
dermatologist.
My main point of posting
my situation is that I need
names of the best doctors
wherever they may be.
I live in Florida and unfortunately am very used
to traveling to other states
for the best care because
the best care is usually not
here.
So, to repeat I already know
that I will need a local diagnosis first from either
a dentist , oral surgeon,
dermatologist or possibly
nose/throat specialist and
that process has been and continues to be underway.
BUT I would still appreciate names of good
DRS in case I need them.

Unfortunately I cannot give you specific names. Perhaps someone in your area who also is on the Mayo Connect feed would have that specific information. In the meantime it looks like you are on the path.
Try calling Mayo Jacksonville 904-953-0853 and see what they have to say. You may not need a referral and it won't hurt to make the call. In this support group we cannot make these decisions for you. We can provide support in dealing with your situation to the point of having others who have been in similar circumstances. Tips and ideas to cope with surgeries and/or recoveries, etc.

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.

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?

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

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.