Possible cancer again - need advice

motorcycleguy said:

katlou,

Well, I'm not a Doctor, but I would think that Tonsil Removal (and sending in a sample for test) is very standard - and likely it wouldn't matter where it was done, as long as he/she was competent.

Certainly, you'd want to wait for those biopsy results, before getting too panicked (although that's easier said than done.)

In the end, it is YOUR treatment, and although it is generally advisable to follow their recommendations - it is up to YOU to decide whose treatment process to choose!

(If you do get your tonsils out, I feel for you ... as mine were removed, at a relatively "older" age - and it was a bit painful for a little while....)

I wish you a "BENIGN" lab test in your near future - and whatever happens ... the BEST possible outcome!

mg

Thank you, MG, for your well wishes and warning about the painful tonsil removal.  I am waiting for my husband to get his Covid vaccination, which is tomorrow, before I proceed.  So I am also of an older adult age and I have heard that tonsil removal is not pleasant for older adults.  My lump is below the tonsil so if the biopsy is benign I hopefully won't need the tonsil removed.  I hope you weren't in pain for too long after your tonsil removal.

After posting here it occurred to me that once the surgery is over and if it is cancer that after they come up with a treatment plan for me that I should get a second opinion.  So I will get my second opinion at the hospital with the proton therapy center to see if I qualify for that if radiation is recommended.  That will get me into the other hospital system.  

Thanks again.

The Cincinnati Kid said:

Just opinion but I would

Just opinion but I would actually be more happy with a doc recently out of school. The tech and treatment on cancer has come such a long way in the last 10-20 yrs and you know a new guy isnt going to be stuck in the old ways.

Thank you for your input.  I have thought about what you are saying about a new doctor being up on the latest and I agree with you on that but I am concerned about the surgical experience.  My ENT has years of surgical experience and uses the latest technology (TORS).  You have given me something to think about and I will definitely keep what you said in mind.

wbcgaruss said:

katlou First Thing

Is that it's not cancer till they say it's cancer. Also since my last escapade with cancer, I have been seeing my ENT from Hershey Medical every three months. The last time I was there he scoped me and did the regular checkup and when he was done said everything looks good "Except" there is a wort near or just above your left tonsil and should not be a problem but he wanted to biopsy it just to be safe. So he did and Praise God it turned out to be negative. But I had never heard of having a wort inside your mouth or internally at all just the ones we always see on the outside like on our fingers, etc. So it just goes to show what I know and it shows why you go to a specialist in these things. Also since my last escapade with cancer, they wanted me to do follow-up rads and they recommended proton therapy. I was operated on in Hershey, PA and I was going to have to go to Philadelphia PA for the proton so I would think it would be the same for you as you can keep your ENT and get the proton at another facility. I did not feel up to 30 trips to Philadelphia and back so I opted for my local cancer center with an excellent radiation doctor who treated me during my first cancer and he and his team came up with a plan using the cyberknife. Wishing You The Best-Take care-God Bless-Russ

it's not cancer til they say it's cancer.  I wouldn't be so concerned if I didn't have a previous cancer.  This lump isn't on the surface like a wart would be.  It is inside some tissue that is below my tonsil.  You can't even see it, but I can feel it with my finger and I have the sensation that there is something there when I swallow.  I probably wouldn't have even noticed it if I wasn't so diligent about keeping an eye on my mouth but it is a new lump.

Thank you for your input on this.  I know you have been through a lot and I am glad that you seem to be doing well.  Driving a long distance every day for 6 weeks for radiation would really be tiring so I am glad that you were able to get your treatment locally.  They do use Cyberknife at the hospital that my ENT works out of so maybe that could be looked at as an option as well if it turns out I have cancer and I would qualify for this.  Thank you for mentioning that.  I am trying to look at all my options so I don't get overwhelmed trying to make a decision later on.  Thanks for your well wishes.

johnsonbl said:

If the hospital where your ENT is...

is a comprehensive center (meaning a NCI designated comprehensive or CoC-American College of Surgeons center) then I wouldn't worry too much.  Meaning, that if your pathology (biopsy) is reviewed in a multidisciplinary fashion (by ENTs, Medical Oncologists and Radiation Oncologists) then you'll likely get the right diagnosis and from there get the right treatment plan.  If that plan includes some type of radiation therapy then you can go to the next step and ask whether proton or IMRT would be right for you.  As you already suggest, not all patients qualify for proton due to either disease or insurance coverage reasons.  But if you are indicated for radiation and ultimately are approved for proton, I wouldn't worry too much about seeking out that treatment outside of your local hospital.

If you are also prescribed chemotherapy then you might be better off having that done at the proton center as well...I think there are cases where they like to have the radiation done within certain time frames of drug administration.

Ultimately I think once you are recommended for radiation it is really up to you and your pocket book as to whether you go IMRT or proton.  Hopefully it's not cancer and you don't need to even worry about it.  Best of luck.

Brandon

You have a lot of valuable information to provide and I am thankful that you took the time to respond to my post.  Both hospitals (the one my ENT is out of and the one that does the proton therapy) are listed on the CoC-American College of Surgeons center website.  They are both categorized as integrated network cancer programs and they have a multidisciplinary tumor board and a head and neck cancer clinic.  Your information was very helpful to me and makes me feel much more comfortable with my decision to have my ENT start the process and if needed end the process at the other hospital hopefully with proton therapy.  I have a condition called eosinophilic esophagitis which causes swallowing problems for me in that food gets stuck in my esophagus.  I am very concerned that IMRT radiation will be the end of my swallowing capabilities so I am hoping that if this is cancer and I need radiation I can go with proton therapy.  Thank you for your input.

johnsonbl said:

I happen to work...

At the University of Iowa Hospitals and Clinics which has an NCI designated comprehensive cancer center and also happens to have literally one of the best head and neck cancer oncology groups in the country, if not the world.  I was already well versed in their capabilities before getting diagnosed and was/am so lucky to have been able to walk down the hall from my office and get care from these folks.

I am a big believer in getting the diagnosis and treatment plan right the first time...which means being somewhere where you have access to a multidisciplinary team that works together.  We often see patients come from areas where their physicians (surgeons, oncologists and radiation oncologists) don't work together and the care patients receive is often sub-optimal.  Sounds like you have that available to you as well which is excellent.

Given your existing troubles it does make sense to try for proton if you need radiation.  I wish you all the best!

Brandon

Thank you, Brandon, for all your helpful information.  I was aware that you work at the University of Iowa Hospitals and Clinics as I read all of your posts.  I have become quite educated by what you write.  You are very lucky to have been able to get your treatment right where you work and at a very reputable hospital.

I have made my appointment with my ENT and I will go from there.  Thank you for your well wishes.