Hi,

My wife was misdiagnosed for more than 6 months. We just found out on Tuesday she has gingival OSCC. She has already lost 4 teeth, which in the big picture are not the end all. But I'm concerned about the delays.

We went up to Boston Medical Center and further delay to get imaging (next Friday) because they want insurance approvals first. Time is ticking and I want to go to other hospitals for other opinion. We live on Cape Cod. We are most probably going to Dana Farber next week. I'm seeing that Johns Hopkins is highly rated in this area. Boston MC said that she will need to have a piece of her jaw removed, a bone taken from her fibula will be used to fashion a new jaw, they will also take some lymph nodes for pathology.

I have a personal affinity for Johns Hopkins as I had my prostate biopsy sent there for a second opinion and they knocked down my Gleason score to a 7 from an 8. They are world leaders in reading prostate biopsies.

I want the best outcome possible for my wife and we are willing to travel to obtain that. So please let me know any thoughts or give me any advise you can about this situation.

Thank you,
Tim

Welcome to OCF, Tim! You're in the right place to get info and support. We will help as much as we can, just remember we arent doctors, we're patients/survivors and caregivers.

The best places to get treated for oral cancer (OC) would be at a comprehensive cancer center (CCC). Off the top of my head the best are MD Anderson, Sloan Kettering, Johns Hopkins. Ive included the links to the list below. For a complex case, your wife should if possible get at least one more opinion. She is facing a long difficult road but it is doable, especially when you have people who have been down that path before helping you. OCF has members all over the world. Im sure the best treatment center would greatly differ depending on who you spoke to. There are websites that rate doctors/hospitals (not sure what their criteria is), Ive given you the best places to go The National Cancer Institute and US News Best Hospitals to find the countries top facilities.

For right now, your wife should do her best to eat all her favorite foods, desserts too. Her ability to eat is going to be temporarily compromised with going thru a major surgery and afterwards her doctors may suggest radiation treatments to ensure all the cancer is gone. She does not want to be in the middle of treatments or recovery and suddenly get cravings for something she isnt able to eat. When a patient has cancer or is in the recovery phase they burn up calories at an incredible rate. Maintaining a persons weight is a crucial part of treatment and recovery, the less weight loss the better the patient is doing.

If you end up traveling for treatment, there are free or very inexpensive ($10/night) places to stay near most of the CCCs. Hope lodge is one of the most common ones. There are even airlines that provide free seats for cancer patients who are traveling for their treatments. I dont know about availability but Id suspect these things would be in great demand. The link is below for that as well.

List of Cancer Centers

US News Best Hospitals List

Main OCF Website... Financial Assistance including Air travel/Lodging

Hi Christine,

My wife makes a good point that our son was just admitted to a psych ward, so she is reluctant to travel. We are going to Dana Farber in Boston next week.

Thank you for all your advice and kind words.

Tim

Hi,

We have been going to Dana Farber now and she is in an immunotherapy study (Opdivo) prior to surgery (5/29). So far we are very impressed with the care given at Dana Farber. I'm researching about radiation therapy alternatives. They have her doing 6-7 weeks of IMRT. If anyone knows about alternatives (e.g. SBRT or Photon) I would like to hear what you have to say.

Thank you,
Tim

Hi Tim! most of our members have done regular rads (IRMRT). We have had a few who also have done proton rads. Paul comes to mind when Im thinking of proton users. You can use the link I previously posted to get the the main OCF site, or click on OCF Website located on the bottom left of any page. There you will be able to read a considerable amount of info in the Understanding section. Then click on Treatments, then on Radiation and start reading. Theres even more links available towards the bottom of the page to give more detailed info. Im sure reading thru everything, you will come across even more links so you can go deeper into those subjects.

Best wishes!!!

Hi Ozzymotto!

Some of the three different types of radiation are photons, neutrons, and protons. IMRT and SBRT are photon radiation, as are other types. I’ve had that, IMRT, IORT, and Proton radiation, which protons aren’t at every hospital like IMRT, maybe about 28 locations in the U.S., and this treatment may not be approved by all insurances from a recent report from one patient. In my time, it was for recurrences, and clinical trials at MD Anderson in certain cancers.

Another, it sometines can take twice as long with protons with precise setting up, and only for a few locations, unlike IMRT doing 17 sites in 15 minutes, in my case, but otherwise it’s silent, and such radiation itself with protons may take a minute or two to complete when I had 4 sites. When they do need to change opposite sides or areas, they may need to change the brass fittings, I believe called, collometers, so that increases the time you’re bolted down with a mask on. Otherwise, it seened to work in my case with other treatments since!

A newer type of proton therapy is IMPT, which works continuous like IMRT, so there is no need to change the brass fittings to direct the radiation, but there are only about 11 of these locations in the U.S.

Here is a link to a medical site speaking about the different types of radiation:

https://www.oncolink.org/cancer-tre...ation-therapy-which-type-is-right-for-me

I hope this helps, and good luck!

Hi,

I thought there was a study being done of Proton therapy at Mass General in conjunction with M.D. Andersen for her type of cancer (lower mandible invasion and gums) but the woman that called me back said they don't use Proton for that type of therapy.

It just seems to me that more accurate is better and the fact that the protons stop when they hit the target seems like it would be better than having the xrays flying through her oral cavity. I checked into SBRT at Beth Israel (called my prostate Radiation Oncologist) and was told they don't use Cyberknife for her type of cancer. Only if it has reoccurred. So it looks like 7 weeks worth of IMRT at Dana-Farber.

Thank you,
Tim

Tim,

Dana-Farber is number four cancer center in the U.S., according to U.S. News Report’s Best Hospital listing, and sure tops in other listings too, and heard of them myself. There is the top oncologist there, Dr, Robert Haddad, who may lead the head and neck cancer department also, I’ve been sort of following, who authored a head and neck cancer book too, which I’ve read.

I’m not that familiar with your wife’s cancer, but you can check clinical-trials.gov to see if there are any for this type cancer. Also, depending on insurance, and other factors, location of treatment may not matter, and many stay at Hope Lodge for free at about 28 of their locations, probably more by now when i stayed in 2014. Patients were from all over the country and world.

Good luck!