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Brachytherapy for base of tongue cancer

dsantor's picture
dsantor
Posts: 19
Joined: Jun 2012

I recently had brachytheraphy for recurrent base of tongue cancer in NYC with Dr. Louis Harrison. Wondering of anyone else has had this treatment. Pretty rough treatment but I am praying this works this time!!!

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I saw your other post to buzz and I just wanted to say hello and I am praying for you. I too had BOT cancer stage III. I can't help with your question but thank you for sharing this treatment....I too pray it works for you.

I know someone will come along who will know something about it.

Best,

Tim

dsantor's picture
dsantor
Posts: 19
Joined: Jun 2012

Thank you Tim-- Are you well now?

sabriene
Posts: 27
Joined: Aug 2006

I would like to hear more how that was done for the treatment by rad. & chemo shrunk my tumor at base of tongue and that was back first part of 06. Today I can swallow but eating is still a problem. I am glad you posted this item for I will also follow up. Let us no how your doing from that treatment. We wish the best. Roger

dsantor's picture
dsantor
Posts: 19
Joined: Jun 2012

When I was diagnosed in 2009-- I went through 7 weeks of radiation to which I thought I was cured. Right at the 2 year mark I was diagnosed with recurrent Base of tongue cancer. Treatment had to be different so I was referred to Dr. Louis Harrison in NYC who is world renowned for his brachytherapy for base of tongue cancer. Scared as hell, I went through chemo and radiation 2 times daily for 3 weeks then had 3 weeks off and down to NYC for the internal radiation wires that they implant into your tongue, tracheotomy, and feeding tube which all are removed before you are able to come home. (thank God). I am recovering now and PRAYING this is the answer!!! I would be happy to answer any questions, Roger.

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

Hi dsantor,

I remember reading about brachtherapy in the radiation booklet I was given by my radiation oncologist. Everything I read was over my head when I was first diagnosed (stgIII bot scc hpv+). Still, I am surprised what all of us have lived through and you are no exception. The treatment sounds intense, I am glad the hard part is over.

Prayers, peace and full recovery,

Matt

Love the dog.

dsantor's picture
dsantor
Posts: 19
Joined: Jun 2012

Thank you Matt-- Praying for you as well!!! That is my dog Maxie, she is so protective, especially since I have been sick.

joannaw81
Posts: 101
Joined: Sep 2011

I am so glad someone started this subject. I was trying to find out more about this treatment but could not find anyone who had it done. My mom had 3 surgies all together(2 recurrances)and after last one Dr. Hu in NYC at Beth Israel wanted to do brachytherapy to her tongue. For now on the scan it lights up in one little spot however the biopsy came back negative so they want to do another scan in September to see if there is actually something there or not. Depending on what it shows we will then decide on either intraoperative radiation or brachytherapy. Please tell me more about this treatment,how long were you in the hospital? was it really painfull? how long until you could start eating normally? I would like to find out as much as possible....thank you

dsantor's picture
dsantor
Posts: 19
Joined: Jun 2012

Hi- Dr. Harrison is also at Beth Isreal Hospital. I had to go through 3 weeks of chemo and external radiation 2 times a day for 3 weeks before I could go to the City for treatment. You are in the hospital for 1 week with a tracheostomy, feeding tube and the catheters and wires that go up through your neck under your bottom jaw, through your tongue and loop down back through. When the actual radiation wires are placed in the catheters that goe through your tongue you cannot be around anyone (accept for 5 minutes a day) therefore you have to learn to suction your trach tube. it was not easy, I'm not gonna lie. I can eat some things now, drink Boost when I can ( surgery was on 5/9 )- hope this helps

joannaw81
Posts: 101
Joined: Sep 2011

what do you mean learn suction your trach tube? my mom doesn't speak english well so I'm afraid how would she do by herself... also can you talk when you have the wires and catheters in? was it really painfull? also how long after surgery were you on liquid diet? thanks so much in advance for your answers... also what stage was you reoccured cancer? how big was it? what king of chemo did you get? it's hard for us becasue we are from NJ so traveling to NYC is not fun but hackensack hospital where my mom started her treatment does not offer brachy. Well hopefully my mom will not have to go though it but it's better to know more just in case. All the best for you!!!

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Hi Joanna,

I'm in the hospital right now with brachytherapy implants in my tongue. I don't have a tracheostomy because the implants are only in the oral tongue. I have no feeding tube and I'm surviving on a liquid diet.. It just takes a long time to eat. Pain is manageable. Oh, what I'm doing is a high dose brachytherapy boost, so the radioactive seeds are in my tongue only for a few seconds every day. For the rest of the day I'm free to have people visiting. I'll have 4 treatments delivering 4Gy each, so in 3 days I'll get the equivalent of about a week and half of IMRT. If you have other questions, feel free to ask.

Good to see a brachytherapy thread!

Dre.

joannaw81
Posts: 101
Joined: Sep 2011

thanks for your answers. Since you are typing and all I guess you feel ok,I'm glad. Wehere are you being treated? did the doctors tell you about any possible short term or long term side effects? Good luck to you!

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Hi Johanna,

I'm at Mass General in Boston. The side effects are the usual radiation side effects, even though so far I haven't felt anything more than what I already experienced from my previous IMRT treatment. As far as I know, right now the main concern is to limit the dose to my jaw bone to avoid bone necrosis as a long term side effect. It seems to me that the worst part of brachytherapy is being stuck in the hospital for a while.

Tomorrow I'll have my implants removed. That'll be fun.

Best of luck to you.

Dre.

dsantor's picture
dsantor
Posts: 19
Joined: Jun 2012

Best of luck to you-- sending healing prayers!!!!! Never realized how many different versions of brachytherapy there are.

dsantor's picture
dsantor
Posts: 19
Joined: Jun 2012

hi joanna-- when you go through the treatment I had you are radioactive as long as the implants are in, which in my case was for 3 days (24hrs a day) so the nurses can only be around you for a very short period of time daily. you have to learn to suction the (pardon the bluntness) phlegm out of your lungs and throat. you cannot talk so you have to write everything down,and I had quite the notebook when I got home. the chemo I received was Cisplatin and I had the IMRT radiation twice a day for 3 weeks before the surgery. I really don't know what stage I am or was because I really didn't want to know. Traveling really does suck as I am 3 hrs away from NYC and have to take the train down every time I go - but it really isn't that bad once you get used to it!! Best of luck to your mother. I am sendin healing prayers for her.

powersro
Posts: 1
Joined: Aug 2012

Hi,

I had that done by Dr Harrison way back in 2000. 12 yrs , cancer free! Nice to see that Dr Harrison is still performing the procedure. Obviously, I was very impressed. My Ear, nose and throat doctor down there was Dr. Persky. Did you have any contact with him?

Best of luck with your recovery. There are some side affects but survival is paramount.

If you have any questions or would just like to chat, get back to me...

Bob

lewisdana
Posts: 1
Joined: Sep 2012

I underwent tongue base brachytherapy in 2003 for T1N1 tumor; had external beam rad in upstate NY and then went to NYC for brachytherapy with Drs Harrison and Persky and, other than post radiation side effects, ie dry mouth, some swallowing problem, slight loss of taste, I have done well for past 9 years.My local docs all think this is a full cure.

It was a tough time going through therapy(trach, feeding tube, and all the rest ) but if you keep your mind on the expected outcome, then you will make it through and come out the other end of this strange odyssey with a great prognosis.

waltersaegir
Posts: 3
Joined: May 2012

I underwent IMRT and Erbatux in May-June-July and the pain went away in June and returned mid September.
They did an MRI and biopsy verifying live cancer cells.
This morning they did a PET/CT scan and the tumor is there, but has not spread.

Now, I'm locally scheduled to have a Med Port installed on Tuesday AM and they will admit me probably Tuesday or Wednesday to start TPF chemo:
Docetaxel(Taxotere) 75mg/m2 iv over 1 hour d1
Cisplatin (CDPP) 75 mg/m2 iv over 1 hour d1
5-FU 750 mg/m2/d civi d1-4
Repeating every 3-4 weeks.

My ENT Doctor wants to remove my tongue.
My Radiology Doctor has performed Brachytherapy and since he has not performed one in several years, he highly recommends Dr. Demanes at the UCLA Medical Center. He has FedX'd (Overnight)the PET-CT scan to Dr. Demanes and he previously sent the other records and Pathology reports.

They will each be at a Radiology conference in Boston next week. So, it possible Dr. Demanes might not have time to review until the later part of next week. My Radiology Doctor will try to see Dr. Demanes at the conference.

The description that my Doctor provided on Brachytherapy sounds impressive:
X-Ray image to guide insertion of catheters to the edge of the tumor and software controlled treatments with machine inserted radiation wire inserted into each catheter for a given amount of time.

Won't know if I'm approved for the treatment until Dr. Demanes review and contacts me.

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

welcome ro the mob. Sorry you ar having to go the long way around this. Brachytherapy sounds prerty attractive compared to the alternative. Either way, it sounds like your reoccurance is localized enough to give you a shot at salvage. Many of us have had prerty much the same chemomyou will be receiving. Please keep in touch. And best of luck to you.

Pat

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

you've already been thru the gammit. There's a couple people on here (since I've been here), who have gone thru the Brachytherapy, and it sounds to me like the option I'd want to try...losing your whole tongue sounds like a last resort...

Sending positive thoughts your way.

Maybe start a new thread, so your topic is right there for all to see and the date is new...sometimes people don't answer these old threads.

p

austinporsche
Posts: 1
Joined: Nov 2012

I first presented in 1994 with squamous of the left tonsil. I went through 3 rounds of chemo, a radical neck dissection with a pec flap, and 7.5 weeks of twice a day radiation with boost the last 3.5 weeks. Recovery was pretty tough from all of this treatment. It took about a year and 50 hyperbaric treatments to get rid of osteoradionecrosis. I then functioned pretty well for the next 18 years. About 18 months ago I found another tiny tumor on my right tonsil that was removed completely by the biopsy. I know this because they took out tonsil later and found no cancer. Finnally, about a year ago I found another tumor at the bottom of the movable part of the tonque. It was 1.5 cm long and .5 cm around by the time they did surgery. Unfortunately, post surgery I had bad margins. They did a second surgery and again bad margins. I then underwent Brachy Therapy with 15 tubes implanted for one week with twice per day treatment of high dose for 4 days. I had a tracheosemy which was a bear and ofcourse ate with a tube for about a week after before moving to soups. I am now about 9 months after the brachy therapy. While I can taste, I have a very dry mouth and have considerable pain almost all the time. It is managed with 600mg motrin 4 times a day and 3-4 vicodin which makes it somewhat difficult to function. I am now trying some new pain meds to try and solve the pain issue. With a little help from God I will survive another 18 years from this cancer. Now my third primary tumor. In my opinion the treatment istelf is not bad but the chroic pain afterward, which not everyone has, is more difficult to deal with. Having said that, I would do it again to get rid of a cancer that will most definately kill you if you don't attack it aggressively. Good luck.

buellman91's picture
buellman91
Posts: 32
Joined: Feb 2012

AustinPorsche, I have had SCC twice with rads both time and long term pain issues both times. I finished tx in April of this year.I am in a pain management clinic that has perscribed fentanyl in three applications. I have a fentenyl patch, take a Gabapentin and a new drug called Subsys for "breakout pain". Just thought I would give you an option as I am now very comfortable and can function well

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