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Had surgery, now getting radiation & chemotherapy #199770
02-06-2020 07:18 PM
02-06-2020 07:18 PM
Joined: Feb 2020
Posts: 32
Michigan, United States of Ame...
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DavidUofMsavedMe Offline OP
Contributing Member (25+ posts)
DavidUofMsavedMe  Offline OP
Contributing Member (25+ posts)
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Joined: Feb 2020
Posts: 32
Michigan, United States of Ame...
New member here. I am being treated for Stage 4 Tongue Cancer (Squamous Cell Carcinoma)with metastasis in 1 nearby lymph node. I was first diagnosed around my 43 birthday. Not a very happy birthday.

A tumor had grown on the right side of my tongue, which went unnoticed because of where it was located. It wasn't until I could feel a bump back there that I became concerned. Had my dentist check it out because she had found a white lesion under my tongue a few years prior which was diagnosed by an ENT as being Oral Lichen Planus. I now suspect the cancer developed from that. My dentist referred me to an ENT who said the bump appeared malignant.

I had a biopsy on my tongue back in early November, which confirmed the diagnosis of SCC. My ENT referred me to the University of Michigan because they specialize in head & neck cancers. CT scans did not reveal any additional cancer. But to be safe my surgeon wanted to remove nearby lymph nodes.

My surgery took place in mid-December taking 6 hours long. A third of my tongue was removed and then reconstructed with donor muscle tissue from my forearm. A skin graft covered the donor site. I had a neck dissection for the removal of 10 nearby lymph nodes (1 tested positive for cancer). Because of some tongue swelling I had a tracheostomy tube for breathing. Had a feeding tube in my nose for nutrition as well. Spent 5 or 6 days in the hospital before being discharged on Christmas Eve day. By then the tracheostomy tube came out & I began talking again, albeit with some difficulty.

My recovery continued in a rehab nursing home near the University hospital. Was finally able to get much needed sleep. I continued to improve and was able to go home less than 3 weeks later when the feeding tube came out.

I spent about 2 weeks at home fattening up for phase 2 of my treatment: radiation & chemotherapy. Which I'm undergoing now, here in Ann Arbor. I'm scheduled for 30 radiation sessions & 3 rounds of chemo. I've had 8 radiation sessions & 1 round of chemo so far, so I'm almost a third of the way done. 😝

The chemo is rather unpleasant, causing hiccups, nausea, and vomiting. Medication helps control those symptoms. The radiation is starting to cause some tightness in the jaw, but I've been doing exercises for that given by my speech therapist. Also dealing with fatigue.

Everything has happened so fast that the emotions have not really hit me yet. Almost like being swept up in a current and I'm just along for the ride. Where this ride takes me however, I do not know.


The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Re: Had surgery, now getting radiation & chemotherapy [Re: DavidUofMsavedMe] #199772
02-07-2020 06:16 AM
02-07-2020 06:16 AM
Joined: Feb 2015
Posts: 84
Boston suburb
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tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
Supporting Member (50+ posts)
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Joined: Feb 2015
Posts: 84
Boston suburb
It sounds as though you're making good progress so keep fighting. Long term survival requires elimination of recurrence so it's important to know if it was HPV related or smoke/drink. If the latter, you'll need to abstain from those two.
Let us know as you progress. There will be light at the end of the tunnel (and it will not be a train).


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
Re: Had surgery, now getting radiation & chemotherapy [Re: tlc356] #199773
02-08-2020 05:47 AM
02-08-2020 05:47 AM
Joined: Feb 2020
Posts: 32
Michigan, United States of Ame...
D
DavidUofMsavedMe Offline OP
Contributing Member (25+ posts)
DavidUofMsavedMe  Offline OP
Contributing Member (25+ posts)
D

Joined: Feb 2020
Posts: 32
Michigan, United States of Ame...
My surgeon says HPV as a cause has already been ruled out. I never smoked tobacco and rarely drink alcohol anymore. The cancer seems to have developed from oral lichen planus. This all began with a white lesion on the bottom of my tongue. From what I have read about lichen planus it might be an auto-immune issue. Regardless, I plan on avoiding all risk factors going forward. I sure do not want to go through this again.


The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Re: Had surgery, now getting radiation & chemotherapy [Re: DavidUofMsavedMe] #199794
02-13-2020 08:59 PM
02-13-2020 08:59 PM
Joined: Feb 2020
Posts: 2
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Jack Lancer Offline
Member
Jack Lancer  Offline
Member
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Joined: Feb 2020
Posts: 2
Hi, I have cancer of the cheek and lip, from, we think, oral lichen planus I was being treated for. Says I have to have it removed, then reconstructive surgery, then removal of some lymph nodes, then radiation and maybe chemo. don't really care for the surgeon and would like to get a second opinion. Do you have any recommendations for other doctors around the country that I could see? If not, what did you mean when you say you're going to take steps so it doesn't come back again. What steps can you take? Many thanks, Jack

Re: Had surgery, now getting radiation & chemotherapy [Re: Jack Lancer] #199795
02-14-2020 04:34 AM
02-14-2020 04:34 AM
Joined: Feb 2020
Posts: 32
Michigan, United States of Ame...
D
DavidUofMsavedMe Offline OP
Contributing Member (25+ posts)
DavidUofMsavedMe  Offline OP
Contributing Member (25+ posts)
D

Joined: Feb 2020
Posts: 32
Michigan, United States of Ame...
Sorry to hear about your diagnosis. Cancer sucks. Believe it or not, surgery is the easy part of treatment. At least it was in my case. Radiation treatment is starting to do a number on my mouth with sores and what not.

Look up where the closest Comprehensive Cancer Center (CCC) is to you. Then you'll have to decide if it is feasible for you. These locations should have all the resources you'll need in one place, such as: Surgeons, Dietitians, Radiation Oncologists, Chemo Oncologists, Speech Therapists, etc.

I'm getting everything done at the University of Michigan in Ann Arbor. My ENT recommended them because they specialize in head and neck cancers. I am humbled and amazed by the number of people aiding me in this fight here.

As for taking steps to avoid a reoccurrence you'll want to avoid risk factors, like smoking & drinking alcohol. After going through surgery & treatment saying no to those will be essential.


Last edited by DavidUofMsavedMe; 02-14-2020 04:42 AM. Reason: Additional info added

The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Re: Had surgery, now getting radiation & chemotherapy [Re: Jack Lancer] #199798
02-14-2020 04:51 PM
02-14-2020 04:51 PM
Joined: Aug 2019
Posts: 16
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MST Offline
Member
MST  Offline
Member
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Joined: Aug 2019
Posts: 16
Hello Jack,

I had surgery for cancer (T4N0M0) of the buccal mucosa which evolved from leukoplakia. It resulted in a partial maxillectomy, and free flap graft from my right thigh.

I am over 4 months post-surgery and over 4 weeks post-radiation. I am still in pain in jaw from the surgery and trismus, and rads which worsened trismus, dried up my mouth and turned saliva into the thickness of molasses. Taste buds are off but not as bad as I have heard from others. My Doctors tell me I am "on schedule" as far as recovery goes.

I second the recommendation to find a CCC, as all the medical personnel you will need are in house. I chose MDAnderson in Houston, but Memorial Sloan Kettering. Dana-Farber, Mayo Institute are also highly rated. The U of Chicago was the highest rated last year- I may be wrong with the specific designation but it is in Chicago.

I live overseas and had to bring my family with me to Houston. Chose MDA as we have family in Texas. I have been here for nearly 6 months and will be going home soon. It has been a hellish experience but found myself in excellent medical hands.

It is a roller coaster ride but I am alive.

Sorry to ramble.


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