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Joined: Dec 2010
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
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You're a nurse - you're medical background will help you!! Knowledge is power and is the best thing to help you advocate for yourself.

Your co workers should be way more understanding geez this is what they do for god's sake.

That said. Hopefully you have good insurance, and disability leave. This should lessen the worry immensely.

You have the same type of tumor I had. Please read my post to the person in the message above yours. It gives a little information about the treatment for this cancer. Hugs and welcome. and sorry you have to be here.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Apr 2015
Posts: 91
Neicy Offline OP
Supporting Member (50+ posts)
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Joined: Apr 2015
Posts: 91
Thanks Cheryl, I read your other post as well about the treatment/surgery. Friday is the big day, so I am trying to not trip out before then. I have been a nurse for a long time, but I really don't know much about oncology. Years ago, I worked at Children's Hospital of Los Angeles on the hematology/oncology unit but I really don't have much knowledge about this sort of thing we are dealing with here. I do have good insurance and I do have disability which is not all that great but at least I have something. I also live in Louisville where the James Graham Brown Cancer Center is located. I actually work in the same hospital...I enter for my job not 100 yards from the cancer center. So very strange but lucky all in all.
So, maybe you know this...at the first appt will they want to schedule surgery?? I need a week or so to get it together before hand. How many sessions of radiation do you usually go for and are they daily??? I have tried to look some things up online but was unable to find much to answer specific questions. I guess everyone's treatment plan is different.
Thank you for your support and encouragement...it is greatly appreciated.
Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
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For surgery - they may get you to sign off it right away. But generally it takes a week or two to book you, minimum (now knowing you're a nurse and possible colleague may get you in faster (that's just the way it is folks). My dr. is tops in his field. The day I was due to meet him his mom died !!!! I met with his fellow instead ( a very hot Australian guy... he trains ENTs from all over the world ) the fellow went over everything with me and had me sign off. The next week the dr. insisted on seeing me and asked me to sign a separate form asking me to give him permission to split my jaw. I signed it but made it clear it was only an option if he absolutely could not get all of the tumor any other way (no laziness allowed) He triages his own surgeries so he scheduled me for three weeks later - I had my preop done early and told him if he had a cancellation I was game to go when he was.

Usually post op you have 5 - 6 weeks to heal. In that time they will do another CT, to prep you for rads, and they may also have you see an MO - in case they choose to do chemo as well. Plus blood work, meetings with a dental oncologist and hearing specialist (if chemo is part of the game plan), and maybe a radiation info session and an appointment with a dietician (most CCCs do this and have it all in house).

I was blessed enough to get it ALLLLLL ( I am being sort of facetious here but believe it or not - as hellatious as it was - I am glad they hit me with the works.

Generally 33 rounds of daily rads with weekends off is how it goes. Treatments are quick. maybe 20 minutes.... I wore a sports bra with no metal and a tank top and never had to change after the first day. SO I'd show up walk in lay down they'd set me up and cook me.

They also gave me chemo 3 times - week one - three and -six. They missed the last one because my blood was unhappy. This happens a lot. Sometimes chemo is given in six doses (weekly) instead. My hospital keeps you in house for chemo. They want you overnight where they can run an IV because cisplatin is hard on your kidneys. My father in law who also had cisplatin for esophageal cancer had it as an outpatient (so it depends on the Dr. I think because we were both treated at the same cancer hospital.)

When I was first diagnosed I was T2 N0 MO - There were 5 weeks between dx and surgery in that time a 1.5 cm node popped up.

The dr. told me the first day he met me that he would be removing 40 nodes from my neck as well as 1/3 - 1/2 of my tongue - and he didn't want any arguments. And frankly I would have asked him to do the dissection had he not suggested it.

Anyway showed him the node on the morning of the surgery (which BTW did NOT show up on any scans including an MRI 4 weeks weeks prior to the surgery and believe it or not - at that time I could actually PALPATE IT!!!) and he said it didn't matter it was coming out.

Turns out it was cancerous and it had extra-capular extension meaning it had already broken through the node into the surrounding tissue. all this in 5 weeks.

While surgeries and tumors are different depending on the structures involved most treatment regiments are the same. 28 - 35 rads (33 usually for oral tongue) and chemo (cisplatin, carboplatin, or Erbitux)

Friday!!! good luck - BTW I didn't have my jaw split though he said he lost 10 lbs in the OR because of me. My surgery was 14 hours long. I came out with a catheter, trache, ng tube, 2 drains and a face that looked like I'd been hit by a truck. (I even had a black EYE!) I also had two donor sites so they were bandaged as well and sutures along one side of my neck, and an IV in my foot. PS you will need something to write with usually they put in a non fenestrated trache day one and two, then they move you to a fenestrated trache for a day or so before removing it entirely.

As bad as it was - I am thoroughly grateful.

HUGS (ps - I used to be a nurse!) feel free to friend me on facebook and PM me there.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Sep 2013
Posts: 105
"OCF Canuck"
Senior Member (100+ posts)
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"OCF Canuck"
Senior Member (100+ posts)

Joined: Sep 2013
Posts: 105
Vouching for you! Neicy


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
Joined: Apr 2015
Posts: 3
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Posts: 3
Hi Denise,
I also had tongue surgery. It was stage two but while waiting for my surgery it went into my neck and became stage 4a. It was an awful year indeed. It was one year since my diagnosis on March 26th.
I'm praying it's gone and that it never comes back. I had two clear scans. I was on the feeding tube, through the stomach due to the treatments last year. I was literally starving to death. I was in and out of the hospital all year long. I really thought I was going to die.
But now it's an year and I can eat whatever I want mostly. Fruits are still too tarty
But I managed to drink a large glass of orange juice every morning. I can't swallow my thyroid pill so I crush it.
I look slightly disfigured under the neck but there is huge improvement.
I'm trying every wrinkly cream under the skin for my chin... Got premature wrinkles there.:(
But overall... I'm just so really grateful to be alive.
Kimberly


Diagnosed March26,2014.... Surgery of 9 hours on April 25th and radiation and chemo in June and July... 2 clear scans so far and off the feeding
Tube and eating food! Can't want to get de-ported this summer!
Joined: Apr 2015
Posts: 91
Neicy Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Apr 2015
Posts: 91
Hey Kimberly! How long did you have to wait for surgery that it moved into your neck?? Wow, you sure went through alot. I am so glad that you have had clear scans.
I hope you continue to do well. Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
Joined: Dec 2011
Posts: 18
Member
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Member

Joined: Dec 2011
Posts: 18
Hi Denise:
I hope all went well with your surgery. I know that you were probably scared but in time, you will be just fine. I have been praying for you since I know all to well what your going through. This cancer certainly has had its ups and downs but in time you will come out a winner. Take care of yourself while you recover and be patience. All good things come to those who wait. Having said that, take your time and you'll be back up in no time.


Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
Joined: Sep 2013
Posts: 105
"OCF Canuck"
Senior Member (100+ posts)
Offline
"OCF Canuck"
Senior Member (100+ posts)

Joined: Sep 2013
Posts: 105
Hello Neicy! Welcome back, how are you? I wanted to say hello before I get ready to teach. I will be thinking the best for you all day. You have a huge support here, rest well.
Sophie


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
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