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#194004 - 03/09/17 06:53 PM Newly diagnosed.. Waiting for surgery  
Joined: Mar 2017
Posts: 3
nurse Offline
"OCF Canuck"
nurse  Offline
"OCF Canuck"
Member

Joined: Mar 2017
Posts: 3
Hi, I was diagnosed with SCC on right side of the toungue, CT shows no spread to lymph nodes.. It's been 3 weeks since I got the news and just received my surgery date.. Another 3 weeks of waiting.. They will do partial glossy tony and neck ressection.. Will have a trach and tube feeding post op.
I am 42 years old married with 2 kids.. I am also a nurse, I have worked in many different areas and spent about 5 years as an icu nurse, so fortunately or unfortunately I know a lot... However have not been on the other side before.. Scary as can be!! I have amazing people around me supporting me but still... I feel like I have so many questions about what I will be like post op and how long it will all last for.. I am grateful for having found this site as it's always good to know that others know how you feel and that they got through it.. The waiting is brutal.. Can't wait to get this thing out of me and yet I do not look forward to the post op time.. Worried about my kids, husband and rest of my family.. Worried about how I am going to get through it all.. Any advise is welcome.

#194007 - 03/09/17 09:22 PM Re: Newly diagnosed.. Waiting for surgery [Re: nurse]  
Joined: Jun 2007
Posts: 9,591
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,591
PA
Welcome to OCF! You have found the very best place for info and support.

You may have a much different point of view and experience than someone without a medical background. By being in the "biz" your physicians may go into much more detail about your condition, treatment and recovery.

Im very glad to see you have lots of people supporting you. If you can line up helpers now that would be a great resource for your family while you are hospitalized and early in your recovery. During your hospital stay you will likely be unable to talk and be uncomfortable hopefully have your pain well managed. If you can line up to have someone stay with you at all times that would be great. This can help to give your husband a break as Im sure he will have his hands full with the children and visiting you. I also suggest eating all your favorites now. You dont want to have cravings when you arent physically able to eat.

Best wishes with everything!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#194008 - 03/10/17 07:18 AM Re: Newly diagnosed.. Waiting for surgery [Re: nurse]  
Joined: Mar 2011
Posts: 1,002
tamvonk Offline
"OCF Kiwi Down Under"
tamvonk  Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,002
New Zealand
Hi Nurse, you will get through this. I know that it is very scary right now. Try and keep busy these next few weeks while you are waiting. How about filling the freezer with meals for your family now while you have the time. This might take 1 worry away from you.
Someone who has been through this surgery should come along soon with some advice for you.
You will get through this.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
#194009 - 03/10/17 03:51 PM Re: Newly diagnosed.. Waiting for surgery [Re: nurse]  
Joined: Sep 2014
Posts: 82
Vanpaddler Offline
Supporting Member (50+ posts)
Vanpaddler  Offline
Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 82
Vancouver, B.C., Canada
Sorry you have to be with us, but welcome! You have a bit of an advantage, being more familiar with the overall process than most of us were. I'm sure it's still pretty scary though.

I had a similar surgery and timeline as what you are facing. It was scary, but my friends and family helped me through it. We went crazy, binging on movies and going out for dinner as if it would be my last meal. Somewhat morbid I suppose, but it was really great to be able to keep my mind busy & escape from all the constant thinking & wondering what is going to happen.

Make sure you have a notepad and pens/pencils (with spares because those damned nurses steal them, haha). Or a whiteboard with dry erase marker and something to erase it with, is an even better option. You most likely won't be able to speak when you get out, and have all this crap hanging from various places on your body. This will be how you communicate in the first few days.

The trach was the worst, for me. It slowly plugs up with thick saliva & then you start to worry that you won't be able to breath. Even though I was in a step-down unit with about 3 nurses per 5 patients, it could sometimes be a few minutes until the nurse could come by to suction out the trach. Terrifying when I was laying there unable to breath, but couldn't sit up because they have a NG tube down my nose, a bunch of gauze and what looked like a cardboard French fry container strapped on my wrist, an IV drip, heart rate thingie clipped to a finger or toe, a catheter, etc.

Then you get over the hump and it all gets better from there. Get out of the hospital once you prove you can eat enough calories without the tube, head home to more familiar & relaxing surroundings, etc. Not sure if you'll end up getting radiation, but I did, about 5 or 6 weeks post-op. Then 5 weeks of getting zapped five days per week. After healing significantly after the surgery & feeling a lot better, this happens & it's also not very nice. I didn't find it nearly as bad as the surgery though. Some people have problems with being strapped down to the table and having that machine hover over them, but I thought it was actually kinda neat. Not to mention my mindset of accepting that I had cancer, accepting that I knew much, much less about it than these professionals that do this for a living, and letting them just do their jobs & help fix me. And for me, motivation to get back to life as it was before this chapter began.

You can do this. You have a husband who can help you through this, kids to fight for, and probably other family and friends who can also step up & pitch in where they're needed. Simple things like coming over to your place to help clean, prepare some meals, lend you some books & movies to watch (because you will have a LOT of downtime & you can only sleep so much).


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
#194010 - 03/10/17 05:21 PM Re: Newly diagnosed.. Waiting for surgery [Re: nurse]  
Joined: Mar 2017
Posts: 3
nurse Offline
"OCF Canuck"
nurse  Offline
"OCF Canuck"
Member

Joined: Mar 2017
Posts: 3
Thank you for your responses, I am trying to eat as much as possible.. Trying to think of all the food I will miss and trying to gain a few pounds too.. I am already uncomfortable due to the lesion that is on the right side and bottom of my toungue, but I know that I will probably beg for this discomfort post op when I am in real pain.
I have a question for the moms.. My kids are 7&9.. I have told them that I will have surgery and that I will be in hospital for around 2 weeks..I know what I will look like with the trach and scaring and tubes.. I don't want them to be scared but 2 weeks without seeing me may be worse, any one have experience with this?
My mom will be staying with us while I am in hospital and for a few weeks after to help with cooking and with the kids.. What did you do to get enough protein post op.. I am not big to start with and do not want to be too skinny.. Any advice is welcome. I am so grateful for this forum it's amazing to have somewhere to "talk" where people know where you are and where you are headed.. Hope you all are keeping well..

#194011 - 03/10/17 08:45 PM Re: Newly diagnosed.. Waiting for surgery [Re: nurse]  
Joined: Mar 2017
Posts: 4
Aandj Offline
Member
Aandj  Offline
Member

Joined: Mar 2017
Posts: 4
Nurse,

My hub will also be having surgery this month. Waiting for the surgery date to be set was nerve wrecking. They had to coordinate with plastics. It will be on the 27th. I also wonder about what to expect post-op. He relies on me to help prepare him. I wonder what is a realistic timeframe to return to work. His job isn't very physical but requires driving. He will also be getting radiation.I'm sure we share many of the same worries


Wife to James 39,
Scc tongue dx 2/14/17
Partial glossectomy & neck dissection 3/27/2017
T2n0m0
#194012 - 03/10/17 11:01 PM Re: Newly diagnosed.. Waiting for surgery [Re: nurse]  
Joined: Sep 2014
Posts: 82
Vanpaddler Offline
Supporting Member (50+ posts)
Vanpaddler  Offline
Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 82
Vancouver, B.C., Canada
Consuming enough protein - actually just enough calories in general will likely be a problem. Lots of Christine's posts mention her milkshakes. I made myself one or two of those every day & added a scoop of whey protein powder. It's a diet fairly heavy in dairy & I'd do my best to make those milkshakes taste differently. I'd add coconut milk, or various fruits, etc. But my favourite and most calorie-laden ones were chocolate and peanut butter. Some days I would just not feel like having dairy, so I'd just have a couple of drinks of protein powder mixed in a shaker cup with plain water, then have some soup & a glass of green juice. Eventually you'll heal well enough to be able to eat softer, more solid foods. If you're an egg fan, then it'll be easier to meet your daily protein needs.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
#194018 - 03/11/17 06:15 PM Re: Newly diagnosed.. Waiting for surgery [Re: Aandj]  
Joined: Nov 2009
Posts: 644
Alpaca Offline
"OCF Down Under, Kiwi"
Alpaca  Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
New Zealand
Is your husband having radiotherapy too? I would say that with surgery and radiotherapy you would need a few months off work although I have heard of people working through treatment, would you believe. After surgery alone you can feel quite good quite quickly but in my case (back when I was working as a substitute teacher) it took me a while to get my confidence back to return to the workforce. Every occupation will be a bit different. I remember the radiation oncologist say 7 months recovery for surgery and radiotherapy.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
#194179 - 04/18/17 03:29 PM Re: Newly diagnosed.. Waiting for surgery [Re: nurse]  
Joined: Mar 2017
Posts: 3
nurse Offline
"OCF Canuck"
nurse  Offline
"OCF Canuck"
Member

Joined: Mar 2017
Posts: 3
I have had partial glossectomy with neck disection. Post op course was really hard, had 5 days of brachytherapy direct to the tongue.. 3 out of 28 nodes are positive so will be having 5 weeks of radiation with one day of chemo each week.. not at all what we were hoping for.. but this is life.
I am happy to be home now recovering with my amazing family around.. trying to eat enough calories before starting rad and chemo as I understand it will be difficult to eat due to throats pain, although it is difficult now due to continued tongue swelling, my mom is an amazing soup maker and is working on her smoothie skills. Still contemplating having a peg. I'm airing on the side of no as I believe I will be able to push through the pain and get enough calories and worse come to worse I can have a nasogastric tube put in if I really can't.. any advice or thoughts would be great.

#194265 - 04/26/17 04:13 AM Re: Newly diagnosed.. Waiting for surgery [Re: nurse]  
Joined: Apr 2017
Posts: 26
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 26
Valdosta,Ga.,USA
Hi, Nurse...i just wanted to throw in a tip to help communicate. I looked into text to speech apps for my phone..They are actually pretty good and free. It might making speaking with your kids a little easier than them reading everything. Good luck.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
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