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Joined: Sep 2013
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Gilb Offline OP
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Not the best news from my consultation today.
My carcinoma was of the poorly differentiated, aggressive type, so head, neck and chest scans to come followed by probable neck dissection and possible chemotherapy/radiotherapy.
My poor wife is in bits. She's a natural worrier as it is, but she is not taking this well.


1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
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Hi Gilb, well I'm sorry to hear your news.
I well remember getting this news ourselves, twice.. As Kris's wife, it just shattered me. I was terrified. For him. For me and for our future.
You will both get through this, believe me.
I found the waiting very hard, but once a treatment plan was in place and underway, I was able to calm down And put my fighting hat on.
Give your wife time. Do let her voice her thoughts, fears and worries.
She may want to stay terribly close to you - I wanted to touch Kris constantly. A reassurance that he was still there, when I was terrified of losing him. Let her love you.
Thinking of you both,
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!
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"OCF Canuck"
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"OCF Canuck"
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I know the news sucks but it is far better to catch it now than than later - hopefully they will do the neck dissection ASAP. smile tell your wife not to worry. It's a one foot in front of the other prospect. Time is of the essence here, you want it out, so push... Politely - for them to get you in as soon as possible. And scans normally only take 24 hrs for results. Don't be waiting a week to get the results. smile hugs and much luck to you.


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
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Administrator, Director of Patient Support Services
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Glib, your wife can join the OCF forum as well. This may help her to feel more in control. As a caregiver, she has a very difficult job in the near future. If she joins OCF she will be able to connect with other OC caregivers and find moral support which many caregivers need too. Some caregivers will need to use anxiety meds for a short while to help them handle all the stress. We are here for both of you.


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
Joined: Sep 2013
Posts: 25
Gilb Offline OP
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Hi Tammy,
Thank you for your message.
You clearly understand the situation well. That's exactly how she has reacted. She's clearly terrified of being left on her own without me, especially as my job brought us to a part of the country far from family and friends.
Up to now, she hasn't wanted to talk about it to anyone, but she's always been a natural worrier, and I just worry that she's bottling it all up too much frown


1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
Joined: Sep 2013
Posts: 25
Gilb Offline OP
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Joined: Sep 2013
Posts: 25
Hi again Cheryl,
The 'time is of the essence' bit is worrying. Despite the nature of the news, my doctor could only spare about 3 minutes of his time to deliver it during a very busy clinic.
I will have to wait up to two weeks for the scans, then I suspect at least a week for the results.
I already pushed as hard as I could to have the scans done this week, but there's only so much you can say.
Unfortunately, there just seem to be too many patients and not enough resources.
If only I could have afforded �150 per month for medical insurance, I could have had the same treatment, but quicker.
Anyway, I'll push as hard as I can :-)

HUGS


1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
Joined: Sep 2013
Posts: 25
Gilb Offline OP
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Joined: Sep 2013
Posts: 25
Hi again Christine,
Unfortunately, Von doesn't like computers much, and she doesn't want to talk about this at the moment.
Our daughter's in the US at the moment, on holiday, but will be back on Friday. I'm hoping she'll be able to open up to her.
Also, my GP is on leave at the moment, and I can't get to see him for another 2 weeks but, when we do, I'll discuss her situation with him as well as my own.
Thanks to you and everyone else for being so supportive :-)

Last edited by Gilb; 09-24-2013 04:04 AM.

1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Joined: Nov 2006
Posts: 2,671
Gilb - I just wanted to chime in here as a (former) caregiver to my son. I know how terrifying it can be to have to face the thought of losing someone you love so much. It's good your daughter will be back soon. Just having someone else around can help to diffuse the tension for Von and give her something else to do or think about. Maybe you could give Von some jobs to do like picking up prescriptions, or shop for things you need at a store, certain foods you like or that she can prepare for you or any outside activity. Perhaps your daughter can think of some things she needs her Mom to do for or with her. Doing something else and being active can bring some relief from thinking about what you are both facing. Once a plan was underway in my son's treatment and I had several things that needed doing, I felt more in control and things went a lot better. For me, being very, very busy kept me from thinking too much about all the "what ifs". You will both get through this. It's a tough road but it is doable and you have lots of compassionate and knowledgeable people here to help you every step of the way.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Sep 2013
Posts: 25
Gilb Offline OP
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Posts: 25
Hi Anne-Marie,
Thanks for the advice, I'll see what I can think up.
Unfortunately, our daughter lives two hours' drive away, but at least she'll be in the country and will be able to talk on the phone for longer than a few minutes, and I think we'll arrange to go and see her as soon as possible.

On another thread, I'm wondering whether I've been unnecessarily cruel; when I went in for the laser surgery, I told Von I'd prefer her to stay at home because she doesn't drive, it would be a 3-hour train journey each way, the hospital only allows visitors for a couple of hours in the evening, and I wouldn't be able to talk to her anyway.
I just thought there was no point in going through all the hassle of trying to visit.
Was I wrong? Should we have booked her into a nearby B&B or something? I just felt I'd worry about her less if I knew she was safe at home.
Presumably I'll be having a neck dissection soon. What would anyone advise?


1990s: Oral Lichen Planus
Feb 2013: Persistent lateral tongue lesion
Jul 2013: Biopsy
Aug 2013: Diagnosis - T1N0SCC
Sep 10: Laser surgery to remove 1cm lesion with 1cm margin and biopsy of smaller second lesion further back
Sep 23: Tumour confirmed poorly differentiated & aggressive. Scans pending.
Joined: Sep 2012
Posts: 381
"OCF Canuck"
Platinum Member (300+ posts)
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"OCF Canuck"
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Joined: Sep 2012
Posts: 381
Gilb, I don't think that's cruel. My surgery was 14 hours and I told my parents there was no point in staying at the hospital, they might as well wait at home. My team promised to call with an update and when they would be able to see me. My surgeon called them at 8:30 pm (I went in at 6 am) and gave an update. Maybe you can arrange for the same thing.

As for the neck dissection, I had it on both sides. There is no pain from it (there is nerve damage so that's actually a bonus). Usually they will only do a ND when the PET is positive for lymph involvement. The ND was the easiest part of the surgery, but took the most amount of physical recovery time for range of motion in the neck.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
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