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Joined: Oct 2013
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maris40 Offline OP
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Hi,my name is maris40 and I'm new to this forum. My daughter had surgery for tongue cancer and I'm living with her and hubby. While he works I'm alone with her during the day and she hardly speaks to me anymore about things. Before the surgery we had many nice adult conversations,I'm beginning to take this personally,but I know better,which is why I need this forum.I just don't know what to say to her anymore.

Last edited by ChristineB; 10-03-2013 09:28 PM.

I am a caregiver and parent whose adult daughter was diagnosed with stage 3,scc and who has gone through surgery,it has been 4 months since surgery and our relationship is quite strained as to where we don't talk anymore except about superficial things.Anything I say is wrong,so I don't know what to say anymore. I'm really at my wits end,trying not to take it personally.
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"OCF Canuck"
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Maria she's probably terrified did she have surgery only?


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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Maris, welcome to OCF! You have come to the right place for help with info and support for your daughter.

I have sent you a private message (PM). Look for the tiny flashing envelope next to the My Stuff tab. Its up towards the middle near the top of the page. If you click on that and check out the link in the PM, you will soon be a pro at navigating the forums.

Best wishes!


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: Aug 2013
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Welcome!
I just went through surgery myself for tongue cancer. I have been with-drawn and kinda keep to myself more than I did. I know my parents are having a hard time with it. I think its because it is so scary and I try to be brave and do it on my own. I hope she feels better soon. Just keep trying to reach her. What kind of surgery did she have? Everyone is so nice on these boards and it helps a lot! I have found much comfort here!


Age 36
Mommy of 4 smile
Diagnosed 8/5-tongue cancer
T2 tumor with partial-glossectomy 8/13/13 along with neck dissection HPV positive
Path report all clear margins!
11/5/13- enlarged taste bud and mild Dysplasia
Surgery planned for 11/12
11/12 cancer cells removed
Staged increased to stage 3. T3N1
Chemo and rads started 3/4/14
33 rads and 6 chemo
Peg tube 3/7/14
37 radiation and 8 chemo treatments
Completed treatment 4/25/14
recurrence 12/1/15
surgery for Hemiglossectomy 12/11/15
Joined: Aug 2013
Posts: 54
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Welcome! I too just had surgery to remove a tumor from my tongue. Please don't take it personally that your daughter is not very conversational right now. She has a lot on her mind right now and if she is like me....she is VERY tired and it is difficult to speak. Give her a little space to reflect on all she has just gone through. The surgery is rough. She will improved each day and should be ready to talk after a few weeks. Be patient with her.


48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
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Just a thought. By the time 4 months post rolls around most are pretty well back on their feet, learning the finer points of the new "me". It it possible she does not need your help and presence as much now and just finds it difficult to communicate she is fine now with her own space?


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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maris40 Offline OP
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Thanks,the info was very helpful,just knowing that we are not the only ones going through this and that things do get better. She had part of her tongue removed and a partial neck dissection,no radiation at this time,only monthly visits to the doctor

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maris40 Offline OP
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Thanks,Cheryld,yes it was a neck dissection and the partial removal of her tongue.

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"OCF Canuck"
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Tell her to keep a very close eye on her neck and her tongue. Hopefully she won't need to worry but knowing what's normal in her mouth and neck once she is healed is important to detecting a possible recurrence. Believe me when I tell you I am not a negative person, but sometimes if they skip rads and chemo node or something odd will pop up. This is usually less likely if she's had a neck dissection, but it's a better safe than sorry mentality. hugs and just give her time.


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: May 2010
Posts: 638
klo Offline
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Have you considered depression? Often when the enormity of what has just happened hits home, instead of feeling elated, some patients actually spiral into depression. For us it was 6 weeks out but wasn't recognised for another 3 months.

the other suggestion I have is that she is possibly feeling smothered?

You are doing the right thing in not taking it personally - she cannot think about you right now and is not herself.

The only knock down drag out fights Alex and I ever had were during and just after treatment. I felt he was acting like an irresponsible 2 year old, and he thought I was an autocratic sergeant major. He also felt smothered, fussed over and resented me for it. We got past it (after many a night fantasising about dropping him off on the side of the road for some other poor woman to find), and we have the strongest relationship of any of our friends (IMO). He is considerate, regularly tells people that I am goddess (entirely true of course) and if he forgets, I tell them for him smile

It will get better, and that's a promise


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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