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Alpaca #186113 10-21-2014 10:13 PM
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An interesting discussion. Thanks everyone. I agree that openness is the way to go but there are several complicating factors. As a family our lives were turned upside down when I was diagnosed with Stage IIIc ovarian cancer in 1996 when I was 49 and my youngest son 14. It took a long time for the diagnosis to be sorted out and things were very bad initially with an unknown primary and poor prognosis. My kids were going through their adolescent angst and we'd never been open as a family. My husband and I both found it hard to talk about such things so we protected the younger two boys while taking the eldest more into our confidence. That pattern continued through two more cancer episodes and the HORRIBLE process of my husband being diagnosed with dementia in his early 70s. Youngest lives in the UK (but came home for 6 weeks to look after me in Feb), middle avoids his Dad and the eldest visits him dutifully. To make matters more complex, I have bounced back strongly from each cancer episode (so far). After a few months of floundering, they see me pounding the pavements, digging the garden, arguing about politics and generally being the same old Mum. The two younger lads are still not fully aware of what I continue to go through while the eldest takes it upon himself to be the stalwart. Part of me wishes he'd go the whole hog and read the pages about OC on this website but I'm too scared to suggest it and really why should he?

The other two have shown plenty of devotion but only at times when the situation flares up:)

When I have a scare my first or second thought is for the boys and how it's going to affect them, especially my middle one who is devastated about his father. When he got married in March, I was only JUST able to attend and his father is so far gone he could not.

Have just read over what I've written and recognise that my "thinking" is a bit flawed, predicated on the false premise that adults in their 30s can't handle what I can, but heck, it's hard to deal with.


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.
Alpaca #186117 10-22-2014 07:54 AM
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Alpaca - Everybody is different and you know your own children and can probably predict their reactions better than anyone, but if you would like your eldest to see some of the information about OC, why not select something not too long that you want him to see, print it out . . maybe even hilite some things and then leave it "accidentally" where he just might see it next time he's at your house. It might catch his eye and if he really cannot bear to look at it, he will put it down. Or he might find it very helpful. That way it's his choice. If you are busy elsewhere it might be easier for him to take a look. Just a thought. It is a difficult situation and maybe you could use another "stalwart" person in your corner.



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.)



Anne-Marie #186174 10-23-2014 01:07 PM
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Thank you Anne-Marie. I'm going to try something like that.


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.
Alpaca #186339 11-02-2014 02:13 AM
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Alpaca Offline OP
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Update on waiting for ultrasound. I spoke to the surgeon who said it there is only a tiny chance that there is cancer in the node, the one that became enlarged when I had a gum/tooth infection. She can't get me in until 27 November for ultrasound and FNA, although she is trying to bring it forward. It's a hell of a long time to wait - from 15 October to 27 November but I feel reassured now I have spoken to her. I've had this before and had a similar wait ... Horrible thing to do to a cancer patient but I've become better at waiting. I've sort of got over that ghastly knot in the stomach and just feel "in the moment". It's different for me I think because I've had cancer four times and feel my luck has to run out at some stage. But I don't think it has yet.


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.
Alpaca #186340 11-02-2014 05:13 AM
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Alpaca, I'm truly sorry for the anxiety you are experiencing. I would agree, there's not much worse for us. The time between discovering and proving/disproving things seems like the slowest time passes, too. We just seem to find ways to keep calm, in most cases. In others, some of us turn to anxiety meds.

When I go through extended periods of being unable to breathe, it feels like I will die any second. I even fear sleeping because I have to consciously make myself breathe and I feel like I will drift off and not wake up. This has been going on for 2 years in December. I look back in amazement that I have endured this for so long but also to remind myself that I am doing fine. I have gone almost a full year with no anxiety meds, too, which surprises me more.

Find ways to occupy your mind and the time will fly by. I use cooking, gardening and politics, too, although the politics part doesn't bode well for relaxation. Hang in there and I am certainly hoping for the best possible outcome on your FNA.



SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Alpaca #186875 11-26-2014 08:16 PM
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Thank you belatedly Uptown. Now many weeks later I have had my ultrasound. There was no node worth taking a biopsy of. "Nothing bad happening here." Some fatty tissue etc. I was so relieved as was the friend who accompanied me. For the expected FNA there was a big group of medical people so after the good news I told them to all go and have a cup of coffee.

I could bemoan the fact that I had to wait so long to get this reassurance but in fact the wait made me face a lot of the issues that are going to affect me from now on as a person who has had three primaries and has used up some of her nine lives. I think I'm getting better at living in the present:)





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.
Alpaca #186877 11-27-2014 12:45 AM
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Great news Maureen!
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!
Alpaca #186885 11-27-2014 01:05 PM
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Must have been a relief to hear that there was nothing to biopsy Maureen. Like Tammy says .....great!
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Alpaca #186886 11-27-2014 05:55 PM
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Posts: 2,671
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So happy to hear your good news! The waiting is the worst. It takes a lot of practice to keep the mind and the body occupied, and to try and keep out all the chatter that fills the head with the "what ifs" and other negative stuff. The more I hang out here, the more I learn how important is the "now".


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.)



Alpaca #186888 11-28-2014 03:44 AM
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Wonderful news, Maureen!!!


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
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