| Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Your mother's surgeon sounds very kind and sensible. I so hope that the surgery is successful. Best wishes:)
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.
| | | | Joined: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | Thank you, guys! My mom said that she still may hide under her bed when Thursday comes, but this is in jest, of course. She and my dad took their dog to the beach today to mentally prepare. Tammy, congratulations to Kris and you! Grandbabies are such blessings! I won't tell a soul! As for my mom's surgeon, he's great-honest and compassionate and M.D. Anderson trained and spends so much time answering questions. He told her that she worries about everyone else, but it's time to put herself first and make a decision she can believe in. Great doc; great team. I will definitely check in with updates. In the mean time, I hope that you all enjoy the remainder of your weekend. Thanks again for sharing your thoughts.
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14); 1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr; 2/2/15 RT/carbo/taxol; 4/15/15 CT clr; 5/15 neuropathic/trigeminal pain/headaches; 6/15 recurrence flap margins/BOT; cancer encroaching skin 7/23/15 hemiglossectomy; clr margins & nodes 10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth 11/5/15 left cancer behind
| | | | Joined: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | Just wanted to post an update on my mom's July 23rd repeat hemiglossectomy. I also wanted to thank everyone once again for the insight and encouragement.
My mom's surgery went well, and she's at home now with some home health visits. She still has a trach and a PEG tube, and she's had some problems over the last couple of days with new swelling, but she's doing remarkably well and is walking her dog and organizing her closets already!
The best news of all is that her surgeon was able to get clear margins, her nodes were clear, and from what I understand, the cancer had grown up and forward from the back margins of her flap toward the front of her tongue and throat rather than back and down toward the larynx. She now has a new flap and a graft to close a wound on her throat and skin (she had a new lesion on her neck, and it turns out it was the cancer trying to break through her skin). Her jaw and larynx and much of the base of the tongue are all still in tact.
We are so very grateful for this news, and I am particularly grateful for the advice and support of the wonderful people on this forum.
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14); 1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr; 2/2/15 RT/carbo/taxol; 4/15/15 CT clr; 5/15 neuropathic/trigeminal pain/headaches; 6/15 recurrence flap margins/BOT; cancer encroaching skin 7/23/15 hemiglossectomy; clr margins & nodes 10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth 11/5/15 left cancer behind
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | That is good to hear HorseGirl. You and your family must be relieved.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | I'm very glad your mother didn't hide under the bed as she said she was tempted to do. Walking the dog!
Best wishes:)
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.
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Thanks for the update. Clear margins and nodes is fantastic news. I'm glad she is home and she should feel a little better each day.
Best wishes!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | So glad your mom is doing well she's a strong lady... Hugs to you both.
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: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | Thank you, guys! It's staggering to me that a month ago, her second opinion suggested Hospice. I know we all die, and I'm glad Hospice is around when its needed, but to have this opportunity when it appeared there really was none makes my heart burst. And what a great medical team she has! Now it's time for her to tackle regaining as much function as she can, and hopefully, saying goodbye to the trach and PEG tube sometime soon....
And it's true that she is strong, but so are all of you! Your resilience is incredible. This forum certainly helped in the decision-making process to move forward with the surgery instead of "calling it a day" (and hiding under her bed), and I really appreciate that. I'm wishing everyone a good week.
Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14); 1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr; 2/2/15 RT/carbo/taxol; 4/15/15 CT clr; 5/15 neuropathic/trigeminal pain/headaches; 6/15 recurrence flap margins/BOT; cancer encroaching skin 7/23/15 hemiglossectomy; clr margins & nodes 10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth 11/5/15 left cancer behind
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thanks for the updates! I always follow your posts about your mother. So glad everything has worked out so well for her.
ChristineSCC 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 | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | It's always so hard when it's an older relative - there's a fine line - we all want to hold onto the people we love so much, but something like this is such a personal decision - based on overall Health - will to live - quality of life etc. I'm one who says fight to the last dying breath and do all you can do to maximize your chances. But I also respect that sometimes our personal feelings can actually worsen an already horrible situation for someone else - particularly an older relative. That's why education is so important and knowing what is a reasonable expectation and outcome vs unreal expectations. That's when we have to ask ourselves am I doing this for myself or them? I am so happy your mom is doing well and improving daily - she is one of the people I would have suggested push through. It often depends on amount of involvement and she sounded like she could potentially come out the other side - hopefully cured. Hugs and healing vibes to her.
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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