| Joined: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | I just wanted to "come into the light" and thank you, as I have been reading posts and learning so much from you all and your collective and individual wisdom for some time now, but I've never posted anything.
I'm here because my mother, diagnosed back in December 2014, and my father are the warriors, my brother and sister-in-law take such good care of day-to-day support, and I am the researcher, phone call maker, beggar, pleader, etc., who lives a couple of hours from them. We are already facing a recurrence/disease progression after surgery, radiation, chemo. Simply put, this is a SCC with very aggressive features. I'm not trying to be dramatic, but I wanted to say that I'm in awe of you all and my sweet, sweet mom for the strength and courage you muster up every morning, starting with opening your eyes and facing each day.
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: 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 | Hi. Your family must be glad to have you as a beggar and pleader. That's an important role in situations like this.
I'm sorry your mother's cancer is so aggressive. I hope today's appointment gave you some treatment options.
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 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 | Sorry I missed your post yesterday. Welcome to OCF! You have done very well in finding our site with having the researcher task. We will help you, your mother and everyone else involved with this.
Im glad to see your mother has a team of doctors and a tumor board working on her case. To me this says she is probably at one of the major Comprehensive Cancer Centers (CCCs). Im hoping she has some good news with her appointment. Maybe there are some clinical trials that we have listed in the General tab your mother may benefit from.
Best wishes. 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: Jun 2015 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2015 Posts: 29 | Thank you so much for your encouragement. My mom is at a Cancer Center with a really good head and neck cancer team and interdisciplinary team tumor board approach, but it's not a CCC (yet?). She's very devoted to her team and wants to hear their plan. She has direct lines for several docs, pager numbers, etc., so they're pretty accessible at this point. I'm also on the hunt for a "plan B"-I appreciate the info on CCCs and the clinical trials. Her FNA was yesterday. The pathologist attended the appointment, too, to be sure they got what they needed. She said it wasn't as bad as she thought it would be. We're hoping for these results on Monday. Thank you again!
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: 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 | Wishing you best of luck... And fingers crossed for your mom... Hugs...
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 so much, Cheryl. The FNA of her neck came back showing abnormal cells, but it did not confirm the presence of cancer cells. Seemed like good news at the time. But yesterday, her surgeon painted a picture we were not really expecting. Essentially, he said that he did not trust the results of the FNA because the area biopsied was not a solid tumor and because of they pain she's in. He said that because her cancer is so aggressive and came back so quickly, it's not "curable." In other words, they threw everything at it that they had, and yet here we are. He talked about possibly enrolling her in some trials and/or doing a surgical biopsy of the neck depending on what's going on in the chest. He said surgery to remove the cancer this time would be more complicated than the first and more radiation so close to her first round would not be advisable in his opinion. We will know more after the chest biopsy, but he used words like "quality of life" and "making you comfortable and nourished." We understand what he's saying and appreciated the honesty-she has great docs-but we're hoping he's a really great doc that's just wrong this time. We've scheduled a second opinion with his blessing, and of course, she has her chest biopsy coming up on Monday. Sorry for the lengthy post.
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: 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 | That's not a lengthy post. It's good for you to get the detail down and gives us a clearer picture. I find the act of writing things down here therapeutic in itself.
I'm so sorry that your mother has such a poor prognosis and like you hope that another doctor might see things differently. Quality of life and pain relief are important at whatever stage we are on in this process.
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 | I agree! Quality of life is very important, and pain management is critical. And writing here does help me work through the feelings that go along with all of this and bring some clarity of thought. I wish my mom were on the board-she would enjoy the camaraderie. Maybe she will soon.
She had her chest node biopsy yesterday, and the pulmonologist believes it will come back negative. He said he's right 90% of the time, but pathology has to confirm. If that's the case, along with the FNAB coming back with abnormal cells but no confirmation of cancer, it seems to me that her outlook is a little better. I'm looking forward to hearing what options this second opinion can offer. Wishing you all 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
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