| | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP  "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | I don't know if anyone will relate to my frustrations. We have a free dental service for oncology patients like me but its so slow getting my bottom plate made that teeth are breaking, fillings falling out, decay setting in while I wait, wait ,wait. Meanwhile I'm biting my limp lower left lip which has no support because all those left bottom teeth were removed for the flap. The prosthodontist is great but he's doing several things at once and so busy that it's hard to pin him down as to what is happening. Today I schlepped myself in car/train/bus to the hospital where he worked only for the filling he built up on a back tooth to sheer off during the night. Got up, had another half sleeping tablet and got out my iPad to vent. Appointments keep getting cancelled. It needs 6 to make a plate.
He told me today that the existing bottom front teeth are loose and need support but he seems congenitally unable to tell me when that is going to be and all my plans to be assertive fall out the window when a fed up assistant says he's running late
because he's been in surgery etc.There's no one else to go to so I'm going to have to wait two weeks to talk to him again.
This is far far tinier a problem than having active cancer but my hope have been built up that I'll have a straighter mouth, less food spill better chewing but I'm scared the teeth will be gone by the time the plate making gets on its way. I know there are lots of logical inconsistencies in this rant. Starting to fall asleep so will sign off feeling suitably vented:)
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I can relate. With Medicare here you do not get any dental treatment, related surgery, dentures, so the cost of such is on the patient. Luckily, my latest treatment center, who weren't involved with my initial dental care, provided compassionate care, but I had to wait about 2 years for any extractions due to persistent cancer, which contradicted any HBOT. During that time, all my teeth continued to deteriorate, some of which fell out or were down to the pulp and gum line causing chronic infections, abscesses and pain, besides cosmically looking like crystal meth teeth.
I hope you get the treatment you need.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Thanks PaulB. I don't want others to suffer but it's nice when someone understands.
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: 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 | Hi Maureen,
That sucks, doesn't it? Is there a department like Patient Services that you can complain to? It's ridiculous to make you wait so that eventually the dentist ends up with much more complicated work to do.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Yes, I get it too Maureen. I also hate the inconsistencies we have in our NZ system. It took 2 years before Kris was even seen by the hospital dentist. By then all his remaining teeth were affected. All needed to be root Canalled and he needed a plate made to support remaining teeth and jaw. He has just had his "annual" dental checkup and now requires 5 more fillings.
Kris also needs HME's for his Laryngectomy Stoma. If we were in the Waitakere, Waikato, Wellington or Christchurch DHB areas, he would have them provided. Northland and Auckland do not provide them . I am sick of banging my head against that brick wall. It really is time I took this further. Time to personally write to the CEO of the DHB. Time to see our local MP. Time to write to the Ministry.
Oh yes, I feel your frustrations.
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!
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Yes, Tammy. Inconsistencies really hurt. I was lucky when I had ovarian cancer back in 96 that Waikato Hospital provided Taxol while Auckland didn't.
Trouble with the prostho is that he gave up hours of his time after my surgery to make me a temporary plate so I could go to my son's wedding and smile. He is universally loved by his patients but he's a bit of a gadfly and so hard to pin down. I can see some of his staff showing exasperation in spite of his charm and humour. He will be dancing on the head of a pin balancing his private practice with his hospital work in an overstretched system so how does one dare to complain? My latest plan is to write him a letter saying how I feel and giving it to him when I see him next. I've emailed before but he reads it just as he checks my notes and sort of skims over it. Either that or I take someone with me.
Thanks for sharing frustrations:)
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.
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