Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Have just read your story. I can well empathise with you. I think you have given voice to what a lot of us feel when we are dealing with big institutions.
Sometimes I have to write down exactly what I'm going to say, especially when I'm ringing a department or - once - leaving a message on a doctor's phone.


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: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
I'll bet he makes a tidy profit off of selling dental gold, but that's your crown and you should get to keep it. Dental gold is a special alloy so it is not worth quite as much as jewelry alloys. Gold crowns can also be rebuilt, have gold added if they are worn out, etc. Brian is an expert on this and maybe he will add some thoughts.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Yes, Gary - I thought of that later and probably should have just asked for the crown back. I did wonder about the profit he made on the gold. Thanks for the info.


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.)



Joined: Dec 2010
Posts: 5,260
Likes: 3
Cheryld Offline OP
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
OP Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Sounds almost like a scam - he makes you pay for it puts it in it falls out a few months later and then he keeps it with a minimal payback to you.... Maybe he's got the payment for his new Mercedes now?

And @ alpaca... It was a brutal day... No one should be made to feel like an old sock! Ultimately... I called today to find out about a preop appointment that was on my schedule... Got some more runaround... Finally got the name of the nurse practitioner who is overseeing my treatments - she works with the RO, MO, and knows my SO well. We were discussing when everything was going to happen - and she noted that I had an appointment with my SO wednesday - I explained why... Saying I had a bit of runaround friday - and she said..
I didn't know your name - but I'd heard about it from the radiation nurse you'd, dealt with- she was very upset!!!! When she called me, so I emailed the manager about the situation, then she apologized and said for me to give them another chance... So I was if nothing else grateful that someone cares enough. She also said that the stitch should have dissolved that's likely what the problem is... I am hoping so!

Thank you all - you are amazingly giving people. You still take the time even when you have your own full plate!


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: Dec 2010
Posts: 62
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Dec 2010
Posts: 62
Bless your heart, what an awful day you had!! So unfair. As to the stitch. There were two under my tongue that didn't dissolve after the first excision and they hurt like heck and were swollen and angry looking. Took a couple of weeks to calm down after the sutures were removed but you can't see where they were now. Hope your's clears up quickly as well and you don't have to deal with anymore runarounds!

Hugs!!



Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
Joined: May 2010
Posts: 224
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: May 2010
Posts: 224
hope a stitch just dissolved for you! I am sorry you got tossed around like that. My OS made me feel just awful the other day cuz I told him he wasn't allowed to do another panoramic xray cuz I still had to pay for the last one cuz my insurance won't cover it, and he said that wasn't his fault, that i needed it done. I asked him if he got the same answers from my PET/CTs that he would from this xray and he said "well ya". so I told him to just wait for the next PET/CT which should be in a few weeks. Then he decides to tell me it won't be till july when it's supposed to be done every 3 months. So now he's going 5 months with no scan.
I hate when docs treat you like crud, just makes you so mad.

Hopefully they learn their lesson and you don't have to go through it again, but if you do, put your foot down! Go above them and turn in a complaint right away. That will get them to shape up!


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
Joined: Dec 2010
Posts: 5,260
Likes: 3
Cheryld Offline OP
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
OP Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Actually I was lucky... When I left the clinic that day I was almost in tears... I have to be honest...( and people it takes a lot to make me cry) have never wanted my mommy so badly as I did that day. However, I think the nurse there felt really bad for me. I finally got in touch with the nurse in charge of my case - she runs the show in terms of appointments etc. And was trying to clarify an appointment I thought I had today for a pre op - for a peg. She said. No maybe it was the appointment I had with my SO I was confusing it with - told her no I'd just gotten the appointment friday for him after having a bit of a run around. She said... Oh you're the one... Apparently the nurse I'd dealt with in the clinic was very upset about the whole situation, and called my nurse who in turn sent off a letter to management.

So they are aware of what happened.

I did see my doc today... He said tongue looks fine, not a recurrence, just the stitch which will hopefully dissolve in a few more weeks. He checked my neck too. So I guess I am good. I had 2 CTs on Friday I assume since they are being given to my RO I will hear from him if there is a problem, otherwise I will ask him when I see I'm in a week. So thank you for all your prayers, well wishes, and putting up with my rants.... Hugs to you all - you are fantastic!


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: Mar 2011
Posts: 130
Likes: 3
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Mar 2011
Posts: 130
Likes: 3
Cheryl, How did your first day go? I was so scared on Tuesday which was my first day after the "dry run". Good news tho... every day this week got easier.

Today at Mass General they had a big power falure in radiation. It seemed like half the people were bummed out and the other half were psyched that they might get to skip a day (me being the later). No luck...they were back online in half hour.

Keep me posted on how you're doing please. My prayres are with you. Will


Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
Joined: Dec 2010
Posts: 5,260
Likes: 3
Cheryld Offline OP
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
OP Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Thanks so much today was good no problems but it's day one - just did my flouride - then off to bed soon. How are you doing? It will all be over in no time... Take care and healing vibes coming your way!


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: Mar 2011
Posts: 130
Likes: 3
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Mar 2011
Posts: 130
Likes: 3
Cheryl, How long are you leaving the floride trays in for? And how often are you using them. My doc was a bit vague...


Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
Page 2 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
iMarc845, amndcllns01, Jina, VintageMel, rahul320
13,105 Registered Users
Forum Statistics
Forums23
Topics18,170
Posts196,933
Members13,105
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5