| | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | They can't refuse you any of your records...and they can't refuse you access to your biopsy slides.
We took custody of J's slides from both biopsies way back in March. I may or may not return them to the hospital. We might still need them. The hospital asked where we were sending them. We told them it was none of their business. Because...it isn't.
You are entitled to every piece of information pertaining to your care and every little scrap of tissue removed from your body.
I'd get the rest of J's tissue samples preserved in formalin if it wasn't such a creepy thing to have hanging around the house...:6 A little too....ummm...Jeffrey Dahmer.
Also, you can get copies of scans on CD.
Last edited by Sandy177; 09-21-2011 09:12 PM. Reason: butchered the English language :/
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Sep 2011 Posts: 35 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Sep 2011 Posts: 35 | My oral dysplasia was on/off painful and worse after biopsies and scrapings. (Lychen Planus dx 2009) and I had been having occasional pain to the site for years and years. The pain worsened after getting biopsies. Now cancer as of 3 days ago. Not sure what kind or what stage, just told superficial having sx next week.
Tracy Dx @ age 47
Single No dependants
NS/Social ETOH
Clinical Study (early detection)
Dx July/09 Mod. Dysplasia (lichen planus)
Dx Sept/11 TisN0M0 SSC Lt Tongue
Sx Oct/11 CO2 Laser Glossectomy
Sx Mar/12 Release of tongue anchoring (Skin graft)
Lingual Nerve Damage
| | | | | Joined: Sep 2011 Posts: 14 Member | | OP Member
Joined: Sep 2011 Posts: 14 | I had horrible pain after just a biopsy, I can't even wrap My head around what kind of pain there will after removal,,,I weigh 103 lbs. now,,I am gonna just disappear? | | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | No, you are NOT going to disappear. You may have to go on a liquid diet for a bit, or maybe a PEG, but those are manageable changes that you WILL be able to handle if you have to (and we don't know if you have to).
If your weight is low, you might want to add Ensure or Boost once or twice a day to keep your calories and protein intake up.
Regarding the pain - it can be managed. If you do have to undergo treatment, you won't be doing it all - there will be a medical team - and us on OCF - to help.
I just want to reiterate something Sandy posted: "Sometimes it is a gift to allow people who love you to do the giving for a change--it is generous to receive instead of always giving."
When my husband was sick and undergoing treatment, I was SO happy to be able to do something for him. It is a blessing for you and the giver to accept help freely given.
Take care and keep posting.
Last edited by Maria; 09-22-2011 05:27 PM.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | Bean, there are variety of methods available for pain management post the surgery, so kindly stop making excuse and get yourself examined and go for treatment IF you are positive.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | Joined: Jul 2011 Posts: 48 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2011 Posts: 48 | I waited and it made it worse. get treatment as fast as you can don't delay. they will control the pain. I would recommend the peg before you start rad. as nothing will taste right and you can bypass the mouth until it heals.see a nutritionist as far as what and how much liquid food you will need. pat
dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Bean,
If you don't have a blender I suggest get one. I made milkshakes after surgery. The cold felt so good on my tongue. I was also on liquid Roxycodine for 2 weeks (pain meds) then went to Tylenol.
When is your Dr.'s appointment? Please keep us posted on what's happening. Think about a Cancer Center they're the best.
Take care,
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Sep 2011 Posts: 14 Member | | OP Member
Joined: Sep 2011 Posts: 14 | September 29th, I can't sleep well and the anxiety and stress is gonna kill Me, I already had one Heart attack:(
Last edited by Bean; 09-23-2011 06:21 PM. Reason: killed it
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Try to relax and do something to occupy you time. I read a lot right up to the surgery.  try not to freak out until you know for sure what is going on. take care.
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: Sep 2011 Posts: 14 Member | | OP Member
Joined: Sep 2011 Posts: 14 | I am worried because the biopsy I had in My first post were in March and it is now September and maybe it has changed alot since then, it is quite painful now and My Oral Surgeon said it is quite a large section and that is why He sent Me to an ENT because They have lazers and a better way to remove it than Him,,,,Yikes!
Last edited by Bean; 09-23-2011 06:31 PM. Reason: brain dead
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