#21531 11-08-2006 07:10 AM | Joined: Nov 2006 Posts: 9 Member | OP Member Joined: Nov 2006 Posts: 9 | My name is Kendra and I'm new to all of this. I'm a college student up in Springfield, Massachusetts and am currently in Norfolk/Chesapeake VA because my father found out he has cancer in his tongue. I'm lost and confused and not sure what to really do. I'm in VA right now, taking a break from school, to help him. But, I need help. My father was an overall healthy guy and has no insurance or a doctor. Our next step is getting a Pet/Ct scan done and seeing how far it is... but, it's hard to do any of this without insurance. I am looking into federal help but that can take ages to get and we need the scan now. And a good doctor... (his dentist found it, did the bioposy and diagnosed him.) So, please help. Anyone who can... please. my email is: [email protected]Please contact me.
-Kendra
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#21532 11-08-2006 07:35 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | Just a thought...have you spoke with any social workers from the hospital?
Also there is another room further down the forum page that discusses insurance and such you may want to do a search there.
Tim Stoj 60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#21533 11-08-2006 08:15 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | You're a good daughter for looking into this, and I am sorry your dad has found himself in this situation. This can be a tricky disease, and it's best that he be seen at a place that deals only with head and neck cancers. I know it's a three-hour hike from Norfolk, but you should call the UVa Cancer Center in Charlottesville -- one of two National Cancer Institute-designated cancer centers in the state (meaning that it is on the leading edge of research and treatment). It has a head and neck cancer center and as a state institution should have provisions for treating state residents who do not have insurance. The social workers there may know of state plans that could be helpful to your dad. The Massey Cancer Center at VCU in Richmond (about an hour closer to you) is the other NCI-designated cancer center in the state. It has a head and neck surgery clinic that works with VCU med school's department of otolaryngology. VCU also receives state funding so should have provisions for state residents with no insurance. Again, check with the social workers there.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#21534 11-08-2006 08:55 AM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Dear Kendra - You have certainly come to the right place. There are lots of good ideas and help available. I went to the Insurance forum page that Tim mentioned and there is a wealth of information and ideas on how to speed up the process. I am fairly new, too and am the mother of a 33 year old son with no insurance and no job. going thru radiation after tongue surgery. Did your Dad have a biopsy? My son got the name of an excellent surgeon from the doctor that did the biopsy. And the hospital has been really great with reducing costs and helpful financial information. It really helps to talk to people and keep checking the OCF site.
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.)
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#21535 11-08-2006 09:47 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Closer to home for you, Eastern Virginia Medical School in Norfolk has a head and neck cancer center in its Department of Otolaryngology . (And its "patient education" section links to OCF!)
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#21536 11-09-2006 06:35 AM | Joined: Nov 2006 Posts: 9 Member | OP Member Joined: Nov 2006 Posts: 9 | Everyone... I want to thank you in the tips of what to do.
Leslie, your help was wonderful. I contacted the Eastern VA Med School and they took us right away and made my dad's first appointment for Tuesday, Nov 13th.
-Kendra
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#21537 11-09-2006 06:44 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Glad it worked out. As your dad's treatment progresses, new questions will arise. This is the place where you can get answers from people who have been there, both as patients and as caregivers.
Someone should accompany your dad to his appointments and take notes. The patient may not always "hear" what the doctor is saying, and it's good to have a second person there. The information on these boards and on the main OCF site will help you come up with questions to bring to the appointments.
The OCF homepage has links to hundreds of pages of information on a variety of topics, all related to oral cancer. It has a search function (separate from the search function for the message board) that will allow you to easily find what you're looking for.
Keep coming back!
All the best -- Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#21538 11-09-2006 06:55 AM | Joined: Nov 2006 Posts: 9 Member | OP Member Joined: Nov 2006 Posts: 9 | November 14th. Not the 13th. Wow, I looked at that wrong. Haha.
Thanks again, Leslie. I am planning on going to the appointments with him and I was considering bringing a notepad and my tape recorder. (I'm a journalism major, can ya tell? haha).
And I plan on coming back! :-)
-Kendra
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#21539 11-09-2006 07:04 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | One more thing -- once you get a diagnosis and treatment plan from Eastern VA, get a second opinion from one of the NCI-designated cancer centers (UVa or VCU), just to be on the safe side. (You may be closer to Duke, in North Carolina, but I don't know what its policies are about seeing out-of-state patients without insurance. You could always call and check.) Here's information from the main site about the importance of a second opinion .
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#21540 11-09-2006 07:06 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Ask before you bring out the tape recorder (you can frame it along the lines of "My dad and I just want to make sure that when we get home, we'll know exactly what was discussed today" or something like that). Be advised that some doctors may not agree, out of concern that, in a lawsuit, their words could literally come back to haunt them.
The notepad is fine.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#21541 11-09-2006 04:40 PM | Joined: Nov 2006 Posts: 9 Member | OP Member Joined: Nov 2006 Posts: 9 | Okay Leslie. Thank you so much for the tips. I will keep all of them in mind.
-Kendra
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#21542 11-09-2006 05:56 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Kendra, Please let me know if you are seeing Dr. Karakla at EVMS. He is my doc and one of the very finest. No need to travel to Richmond area, good treatment is in your backyard. Email me if you want more details and I'd be happy to meet with your dad. We have a support group that meets on Mondays for when he's ready. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#21543 11-09-2006 06:05 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Leslie,
Yes, the Eastern Maine Medical Centers site has a link to OCF.........and their lobby has the OCF handouts. They are my doctors and I gave them and our support group all the info on OCF. If you read the article on this site about the walk we did here in Va and look at the pic of me with the two docs...........those are the men that saved my life!
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#21544 11-09-2006 06:47 PM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Oh, Minnie, I should have remembered you were a local and sent her your way. Apologies.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#21545 11-10-2006 09:07 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hey Leslie, Never apologize for helping someone on here!! That was fantastic of you to take the time to research her area and help her get to the right docs. This doctors office and hospital are where she and her father need to be. Take care, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#21546 11-10-2006 02:14 PM | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 209 | Kendra, we brought a tape recorder and had no problems using it. We did ask each doctor first. Early on, we had experienced problems previous to bringing a recorder. We would get home from the doctor and each of us would have a conflicting review of what was said. One of the doctors even explained that it is common for that to happen. So much information is being given, you are processing one sentance and the doctor is 1 or 2 sentences ahead already. Each of us our processsing different portions of the discussion. So, he was all in favor of the recorder. After we settled into the routine of treatments, and as the weeks went by, the need for the recorder was dimished. By then we had read volumes of information from this website, and became comfortable with the doctors and what they were saying.
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
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#21547 11-13-2006 01:37 PM | Joined: Nov 2006 Posts: 9 Member | OP Member Joined: Nov 2006 Posts: 9 | Minnie-- I am thrilled you posted. Brian had suggested you to me, so you could possibly speak to my father. He does need support from someone who has experienced oral cancer.. face to face support. I'll email you soon.
Mike.. Thanks for the suggestion. I plan on explaining why I need the tape recorder. I think with all the information we might receive, that a recorder would work nicely. We shall soon see.
Thanks again, all of you, for helping!
-Kendra
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