#6570 12-25-2005 11:59 AM | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I originally started with an Oral Surgeon (it is my impression that Oral Surgeons are on the "dental" side of the house and ENTs are on the medical side of the house) for suspicious lesions under my tongue -- At one point, while traveling, my InsCo didn't like me selfreferring my self to an oral surgeon (didn't have any in the state I was in on their list) so I went to an ENT. Been doing that ever since.
Since my recent tumor removal finally resulted in clear margins, I am having radiation but not chemo as a preventative measure. Since there is no medical oncologist (MO) involved, the ENT is by default taking the role of Ringmaster for the entire treatment. Based on history with Oral Surg and ENTs, I expect I will be seeing my ENT at least every six months forever.
Because I travel a lot, I have gathered all of the pertinent pathology reports, etc., and now even my CT scans on disk, so if I am somewhere else, I don't have to start a new ENT from scratch just looking in my mouth. My current ENT said that I should consider myself one of the "experts" in my treatment.
BTW, I have already applied the philosophy in the above paragraph to my other medical work. I keep paper or computer copies of all my lab work and keep a running summary on a few sheets of paper of pertinent stuf like cholesterol, BP, thyroid, PSA, etc. so a new doc (or even a current one) isn't wasting time shuffling thru a fistful of lab reports -- He/she has the numbers and trends right on one sheet for one kind of test.
Pete
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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#6571 12-25-2005 04:43 PM | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | Pete - your approach to your records is really good. I learned early on in the military to get copies of everything from dental records to medical reports and test results. I took them by hand everywhere I went. When the military ships you to 3 different duty stations around the world in less than 18 months, your medical records and personnel files never get there until you are already on your way to someplace else. Not all patients can tell the new doctors everything about what has happened to them in the last year. Cancer patient
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#6572 12-25-2005 05:06 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Great idea about the laminated card - what about those medic alert bracelets - would that work for this kind of thing?
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)
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#6573 12-25-2005 07:56 PM | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Brian, I should have mentioned that my habit of collecting my medical papers of course grew from my military experience of carrying records between duty stations.
I hadn't thought of the cumulative effect of radiation in regard to other medical treatment. This will be something to discuss with my RO when next we meet.
Pete
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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#6574 12-25-2005 08:13 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Gary, my husband has a dog tag like thing that has his doc's name and number and other important info. He got one for me but I don't consider it a very sharp fashion accessory. Let me know if you want to know where he got it. | | |
#6575 12-26-2005 01:38 AM | Joined: Oct 2005 Posts: 122 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Oct 2005 Posts: 122 | Pete,
When I moved here, I brought my CT scans, chest xrays and mammomgrams. When I found an ENT here, my ENT in Ks sent him all my path, visits, labs, etc. My ENT is going back to the Midwest to teach at the University of Missouri in Columbia so I asked for ALL of my records. I have them from my FP physician as well. I kept a copy for myself and make one for whomever might need it. I was in panic mode when I found out the doc here in Florida was leaving, but I will be fine. Laminated card is a great idea. I have my precription records on the reorder sheet from my mail order pharmacy, that made it really easy to hand over to my new PCP. I saw her the other day and she said "Why don't I have results from the CT and chest xray you asked me to order?" and I said "Because they are for my 3 year check up." I work WAY in advance!
Sincerely, Lisa
SCC Tongue T1N0M0\Dx 3-10-03 Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03 3 Year Survivor!
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#6576 12-26-2005 04:24 PM | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | There is a company just being formed that is trying to put, in a safe and secure database, a persons complete medical history with all scans etc. included. You would have a coded password for any doctor to access all this over the web that you could then give out. I have looked at the Beta version, and it is very complete and can be expanded into more things personal, such as living wills, family contact information, and more.
My dog has a small grain of rice size computer chip in his shoulder. If he ends up at the pound or at a vets office they have a scanner that they pass over his body that reads the tiny chip, and that has a code number it gives out. The vet or pound then can call a toll free number and access all the information about his owners phone number and medical records. It is infinitely updatable over the web by me. I personally would be wiling to have something like this put in me, but it would never be allowed. Fear of big brother and all that. So hence my 3X5 laminated card.
I don't think the medic alert bracelets that are premade would have enough information, unless they gave a first responder or doctor a mechanism for obtaining the massive amount medical data we all have, such as via the new company mentioned above.
Also related to lisa's post, don't think those three year old or 5 year old scans and test results are without value. They offer baseline data to track trends or to distinguish something new from something pre-existing but perhaps not mentioned in a previous report. For instance in my case the radiologist has stopped commenting on the small black spot on my liver for the last three years which has remained unchanged. Without the first one where it appeared, someone reading the last one might think it was something new.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#6577 12-26-2005 11:43 PM | Joined: Oct 2005 Posts: 122 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Oct 2005 Posts: 122 | Absolutely, Brian. I have a piece of lymph node under my sub?mandibule that shows up in my two post op scans, and is unchanged thus far. It is mentioned in the two post op scan readings I have, and clearly visible on the scan. It is the first thing I look at when I get the scan to take to the doctor. And as an FYI, I had the scans on CD to take to my physician, but the reader was in Radiology and he wouldn't have an opportunity to view it prior to seeing me, so I stopped at the hospital and got the film. Now I have both! :-)
Technology is amazing. I wouldn't mind having a chip on my shoulder containing all my health information.
Lisa
SCC Tongue T1N0M0\Dx 3-10-03 Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03 3 Year Survivor!
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#6578 12-27-2005 01:48 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Another option would be to scan in your records and download onto a flash-card USB device; information could then be downloaded via USB port to any computer. I know friends who have various household data in such a form -- you could also put on a CD. In fact, my MP3 player which has a 20 gig hard drive can also hold these data, just hadn't thought about it until now.
These approaches allow all the records to be in one easily transportable form.
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#6579 12-27-2005 07:42 AM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2005 Posts: 306 | It is possible to purchase your own web domain name and post your own records to a site accessed only by password. With only a bit of computer savvy there isn't much to it. The domain names are VERY inexpensive, especially the .org names - $7 or $8 per year, and the web site hosting can be done for $3 or $4/ month. In fact, if we got together and shared a site, the cost could be much, much lower for each. Just a thought. I really like the idea of a hosted site like the one Brian mentioned. Tom
SCC BOT, mets to neck, T4. From 3/03: 10wks daily multi-drug chemo, Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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