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Joined: Oct 2013
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n74tg Offline OP
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
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I had an interesting thing happen last week. Somehow my ENT office visits had slipped through the cracks, I hadn't been seen since about July of last year (about 9 months).

So, they got me in quick (like 2 days later) to see a senior resident (about 6 months away from being on his own) as well as the head of the ENT department (and chief of head and neck cancer at the next door medical school). Besides a head and neck CT, they did a thorough visual and tactile observation as well as a great oral cancer screening procedure. I commented that I wish all the dentists knew how to do an oral cancer screening this well (they knew about this problem with dentists). Lastly, they did the scope through the nose and down the throat to get a good look at everything in there. That's the first scope I've ever had done.

I asked each of them what the office visit protocol was for a patient 16 months post treatment. The resident said during year one, it's 3 month office visits, year two it's six month visits, year 3 thru 5, it's yearly visits. He said some doctors are a little tighter in their scheduling, some a little looser.

Then the head of the department came in and answered the same question. He said three month intervals all the way thru year 5, quite a big difference. The resident who was also standing there was rather surprised. I expect he will tighten up his office visit protocol for future patients.

I send this to all of you only because it is apparently a lot of difference from one doctor to the next. But, we have a say so in all this too, as both doctors confirmed. If you think you need to be seen more often than they are doing, or if you notice anything unusual or a worrisome change in anything ... speak up.

It seemed like it had been quite a while since my last office visit. I should have spoken up sooner, but life sometimes gets busy and we forget.

For you VA patients - I am one too, and the VA just began a new office visit scheduling program. In the past they generated and sent appointment letters directly to the patient. That system worked pretty well. But, now they don't send those letters to patients anymore, they send them to your local clinic. The clinic staff has to call you to let you know of your next appointment. My local clinic said they are at least 30 days behind in notifying patients of appointments, and will probably stay that way for awhile until the bugs get worked out of the new system. That's why each of us need to KNOW the treatment protocol for where we are in the recovery process. When it looks like we should be having an appointment, maybe we need to be calling them... and bugging them, until appointment gets made. I asked my local clinic nurse about doing this and she said she would appreciate it if we would. That way the patients who are best advocating for their own care always get seen on schedule. The ones who don't care so much for their care, well they might slip a little longer between visits.

I have no problem using the system this way.

They also said if you have an internet "My Health-E Vet" account that some appointment information is available on the system. I haven't accessed my account yet, but I need too.



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
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This is one reason we all harp about NCCN member institutions, as they set the follow up protocols in addition to treatment.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Jan 2015
Posts: 37
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jan 2015
Posts: 37
Tony, my VA in Nashville doesn't have the new scheduling program yours does.

I do have a My HealtheVet account, which I really like and think you will too. There are three account types; get the Premium account which has the most features. Besedes being able to access much of your info, there are plenty of other features. One of the ones I like best is the ability to send secure messages to your doctors and clinics. Works similar to the PM system here on OCF. You do need a premium account for this feature.

You can also request refills of your meds on My HealtheVet.

By the way, it also lists your appointments for you. If you don't see an appointment on there that you think you should have, you can use Secure Messaging to contact the appropriate doctor or clinic to request an appointment.

HTH


Andrew
4x survivor
1998 - SCC of larynx
...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP
2002 - lung cancer, wedge resection
2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated
...chemo (carboplatin, taxol), dc'd due to neuropathy
2015 - SCC of palate
...Feb-April IMRT (46 x 70 Gy)
...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks
2016 - metastases to mediastinum, lungs, spleen, pancreas
...Aug-? pembrolizumab q 3 wks
Joined: Jun 2007
Posts: 595
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jun 2007
Posts: 595
Gi, My appointments were every 3 months for 3 years and every 6 months years 4&5 and then once a year year 6+. Every visit I recieved the Scope in the nose and every other I recieved a Chest X-ray and now recieve them once a year. Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Like Bob I've had 3-4 month interval checkups with scope and that seems to be continuing with my new Kaiser doctors, coming up on 6 years out of treatment. I started with twice-yearly PET/CTs, then after 2 years out it went to once a year. Had the last one over a year ago and I don't believe they plan for me to have any others unless something odd comes up.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18

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