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SIX MONTHS IS TOO LONG #197086
09-05-2018 10:04 PM
09-05-2018 10:04 PM
Joined: Apr 2015
Posts: 91
Louisville, KY
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Neicy Offline OP
Supporting Member (50+ posts)
Neicy  Offline OP
Supporting Member (50+ posts)
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Joined: Apr 2015
Posts: 91
Louisville, KY
I was hoping to get a couple of opinions related to follow up visits. I have been doing great after my surgery as noted below for 3 1/2 years. I recently moved to the West from KY. My doctor in KY let me come for check ups every month at first, then every two months, then every 3 months. I went today to the new Cancer Center I will be going to. I was super stressed out because I have been seeing the same doctor this whole time. This new doctor said I don't need to come in 3 months and gave me an appointment six months from now. I do not like this at all. Why wait six months? If it is going to return, better to find out sooner than later, right? He said the recurrence rate drops significantly after 2 years, so just come in 6 months. If I see something or feel something, then come sooner! By the time I FEEL something, it could be too late. Unless the recurrence rate drops to 0% I prefer to go more often. I totally don't get this. If it's so unlikely to return, why do they have you come back at all??? I don't see the harm in going every 3 months just to play it safe.

I thought maybe to just go to another doctor for a check up after three months. Then go back to this guy.

So, am I crazy or something? I don't think I can wait 6 months. Please can I get a couple of opinions? Am I being unreasonable? I don't think so!

Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
Re: SIX MONTHS IS TOO LONG [Re: Neicy] #197087
09-06-2018 04:34 AM
09-06-2018 04:34 AM
Joined: Oct 2012
Posts: 1,029
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,029
Toronto, Canada
I’m not sure how your insurance works, but going to your primary care physician before the six months are up may be a way of reassuring you that nothing untoward is happening. My husband used to go to his PCP every month or so even while he was in treatment. His PCP helped him with all kind of stuff (like sleep apnea, granulation at the feeding tube insertion site, skin changes after chem, etc.) that the oncologists simply did not tackle. The PCP is also the one who can advise you to go back to your oncologist if it’s necessary.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: SIX MONTHS IS TOO LONG [Re: Neicy] #197088
09-06-2018 09:32 AM
09-06-2018 09:32 AM
Joined: Apr 2015
Posts: 91
Louisville, KY
N
Neicy Offline OP
Supporting Member (50+ posts)
Neicy  Offline OP
Supporting Member (50+ posts)
N

Joined: Apr 2015
Posts: 91
Louisville, KY
Wow, thanks Gloria! I never thought to just check with a PCP. I have to find one being new to this area. That is great advice and I will follow it. I am new to New Mexico and getting used to the new insurance and having to find doctors. I will follow your advice. The oncologist is really great but I am WAY TOO paranoid to wait six months.
Thank you so much for your response.
Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
Re: SIX MONTHS IS TOO LONG [Re: Neicy] #197090
09-06-2018 05:33 PM
09-06-2018 05:33 PM
Joined: Oct 2012
Posts: 1,029
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,029
Toronto, Canada
Glad to have been able to support you.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: SIX MONTHS IS TOO LONG [Re: Neicy] #197506
10-28-2018 07:54 AM
10-28-2018 07:54 AM
Joined: Jun 2017
Posts: 29
M
Magnum Offline
Contributing Member (25+ posts)
Magnum  Offline
Contributing Member (25+ posts)
M

Joined: Jun 2017
Posts: 29
I too had my ENT tell me to come back in 6 months. I told him I wasn’t comfortable with that and wanted to come every month - we agreed on every other month.

I would call your doctor’s office back and tell them you want to be seen sooner than 6 months. Ask them to check with your insurance (or you can call your insurance as well and ask them how soon you can be seen and still have it covered by insurance) to see when is the soonest you can be seen.

Being stressed about it is not good for you either.

Hope this helps!

Susan


Susan
04.12.16 1st surgery; rt partial glossectomy; neck dissection; 2/38 lymph nodes positive
05.12.16 Resected T2, N2b, M0
05.24.16 Rad, Cisplatin
10.03.16 Clear PET
04.11.17 Clear PET
06.09.17 1st recur
06.21.17 2nd Surg: rt partial glossectomy; forearm free flap; rt thigh skin graft
11.09.17 2nd recur
11.30.17 Nivolumab
02.06-16.18 Brachytherapy
06.12.18 3rd recur
06.12.18 Lt axillary lymph node SCC
07.05.18 Pain pump placd
08.23.18 Pump removd
10.29.18 PET-CT responds to treatmnt



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