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#179930 05-05-2014 07:57 PM
Joined: Mar 2014
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kfisher Offline OP
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Well, one month out and I'd like to say things are healing well! I am having awfully bad ear pain though, which I am so hoping is referred pain as some of my tongue is still numb. Did anyone else experience an increase of pain a month or more out? I would like to associate this with a return of feeling but it's getting to the point that I almost want to use my Percocet again.

Also, I find myself worrying about calling the doctor as I don't want to be a nuisance. I know many of you will say better to be safe than sorry and I should run back to them with any concerns and I agree but I am being a chicken and don't want to bother anyone! I'm just putting it out there in words so I can work up enough courage to call them about some new concerns I have been having that are most likely nothing but that I would feel better knowing are truly nothing... if that makes sense. To be honest, sometimes I even feel like I am being a little bit intrusive here on this site. I know it's silly. Thanks everyone!

Last edited by kfisher; 05-05-2014 08:07 PM.

3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection
11/2017 - ovarian torsion
12/2018 - basal cell skin cancer



kfisher #179932 05-05-2014 09:08 PM
Joined: Nov 2009
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"OCF Down Under, Kiwi"
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I know exactly how you feel - in fact I think you have analysed your own fears very well. Having written it down here you might be able to take the next step which would be to ring the surgeon's office (we have a specialist nurse who fields calls like that). After my first surgery I went to the GP a couple of times to no avail because they don't have the experience to deal with the after effects of surgeries like ours. That leaves us with having to get hold of the surgeon or his/her team. My eldest son has great rationales for that. "They're there to help us, Mum. They get paid a lot for what they do so never feel guilty about asking for help etc."

I don't know what the earache could be except that you will be having a lot of nerve regeneration going on. If it's sore enough to make you want to reach for the strong stuff then that's another justification for getting in touch with your doctors.

And what nonsense about being intrusive on this site! People love to help. It seems a waste to go through all this and not share the things we've learnt.

Regards from a fellow worry wart and self-effacer:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
kfisher #179940 05-06-2014 08:43 AM
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Joined: Jul 2009
Posts: 1,406
Katherine, absolutely make the call. You can ask for whatever nurse helped you the most or whom you dealt with regularly and he/she will be more than happy to hear you out I'm sure. You sound like a very polite person so I'm sure your manner is respectful (not that this should matter - you're the patient - but it never hurts).

Let us know how it goes, please, and never be concerned about talking about anything here on the forum. You're part of our family and that's why we're here. No post is too big or too small. Every one is important.

Continued good wishes on your recovery!


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
kfisher #179941 05-06-2014 09:32 AM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Katherine - I'm also the type that hesitates when making calls. When I had a bunch of concerns about some Robotic surgery for hysterectomy, I just put all my concerns and questions on a fax form. (my word program had a bunch of styles to choose from) and then took it to Kinko's and faxed the questions to my doctor. The next day I got a personal call from my doctor and he went through answering every question! He also said he wished all his patients could do that. Whichever you decide to do, either phone or fax, just know that your health is very, very important, and your grandson is absolutely right - they are there to help you and that's what they get paid for. Good luck with everything!


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.)



kfisher #179955 05-06-2014 03:46 PM
Joined: Mar 2014
Posts: 34
kfisher Offline OP
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Thanks guys. I like knowing I'm not alone in the way I think about things! I called my surgeon today and they were able to get me in this afternoon. Said that they believe the ear pain and the weird nodule forming where the surgery was done on my tongue, which I thought could be a granuloma, is being caused because I'm biting on it and grinding my teeth, probably at night and since my tongue is still numb in that area I might not be noticing it. Now they think the ear pain is TMJ... What? I am relieved it's not anything to be too concerned about but seriously, what's with the cumulative mouth issues?!?!? I guess the next step is to get a mouth guard. Does anyone else have these kinds of issues? Anything else I can do to make sure the area heals? Any ideas on what to look out for? All my surgeon said was to make sure I go back on a soft food diet. And of course I ALWAYS think of about a million questions about two seconds after I leave smile. Without fail.


3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection
11/2017 - ovarian torsion
12/2018 - basal cell skin cancer



kfisher #179975 05-07-2014 07:30 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Do the visual on this... they cut you inside your mouth. Now I am not sure how extensive your surgery was or your surgeons route, but I know that with my neck dissection (had 40 nodes removed) I have stitches/scar tissue from the backend of my oral tongue in my mouth - down the left side of my throat - INSIDE as well as the usual visual scar on the outside. It's hard to describe but they literally cut through my neck outside to inside - I could feel it tightening during rads so I asked if I had been stitched there. They also removed the floor of my mouth on the cancerous side below where the tumor grew on my tongue, and reconstructed the whole thing - FUN RIGHT? Anyway - Because of this I am numb for the most part on the operative side (sensitivity does return eventually just not completely - it feels like a bee sting if I accidentally bite my tongue at this point) - so I tend to favor my other side - to chew and swallow. Fortunately the swallowing is okay but the mechanics of it are a little off so if I take in a lot of thin fluids I think (because I am rewired) they sometimes get into my ear canal which actually connects to your throat area (look at a diagram of the human head) This doesn't happen all the time but occasionally when it does I get an earache.

wink

have a good day.


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

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