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Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
So ... still around, even if I haven't posted in a while ... life was hard, and crazy.

I can't recall for sure what I posted about last, but I've broken a hip and then we all had the pandemic, and .. somewhere in there I got my CFS diagnosis too, before the hip I think, but who knows. I've been slowly falling to pieces.

Now I have an issue in my right arm (not the shoulder I broke previously, and honestly I don't think it's the shoulder at all this time). I have a lesion in my humerus but the orthopedist swears it's benign and therefore can't be the cause of my pain, so let's PT those muscles. One, I don't really care what he thinks because with my history it should be monitored either way ... Two, if the PTs don't know about it, they can damage my arm with their therapy even if it is benign, and three, he's wrong about the location of my pain, but he won't listen because he thinks I should be jumping for joy because "Not Cancer!" (As if we haven't all just discovered 500 ways they can kill you along with the cancer. Gah.) Then he decided to give me an injection for the "inflammation" (he never showed me any of the many scans I had; this WILL be remedied), but the nurse caught it and swapped it for something I wasn't allergic to so it wouldn't kill me.

And he's not listening because I am ALSO waiting to see a GYN because I have a growth elsewhere that is "probably benign" but should be removed anyway, and given my history, we really should get this checked. He doesn't have this information because I saw him all of ten minutes on my first appointment, where he just rushed to get me signed up for scans, asked me a million questions about my cancer history and my broken bones, and then said, "Oh, don't worry, it's probably not cancer" (which had not occurred to me till he said it!) ... and then at the follow-up today, spent less than ten minutes explaining and brushing me off. I had my husband with me, and even he could tell that's what was going on.

None of this is technically oral cancer, but I sure feel it's related to post-cancer extended-life complications. And being dismissed. Again. This sucks so much.
I may, if I am allowed, hang around here till I get my bearings a bit, just to chat (and I will try to find a more appropriate forum for the pertinent medical questions, not here) ... but maybe at least posting a follow-up can add some stats and data to whatever y'all collect ... I'm still alive, mostly, and this is where I am in my journey. Hi again!

ETA: Just realized this marks ten years for me from my first cancer ... and it took from December 2012 till the time on my signature box to get the proper diagnosis. This pain has been building since about January, or I'd've dealt with it sooner. Seems to be a pattern here. I get cancers that shouldn't hurt but do...

Last edited by KristenS; 07-31-2023 10:41 PM.

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
1 member likes this: ChrisCQ
Joined: Jun 2021
Posts: 42
Likes: 7
Contributing Member (25+ posts)
Contributing Member (25+ posts)

Joined: Jun 2021
Posts: 42
Likes: 7
welcome back. Sorry about your recent battles, life can be chalanging .

Very quiet at the forum these days, really no explanation of why.

Stay well


72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great

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