Misdiagnosis and word of caution

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Misdiagnosis and word of caution

Postby CreativeMuse » 30 Oct 2013, 10:35

I haven't posted in about a month, as I've been going through a lot and tend to just hide in my mental cave and shut the world out when things get overwhelming.

In July after having an extremely painful flex sig with a GI doctor, I was diagnosed with an anal fissure. You can read more in depth details in my intro post. In September, I developed a lump in the same area (it went from the size of a pea to the size of an almond in 3 days), which was first diagnosed as hemorrhoids and I was given a 10 day dose of Cipro because there was inflammation and some discharge. It did not get better, and I followed up with at the office of the original surgeon who I had met with (and fought with to try diltiazem before he performed LIS). He was out on vacation, and the other surgeon barely looked at me, told me it wasn't hemorrhoids, that nothing appeared wrong, that the fissure must be healing from the inside out, and it was just excess skin from the healing. I've been frustrated with my experiences with the medical professionals in my area, so I did some research, and found a well reputed CSR to see about an hours drive. I was able to see him 2 weeks after the previous surgeon visit.

When he examined me (with his finger), he said he was deeply alarmed and scheduled an emergency colonoscopy and a tissure biopsy. Result of the biopsy: anal cancer (squamous cell carcinoma).

Tomorrow I meet with an oncologist, and will be getting a CT PET scan to find out what stage I am at. Treatment typically (depending on stage and if it has spread to other areas) is chemo and radiation for at least 6 weeks...longer if it is not at an early stage.

I don't know how this was missed on the flex sig. This cancer is not the kind that comes from polyps, but more of a skin type of cancer. It's extremely rare (1 in 100,000) and unfortunately I have it.

Please, please go to a CRS if you are having problems and the fissure is not healing, or if you develop a lump and are getting inconsistent diagnosis. Two surgeons who were considered "the best local surgeons" in my area didn't take the time to check me out (besides just visually parting my butt checks and looking at it), and just acted with their god complex. I wish I had gone to the CRS back in July...it could have been caught sooner. Meanwhile I've been suffering in extreme pain with no compassion.
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Re: Misdiagnosis and word of caution

Postby soffiler » 30 Oct 2013, 10:41

That is an incredibly sobering post. Wishing you all the best, CreativeMuse!!
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Re: Misdiagnosis and word of caution

Postby CreativeMuse » 30 Oct 2013, 11:00

Thanks soffiler. It's a sobering experience. I'm terrified. No one wants to hear the big "C" word. I just spoke with the oncologist's office, and they only do scans on Wednesdays, and results take about a week, so the fear of the unknown is pushing my anxiety level to it's peak. I hope they can do something for the pain meanwhile, because it has become constant. My immediate family has been through a lot lately (my younger brother died unexpectedly a few years ago), and while they live 900 miles away, my mom is going to come to take care of me while I'm going through the chemo/radiation treatment. She's been struggling daily with his death, and I hate that this is also something they have to go through.
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Re: Misdiagnosis and word of caution

Postby soffiler » 30 Oct 2013, 11:19

While I might not be particularly religious, I still find this quote highly appropriate: "God doesn't give you any more than He thinks you can handle"
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Re: Misdiagnosis and word of caution

Postby owmybum » 30 Oct 2013, 11:22

Oh my gosh CM......... I'm so sorry to hear this news!!

I'm so glad you took things into your own hands and searched out another CRS to get another opinion...... It just shows we know our own bodies, and we know when something isn't right!
I hope it's been caught early enough, and you respond to the treatment well.
Please keep us updated...... We are here when you need us

OMB x :smilyhug:
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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Re: Misdiagnosis and word of caution

Postby JHH » 30 Oct 2013, 11:24

Yikes, thats horrible. Good thing you insisted in seeing a competent doctor.
I really hope you get it sorted, and recover fast.
- Fissure developed in Jan '13
- Started rectogesic in Feb '13 and diltiazem Apr '13.
- Got botox Jun '13
- Healed by Okt '13, although I still had some irritation for about a year.
- New fissure April '22, healed June 2022
- New fissure 24. December 2023
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Re: Misdiagnosis and word of caution

Postby Scientist2516 » 30 Oct 2013, 14:35

CM, I really really hope you get through this OK. Please keep reporting back here. You know you can rely on us for sympathy at the very minimum.
I am so sorry for your diagnosis and wish you all the very best in the times ahead. Win this battle!
Nifedipine/lidocaine, no help
Diltiazem, effective, but caused major rash
Nitroglycerine, effective.
Topical estrogen for final healing.
Gentle heat to bottom - pain relief, muscle relaxant
Kondremul mineral oil
Time - lots of time.
Status - Healed!
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Re: Misdiagnosis and word of caution

Postby CreativeMuse » 30 Oct 2013, 17:33

Thanks to all of you for your kind words and encouragement. I really appreciate it. :)
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Re: Misdiagnosis and word of caution

Postby Ever the Optimist » 30 Oct 2013, 18:17

Creative,
I'm also gutted for you to read this update.
Although I've no doubt that you are currently terrified, you display a great positive attitude.
Hang on to your strength and have every faith that with the correct treatment and an excellent CRS, you will get through this. It's great to read you have the support of a close family network and may you all get through this together.
Sending you much love & healing energy & please use us anytime to release any fear, distress or anger that you need to.
There will always be at least, one of us here to respond and help you through this difficult time.
:smilyhug:
Chronic Fissure diagnosed December 2011
Healed by Diltiazem around Feb 2013
Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
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Re: Misdiagnosis and word of caution

Postby Just 'Pain' Tired » 02 Nov 2013, 02:20

Thanks for taking the time to warn others! So sorry for the scary diagnosis and hope you are now in the hands of competent doctors! Wishing you the best with your healing! :huggies:
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