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High Grade Dysplasia

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High Grade Dysplasia

Postby LO239 » Sun Jul 07, 2013 10:14 pm

Hello,

I had a right hemi-colectomy performed back in May. I had a Tubulovillous Adenoma that was about 2cm removed with high grade dysplasia. Also 27 lymph nodes 0/27 showed no malignancy. However, when I was reading my pathology report the specimen consisted of 22cm o distal ileum with attached cecum and ascending colon and unattached vermiform appendix. Each section has their own measurements. Does that mean that these are just tissue samples or that was actually removed. When I do ask my surgeon I can never get a clear cut answer. Any opinions or ideas would be so very helpful.

Also, is waiting a year for a follow up colonoscopy too long since I had this type of polyp and has anyone ever had high grades and ever had follow ups with no polyps in future scopes. Also do I need to consult an oncologist if this is high grade dysplasia.

Any info, suggestions, feedback would be wonderful.

Truly,
Laurie
LO239
 
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Re: High Grade Dysplasia

Postby Bev G » Mon Jul 08, 2013 7:13 am

Hi Laurie,

What you describe are parts of you that were actually removed (ie about 10 inches of colon, appendix, nodes). You question about follow-up colonoscopies is a great one, and far too important for anyone here to give you a definitive answer about. Discussing this with your surgeon and oncologist is important. The very most important thing you need to do right now is develop a comprehensive plan for the future, to try to make sure that you don't wind up with a problem. Yay for you for having caught this so early.Now run, not walk, with that good fortune and make sure you speak with people who REALLY know the appropriate follow-up plan, and follow it assiduously! If you are close to an NCI cancer center (look on line for one close to you) I think I would be very tempted to take your path report and go talk to them about it. I think they would be happy to see you while a big difference can be made in outcome!

Best wishes to you.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now
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Re: High Grade Dysplasia

Postby Ehut » Mon Jul 08, 2013 10:36 am

I highly recommend a follow up colonoscopy within 6 months of the original. I had a 3 cm polyp with severe grade dysplasia found and removed during a colonoscopy in September '10, and was diagnosed stage IV during another colonoscopy only 14 months later. Mayo Clinic told me that had the original colonoscopy been performed by them, they would have had a follow up colonoscopy in 3 months since that type of polyp is almost to the point of being cancerous.
Dx 12/11 rectal stage IV w/ 6 mets to liver
4 cycles FOLFOX 12/11 to 2/12
5 days radiation 2/12 (European protocol)
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
Currently NED!
Ehut
 
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Re: High Grade Dysplasia

Postby LO239 » Mon Jul 08, 2013 11:37 am

Thanks to you both for the input. I really appreciate it.

For Bev, what is an NCI cancer center. I will in the mean time look it up. The surgeon who performed my surgery has been practicing for about thirty-six years. He is well respected for the work he does and sits on a couple of medical boards. I like him, but just want to cross all y t's and dot all my i's so I don't leave any stone unturned. Most of my family and friends think I am being too aggressive and paranoid but I like to think of myself as my own health advocate. I do a lot of research so your suggestion is most important to me. Seems like you might be your own health advocate as well.

Thanks also Ehut for your advice. I had my surgically resected, so I don't know if that makes any difference versus a colonoscopy. I always get so confused because they say that colon polyps are slow growers yet then I read mixed info regarding it.

Well I will carry on from here.

Truly,
Laurie
LO239
 
Posts: 7
Joined: Sat Feb 23, 2013 11:28 pm

Re: High Grade Dysplasia

Postby Bev G » Mon Jul 08, 2013 2:08 pm

Hi Laurie,

Here's a link for NCI (National Cancer Institute) centers for you. You can search by State.

http://www.cancer.gov/researchandfundin ... cercenters

All the best,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now
User avatar
Bev G
 
Posts: 4467
Joined: Thu Jan 07, 2010 11:19 pm
Location: Quechee, VT

Re: High Grade Dysplasia

Postby Daisymae » Mon Jul 08, 2013 7:11 pm

Hi Laurie, I also had a tubulovillous adenoma w/high grade dysplasia discovered Feb 2012. Mine was in the rectosigmoid and also resected. It was 9x6 cm. My dr is at Sloan Kettering in NYC. It was recommended I have a follow up colonoscopy 1 year later. Because we wanted to try and get pregnant, my doctor did a colonoscopy in Sept 2012 (so 7 months later) so that we could try to get pregnant Nov/Dec (6 months post reversal surgery). That colonoscopy did not show any polyps. Dr at MSKCC actually said I could go as long as 2 years before my next colonoscopy, which I would never do. I am way too paranoid! I am actually pregnant and due next month (!) and plan on having a follow up colonoscopy sometime between Sept and December (so 1 year - 15 months since last colonoscopy).

We have discussed at length with my dr at MSK about what the proper follow up for something like this is, given my age is 35. Between this doctor and my GI (who trained at MSK but is now private practice), and the genetics folks at MSK, we have come up w/the following surveillance given my history and lack of family history of polyps, Colon CA or any other associated CA's: Basic surveillance for age appropriate things like mammogram. My GI feels the things that "travel" with colon CA and should be looked at are skin, ovaries and uterus, and of course colon. Because my polyp was high grade dysplasia and "not cancer per-se" according to my drs, they feel further MRI, CT/PET etc is not warranted. Instead they recommend the following: yearly colonoscopy for first 1-2 years, go from there. Upper endoscopy every 1-5 years, sooner if any suspicious GI symptoms arise. Yearly skin check. Yearly pelvic and abdominal ultrasound (way to look at uterus, ovaries, etc without really invasive testing) and yearly physical including blood work.

I did not see an oncologist because none of my doctors felt this was necessary.

I think it is great you are being so proactive with your surveillance and follow up. From what I understand, it is rare to catch things in this early stage. I had 3 doctors (including a well respected NYC GI) tell me I had nothing to worry about, was being paranoid, just hemmoroids,etc..... Glad I did not listen to them.

Please feel free to PM if you have any other specific questions.
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