Low Rectal adenoma high grade dysplasia-lost

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Sixpackmom
Posts: 17
Joined: Sat Jan 16, 2016 9:28 pm

Low Rectal adenoma high grade dysplasia-lost

Postby Sixpackmom » Sat Jan 16, 2016 9:59 pm

D/T symptoms I was sent for a colonoscopy 4 months ago they found a 6 cm low-lying adenoma, which after two biopsies has shown high grade dysplasia and right at the edge of the sphincter. EUS showed at edge of T2 or T3, but the surgeons weren't sure so they attempted EMR. intermittent portions of the tumor would not lift up with saline injection. they were not able to remove all. While they say it isn't cancer (yet)everything I look at says it's a very likely- just that they haven't found the cancer cells with partial biopsy. they are waffling back and forth between doing TAE or APR. It is at the edge of the sphincter and in the muscular propria, so is TAE even an option? they just keep putting me off which is scaring me, like they don't want to make the awful decision to do APR. But waiting is dangerous too? Anyone have insight to this situation?
Rectal adenoma HGD 9/15
3 biopsies tubulovillous w/HGD, partial EMR 12/15
TAE 2/2/16, not clear margins near anal sphincter

Ajane
Posts: 427
Joined: Tue Jul 23, 2013 3:03 am

Re: Low Rectal adenoma high grade dysplasia-lost

Postby Ajane » Sat Jan 16, 2016 11:45 pm

I would recommend you research TEM (transanal endoscopic microsurgery) and find the most experienced Board Certified Surgeon in TEM you can find for a second opinion. TEM offers better visibility and studies indicate better outcomes compared to TAE.
7/13, T2, G3, Ultra-low. CEA 5.7 KRAS Wild, MSS
8-9/13 6 wks Xeloda/radiation
12/13 TEM pCR NED
5/15 CEA 4.6 PET 1.5 cm met, UL Lobectomy
6-10/15: Rounds 1-2 Xelox+Avastin; 3-8 Folfox+Avastin
10/15-4/16: 12 rounds Avastin
9/2016 CEA 4.2, 12 mm AP node
11/2016 CEA 4.3. PET/CT. 16mm AP nodal met removed
4 wks chemorad
2/2017 NED CEA 2.4
Carafate to tx esophageal ulcers caused by rad
Avastin maintenance postponed

2 Corinthians 12:9

prs
Posts: 201
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Low Rectal adenoma high grade dysplasia-lost

Postby prs » Sun Jan 17, 2016 12:48 am

To me this all seems a little strange, why should you need an APR when they haven't even confirmed you have cancer?

Standard treatment for rectal cancer that hasn't spread is:

1. Chemoradiation to shrink the tumor and reduce the impact of surgery
2. Surgery
3. Chemotherapy

Do you know why you didn't have chemoradiation first before surgery? Is your surgeon a board certified colorectal surgeon?

IMHO you should get a second opinion at a recognised cancer center before any further treatment.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

Sixpackmom
Posts: 17
Joined: Sat Jan 16, 2016 9:28 pm

Re: Low Rectal adenoma high grade dysplasia-lost

Postby Sixpackmom » Sun Jan 17, 2016 4:01 pm

I was seen at a certified cancer treatment center with board certified colorectal surgeons. they are thinking I need the APR because they say the adenoma has grown into the sphincter rim, regardless of whether it's cancerous or not they say they can't fix that. But they have not found any cancer cells, even though they believe they're there in their experience. That is where I am confused as well it seems very aggressive when I don't have cancer yet. I am having a lot of problems with my bowels and pain but I will ask surgeon about TEM being an option. It just worries me that they might leave something behind.
Rectal adenoma HGD 9/15
3 biopsies tubulovillous w/HGD, partial EMR 12/15
TAE 2/2/16, not clear margins near anal sphincter

prs
Posts: 201
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Low Rectal adenoma high grade dysplasia-lost

Postby prs » Sun Jan 17, 2016 4:48 pm

Sixpack, it would also be a good idea to ask about chemoradiation treatment.

Does your CAE come in high?
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

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purplekangaroo
Posts: 88
Joined: Tue Feb 24, 2015 6:08 am
Location: England

Re: Low Rectal adenoma high grade dysplasia-lost

Postby purplekangaroo » Sun Jan 17, 2016 4:59 pm

Hi there, I would recommend having it fully removed by which ever means possible, don't let them leave you waiting. I dont mean to scare you but I had my first colonoscopy Feb 13, they found a 3 cm adenoma they took a biopsy which showed low grade dysplasia in March 13 they attempted Emr but couldn't remove all of it, took more biopsies - low grade dysplasia. Did some more Emr 3 months later ( they have to leave 3 month intervals) this time the biopsy shows high grade dysplasia. The surgeon kept me hanging on till august to tell me high grade he still didn't think it was cancer but I wasn't happy he scheduled surgery for Oct 13 turns out I had stage 3 with 4 cancerous lymph nodes. They might have a fair idea when they see cancer but not always, none of the people who treated me thought it was cancer - how wrong were they? If I knew then what I do now I would have demanded the op. All the best to you and I hope it turns out to be nothing serious.
LAR 29/10/13
Leak, temp ileo 5/11/13
Stage 3cc aged 31 4\20 nodes
6 months xelox 24/12/13
1 clear CT 5/7/14
Genetic test negative for lynch
Ileo reversed 18/11/14
Colonoscopy 6/2/15 normal
Second CT 6/2/15 ??
Trying to resume some sort of normality??

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Low Rectal adenoma high grade dysplasia-lost

Postby weisssoccermom » Sun Jan 17, 2016 5:05 pm

Peter,
I seriously doubt any insurance company would cover chemoradiation to a patient whose biopsy has not proven to be cancerous. I also doubt that you'd find a doctor that would order those treatments even if they did suspect cancer. Without that confirmed diagnosis and even with a diagnosis of high grade dysplasia, I just don't see it happening.

Sixpack.....as you can see from my signature, I had an excision...however not the TEM because it wasn't widely available back in 2006. Although more centers are now offering it, it isn't still widely available, due to the cost of the equipment and the significant learning curve for the doctors. However, I would seriously consider that as a first line viable option. You may have to travel to a center that offers it but it would be well worth it. Remember that if you have a TEM/TAE and IF the excised specimen comes back positive for cancer you can ALWAYS go back and have the more radical surgery. Think of the TEM/TAE as a more extensive biopsy. In your case, I would highly encourage it with the idea that it is perhaps only the beginning of treatment.

I will be honest with a tumor that has encroached onto the sphincter...even if it isn't cancerous....you are likely facing more difficulty with bowel movements, etc. The success of a TEM all depends on how much of the sphincter actually is involved. Only you can decide what you can/can't handle. Personally, I wouldn't do nothing...you at least have to get it out. I just reread your post and since the actual tumor is so low and the surgeons would have a very good field of view, a transanal excision would be perfectly acceptable although the TEM would be preferable. If it were me, I would do the least invasive procedure FIRST....with the knowledge going in that, depending on what the excised specimen shows, I may very well need to have the APR surgery. Hope that makes sense.
Good Luck.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Sixpackmom
Posts: 17
Joined: Sat Jan 16, 2016 9:28 pm

Re: Low Rectal adenoma high grade dysplasia-lost

Postby Sixpackmom » Sun Jan 17, 2016 6:17 pm

Peter, chemoradiation not possible as cancer not found, yet.
Purplekangaroo, thanks it doesn't scare me, that is helpful information. They did two biopsies within 5 weeks and it had grown 25% and changed from low grade to high grade dysplasia!. Now been 4 weeks again waiting on consult with a very highly regarded colorectal surgeon in Dallas.
Weissoccermom (love me some soccer), thank you for wise , rational words. I think what you said makes sense. I read on here of someone who had exactly same situation but chose APR and they found cancer and in lymph nodes.... that is only scary part about less aggressive surgery, you cant see lymph nodes. I have two weeks to wait for some guidance. Thank you all.
Rectal adenoma HGD 9/15
3 biopsies tubulovillous w/HGD, partial EMR 12/15
TAE 2/2/16, not clear margins near anal sphincter

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Low Rectal adenoma high grade dysplasia-lost

Postby weisssoccermom » Sun Jan 17, 2016 6:37 pm

Sixpackmom.....you are quite correct that lymph nodes wouldn't be taken with an excision (although mine included one or two). IF you do have an excision, make certain that it is a FULL THICKNESS and nothing less than that. While there is no guarantee of anything with cancer, IF the excision came back 100% cancer free....even if it was high grade dysplasia.....then the probability of any lymph nodes being positive would be extremely small. In addition, if the ultrasound shows no positive nodes and the specimen was negative for cancer, I don't believe any doctor would tend to believe that there would be positive nodes. Rectal cancer starts with a tumor....and spreads to the nodes.....not vice versa.
In my case, I choose the excision, knowing that the tumor was positive for cancer and the ultrasound and CT showed no suspicious nodes. However, in choosing, I was prepared to undergo the more radical surgery (in my case an LAR) had the excision biopsy (after chemoradiation) come back positive for cancer. IF you choose the excision first....you MUST go into it with the realization that should there be cancer in the pathology report, you would need to have the APR surgery. IF there truly is no cancer in the tumor, then you've dodged a bullet.
For me, I look at it this way. If you choose the APR initially and it shows no cancer, you can't turn the clock back. There is no other option. If, however, you have the excision first you do have options. You should know that recovery from an excision is very quick and easy. My surgeon told me that if my surgical path report came back with cancer cells, she would schedule me for surgery within two weeks. You don't have incisions, etc. with an excision...so no difficult recovery. Just an option that you have if you want to utilize it.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Daisymae
Posts: 129
Joined: Thu Mar 29, 2012 5:23 pm

Re: Low Rectal adenoma high grade dysplasia-lost

Postby Daisymae » Sun Jan 17, 2016 9:17 pm

Hi - I had a 9x6 xm high grade dysplasia tubulovillous adenoma. I was treated at MSKCC. The doctor told me no one in their right mind would order radiation for someone without a definitive diagnosis of invasive Cancer. On the same note I was told it needed to be completely removed and he would treat it as Cancer in terms of removal, should the mass come back with any Cancer. That meant completely removing mass and lymph nodes. He did lower anterior resection with temporary ostomy - the mass was 2cm from anal verge. Have you considered a second option regarding the apr? It is such an extreme surgery - I would want confirmation that was absolutely necessary but that's just me. Good luck in your decision!

Tanya
Posts: 116
Joined: Fri Jul 03, 2015 10:34 am
Location: Kings park NY

Re: Low Rectal adenoma high grade dysplasia-lost

Postby Tanya » Mon Jan 18, 2016 10:11 am

A you shure, itis rectum relative? I have a anal cancer 3b, so itis look like treatment you need for Anal cancer.
Chemoradiation - first. And the surgery itis the last one if nothing works.
Dx-32y.o. Anal cancer-stage 3.
Aug-Sep xeloda & radiation-30
November 12-MRI-bones clear
November 30-NED
Moms of two (3 & 12 y.o.)
Recurrence -01.19.2016
Colostomy and APR surgery - 01.27.2016
Possibly chemo - June

Sixpackmom
Posts: 17
Joined: Sat Jan 16, 2016 9:28 pm

Re: Low Rectal adenoma high grade dysplasia-lost

Postby Sixpackmom » Fri Jan 22, 2016 3:52 am

Yes I am SURE it's rectal adenoma encroaching on sphincter, not anal adenoma (not camcet yet). I can't get chemoradiation because it has not shown cancerous even though it looks and behaves like cancer. As far as 'have I considered other options than APR'... Of course. Thats what im trying to figure out. There just are limits with the location I think. It's literally in the rim of anal sphincter and extends up 6cm by 6cm, covering the majority of rectal circumference. If TEM or TAE are still options that's the first choice.... except for 2 factors if I have this right??? 1) out of my control- if sphincter is involved there is no way to remove a portion w/o destroying sphincter resulting in permanent colostomy and 2)in my control- APR is only way to essentially give guarantee of no recurrence because it takes all surrounding tissue /lymph, TAE leaves function but risks recurrence with high risk of metastasis?
This is crazy when I keep hearing 'not cancer yet' frim dr.
Has anyone heard of artificial sphincter replacement after these kinds of surgery? Someone said this could give me complete removal but not permanent colostomy.
My CEA is low side of elevated, but local dr said that half of people don't show elevation, so only useful for those that do and it goes down after tumor removal then is Re checked to see if ever goes up again. That was news to me too. Thought that was good news, guess not.
Rectal adenoma HGD 9/15
3 biopsies tubulovillous w/HGD, partial EMR 12/15
TAE 2/2/16, not clear margins near anal sphincter

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Low Rectal adenoma high grade dysplasia-lost

Postby MissMolly » Fri Jan 22, 2016 9:20 am

Sixpackmom:
I have a permanent ileostomy (due to an extensive perforation of my intestine . . . think, unzipping of the length of my large intestine. Yup, that's me).

I write to let you know that you can live a full and active life with an ostomy. Do not let the prospect of a permanent colostomy frighten you.

While there certainly was an initial emotional and physical adjustment to my ostomy, living with my ostomy is simply not a big deal. I am OK/alright with it.

Current ostomy products (wafers that attach to the skin and bag/pouches) have come a long way and are state of the art. The wafers are thin and pliable, many containing elastic polymers that conform to the topography of a person's particular abdomen (dips, creases, crevices) and move and adapt with the body as the body moves (think yoga and pilates, all possible). Bags/pouches come in a wide variety of sizes, from mini pouches (4-5 inches) to maxi pouches (10-12 inches). Bags/pouches have a backing of a soft cloth material as an option. There is no rustle sound of plastic. An intact and adhered wafer is water-proof and air-tight. There is absolutely no odor or smell.

In the course of a day, I give little thought to my ostomy. It does not limit me in any way.

People have ostomies for a variety of reasons . . . active Chron's disease, ulcerative colitis, pelvic floor dysfunction. Young people have ostomies. Likely you have walked by someone with an ostomy . . . and not been aware of it in the slightest.

My point being: Do not be frightened by an ostomy.

My ostomy measures less than 1 inch across in diameter. It looks like a small shirtsleeve button on my abdomen. It is actually quite cute.

Although I did not foresee an ostomy on my life's radar, I find living with an ostomy of little negative significance. Truth be known, I find living with an ostomy in many ways easier than normal pooping.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Low Rectal adenoma high grade dysplasia-lost

Postby weisssoccermom » Fri Jan 22, 2016 12:23 pm

To answer your question regarding an excision, yes, it can be done even if the tumor is very near the sphincter. HOWEVER, with a tumor the size that you are mentioning, an excision is almost out of the question unless they can shrink it first. When they do an excision, they will do a full thickness....meaning that they would go down and through the rectal wall. The hole is either closed with sutures or, in some cases of small 'holes' (depending on size and location) a mesh patch of sorts can be sewn in. Normally, the rule of thumb with an excision is to have a tumor that is less than 40% of the circumference of the rectum. Think of it this way. Visualize the leg of a pair of pants. You get a hole in the leg...and NOT at the seam. You either 'patch' that hole so that the circumference of the pant leg remains the same OR you sew up the hole. IF, however, the hole is too big then you are making the leg smaller by stitching the hole up. If it is a small hole....likely you won't notice any difference. A larger hole would lead to the pant leg being smaller and likely more uncomfortable. Now, take that analogy and think of what would happen if you made your rectum significantly smaller. Your body would have a very difficult time evacuating the fecal matter causing more problems for you. In cases where patients have excisions (either TEM or just an excision), the tumor is generally small and/or the patient has undergone radiation to shrink the tumor.

It sounds as though you're in a very difficult situation. If the tumor is that large I'm honestly not sure that you have a lot of options without having them attempt to first shrink it...and then comes the difficulty of having radiation on a tumor that doesn't test positive for cancer. I would also like to address another issue in your post. You assume that APR gives you a guarantee of no recurrence but that isn't true as well. IF..big IF...there are cancer cells associated with this tumor, then there is NO guarantee with whatever surgery you have. Better chances, yes....but NO guarantees. That is a fallacy to assume that if someone has an APR there is a guarantee that cancer won't return. IF your tumor truly has no cancerous cells, then you wouldn't be facing (at least from this tumor) any possibility with an excision of mets.

There are some small studies regarding an artificial sphincter but from what I remember reading, they are used on patients who have fecal incontinence NOT due to surgery and are used as a last resort before having stoma surgery. Ten years ago (and I recognize things have and will continue to change), the attitude was simple. Why would there be a need for more research into avoiding a colostomy for rectal cancer patients....you can live a full life with one (and I'm not saying you can't) so why bother doing research into something that truly isn't "necessary". Personally, I don't agree with that assessment but I do believe that that attitude still prevails today.

I'm rather curious that with a tumor that size and encompassing almost your entire rectum, cancer or not, aren't the surgeons concerned that you could get a blockage because of this? Aren't they pushing for some surgery ASAP to relieve any potential problems? As for the CEA, you are understanding correctly. My CEA was 0.7 at diagnosis with a very large rectal tumor. After chemoradiation, surgery and more chemo, my CEA remains in the 0.9 - 1.7 range (it can and does fluctuate) so the test is NOT a good indicator for me. I could have a recurrence and likely not know about it based solely on that test. We stopped running the test....it just doesn't make sense and only adds more cost to my bill.

If I were in your position, considering that it appears you have few options due to the size and location of the tumor, I might consider asking the doctors about radiation, if for no other reason than to attempt to shrink the tumor for removal by TEM. The problems with that option are: (1) putting a patient through radiation without a diagnosis of cancer runs risks as well, (2) insurance may not pay for the treatment which is VERY costly and (3) if you had radiation and the treatments did their job, then you run the risk of never knowing whether or not the tumor contained any cancer cells.

Are you 100% certain that the surgeons you are seeking advice from are board certified in COLON and RECTAL surgery. Too many General surgeons (also board certified but just in general surgery) will claim to be 'experts' in this field and while they certainly can do the surgery, they are not board certified in COLON and RECTAL surgery as well as general surgery. Here is the link to verify that the surgeon(s) that you are seeking advice from are certified.
http://www.abcrs.org/verify-a-physician-2/
Please realize that even though you may have gone to a cancer center....many times those surgeons are just certified in general surgery. It is at least something to think about. Good luck.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Sixpackmom
Posts: 17
Joined: Sat Jan 16, 2016 9:28 pm

Re: Low Rectal adenoma high grade dysplasia-lost

Postby Sixpackmom » Fri Jan 22, 2016 4:25 pm

Thanks Weisssoccermom, I get there is no "true guarantee " but virtually no recurrence occur when APR on contained tumor. I've certainly considered asking if we could attempt to reduce the tumor regardless of cancer cells being found or not. But about the time I was going to ask the team of doctors basically dumped me, aND the cost w/o insurance is crazy. . They all 3 have board certification in colorectal surgery but stated my case was out of their area of expertise due to all of these weird factors I've mentioned. I am certainly feeling I need something done soon before I get blocked up again... they debulked twice with EMR already. But I have been waiting to see new colorectal surgeon in Dallas, she has multiple awards and certification in these complex cases apparently. So hoping she helps me soon. I had heard of a study doing the sphincter replacement after APR but not much info out there. Nerve racking to wait. I appreciate your words.
I've started having tailbone pain since December procedure and wondering if that's related to tumor or my last EMR pushing coccyx bone out of line. Did any of you have this? I may post that question separately.
Rectal adenoma HGD 9/15
3 biopsies tubulovillous w/HGD, partial EMR 12/15
TAE 2/2/16, not clear margins near anal sphincter


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