Big Decision

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Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Big Decision

Postby Lydia666 » Wed Feb 24, 2016 11:11 am

I too think you should trust your doc. They are the ones that studied years and years on this and have seen cases like yours. One doc told me that what we find online are likely studies that did not make it to official journals to which we don't have access. Basically online you coukd diagnose yourself with ebola if you search long enough. Nobody on here has your answer. I would trust the doctor who seems knowledgeable and go with your heart too. If u do end up having surgery and have no complications, i really think it's not too bad. But if you don't need it, then that's even better.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 11:19 am

Hi Lydia,
Thanks! You are correct. I have probably spent hours and hours researching and it's probably all wrong...

Happy to hear that you have recovered fast and with no complications!!!

alphagam
Posts: 203
Joined: Tue Jun 14, 2011 10:48 am
Facebook Username: Kathy Maine Ruess

Re: Big Decision

Postby alphagam » Wed Feb 24, 2016 12:16 pm

Andrea,

What you want is 100% guarantee and that won't happen. You are unbelievably fortunate to have found your cancer this early. Almost 6 years down the road from my unbelievable outcome, I have learned to relax and be thankful. One of my daughter's, 19 at the time, diagnosed herself with Prostate Cancer thanks to Dr Google. I'm still quite sure that wasn't her problem !

Please let it go before you drive yourself literally crazy and enjoy your life!!
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years

zx10guy
Posts: 232
Joined: Mon Jan 07, 2013 12:54 pm

Re: Big Decision

Postby zx10guy » Wed Feb 24, 2016 3:06 pm

Lydia666 wrote:You can certainly voice your opinions but when you start insulting people, you cross the line. If someone takes medical advice from forums instead of their docs, then that's a poor judgment on their part. I don't know what your beef is? Plus how are u so sure she does not need surgery?? Telling her she has mental health problems???There are so many details in a case, only her docs know. What i know is my experience with LAR and it was not too bad and apparently neither was yours. So if she does need it, it's not the end of the world, it's not like having your breasts removed , for example. anyway, I suggest you take it easy with the insults, this is not the place for it. You just sound bitter.


No not bitter. Just calling out foolish statements. You've made my case with the bolded statement above and this gem below. I don't need to say anything more.

I still feel , for me, having the breasts removed to be highly invasive , way worse than a piece of intestine.

zx10guy
Posts: 232
Joined: Mon Jan 07, 2013 12:54 pm

Re: Big Decision

Postby zx10guy » Wed Feb 24, 2016 3:16 pm

Andrea1976 wrote:Jan amd ZX guy, I really appreciate you taking your time to respond. I see your point as well. Everybody has their point. I am trying to convince myself that removing part of my colon is no big deal. I was told I will not have a LAR syndrom and my chances of a bag are very low since we are dealing with descending colon.


Don't convince yourself. You have someone with years of experience you're consulting which has said no surgery. He gave you a very good explanation of your situation and why you don't need it. Surgery is not to be taken lightly no matter what the procedure is. People have developed complications during surgery which are not even related to the actual reason for the surgery. People have died from just the anesthesia. I would say the risks of having complications from the surgery are higher than the chances of you having recurrence or metastasis based on what you've posted so far. Of course in life there's no guarantee.

My suggestion for you to see a psychiatrist was not meant to be condescending contrary to what the resident surgery expert is implying. You've stated you already lost 10 lbs. The connection between your mental and physical health is very well established. You don't want your immune system to start breaking down due to being stressed out. And if you're following any of the discussions about immuno therapies, you'll see why having a healthy immune system is extremely important.

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Big Decision

Postby Lydia666 » Wed Feb 24, 2016 6:07 pm

zx10guy wrote:
Lydia666 wrote:You can certainly voice your opinions but when you start insulting people, you cross the line. If someone takes medical advice from forums instead of their docs, then that's a poor judgment on their part. I don't know what your beef is? Plus how are u so sure she does not need surgery?? Telling her she has mental health problems???There are so many details in a case, only her docs know. What i know is my experience with LAR and it was not too bad and apparently neither was yours. So if she does need it, it's not the end of the world, it's not like having your breasts removed , for example. anyway, I suggest you take it easy with the insults, this is not the place for it. You just sound bitter.


No not bitter. Just calling out foolish statements. You've made my case with the bolded statement above and this gem below. I don't need to say anything more.

I still feel , for me, having the breasts removed to be highly invasive , way worse than a piece of intestine.


Wow! i am not sure who needs to check a psychiatrist.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 6:19 pm

ZXguy: thank you. I see your point and agree. But than I get to the panic mode and can't process. The worse is the feeling that if I do the surgery I could win this battle. If I don't do it and cancer will spread - than I will regret it.

I agree with you that I probably need a psychiatric help. I spoke to a counselor at a Cancer center. She was nice but I am like: you don't know how we feel - you don't have Cancer.... Again thank you for taking the time with me. You have a lot on your plate as well. And here you are spending time responding to my never ending dilema.

Lydia:
You are really nice to give me your opinions and experience. Looking at your situation - it's hard but you are fighting!!!

I

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 6:23 pm

Update: had genetic testing meeting with counselor at cancer center. I have had 3 patologii dep to review my polyp slides. The csmcer center also ran some tests from the slides and 95% I don't have Lynch based on this testing. We are still going formal testing along with a test for a new gene colon / breast cancer. I am happy that my kids don't have to deal with Lynch / hopefully.

Also I was told that my polyp would be tested if I need treatment. Otherwise not? That's my understanding so far.

weisssoccermom
Posts: 5976
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Big Decision

Postby weisssoccermom » Wed Feb 24, 2016 7:27 pm

Andrea....I don't think anyone can tell you what you need to do BUT...now you're saying that the tumor invaded the submucosa of the head of the polyp. I am certainly not purporting to be an expert in a polyp BUT....if the polyp's head has a submucosal layer, that is NOT the same as the submucosal layer of the intestine. Honestly, I think you need to SIT DOWN WITH YOUR DOCTOR AND GET THIS STRAIGHTENED OUT. Did cancer cells even reach the intestinal wall? According to an earlier thread, you stated quite clearly that the entire stalk, based on the biopsy report, stated that there were NO cancer cells in the stalk...none.

IF cancer cells had reached any level of the intestinal wall, I can't fathom even ONE, much less TWO surgeons opting for just surveillance. Yet, you have TWO surgeons who are advising against surgery. These are doctors...they're not going to advise you to just undergo monitoring if cancer cells even reached the intestinal wall. Let's clear up a few things. I pointed out earlier that you were confused what an LAR meant...and no, you wouldn't need that type of surgery since you aren't dealing with the rectum. Secondly, the 'wait and see' approach that some keep referencing is for RECTAL cancer AFTER a complete clinical response to radiation. What you're dealing with has nothing to do with that. Now, it may be similar but any studies that are referenced in relation to the 'wait and see' approach are for rectal cancer after treatment.

Do you have a good GP that you trust and have a good relationship with? I ask because you need to sit down with someone you trust and know and have him/her explain exactly where cancerous cells were found, whether or not the stalk was indeed clear, and what, if any, cancer cells were found at the intestinal wall site (where the stalk attached to the intestinal wall.) Think of this analogy. Your polyp is like a tree. Based on what you have understood and based on some of the pathology reports the head of the polyp contained cancer cells (the big leafy part of the tree) and there were NO cancer cells in the stalk (trunk of the tree). You need to ascertain whether what you have stated about where the cancer was and wasn't is correct. Honestly, it sounds as though there is some confusion as to what the doctors are telling you. You should also ask WHY two surgeons wouldn't recommend surgery and two would? WHY the difference. Cancer treatment is generally undertaken under 'standard of care' steps.

One member posted that there is no 100% guarantee and I hope you understand that fact. My suggestion to you is to relax a little, stop overthinking this, talk to a doctor whom you already have a relationship with and quit getting more and more opinions. You're only going to drive yourself crazy. Think about this, Andrea. Just because a treatment exists doesn't mean your situation necessarily dictates that you have it nor that you need 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

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 7:49 pm

Thank you for taking time in detail to help me.

This will explain a lot:

http://cdn.intechopen.com/pdfs-wm/42027.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780260/


http://www.cancernetwork.com/colorectal ... tal-cancer

My understanding is that I have t1 level Haggit1 - invasion of cancer to the head of the polyp. Yes, stalk is completely free of anything. As you can see on the photo of Pedunculate polyp there is a submucusa in the polyp. Haggit level 1 is invasive cancer. It is no submucusa of the colon. But it is connected. In my case there is no cancer in the neck or stalk. Also my pathology says no lymphatic involvment. So most studies show less than 1% chance of lymph nodes involvment. But there are some that shows 3-6%.

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 7:53 pm

Please click on the picture of polyp and it will explain it.

http://www.medscape.com/viewarticle/703573_3

weisssoccermom
Posts: 5976
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Big Decision

Postby weisssoccermom » Wed Feb 24, 2016 8:44 pm

Andrea, if you read something in one of the links you posted, then I would be very surprised why any doctor would want to do surgery.

Haggitt grades 1-3 breach the
submucosa within the polyp, and they are confined to the head, neck and stalk of the polyp
respectively. Only Haggitt 4 lesions invade past the stalk into the submucosa of the wall.
Most authors would agree that only Haggit 4 lesions require further treatment. If adequately
excised, Haggitt 0-3 lesions have a risk of recurrence (<1%) which is lower than the predict‐
ed mortality of an oncological resection.[15,16] Conversely, for level 4 lessions, Haggitt re‐


Ok, so there is a submucosa WITHIN the polyp but that is NOT the same as the submucosa of the intestinal wall. The definition of a STAGE I (for colorectal cancer) is this:

T1N0M0 or T2N0M0

with the "T" representing the depth of tumor invasion INTO THE COLON WALL. Cancer cells were only contained in the head of the polyp and didn't reach the SUBMUCOSA of the COLON WALL. In other words, you didn't have either a T1 or T2 depth tumor. IF you do, then something is missing or you are misunderstanding something.

If there were no cancer cells within the stalk, that means no cancer was detected and if no cancer was detected anywhere in the stalk, it wasn't in the cancer wall where the stalk attached to the colon.

Again, read above....these Haggitt 0-3 lesions, which it does seem that yours is a ONE, have a risk of recurrence that is less than 1%. Remember that there are risks to the surgery, anesthesia and recovery. Also remembers that there is a RISK that the surgery will have a lasting impact on you.

Your imaging tests don't show any suspect lymph nodes so why are you worried about that? Remember that your lymph nodes are located OUTSIDE the colon with lymphatic vessels extending into the colon itself. Again, there is no evidence, based on the pathology report, that any cancer was detected even near the colon wall.
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

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 9:05 pm

Thanks again :lol:

Pedunculate polyp are "special" because of the stalk. I am very lucky. If my polyp wasn't pendunculate / I would already had a surgery.

Unfortunately t1 Pedunculate is stage 1 colon cancer - even it does not directly touch the colon wall. The idea is that once it's invasive and it's in the head where submucosa is - than it could spread.

There were 2 people her that I have read with Pedunculated polyp and it did spread.

1st person had very small like 1.5 mm. Can't belive the size. It was removed during colonoscopy and was told clear margins. Which doesn't make sense since clear margins required are min 2 mm. She did end up with liver Mets.
2nd person had neck invasion and not sure about other pathology features and he ended up with lung Mets 5 years later.

Cancer is scary - we don't know how it will act.

http://www.nccn.org/patients/guidelines ... ex.html#38
Here is an explanation of the staging.

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 9:09 pm

It's amazing that you are 9 years out!!! So happy for you!!! When did you start thinking about cancer on daily basis? I feel like my life is over and it will never be the same.

weisssoccermom
Posts: 5976
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Big Decision

Postby weisssoccermom » Wed Feb 24, 2016 9:20 pm

Do you mean when did I STOP thinking about cancer on a daily basis. That takes time. Look, I didn't do the standard of care....kept hearing over and over and over again how what I was doing was 'wrong', etc. and yet, here I am. NO recurrence, no issues. Now, don't get me wrong, I'm not saying that everyone should go against the standard of care....just that you can't go and be getting all stressed out about something the way you are.

I don't know where you come up with the fact that you have a T1 tumor. Again, read the definition of a T1 infiltration into the COLON WALL. If your tumor never reached the colon wall, how could it be a T1. This Haggit1, T1 and Stage 1 are all different terms...they are not interchangeable.

I'm not trying to be rude here, but you've asked for opinions, we've given them to you and you still don't really like them. Decide what you want to do and then just do it. If you want to do the surgery....then just do it, make that decision and be done with 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


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