Just can't let it go

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betsydoglover
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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Just can't let it go

Postby betsydoglover » Sun Mar 10, 2019 7:19 pm

I have had multiple scopes where polyps had to be removed "piecemeal" - still here and my GI never thought it was a problem. Since you are so worried (and that is ok), I'd go back to the GI and talk to him/her about your concerns. You should not assume that the actual path examination is "electronic". In fact a board certified pathologist is need in order to study the polyp sample(s). If you are still concerned then find another GI practice, bring path report(s) and consult with one of their docs.

Sorry for your concerns, but it sounds like a good scope to me.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Lee
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Joined: Sun Apr 16, 2006 4:09 pm

Re: Just can't let it go

Postby Lee » Sun Mar 10, 2019 7:48 pm

If you are that concerned, gather all the reports, info, etc and get a 2nd opinion at a major cancer/research hospital. See what do they say, explain your concerns, etc.

I hope you get resolution,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

KimT
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Joined: Sat Feb 20, 2010 8:53 pm

Re: Just can't let it go

Postby KimT » Sun Mar 10, 2019 8:32 pm

Perhaps you should talk to somebody about your anxiety. Lay off google.

It’s a bit rude coming to a board of cancer patients being so upset about a benign polyp. Every one of us would gladly trade places with you. I don’t mind questions from people who don’t have cancer and I would always encourage anyone to advocate for themselves. But a little sensitivity would be nice when you do so. To us, anything outside of a cancer diagnosis is good news. And we would be so thankful. You had a polyp. You got a colonoscopy and it removed a growth before it had a chance to become cancerous. Coming back in two years is a very reasonable course of action. Be thankful and move on.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

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

Re: Just can't let it go

Postby weisssoccermom » Sun Mar 10, 2019 10:27 pm

If it would make you feel better, go back and see the GI or consult with another doc. If you have a GP whom you trust, then talk to him/her. However, I do think that you need to be prepared that maybe you just have a benign polyp. Back in 2008, I was told that I had a polyp removed during my first scope after my surgery/chemo was finished. I admit to being nervous until the pathology report came back. When it came back as BENIGN, I didn't question it or worry that the pathologist didn't get it right or that there was more to it than a simple, benign polyp. Instead of looking for the worst case scenario, take a look at the positive side of this....you had a scope, they found a polyp and found it BEFORE it turned cancerous. That's the ideal, perfect situation.
Question for you though.....and I want you to think about it. Will you be relaxed if you see a GI and he tells you that everything is fine? Will you be able to calm down and move on with your life? You stated in your last post that you can't imagine going two years....what are you going to do when the doctor tells you that you were lucky and had a benign polyp? You'll likely not find another doctor to perform another scope on you in less than 2 years time and I can almost guarantee you that with a diagnosis of a benign polyp, your insurance company won't pay for another scope any earlier. Besides, too often, insurance companies are now saying that since you already have a 'history' of any type of polyps (benign) your next scope is NOT preventative and they almost certainly won't pay for it as though it is a preventative procedure.
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

del5del
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Joined: Fri Mar 08, 2019 9:53 am

Re: Just can't let it go

Postby del5del » Sun Mar 10, 2019 11:52 pm

weisssoccermom wrote:If it would make you feel better, go back and see the GI or consult with another doc. If you have a GP whom you trust, then talk to him/her. However, I do think that you need to be prepared that maybe you just have a benign polyp. Back in 2008, I was told that I had a polyp removed during my first scope after my surgery/chemo was finished. I admit to being nervous until the pathology report came back. When it came back as BENIGN, I didn't question it or worry that the pathologist didn't get it right or that there was more to it than a simple, benign polyp. Instead of looking for the worst case scenario, take a look at the positive side of this....you had a scope, they found a polyp and found it BEFORE it turned cancerous. That's the ideal, perfect situation.
Question for you though.....and I want you to think about it. Will you be relaxed if you see a GI and he tells you that everything is fine? Will you be able to calm down and move on with your life? You stated in your last post that you can't imagine going two years....what are you going to do when the doctor tells you that you were lucky and had a benign polyp? You'll likely not find another doctor to perform another scope on you in less than 2 years time and I can almost guarantee you that with a diagnosis of a benign polyp, your insurance company won't pay for another scope any earlier. Besides, too often, insurance companies are now saying that since you already have a 'history' of any type of polyps (benign) your next scope is NOT preventative and they almost certainly won't pay for it as though it is a preventative procedure.


Thank you for your kindness and advice. And those are good questions that I do need to think about. I guess I should make an appointment with my GI and just tell him of my concerns...ask him about the pathology (level of dysplasia, carcinoma in situ, etc.) and, also, how certain he is that the resection was complete since the polyp was so large, tubulovillous, on the right side, and he had to piecemeal it. Those are the 4 big things I've consistently read are not good signs at all for the future. I do remember when he called that he mentioned something about the followup to "make sure nothing was left behind" and something about "the clock would start all over". Not positive I understand that completely, but maybe I do. About the two years, I just meant I can't imagine going two years like this, making myself sick, without at least somehow TRYING to get my questions answered and address my concerns. Again, thank you. And I sincerely apologize to anyone I may have offended in any way. That was never my intention.

weisssoccermom
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Re: Just can't let it go

Postby weisssoccermom » Mon Mar 11, 2019 12:46 am

Please don't take this as being offensive but one thing that seems to be coming through loud and clear in your posts is that you seem to not believe that a polyp can't just be benign....no cancer in situ, NO level of dysplasia, no cancer.

Please understand that there are people everyday who have polyp(s) removed that are simply BENIGN. There is no dysplasia (not precancerous), no cancer cells.....just some innocent, benign polyp. Also, not all polyps turn into cancer. Some are just annoying growths but no reputable doctor is going to leave on in a patient just because it doesn't look suspicious.

I may be over reading your posts but they come across as though you believe that the pathology should show something other than a simple, benign polyp. Again, not meaning to be offensive but that's my take. I hope that you can find some peace because it MAY be that, in the future, you have another polyp....and that polyp will hopefully be benign. If, at the next scope in 2 years, the doctor doesn't find something, he/she will likely recommend going 3 years until the next scope....and if that one is also clear.....then you would be on the 5 year plan. You are going to have to trust the doctors....both the GI and the pathologist. I hope that you can find that trust/peace.
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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Maggie Nell
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Re: Just can't let it go

Postby Maggie Nell » Mon Mar 11, 2019 1:44 am

del5del wrote:
Thank you for your kindness and advice. And those are good questions that I do need to think about. I guess I should make an appointment with my GI and just tell him of my concerns...ask him about the pathology (level of dysplasia, carcinoma in situ, etc.) and, also, how certain he is that the resection was complete since the polyp was so large, tubulovillous, on the right side, and he had to piecemeal it. Those are the 4 big things I've consistently read are not good signs at all for the future. I do remember when he called that he mentioned something about the followup to "make sure nothing was left behind" and something about "the clock would start all over". .........



The thing is your GI deals with thousands of biopsies every year and he has made a couple of remarks that your mind has latched onto and
you don't share in that complacency. Quite naturally you want to receive confirmation that nothing has been left behind and you're not sitting
on a ticking clock NOW. Unfortunately, the GI has planted the seeds of anxiety and just about everyone who comes to this forum can
tell stories about jerks with medical degrees; being fobbed off and misdiagnosed for years before getting a stage 4 diagnosis.

Absolutely schedule an appointment with your GI and get him to clarify the comments he has made and tell him that you have been
bothered by an element of vagueness in his reporting style. Give him some feedback as "make sure nothing was left behind" is not
good enough - that has planted a seed of doubt.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

del5del
Posts: 7
Joined: Fri Mar 08, 2019 9:53 am

Re: Just can't let it go

Postby del5del » Mon Mar 11, 2019 8:55 am

weisssoccermom wrote:Please don't take this as being offensive but one thing that seems to be coming through loud and clear in your posts is that you seem to not believe that a polyp can't just be benign....no cancer in situ, NO level of dysplasia, no cancerce.



Absolutely no offense taken. You’ve hit the nail on the head! It’s this specific type of polyp and its size and the fact that GI said it’s probably been there 5+ years, which put me at 44-45 years old. The info/statistics on large tubulovillous polyps, esp on the right side, are not encouraging and seem to predict future problems. I’ve read it over and over and can’t seem to find any contradiction anywhere on that....and now I can’t “unread” that.

del5del
Posts: 7
Joined: Fri Mar 08, 2019 9:53 am

Re: Just can't let it go

Postby del5del » Mon Mar 11, 2019 9:02 am

Maggie Nell wrote:
del5del wrote:
Thank you for your kindness and advice. And those are good questions that I do need to think about. I guess I should make an appointment with my GI and just tell him of my concerns...ask him about the pathology (level of dysplasia, carcinoma in situ, etc.) and, also, how certain he is that the resection was complete since the polyp was so large, tubulovillous, on the right side, and he had to piecemeal it. Those are the 4 big things I've consistently read are not good signs at all for the future. I do remember when he called that he mentioned something about the followup to "make sure nothing was left behind" and something about "the clock would start all over". .........



The thing is your GI deals with thousands of biopsies every year and he has made a couple of remarks that your mind has latched onto and
you don't share in that complacency. Quite naturally you want to receive confirmation that nothing has been left behind and you're not sitting
on a ticking clock NOW. Unfortunately, the GI has planted the seeds of anxiety and just about everyone who comes to this forum can
tell stories about jerks with medical degrees; being fobbed off and misdiagnosed for years before getting a stage 4 diagnosis.

Absolutely schedule an appointment with your GI and get him to clarify the comments he has made and tell him that you have been
bothered by an element of vagueness in his reporting style. Give him some feedback as "make sure nothing was left behind" is not
good enough - that has planted a seed of doubt.


This is exactly what has happened. And also what I’ve read about this particular polyp. So now the seed is planted for sure. And I need to do exactly what you’ve suggested. Thank you.

Ron50
Posts: 686
Joined: Fri Feb 10, 2006 7:04 pm

Re: Just can't let it go

Postby Ron50 » Mon Mar 11, 2019 4:08 pm

Hi Del,
I am a survivor of stage 3c colon cancer. This Jan I reached year 21. I have had around 14 scopes over that period and have had polyps remove during half of them. My last scope was nearly two years ago. They removed four tubular adenomas between 4 and 11 mm. They are not the easiest of polyps to remove as most of them don't grow on a stalk. My largest looked like a caterpillar sitting on my colon wall. The gi removed it but had to staple up the hole to stop the bleeding. The were all biopsied and though the biggest one showed mild dysplasia , none were cancerous. Many over the years have shown some degree of dysplasia none were deemed cancerous. My history would seem to indicate that the removal process deals with the problem. The only change to my regime is I am back to two yearly scopes. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Pyro
Posts: 197
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Just can't let it go

Postby Pyro » Mon Mar 11, 2019 7:58 pm

Trying wrote:Wish i was in your shoes. Im only 39 stage 4. We are all wishing for news as good as yours. Wishing you the best


Well put.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda, CEA @30(3), shit still here

boxhill
Posts: 216
Joined: Fri Apr 06, 2018 11:40 am

Re: Just can't let it go

Postby boxhill » Tue Mar 12, 2019 1:06 pm

Why don't you simply call them up and ask for a pathology review? Find another facility such as a large hospital and have your samples sent there. If you are this distraught about it, pay for it yourself if necessary.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda

del5del
Posts: 7
Joined: Fri Mar 08, 2019 9:53 am

Re: Just can't let it go

Postby del5del » Tue Mar 12, 2019 5:13 pm

boxhill wrote:Why don't you simply call them up and ask for a pathology review? Find another facility such as a large hospital and have your samples sent there. If you are this distraught about it, pay for it yourself if necessary.


It’s been crazy. I have been waiting since Friday for the nurse to call me back so that I can get a followup appt sooner than 2 months. I’ve left a message and even the appt desk has left her two messages asking to get me in sooner. No return phone call as of the end of the third business day. I called the (pathology lab today and they were extremely understanding and disappointed that I had not gotten a call returned by now or had a followup appt. But they did tell me how to go about getting another doctor to have this pathologist give them a better interpretation of the specimen or to send it to another doctor or lab. Don’t get me wrong, I know how busy the nurses are and I truly understand that and RESPECT that. I’m also busy with a full time job in the legal field and 3 kids...and concerned and just want a followup appt, which I will pay for instead of asking them to just call me and discuss it “for free.” Nurse has me roadblocked though for now. As a positive, my insurance company has been fabulous. Willing to get me a second opinion or to make a phone call to the doctor’s office to try to get me in sooner but they will also have to go through the same nurse. At this point I may see if my GP can work with the pathologist and get more detail. I don’t know... Thank you for your kindness.

Trying
Posts: 159
Joined: Sun May 13, 2018 10:11 pm

Re: Just can't let it go

Postby Trying » Tue Mar 12, 2019 9:02 pm

KimT wrote:Perhaps you should talk to somebody about your anxiety. Lay off google.

It’s a bit rude coming to a board of cancer patients being so upset about a benign polyp. Every one of us would gladly trade places with you. I don’t mind questions from people who don’t have cancer and I would always encourage anyone to advocate for themselves. But a little sensitivity would be nice when you do so. To us, anything outside of a cancer diagnosis is good news. And we would be so thankful. You had a polyp. You got a colonoscopy and it removed a growth before it had a chance to become cancerous. Coming back in two years is a very reasonable course of action. Be thankful and move on.

Well put. It is a bit rude
38 yr old single mom of almost 2 yr old.
Colon cancer stage IV 10 liver mets and peri metApril 2018
Folfox as of June 2018
Down to 2 mets in liver dec 2018.

boxhill
Posts: 216
Joined: Fri Apr 06, 2018 11:40 am

Re: Just can't let it go

Postby boxhill » Wed Mar 13, 2019 8:37 am

del5del, you really need to calm down. People who have actually been diagnosed with actual cancer don't get appointments that fast.

You don't need a followup appointment. You need to have your pathological samples sent to another lab, period. A second opinion is often useful. A followup appt with the same dr will tell you ZILCH. Another set of eyes on your samples will tell you something: either they agree with the first pathologist, or they don't. Get that done, and in the mean time CALM DOWN. Nothing is going to happen to you in a few weeks, or even a few months.

You know what would have happened if you actually HAD metastatic cancer? After surgery--which in most cases would be scheduled weeks out, unless you had an ebergency blockage as I did--there would be a period of likely SIX WEEKS before you started chemo, so that you could heal up. And you are hysterical because you can't get an immediate appt with a dr who has already conveyed the pathology report from a single POLYP that apparently wasn't even pre-cancerous?

I am all for people becoming educated about their symptoms and disease. But it has to be tempered with some common sense.

And by the way, if you unfortunately DO develop CRC at some future point, you are going to have to learn FAST that you have get used to living with uncertainty that NO ONE can fix for you, not the world's best scientists or surgeons or oncologists.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda


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