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 » Tue Feb 23, 2016 10:56 pm

Andrea1976 wrote:Funny, I was a national miss competitor in my country and model for many years. I don't really care if I will have scars. I have a big scar on my forehead that many people comment on. They are like: when are you going to see a surgeon to fix it etc. I kind of like my scar - it is there for a reason - result of my life:-)

I don't care how I look like or feel. I just want to be here for my kids.

I have the best 14 year old 6'1 girl who is a National volleyball Champion and super smart. And I have a giant son who has learning disabilities and might be gay. But he is so sensitive and loving!!! I just want to be here for them. I haven't had luck with guys in my life. Well, my dad was an alcoholic... If you don't have hight standarts growing up - it's hard to achieve them. But this is not about me - as I said I will fight for every day I can be here with my kids.


I understand that you might not care about scars now because I said the same thing at the beginning, just do whatever, I need to be alive, and of course , that's the goal, but as I go thru treatments and such, i realize I do care about all the details. When I looked at the my belly and didn't see the surgery, it was a great feeling. Plus done this way, you recover faster. People who were opened up the classical way had a much harder time than I did. Anyway, go with what your heart tells you. Nobody on here can decide for you.
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.

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

Re: Big Decision

Postby zx10guy » Wed Feb 24, 2016 2:37 am

Lydia666 wrote:
zx10guy wrote:
Lydia666 wrote:Since i did have the surgery, I would recommend having it. I honestly don't think it's a big deal, particularly because u won't need a stoma. It takes about 2 weeks to recover and feel normal and only the first few days are really uncomfortable. When i looked at my belly, i could not tell i had the surgery, there is only a tiny cut at the bikini line . I know surgery of any kind is no fun, but to not have regrets , go for it. I don't think u have node involvement or anything, i just think get that thing out- it was big after all, like 5 cm, no? To be fair, i also think monitoring makes sense.


With all due respects, saying this surgery is no big deal is just plain ignorant. Comparing your situation with Andrea's is not even comparable. You had no choice in the matter with a T3 tumor. So of course it's easy to say go do it.


wow! you are something man! Surgery was not bad for me - I was just saying, if she decides to do it, she does not need to be terrified of it. It is the safest choice after all, but it's probably too invasive for her case, I don't know. This is a forum, not a cancer center, it is only my opinion, not my medical advice. She has 4 colorectal surgeons to choose from. You, however, need to keep opinions to yourself if you start insulting people. It's not cool, dude. I am talking about surgery from experience, don't tell me how I feel about it and calling me ignorant. I went thru it, i know what I am talking about.


I call it how I see it. Just plain ignorant comments. And if you feel it's insulting then that's your hang up. For you to minimize any surgical procedure even a laparoscopic procedure just shows how out of touch you are. And I went through a colon resection myself so I too know what I'm talking about here. Heck I was out of the hospital after 2 days and was driving and running errands as soon as I got home. But I wouldn't be so nonchalant and tell someone else because I pretty much breezed through my surgical procedure that anyone that feels compelled should do it based off of my experience.

I also find it funny you claim not give medical advice yet go about telling her it's the safest choice. :roll:

And you're right. This is a forum and I have every right as you do to voice my opinions. If you don't like reading my comments, you're welcome to ignore them. It won't hurt my feelings at all.

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

Re: Big Decision

Postby Lydia666 » Wed Feb 24, 2016 8:02 am

zx10guy wrote:
Lydia666 wrote:
zx10guy wrote:
With all due respects, saying this surgery is no big deal is just plain ignorant. Comparing your situation with Andrea's is not even comparable. You had no choice in the matter with a T3 tumor. So of course it's easy to say go do it.


wow! you are something man! Surgery was not bad for me - I was just saying, if she decides to do it, she does not need to be terrified of it. It is the safest choice after all, but it's probably too invasive for her case, I don't know. This is a forum, not a cancer center, it is only my opinion, not my medical advice. She has 4 colorectal surgeons to choose from. You, however, need to keep opinions to yourself if you start insulting people. It's not cool, dude. I am talking about surgery from experience, don't tell me how I feel about it and calling me ignorant. I went thru it, i know what I am talking about.


I call it how I see it. Just plain ignorant comments. And if you feel it's insulting then that's your hang up. For you to minimize any surgical procedure even a laparoscopic procedure just shows how out of touch you are. And I went through a colon resection myself so I too know what I'm talking about here. Heck I was out of the hospital after 2 days and was driving and running errands as soon as I got home. But I wouldn't be so nonchalant and tell someone else because I pretty much breezed through my surgical procedure that anyone that feels compelled should do it based off of my experience.

I also find it funny you claim not give medical advice yet go about telling her it's the safest choice. :roll:

And you're right. This is a forum and I have every right as you do to voice my opinions. If you don't like reading my comments, you're welcome to ignore them. It won't hurt my feelings at all.

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.
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 8:44 am

I really appreciate both of your inputs. I was diagnosed only last month so I am still dealing with the shock. I guess I am blessed by being diagnosed early. But it's also difficult because 2 of the surgeons are advising just to wait and see. I would understand if I have "in situ". But my cancer did invated the submucusa of the head of the polyp. From doing research online many patience do well from just polyctomy. But there are risks as well. Unless the surgery and checking the lymph nodes I will not know for sure. But even if I have the surgery - cancer can spread. It's not very likely but possible. But from my understanding the most likely invasion is to the lymph nodes 1st.
I wish there were people here who had a similar situation. I found a women who had 1.5 mm Pedunculate polyp and ended up stage 4. But I wonder how could they tell her clear margins if there wasn't enough length to the stalk. I have came across somewhere online that small malignant polyps are more aggressive?

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

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 8:58 am

I am trying to do a research. For example this: http://www.ncbi.nlm.nih.gov/m/pubmed/6741907/

Wish I can find more updated studies.

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Big Decision

Postby ozziej » Wed Feb 24, 2016 9:14 am

Hi Andrea
If you read my signature you will see that my situation was very similar to yours. My polyp was removed via EMR but found to have penetrated the submucosa to T2 level, moderately differentiated, no vascular invasion. I was offered watch and wait or ULAR. I think it's important to differentiate watch and wait for Stage 1 as opposed to more advanced stages where watch and wait follows a complete response to chemo/radiation. If I had been offered treatment to irradiate the field I would have been more likely to choose watch and wait. However as this wasn't an option I chose ULAR rather than live with the uncertainty. There is no perfect choice and all options carry risks and unwanted (and often permanent) side effects.
At the risk of stirring the pot even more I am going to say this: Lydia, your comment about LAR not being as bad as having your breasts removed is deeply offensive. You may have been lucky to escape LAR syndrome but many have not. I would gladly substitute my breasts for an intact rectum.
Andrea, as I said in a previous post to you, making my choice was highly stressful and I very much benefited from talking to a counsellor and taking a low dose anti anxiety medication. Maybe this could help you too while making this very difficult decision.
Best wishes
Jan
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

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

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 9:27 am

Hi Jan,

Thanks. What type of polyp did you have? I did find out from my research that in case of rectal polyp and especially if you did not have Pedunculate surgery is highly indicated. I would not choose wait approach in your case. My case is unfortunately not as clear. But I agree with you that it's going to be on me.

Nik Colon

Re: Big Decision

Postby Nik Colon » Wed Feb 24, 2016 9:29 am

Have you spoken to your doc about the cancer and stage again to double check? I know this was mentioned on the other thread. If not, please get clarification from your doc about everything. Exact stage with how the stage was determined, etc. Have him/her draw it out if you can.

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

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 9:45 am

Hi Nik,

Yes, I did ask. Especially the colorectal surgeon with 40 years experience who says absolutely no to surgery. He draw a picture and said I am stage T1 because of submucusa involvement. It's considered early stage cancers but still stage 1. He says there is no way my polyp could metastise If the stslk was completely clear. I asked him why would these 2 surgeons want to do surgery. He gave me a hug and said that they will take my $$$. I asked him if he can please do the surgery and he refused. He gave me names of some professors his age who are also colorectal surgeons all over the US. And recommended to try to see them. One is in UPENN etc. He wasn't that excited about MD Anderson in Houston. Not sure why...

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

Re: Big Decision

Postby Lydia666 » Wed Feb 24, 2016 10:20 am

Andrea1976 wrote:Hi Nik,

Yes, I did ask. Especially the colorectal surgeon with 40 years experience who says absolutely no to surgery. He draw a picture and said I am stage T1 because of submucusa involvement. It's considered early stage cancers but still stage 1. He says there is no way my polyp could metastise If the stslk was completely clear. I asked him why would these 2 surgeons want to do surgery. He gave me a hug and said that they will take my $$$. I asked him if he can please do the surgery and he refused. He gave me names of some professors his age who are also colorectal surgeons all over the US. And recommended to try to see them. One is in UPENN etc. He wasn't that excited about MD Anderson in Houston. Not sure why...

Sounds like you have your answer, Andrea.
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 10:23 am

He is very nice. But can I trust him with my life?

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

Re: Big Decision

Postby Lydia666 » Wed Feb 24, 2016 10:26 am

ozziej wrote:Hi Andrea
If you read my signature you will see that my situation was very similar to yours. My polyp was removed via EMR but found to have penetrated the submucosa to T2 level, moderately differentiated, no vascular invasion. I was offered watch and wait or ULAR. I think it's important to differentiate watch and wait for Stage 1 as opposed to more advanced stages where watch and wait follows a complete response to chemo/radiation. If I had been offered treatment to irradiate the field I would have been more likely to choose watch and wait. However as this wasn't an option I chose ULAR rather than live with the uncertainty. There is no perfect choice and all options carry risks and unwanted (and often permanent) side effects.
At the risk of stirring the pot even more I am going to say this: Lydia, your comment about LAR not being as bad as having your breasts removed is deeply offensive. You may have been lucky to escape LAR syndrome but many have not. I would gladly substitute my breasts for an intact rectum.
Andrea, as I said in a previous post to you, making my choice was highly stressful and I very much benefited from talking to a counsellor and taking a low dose anti anxiety medication. Maybe this could help you too while making this very difficult decision.
Best wishes
Jan

Hi Jan, deeply offensive? Really? Have u had your breasts taken out? Complications can arise from any surgery, sorry you had problems. I still feel , for me, having the breasts removed to be highly invasive , way worse than a piece of intestine.

Anyway, I don't want this to turn into, what feels like, a political debate. I did not mean to offend anybody. I apologize to you. What i know is the women i know who had their breasts removed and reconstructed, have told me it sucks, it's painful and takes a long time to feel normal.
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.

Nik Colon

Re: Big Decision

Postby Nik Colon » Wed Feb 24, 2016 10:32 am

Andrea1976 wrote:He is very nice. But can I trust him with my life?

You SHOULD, BUTT.....it's up to you to decide. Many here have given their opinion, but ultimately it's up to you no matter how many answers you get.

You do seem to really want the surgery, so if that's what you want, then there is nothing more I can say.

Again, best wishes.

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

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 10:36 am

Lydia,
Thanks. I can see your point. I don't think you were trying to create any hard feelings. I am the opposite - I would have my breast cut off with no problems. Maybe get new ones later:-)

Nik,

Thank you!!! Maybe I just need the surgery to move on... Not sure but Thank you!!!

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

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 10:39 am

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.


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