Big Decision

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mariane
Posts: 687
Joined: Sun Sep 13, 2015 6:16 pm

Re: Big Decision

Postby mariane » Tue Feb 23, 2016 3:46 pm

Her cancer infiltrates submucosa if I am reading correctly her pathology report, weisser soccer mom. According to oncological histopathology cancer infiltrating submucosa has potential to metastasize. I would not go for hemicolectomy but I would like to make cancer like her a bit better known and predictable even if it required paying for genetic tests.
And...... I am a bit touched, just a bit :)about stage 4 who extrapolate their bad experiences to others. As a mother of young kids I want to save her my experiences. But I do not think she will ever step into my shoes.
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mariane
Posts: 687
Joined: Sun Sep 13, 2015 6:16 pm

Re: Big Decision

Postby mariane » Tue Feb 23, 2016 4:03 pm

With my chemo brain I think slowly:) I suspect these 2 surgeons want to do hemicolectomy because of her tendency to develop cancerous polyps. It is standard of care to remove colon when a patient has multiple polyps in colon with tendency to become cancerous. They do not suggest hemicolectomy because of this one particular already removed with clear margins cancer.
Last edited by mariane on Tue Feb 23, 2016 4:29 pm, edited 1 time in total.
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: Big Decision

Postby mike1965 » Tue Feb 23, 2016 4:24 pm

Hello Andrea 1976,

Good Luck in your decision. Only you can decide what your risk tolerance is. I know it is a hard decision. I reached my decision for surgery by talking to my family and evaluating the risks. I am having LARS surgery on March 3rd.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Big Decision

Postby KElizabeth » Tue Feb 23, 2016 4:38 pm

I don't have much to add, but I would insist on annual colonoscopy for a couple years. If you're good then you can relax a bit. Please see your regular doc for regular visits and try to relax. Now it's time to live your life.
Best of luck to you!
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 4:39 pm

Thank you both!!! I really appreciate your input. No, I think these 2 surgeons recommends or say surgery is reasonable because of my malignant polyp not because of high expectation for more polyps.
My pathology indicates that I have hight tendency for malignant polyps? Could you please explain it to me? That's what the cancer center doc maybe said: that he is not concern for this polyp as much as for new polyps...

Mike,
I am sure you are making correct decision!!! I have spent doing a lot of time on online research and most agree that sessil polyps require surgery especially in rectal area.

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

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 4:43 pm

And funny - maybe not as funny. But one of the surgeon who recommends surgery. I had a test for Lynch syndrom. The nurse seemed confused and I had a feeling she didn't know exactly what she was doing. The test was MyRiad and today received a call after a month that it wasn't collected properly. My insurance approved it. I am going for genetic testing to cancer center so they will redo it. But will have to wait... They will do it from blood.

mariane
Posts: 687
Joined: Sun Sep 13, 2015 6:16 pm

Re: Big Decision

Postby mariane » Tue Feb 23, 2016 4:45 pm

You had 2 polyps resected. One adenoma benign at this point in cecum and one - this cancer. More than one
Polyp at young age and one already cancerous.
To check cancer for mutations you need tumor tissue.
The nurse called about genetic testing maybe to check genes to rule out familial adenomatous polyposis. There are many types of this disease. I do not have enough data to fully understand your case but you can ask your doctor them. I strongly believe that knowledge is your weapon, my weapon :)
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 5:11 pm

Thank you. I am going for genetic testing to the cancer center tomorrow. Probably better to have it all done in a cancer center with genetic counseling.

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

Re: Big Decision

Postby Lydia666 » Tue Feb 23, 2016 8:35 pm

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.
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 » Tue Feb 23, 2016 8:46 pm

Again, I say don't do the surgery. Also, my bff's hub had 11 polyps removed. 8 rectal and 3 colon (I believe) 3 were precancerous. No surgery, just another colonoscopy in 3 yrs. (from what I recall).

But again, it's your decision.

As far as it being "no big deal", it CAN be a big deal, just because it isn't for someone else, doesn't mean it won't be for you.

Remember, ALL surgeries come with risks!

Please take that into account and not assume it will be just another walk in the park.

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

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 8:51 pm

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.

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

Re: Big Decision

Postby Andrea1976 » Tue Feb 23, 2016 9:06 pm

Lydia,
Thank you for sharing your experience.

Nik,
Thank you! I am scared. I am the skinniest I have ever been. I am trying to make myself eat but it is hard... I am seing cardiologist this week because my blood pressure went up. I just need to chill... But don't know how.

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

Re: Big Decision

Postby zx10guy » Tue Feb 23, 2016 9:55 pm

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.

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

Re: Big Decision

Postby zx10guy » Tue Feb 23, 2016 10:00 pm

Andrea1976 wrote:Nik,
Thank you! I am scared. I am the skinniest I have ever been. I am trying to make myself eat but it is hard... I am seing cardiologist this week because my blood pressure went up. I just need to chill... But don't know how.


I'm not saying this to be mean or to make light of your situation, but instead of going to these doctors seeking something physically wrong with you, I suggest you make an appointment with a psychiatrist. If you really want to be here for your kids, you will get your mental health in order as it appears to me this is the biggest issue you have at the moment threatening your entire well being. Your mental health has a profound effect on your physical health and more importantly your immune system.

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

Re: Big Decision

Postby Lydia666 » Tue Feb 23, 2016 10:47 pm

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.
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.


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