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Stage IV Signet Cell adenocarcinoma - advice?

Mfox50
Posts: 6
Joined: Nov 2014

My husband Neal (Age 49 yesterday) has just been diagnosed with stage IV signet cell colon cancer. He had surgery removing the right half of the colon, part of the small intestine, and several lymph nodes 2 days ago. His tumor was located just below the cecum. he also has "seeding" of the peritoneum throughout the abdominal cavity.

His surgeon is pursuing genetic testing as he is 3rd generation to have colon cancer. We have 3 beautiful boys (15, 12 and 9) and I am terrified as he has told me the outlook is not good at all as this is a very rare and aggressive type of colon cancer. We will start chemo Friday after thanksgiving... 12 rounds planned over 6-9 months after which we hope to qualify for HIPEC at either Tufts Medical in Boston, which is close to home, or Sloan-Kettering in NY.

I would appreciate any advice or shared experiences/hope with this type of advanced colon cancer.

thank you!

Michelle

 

 

 

lp1964's picture
lp1964
Posts: 1227
Joined: Jun 2013

I am very sorry about your husband. I was diagnosed with rectal cancer at the same age. The good news that the treatment has started. Everybody says the worst part is the diagnisis and not knowing what's gonna hapen. As hard as it is to look at it this way, but cancer is not the end of the world. He is the same guy as he was, he just happens to be ill now. Gather a lot of information about chemo.

Diet, side effects, so you are prepared.

Laz

Mfox50
Posts: 6
Joined: Nov 2014

Thank you... we are very fortunate that he has a very upbeat and fun personality naturally, so he is handling all of this very well.... We've probably laughed as much as we have cried in the past few days. I am counting on his great attitude to get us through this.

Trubrit's picture
Trubrit
Posts: 4216
Joined: Jan 2013

We have members here with the same diagnosis. 

I am sorry that this has happened, and we all know the horror, fear and desperation that comes with the diagnosis. And then, believe it or not, it gets better. Once the initial shock passes, you get into the swing of things, and move along.

We really are a strong bunch of people, and we get along by knowing that we are the ones that will survive (regardless of wether or not we will be). 

Advice - A note book, positive attitude, meditation, happy friends and family and good music have been my constant companions and have helped my along this journey. Yes, there have been dark times, chemo was not fun and radtiation was nothing short of hell on earth, but I'm happy and I wish that for your husband, yourself and your kids. 

Visit us often.

Sue - Trubrit

Mfox50
Posts: 6
Joined: Nov 2014

Thank you Sue for your words of encouragement. I know things will be very hard, but he is SO worth it :)

I will keep you in my prayers also :)

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hi,

My Rick had HIPEC done at Tufts in Boston, with Dr. Martin Goodman. Please send me a PM if you have any questions.

Best regards,

Cynthia

Mfox50
Posts: 6
Joined: Nov 2014

Thank you for your offer of support....

marbleotis's picture
marbleotis
Posts: 690
Joined: Mar 2012

Hi,

I am a stage 3b, signet cell, Dx'ed 1/13/12.  I too was 49! 

I will be NED (No Evidence of Disease) 3 years this January.

I had the same surgery your husband did (right hemi) and 6 months of Oxi / 5 FU chemo.

Do not read any info on the internet for signet cell dated prior to 2007 as much has really improved.

Signet cell is a different shape (signet like a gem) so the cells lay flatter.

It is great that you are getting all this planning done know.  Take a notebook to all Dr visits

There are quite a few of us "signets" on this site.  People will jump on and give you tons of great advise.

It is also ok to be upset, mad, angry or sad.  We are here to help you with all of that as we have all been there.  You might encourage your husabnd to post when he is up to it.

Again - welcome and sorry you are here but you came to the right place.

Mfox50
Posts: 6
Joined: Nov 2014

Thank you for sharing your story... I will keep you in my prayers that you stay disease free :)

 

janderson1964
Posts: 2215
Joined: Oct 2011

I am truly sorry about your husband and that your whole family has to go through this. It sounds like the doctors are doing all the right steps. I am not signet cell but I was diagnosed stage IV over 9 years ago and am still here so i hope the gives you a little comfort. There are so many new treatments on the horizon the name of the game to me now is keep surviving through any means possible until the next treatment is approved.

Mfox50
Posts: 6
Joined: Nov 2014

Thank you for sharing your story .....

i am so glad you are doing well.  keep fighting!

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

for information, cyber hugs and lots of support. I don't have the same form of this awful disease But I know there are so many people here with the information you need.  I have found this to be the greatest place for any questions and tons of support. I will add you and your family To my prayer list.

 

Yolanda

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