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Maybe 3 times will be the charm and I can beat this

MAliceR's picture
MAliceR
Posts: 98
Joined: Mar 2015

Hi All,

A few months ago, my counselor advised to help with my PTSD it might be a good idea to step away from all things that reminded me of cancer for awhile and try to see if I could move forward. I did that. It wasn't completely successful, but I started putting my life after cancer back together, traveled, started volunteering, let my hair grow out and let myself hope. On the advice of my Oncologist, had my port removed. Then it was time for the scans again. I went into it with less trepidation this time, after all I felt good, my oncoligist said my CEA was stready and she was very optimistic for me. Well, the scans showed a different story. It seems there is a small nearly 1/2 inch cancer tumor growing in my colon again. My Dr is shocked, I am beyond shocked and finding it difficult to face again. I have no game plan at this time. I just learned this yesterday. Although I have been resigned since Tuesday when there was "something" on the CT scan. But yesterday's PET scan confirmed it. My Oncologist is refering me to my surgeon and we will meet and discuss surgical options next. She is not convinces chemo is a good plan at this point since I have had 14 months of aggressive chemo over the last 4 1/2 years (8 months the first time and 6 months the second time). She says since it is small and localized (I guess the good news is it hasn't spread outside the colon) she would like to save the chemo for down the line and focus on surgery first.

I guess my questions to you all at this point are:

How many times can they open one up for abdominal surgury. I have been "gutted like a trout" twice over the last 4 1/2 years. Do any of you know of less invasive forms of surgery to remove small tumors in the lower colon?

Have any of you had the surgery without following with chemo?

Lastly I guess. Have any of you taken a drastic step and removed the colon as a preventative method? I am thinking of asking my surgeon if that is a possible way to stop this from attaching my colon. Since it is staying there, maybe if there wasn't anything for it to grow on, it would stop coming back. 

Any other thoughts or ideas? I am guessing I will see the surgeon in the next week or so and I want to be prepared for this conversation. 

3 times is enough. I want this to be the last time and still be standing at the end but I am not sure what the best course of action is at this point? I am feeling overwhelmed and honestly defeated. 

Thanks everyone. 

MAlice

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I do not have experience with this but while reading I remembered someting I've read in several different places. Which is that surgery is the best treatment for cancer and anything else is secondary. I don't know about your idea of having the whole thing removed but I'm curious to see what others say regarding that. All I can say is best of luck. If it's localized that's a good thing. Certain chemos don't necessarily work for everyone and they may have to try a different one. Take care and try not to stress too much, stress is the enemy. I'm sure they'll have some really good ideas for you.

Jan

John23's picture
John23
Posts: 2140
Joined: Jan 2007

 

Re:
"3 times is enough. I want this to be the last time"

Don't we all.......

It doesn't matter what we fight cancer with, if our immune system allows a defective cell to remain, we are subject to cancer cells forming and growing.

I fought my battle using imported herbs that are known to address cancer cells specifically. I took the herbs from 2006 to 2008, and since all traces of cancer were gone, I stopped taking the herbs. The cancer had returned 1.5 years ago in my rectal stump (the section of colon that had been left inside me, stapled closed and connected to the rectum, etc).

I have undergone operations for adhesions three times from 2006 to 2013, each one resecting another amount of intestine. I am now facing a major operation to remove a major tumor in the rectal stump. I should have never quit the herbs in 2008.....

We all "want this to be over", but it goes on and on, regardless. My mother lived 17 years beyond her 3 yr prognosis (lung cancer); it came back and killed her.

If you find it all very depressing, welcome to the "club".

Life is not over until it is over. We fight to survive in any manner we can, and some of us last longer than others..... There is no formula for survival against cancer, we can only ride it out as long as we can and hope for the best.

And hopefully, we find remedies that do more good than harm. I'm lucky, I did not suffer the rigors and side effects of chemicals or radiation, but I'm here, fighting just as you and everyone else is.

It's not fair.... not for anyone. But life isn't fair.... It wasn't intended to be fair for anyone.

Get yourself other opinions from colorectal surgeons that ARE NOT members of the same group or organization. Study your path thoroughly.

The removal of the colon is not a big deal. It will require you to have an Ileostomy if they remove it all. They may or may not remove the small section connected to the rectum, including the rectum, anus, etc... You should insist that the Sphincter muscle is spared, to provide comfort for yourself.

A total resection/removal of all components does not prevent further episodes of cancer development. Cancer can form in the small intestine as well as any other area. Cancer cells travel, and even if those cells do not, it does not prevent cancer from forming elsewhere.

This isn't an easy battle and there presently is no known "cure". All we can do is hope for the best.

Learn about the "alternatives", and as much as you can about the treatments you might be offered. Don't allow fear to guide you; your inner instinct, your intuition and instincts for self-survival will tell you the right path.
Listen to it. "Trust thyself".

My best hopes for you; You will do well!

John

beaumontdave's picture
beaumontdave
Posts: 1114
Joined: Aug 2013

Malice I'm sorry this **** is giving you so much grief, but I've been through the same crap, I had stuff in my liver twice, but now I'm clear for 18 months with no chemo, just hang on to every little thing that points to being free of this scourge, hoping to get to 2 years so I can fix this stupid hernia/muscle wall weakness

beaumontdave's picture
beaumontdave
Posts: 1114
Joined: Aug 2013

My answers are my third surgery may be the charm, I didn't do chemo after the first surgery, cutting it out is always best, you can get this and move on, believe it..............................Dave

beaumontdave's picture
beaumontdave
Posts: 1114
Joined: Aug 2013

Rambling

beaumontdave's picture
beaumontdave
Posts: 1114
Joined: Aug 2013

Always love John"s replies, he's so to the point

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I found the news of a reurrence to be harder in some ways than my original dx.

But to give you a little hope, I recurred four times in 2 1/2 years.  Had five surgeries in that same time frame.  None were laparoscopic, and two were huge.  I spent several months in the hospital all told, and ended up having several sections of colon and small intestine resected, along with nodes, parts of the peritoneum, uterus, ovaries, and a section of rectum.

My last surgery was in 2011, and I've been NED ever since.

Chemo never worked for me, and I think with localized recurrences your best bet is surgery anyway, so I wouldn't feel too bad about not doing chemo. That may be the best bet when things are systemic, but whacking out local stuff is not a bad way to go, imo.

Oh...and I think it's important to get PETs to track this stuff if you go into "surgery only" mode.  Getting better info on what is going on asap allows for better management via surgery

MAliceR's picture
MAliceR
Posts: 98
Joined: Mar 2015

Thanks for your comments everyone. I have lots to think about. I have the sigmoidoscopy on Thursday then will see my surgeon. I feel very much in limbo right now. I know you all know the feeling. I want a plan and don't want my medical team letting this drag on. I feel every moment that we delay it is growing. It has obviously been in there growing for months since my last scan but then I didn't know it. Now that I do I want action. I am very glad I have this place to come where people understand. Thank you.

MAlice

Trubrit's picture
Trubrit
Posts: 5388
Joined: Jan 2013

I can remember, like it was yesterday, hearing those awful words, 'it has returned'.  

I pray that your team jump on it and get you all sorted. 

Remember, you're a strong woman, with allot to live for, and we're travelling along side you all of the way. 

Sue - Trubrit

NewHere's picture
NewHere
Posts: 1291
Joined: Feb 2015

I wish I had something to say which would make it better.

You will beat it again and have many more great trips to show us photos of

 

 

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

I know there is a drug that people take presurgery that supposedly stops any rogue cells from escaping.  It sounds like something like that happened.  That would be my suggestion.  I wish I had taken it. It is truly possible, they just missed one or there is one that didn't die from the chemo and you just need another round.  I also had a recurrence.  That's why they removed my anus and rectum, cells can't form if there isn't anything for them to form on.  I had rectal cancer.  Definitely a distinct possiblity that removing colon would work for you.  In the beginning life with an ostomy is different and depressing but after a while, you just get used to it.  It still has ups and downs but in the end, it's just a small part of who you are.  You would still have your anal muscle which is good because not having it is a seriously whole different ball game.  

I get the overwhelmed and defeated, it's instant stress and anxiety and you can't stop those no matter how hard you try  Step by step, one foot in front of the other.  

danker
Posts: 1274
Joined: Apr 2012

After resection,onc wanted more chemo.  Surgeon said No not necessary.  She(surgeon) was right ! NED ever since, almost 6 years!!

MS2014
Posts: 59
Joined: Feb 2016

Sorry to hear about your recurrence MAliceR

Taking out all the colon is an option for people with Chrons disease or ulcerative Colitis, but I don’t know if doing it just for prevention would be a good idea . I would analyze with your oncologist if this is a good idea. 

All the best MAliceR

 

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