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Having A Rough Day, Could Use Some Optimism

TheLadySkye's picture
TheLadySkye
Posts: 195
Joined: Oct 2013

Hi folks.  I hope it's okay that I'm taking my rough day to the forums here.  I'm having a day filled with fear and anxiety that is spiraling and I don't quite seem to know what to do about it and I was hopeful you lovelies could perhaps help?

 

As a quick recap, I was diagnosed with adenocarcinoma of the small intestine in August.  Not a lot of applicable information because it's so rare, but my doctors are treating it similar to colon cancer.  I believe they finally decided on Stage 2b, the designations being T4N0M0.  I had small bowel resection at the end of August and my surgeon confirmed he was able to do everything he wanted to and saw no evidence of invasion to the blood vessels, nerves, or lymph nodes.  My post-surgical CT showed NED. I started FOLFOX chemotherapy last week and will be experiencing that for the next six months.

 

I've been told it's hard to apply statistics to my case, though the doctors are hopeful and say I'm being treated with "curative intent."  However, I've been told by a few well-meaning individuals in recent weeks that there is no such thing as a "cure" and that this will always be a part of my life.  I'm terrified of recurrence.  I know the chemotherapy is to try to lower that possibility, but I've been warned there are no guarantees.  And I'm having a really hard day with that.  Not to be greedy, but at 39, even 5-year survival seems unfair.  I desperately wish for another 50+.  Today is just a day of a lot of fear and what ifs and unknowns and this anxiety just keeps growing.  

 

In addition, during my post-chemo checkup today, I mentioned some swelling in my leg and they looked and didn't like it and there were a few hours of panic as they tested me for blood clots.  Thankfully that test came back negative and they didn't see any pockets of fluid either, just soft tissue swelling.  Alas, they had no explanation for it and didn't think the steroid would cause it (especially so soon) so no idea really.

 

I guess the bottom line is that I'm scared and I desperately want someone to tell me that I'm going to be okay and that this is never going to come back.  I know the doctors can't tell me that, but...can anyone help bring some optimism and light into a dreadful day?  Pretty please?

UncleBuddy
Posts: 1019
Joined: Aug 2013

I would hold onto their words that they are treating it with a curative intent. Doctors are funny, if they don't think they can cure it, they will tell you. My brother was told he's treatable, not curable. I really believe if the doctors think you have a chance of cure, then you have a chance for cure. I know it's easy for me to say, but think positively! Chemo causes all sorts of crazy things to your body, the swelling could be a side affect of one of the drugs. I will keep you in my thoughts and prayers.

Lin

danker
Posts: 1282
Joined: Apr 2012

You have heard us all say "take it a day at a time." You will have many good days ahead since you are NED.  If we did't have some bad days we wouldn't recognize the good ones.  Take heart -you will get through this.

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

As I am sure you have been told, there are no absolutes with cancer.  One person may respond very well to treatment and go without a recurrance years or the rest of a long life.  Another person with same situation and same treatment may not respond well at all.  There is just no knowing the outcome.

I have found that living each day well is all that I can do.  If I spend my time worrying about what might be, I have wasted what could have been a wonderful day.

Being hopeful is something we must learn.  Most have never given a thought to their mortality before diagnosis.  Regardless of what stats may be quoted there is always a percentage (small though it may be) that survive well.  There is  reason to belive that you happen to be in "good" percentage.  It can and does happen.

Being fearful of what might be is one of the stages of dealing with a cancer diagnosis.  But it does not have to be a lasting emotion.  I have found that allowing the fear a limited amount of my time is the key.  When the fear strikes, give it 10 minutes or a half hour of your day, then figuratively put it in a box and move on to how best to use your day to the best benifit for yourself and others.  It takes practice, but you will find that by addressing it, feeling it and then moving on to better things will help.

To allow fear and anxiety to take over your life is to deny all that you might have accomplished, regardless of how long you live.

None of us control the number of days we have on this earth, we can only control what we make of the days that we have.

Marie who loves kitties

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

I'm just coming up on my 5 year marker with NED and when my surgeon told me he got it all - he meant he got it all.  Never have I've ever been more trustworthy of a doctor than him.  My situation was a possibility of having a permanent ostomy and that wasn't what I was hoping for my future so when asking about the surgery I just told him please don't jeprodize my health by saving my rectum.  He never did and gave me a new rectum.  Then my team of doctors opted for "mop up chemo".  I'm telling you, if you don't trust your doctors get new ones.  I'm not familiar with your rare cancer but I'm hoping that you are doing well.

Kim

Jaylo969
Posts: 827
Joined: Jan 2010

Hello Lady Skye! My name is Pat and in October, 2009 I was diagnosed with neoplasm of the Cecum. I had resection and was staged as 2B. I went through mental hell for a long time, worrying about recurrence.I am here now 4 years later, with no evidence of disease.

Just wanted to give you a little optimism and light and to welcome you to the forum. I am not a frequent poster, I stay very busy now, but if you have any questions I am available.

 

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I just got out of hospital a day or so back. They put me in to do scopes these days. I think they worry about me committing suicide by overdosing on the prep. They pulled one little polyp out. I don't need another scope for three years . I originally had st3c cc into 6/13 nodes. That was nearly fifteen years ago and I have had no ca since. I just got a call on another post from my friend Virginia(Foxy) ,she was stage 4 with mets to the liver. All her ca was removed surgically and she had the same chemo regime as me. December is her 20th anniversary still ca free. You will be fine. Ron.

Chelsea71
Posts: 1170
Joined: Sep 2012

A cure is very possible.  My aunt was diagnosed with 2b fifteen years ago.  Just take one day at a time.  Find enjoyment in each day and live for the moment.  

 

Chelsea

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

I've been corresponding with a memeber from the forum about this very subject. Reuccurance. 

Its either at the back or the forefront of every cancer patients mind. Heaven knows, any little pain, anywhere on the body and I'm thinking 'Oh no, is this cancer'. 

Other than that, I allow myself ten minutes a day to worry, then I shut it off and get on with life. I did this while I was going through treatment too. It is human nature for us to worry, but we do not want to let it consume us, or we lose out on life, and as we know, life i prescious.

I have been inspired by all the comments in this thread, so much so that I am going to bookmark it. 

We all need to be told thats its going to be OK. So, Lady Skye, its going to be OK, OK!

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

we all have it.  But the longer you remain healthy, the more it recedes into the background noise.  Or at least that is how it's been with me.  I've been NED for two years, after a stage 4 dx.  The first year or so I was constantly worried, but now it's much better.  So I think the passage of time really helps, and with a stage 2 dx, you are very likely to get that time.

Plus, if I had someone telling me there was no such thing as a "cure", when my own docs have told me otherwise, that "someone" would probably get a bit of a lecture from me on his/her lack of knowledge.  And plus, what a bummer!  What kind of friend of family member does that?  Sheesh.

tachilders's picture
tachilders
Posts: 313
Joined: Jun 2012

Your case sounds like a good one for long term remission. Follow what your doctors suggest and look into ways to prevent recurrence through diet and supplements. I'm 47 with advanced stage 4 cMRC with mets to LNG, lymph nodes, liver, peritoneum, and possibly bone. No surgeries of NED/remission for me. Diagnosed in June 2012 and just trying to get by months at a time. Been having lots of side effects of the disease lately like partial bowel obstructions, biliary drain problems, blood clots, etc....  Any or all of these side effects can take me out anytime so just play it day by day. Best of luck with your situation. 

marbleotis's picture
marbleotis
Posts: 715
Joined: Mar 2012

This whole cancer experience is filled with fear, what ifs, how, why.  You need to turn that around and say I need to do what ever I have to to get through this.  I was stage 3B signet cell Dx'ed 1/13/12.  I will be 2 years NED this January.  DX was 12 days before my 50th birthday.  I spent that birthday with my Surgeon and Oncoligist.   I would not change that because of that I am here today.

A stage 2 is early, please understand that. 

I was very scared about reoccurance after chemo ended.  I have had great CEA and scans.  Last years colonoscopy found a poly that was pre-c.  Ok so we remove and go on.

cancer has taken so much from us do not let it continue to take.

You are on the right road, take the foot off the brake and move to the acelerator and "live".

saussureainvolucrata's picture
saussureainvolucrata
Posts: 54
Joined: May 2013

LadySkye,

 

Fear will come and go, it's natural, and you can't control it. But what you CAN do is to do everything possible to prevent cancer from recurring. I know, science hasn't proven that exercise, supplements, and diet can prevent cancer from recurring, but why not do everything and anything possible that makes you feel healthy and strong? If I were you, I would take natural supplements (of course I would also read up on these before taking them: for example, curcumin), I would make some dietary changes (I would cut sugar out, and reduce carbs to the high-fiber types only: this is a variation of a ketogenic diet, which again is not proven to prevent recurrence, but it is a fact that reducing sugar and carbs is one very effective way to boost natural immune system, which will be your single most loyal ally against recurrence in the coming months!), and finally, I would exercise (yoga, meditation, maybe do a happy team sport). Be brave!  You will be alright!

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

with your staging of 2B.  Also, your doctors have given you some hope with their comments of "curative intent".  Regardless, I know how scary this is, especially at the beginning.  Over time, your fears will ease and you'll begin to enjoy life again.  Others have given you good advice on diet, exercise, etc.  My heart goes out to you.  This is a very challenging time.  It took me a year to stop constantly thinking about death.  Optimistic thought for you? - your staging is very favorable - it does get better.  My best wishes to you!     

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

I have nothing new to add ... but, maybe this will bring a smile to your face. ~ Cynthia

 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I was diagnosed with stage 3B colon cancer in January.  I finished up 6 months of chemo in July and have been NED for 4 months.  Stage 2 is very curable.  I have a good friend who's husband had stage 4 colon cancer TWICE and he's fine too.  This forum is a great place to get answers to everything.  I was scared to death when I found out I had cancer and would need chemo.  This group of people has helped me with so much.  Welcome and God bless.

Cynthia

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

Tell those well meaning individuals to STUFF IT!  You can beat this just as others have.  People just say the dumbest things.

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

PS swelling is very normal.  Your legs may swell several times.  You should always check to make sure it's not a clot but some swelling is just par for the course.

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