New Here - major anxiety non-stop for my wife
In August 2019, my wife (39 yrs old at the time) was diagnosed with colon cancer. 1 tumour, stage 3. Surgery removed it, cancer found in 3 of 27 lymphnodes. Not terrible, but not perfect. She began chemo - did 4 cyces out of 8 and they discovered metastic lesions on her liver. 2 tiny ones. Cancer then re-staged at 4a. She stopped chemo, they did liver resection surgery in Dec 2019 and removed the 2 lesions, she then did 8 more chemo cycles, ending May 2020. She has since has 2 CT scans - both showing No Evidence of Disease. Next scan in November. Obviously we are anxious, which is normal as we understand. I need to stop googling info on this. Everything points to a terrible outcome, but doctors think she's in a good position going forward with clear scans to date and confidence that they removed everything apparent at the time. feel she has a good chance of making this a distant memory. We have no reason to believe anything bad, but it's like our brains are programmed now to expect recurrence. VEerything on the web says dreadful, sub-15% 5 yr survival rates.
Comments
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First, I think many here
First, I think many here never had a recurrence. I did, and yeah, chemo sucks, but here I am, still doing well in chemo.
Second, if she is young and healthy, and able to get treatment if she were to have recurrence, don't pay a lot of attention to those stats. My understanding is they include those who were in bad health or older and passed from something completely unrelated to the cancer.
And scanxiety is real for almost everyone. The not knowing is terrifying. If it is good news, she will actually probably collapse a little and cry because all that pent up fear that she is internalizing and hiding from herself will rush out. If she has another liver met, or even a lung met, she will be devastated, but then her inner fight will take over and she will get a plan, and do it.
I wish i had words of wisdom for the scanxiety. I have a scan next Wed and been stressing about it for 2 weeks already, so I got nothing
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one more thing, don't put any
one more thing, don't put any stock in the expressions or looks on the person giving you the scan. They really can't read them like an oncologist or radiologist. I have learned that their demeanor is actually about they truly feel for anyone on their table regardless of status as just being there means you have or have had cancer AND they are chatting about stuff with their coworkers like we do at work, and that is more likely the cause of pained looks or smiling than what the scan says. I say this after trying to read them, and after 3 years of scans, I know it doesn't indicate what I hear at appt. With doc.
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Six years and counting
I am just one of many Stage IV's who are plugging along just fine. Several are here on the forum, and may chime in as they visit the site.
While every scan is a time of anxiety, no getting away from that, no matter how long you are surviving. The time to live is in-between scans.
I decided early that I was going to be one of the small % of survivors, and I haven't looked back. Tell yourselves that you are going to be in the 15%, and live, live, live.
It is such an awful disease and can consume us. While those still in the fight have no other choice; those of us who have heard the words NED - no evidence of disease, need to take it and run.
I wish your wife the best - she is so young, and that is good. Young and healthy.
Tru
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Similar story here; thought
Similar story here; thought to be stage 1, turned out to be stage 4 (you can read the story on my about me page).
It's impossible not to imagine the worst. It's also impossible not to imagine the best. I think of both; and, contrary to what 8 year old me believed, I cannot tell the future. I didn't know what would happen on my last scan but I was mad stressed.
Your wife is in a good position clinically. Two small tumors -- without knowing anything else about her condition -- able to be removed with surgery, is a relatively good sign for a stage IV. As we can't see the future, scans can't see what is happening at the level where tumors begin, so we don't know what is lurking out there. Oligometastatic cancer is what you should be Googling if you must Google. That, and whatever trials are available. Ask for molecular testing of the pathology samples and your bloodwork.
Even if you're in this "good" category, it's still more likely than not to see a recurrence given what we know now. I thought I was at peace with that thinking until I went into the clinic to get the results of my last MRI, lol. I have to work on it still. But I have stopped searching the Internet until all hours (for cancer stuff at least)
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I thought I was the only oneabita said:one more thing, don't put any
one more thing, don't put any stock in the expressions or looks on the person giving you the scan. They really can't read them like an oncologist or radiologist. I have learned that their demeanor is actually about they truly feel for anyone on their table regardless of status as just being there means you have or have had cancer AND they are chatting about stuff with their coworkers like we do at work, and that is more likely the cause of pained looks or smiling than what the scan says. I say this after trying to read them, and after 3 years of scans, I know it doesn't indicate what I hear at appt. With doc.
I thought I was the only one who thought I could read the minds of the tech!
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Statistics
If you search the term on this site, you will find some interesting discussions of the use of statistics. Your wife is not a statistic. Plus, some believe that there are steps you can take to optimize your odds of a better outcome. For example, coffee consumption has shown up in the newspapers again as a way to optimize the odds. The topic has dropped off the board recently, but there are multiple other strategies to help, such as having optimal vitamin d levels. It sounds like you are on a good road with two NED scans, and sometimes doing everything you can to keep it that way is empowering. Best of luck to you and your wife.
https://jamanetwork.com/journals/jamaoncology/article-abstract/2770262?utm_campaign=articlePDF&utm_medium=articlePDFlink&utm_source=articlePDF&utm_content=jamaoncol.2020.3938
Conclusions and Relevance Coffee consumption may be associated with reduced risk of disease progression and death in patients with advanced or metastatic colorectal cancer.
(But do not let the survival statistics in the article freak you out. . .)
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Thanks
Thank you Everyone for your comments. This thing is such a mindf*k. I'm generally a numbers guy and the stats are just that - stats. I always tell myself that the stat is based on so many factors and that surely, someone needs to make up the good side and the less fortunate side of those numbers. I'll keep everyone posted. thanks again
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Thanksabita said:First, I think many here
First, I think many here never had a recurrence. I did, and yeah, chemo sucks, but here I am, still doing well in chemo.
Second, if she is young and healthy, and able to get treatment if she were to have recurrence, don't pay a lot of attention to those stats. My understanding is they include those who were in bad health or older and passed from something completely unrelated to the cancer.
And scanxiety is real for almost everyone. The not knowing is terrifying. If it is good news, she will actually probably collapse a little and cry because all that pent up fear that she is internalizing and hiding from herself will rush out. If she has another liver met, or even a lung met, she will be devastated, but then her inner fight will take over and she will get a plan, and do it.
I wish i had words of wisdom for the scanxiety. I have a scan next Wed and been stressing about it for 2 weeks already, so I got nothing
Thank you for the message. Sometimes a little perspective goes a long way.
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Thank youTrubrit said:Six years and counting
I am just one of many Stage IV's who are plugging along just fine. Several are here on the forum, and may chime in as they visit the site.
While every scan is a time of anxiety, no getting away from that, no matter how long you are surviving. The time to live is in-between scans.
I decided early that I was going to be one of the small % of survivors, and I haven't looked back. Tell yourselves that you are going to be in the 15%, and live, live, live.
It is such an awful disease and can consume us. While those still in the fight have no other choice; those of us who have heard the words NED - no evidence of disease, need to take it and run.
I wish your wife the best - she is so young, and that is good. Young and healthy.
Tru
Thank you for your message. I do believe that someone needs to be that 15%. So why not my wife?! She has many factors going for her, namely her age, nutritional lifestyle and a great team of doctors. Thanks again.
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Appreciate itReal Tar Heel said:Similar story here; thought
Similar story here; thought to be stage 1, turned out to be stage 4 (you can read the story on my about me page).
It's impossible not to imagine the worst. It's also impossible not to imagine the best. I think of both; and, contrary to what 8 year old me believed, I cannot tell the future. I didn't know what would happen on my last scan but I was mad stressed.
Your wife is in a good position clinically. Two small tumors -- without knowing anything else about her condition -- able to be removed with surgery, is a relatively good sign for a stage IV. As we can't see the future, scans can't see what is happening at the level where tumors begin, so we don't know what is lurking out there. Oligometastatic cancer is what you should be Googling if you must Google. That, and whatever trials are available. Ask for molecular testing of the pathology samples and your bloodwork.
Even if you're in this "good" category, it's still more likely than not to see a recurrence given what we know now. I thought I was at peace with that thinking until I went into the clinic to get the results of my last MRI, lol. I have to work on it still. But I have stopped searching the Internet until all hours (for cancer stuff at least)
I appreciate your time to reply. Sorry to hear you are going through this also. I wish you all the best for a long healthy life.
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StatsSandiaBuddy said:Statistics
If you search the term on this site, you will find some interesting discussions of the use of statistics. Your wife is not a statistic. Plus, some believe that there are steps you can take to optimize your odds of a better outcome. For example, coffee consumption has shown up in the newspapers again as a way to optimize the odds. The topic has dropped off the board recently, but there are multiple other strategies to help, such as having optimal vitamin d levels. It sounds like you are on a good road with two NED scans, and sometimes doing everything you can to keep it that way is empowering. Best of luck to you and your wife.
https://jamanetwork.com/journals/jamaoncology/article-abstract/2770262?utm_campaign=articlePDF&utm_medium=articlePDFlink&utm_source=articlePDF&utm_content=jamaoncol.2020.3938
Conclusions and Relevance Coffee consumption may be associated with reduced risk of disease progression and death in patients with advanced or metastatic colorectal cancer.
(But do not let the survival statistics in the article freak you out. . .)
Your reply did wonders for my mindset. The statistics link you included really helped give me some perspective and some reduced anxiety about her prospects. Thank you so much.
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Click my name, read my story.
Click my name, read my story. It parallels your wife's; 49yo, one 5cm tumor, 2-17 nodes, colectomy, folfox, recurrance in liver [3 separate tumors], surgery, recurrance [1 3cm tumor]. That spanned 7 years, now I'm 6 years past that last cancer surgery, 13 years out from diagnosis, clear, NED. I've changed some things, but I eat regular food, exercise sporadically, take a statin, a baby aspirin daily, drink my coffee daily and my beer weekly. The point being that I'm quite average in my habits, carrying 30 extra pounds maybe and still have suvived a very similar path at an older age. So you and the missus can take this for what its worth, and stay away from statistics, they scared me too, for no useful purpose...........................................Dave
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It sounds like your wife's
It sounds like your wife's surgeries were successful with clear margins. That's good news. We know how terrible anxiety is for health and healing but in situations like this it's extremely difficult to manage it. I meditate but found it very difficult to clear the mind during surgeries and treatments. Getting outdoors is a great way to relax and enjoy nature, and seeing others doing the same. I am stage four and I'm now three years and ten months cancer free. I had two positive lymph nodes, two small liver tumors and three small lung tumors. My surgeries also had clear margins. I'm hoping your wife's next scans are good.
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Davebeaumontdave said:Click my name, read my story.
Click my name, read my story. It parallels your wife's; 49yo, one 5cm tumor, 2-17 nodes, colectomy, folfox, recurrance in liver [3 separate tumors], surgery, recurrance [1 3cm tumor]. That spanned 7 years, now I'm 6 years past that last cancer surgery, 13 years out from diagnosis, clear, NED. I've changed some things, but I eat regular food, exercise sporadically, take a statin, a baby aspirin daily, drink my coffee daily and my beer weekly. The point being that I'm quite average in my habits, carrying 30 extra pounds maybe and still have suvived a very similar path at an older age. So you and the missus can take this for what its worth, and stay away from statistics, they scared me too, for no useful purpose...........................................Dave
Thank you so much for this post. I'm so appreciate of it as it is indeed similar to my wife's situation. It made me feel a lot better and I'm so glad to hear of your fortunate path since your ordeal. I should add that my wife's margins around the resected areas were clear. She never had elevated CEA levels which make things a bit tricky to get an advance feel for anything bad going on, aside from what the scans tell us. Notwithstanding, I can see that you've had a heck of a time getting better on one hand while having your wife ill at the same time. Wishing you all the best from here on out.
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DianeDiane_K said:It sounds like your wife's
It sounds like your wife's surgeries were successful with clear margins. That's good news. We know how terrible anxiety is for health and healing but in situations like this it's extremely difficult to manage it. I meditate but found it very difficult to clear the mind during surgeries and treatments. Getting outdoors is a great way to relax and enjoy nature, and seeing others doing the same. I am stage four and I'm now three years and ten months cancer free. I had two positive lymph nodes, two small liver tumors and three small lung tumors. My surgeries also had clear margins. I'm hoping your wife's next scans are good.
Thank you, Diane for taking the time to reply. Yes - her margins we clear in all cases. All things considered I think she is in a good spot to hopefully make this all a distant memory one day - except of course for the fact that it never really is - but you know what I mean. I am so happy to hear you are 3yrs/10mths cancer free. What amazing news. I wish you continued good health.
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Welcome
Welcome to the board and sorry to hear that your wife had a diagnosis at such an early age. Do NOT go on the web for anything, and that goes for treatment to a hang nail. The web is filled with misleading information and a lot of it is outdated. Your wife is unique and she will respond to treatment differently than others so you can't compare her to anything out there. Sounds like the doctors are on target and she is following their lead and direction. It's hard not to worry, and we all have been there. Try to keep yourselves occupied and keep thinking that she will overcome this. She is young and has that in her favor. Wishing her, and you, the best.
Kim
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ThanksAnnabelle41415 said:Welcome
Welcome to the board and sorry to hear that your wife had a diagnosis at such an early age. Do NOT go on the web for anything, and that goes for treatment to a hang nail. The web is filled with misleading information and a lot of it is outdated. Your wife is unique and she will respond to treatment differently than others so you can't compare her to anything out there. Sounds like the doctors are on target and she is following their lead and direction. It's hard not to worry, and we all have been there. Try to keep yourselves occupied and keep thinking that she will overcome this. She is young and has that in her favor. Wishing her, and you, the best.
Kim
Thank you for taking the time to reply.
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Treatments and attitude
It sounds as if your wife is doing well coming from where she was eariler. All of us here have delt with the uncertianty of wordering whats down the road. I came to this site to find support and it has proved to be a good thing. Staying positive is key to allot of this. I will keep you and your wife in my prayers as I do for all of us. SandiaBuddy brought up statistics. He's right, your wife or any of us for that matter are not a statistic. The mind is powerful, be calm. Best of luck to your wife and you.
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When I read this I had to letbeaumontdave said:Click my name, read my story.
Click my name, read my story. It parallels your wife's; 49yo, one 5cm tumor, 2-17 nodes, colectomy, folfox, recurrance in liver [3 separate tumors], surgery, recurrance [1 3cm tumor]. That spanned 7 years, now I'm 6 years past that last cancer surgery, 13 years out from diagnosis, clear, NED. I've changed some things, but I eat regular food, exercise sporadically, take a statin, a baby aspirin daily, drink my coffee daily and my beer weekly. The point being that I'm quite average in my habits, carrying 30 extra pounds maybe and still have suvived a very similar path at an older age. So you and the missus can take this for what its worth, and stay away from statistics, they scared me too, for no useful purpose...........................................Dave
When I read this I had to let my husband know about your journey. It's been about 3.5 years since Richard's diagnosis. He's had a few reoccurrences. It was beneficial for him to hear your experience in that you had a long fight to get to NED. Thank you for sharing and best wishes!
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Stage IV Since Late 2014 Multiple Mets Lungs, Spine
And I am doing well overall.
Running around, doing things, but just added updates. If you check my profile out, when I was diagnosed 5 year survival was about 10% Click here:
https://csn.cancer.org/user/237551
(Also note as others pointed out, the stats are inclusive of people of all ages and all other health conditions)
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