1. < Colorectal Cancer

Cancer Recurrence: Everything removed, but can it come back?

Posted by earscan @earscan, Jan 25, 2021

First I had colon rectal cancer - squamous cell carcinoma of the anal canal - with tumor removal and then radiation and chemo. Thirteen years later I got cervical cancer, with a radical hysterectomy and lymph node re-sectioning. I had been reading about how this comes back again after awhile. Since everything is removed, and I know this is probably a silly question, but could it come back again somehow? Thanks for your help.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

laihuaqing | @laihuaqing | Feb 2, 2021
In reply to @hopeful33250 "Hello All: I've read with interest this discussion on cancer recurrence. You have all reported thoughts..." + (show)
@hopeful33250

Hello All: I've read with interest this discussion on cancer recurrence. You have all reported thoughts and feelings that are so common after a cancer diagnosis. I have had three surgeries (2003, 2005, and 2016) due to a rare form of cancer, neuroendocrine tumors (NETs), and mine have been classified as Carcinoids. With each recurrence, I expected the worst outcome. However, the worst-case scenario has not come about for me so my worries were of no effect!

I try to think of cancer as a chronic illness, like diabetes, seizure disorders, heart problems, lung problems, etc. This means that I need to adapt to a lifestyle that is as healthy as possible. For me, it includes exercise (to reduce stress and worries), healthy eating (to reduce other health-related problems), and vigilance by visiting doctors and having appropriate follow-up tests.

I'm also diligent with research about my cancer which includes support groups like Mayo Connect, organizations devoted to research on my particular type of cancer, and sharing with others (like I'm doing now).

This sounds like a lot of effort, but I think it is worth the effort. It gives me a sense that I'm doing what I can to monitor my health and take care of myself. Education for me increases my feelings of empowerment.

My personal motto is "Education is Power and Attitude is Everything."

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Thanks for your share of advice!

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earscan | @earscan | Feb 2, 2021
In reply to @merpreb "@earscan,- What a great question! I think that everyone who has had cancer asks something similar..." + (show)
@merpreb

@earscan,- What a great question! I think that everyone who has had cancer asks something similar to this. I have had 2 different types of lung cancer, 10-years-apart. They were/are NSCLC.

Squamous cells are nasty cells that like to return. They form from the lining of the anal canal. They are the most common type of anal cancer. Anal cancer is fairly rare. Many people believe anal cancer is caused by the human papillomavirus (HPV).

https://www.mayoclinic.org/diseases-conditions/anal-cancer/symptoms-causes/syc-20354140

Squamous cell cancers usually spread to nearby lymph nodes and they can spread to nearby organs, as yours did. My two cancers were 10 years apart. I don't know why cancers wait and upend our lives like this. I sure wish I knew. If everything was removed and it returns then it would be, of course, to another part of your body, It can't possibly return to something that isn't there.

Cancer patients are always looking over their shoulders wondering if there will be a next one. And this is especially true for people with very virulent cancers. The best way to stay on top of this is to get regular testing, and any treatments, and live the best life that you can. Colleen has given you some wonderful sites to help with this fear. But it really is up to each of us to examine what is important to "us" in life and center on that. And that is pretty tough to do. There's no easy with cancer, no path to what is right or wrong, good or bad. You have to chose what is good for you, what feels comfortable and right for you and your family.

I know that this is much different than any other hard decisions that you have had to make, about how to cope with something tough. But it might be a starting point for you, right now, this minute. Make lists of what the pros and cons are to worrying about if or when you might have another cancer. That never got me anywhere so worrying only hurts me and makes my life miserable. A lot of times I can't escape it either. The thought is like a moccasin plant. It's a huge trap.

What have you done in the past to get through very hard times? I could use some help with this too!

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Thank you Merry. Love your feedback. When I had squamous cell carcinoma of the anal canal, with surgery, radiation and chemo, it never occurred to me it would come back 13 years later as cervix cancer. Now this is a real wake up call and I have to get my mojo back. The Share Cancer Group gave me some good ideas too, ie. exercise movement after cancer, moving for life, and physical therapy. Trying also to combine weight watchers with high protein diet after sepsis and anemia - that's hard for sure LOL. I don't worry because I thought this time around was it - so I did all the planning, talked to my minister, got my affairs in order - so now I am going to do some of the above, feed my beloved geese on the lake, and volunteer at Challenge to teach some life skills to children who need help. I'm not done yet and if I get another 13 years, I'll be 86 years old! I'm happy! Gina

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2 replies
Merry, Alumni Mentor | @merpreb | Feb 2, 2021
In reply to @earscan "Thank you Merry. Love your feedback. When I had squamous cell carcinoma of the anal canal,..." + (show)
@earscan

Thank you Merry. Love your feedback. When I had squamous cell carcinoma of the anal canal, with surgery, radiation and chemo, it never occurred to me it would come back 13 years later as cervix cancer. Now this is a real wake up call and I have to get my mojo back. The Share Cancer Group gave me some good ideas too, ie. exercise movement after cancer, moving for life, and physical therapy. Trying also to combine weight watchers with high protein diet after sepsis and anemia - that's hard for sure LOL. I don't worry because I thought this time around was it - so I did all the planning, talked to my minister, got my affairs in order - so now I am going to do some of the above, feed my beloved geese on the lake, and volunteer at Challenge to teach some life skills to children who need help. I'm not done yet and if I get another 13 years, I'll be 86 years old! I'm happy! Gina

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@earscan- Do what you can and want! I'm 74 and have survived lung cancer for 23+ years. I'm still kicking around! lol

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miriam57 | @miriam57 | Feb 2, 2021
In reply to @earscan "Thank you Merry. Love your feedback. When I had squamous cell carcinoma of the anal canal,..." + (show)
@earscan

Thank you Merry. Love your feedback. When I had squamous cell carcinoma of the anal canal, with surgery, radiation and chemo, it never occurred to me it would come back 13 years later as cervix cancer. Now this is a real wake up call and I have to get my mojo back. The Share Cancer Group gave me some good ideas too, ie. exercise movement after cancer, moving for life, and physical therapy. Trying also to combine weight watchers with high protein diet after sepsis and anemia - that's hard for sure LOL. I don't worry because I thought this time around was it - so I did all the planning, talked to my minister, got my affairs in order - so now I am going to do some of the above, feed my beloved geese on the lake, and volunteer at Challenge to teach some life skills to children who need help. I'm not done yet and if I get another 13 years, I'll be 86 years old! I'm happy! Gina

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Thank you for sharing, this is inspirational

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duckduck2020 | @duckduck2020 | Feb 2, 2021

I want to say you are a real fighter! I am so happy to see that you are going to fight! I pray you have another 13 years!

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Feb 16, 2021

@earscan. Thank you for starting this discussion. I was diagnosed with endometrial cancer adenocarcinoma, Stage 1a, in 2019 at Mayo Clinic in Rochester. following a radical hysterectomy with salpingo-oopherectomy. So, like you, everything was removed. My follow-up care is with the Mayo team every 6 months for 3 years, then annually for 2 more years. My next appointment is in April. I had a total hip replacement 2 months after the hysterectomy (the hip replacement had been anticipated and scheduled prior to developing the endometrial symptoms. My PT at Mayo told me that the hysterectomy with the hip replacement was a double whammy for pelvic floor and hip muscles). I've mostly been able to let thoughts of recurrence or secondary cancers go until the past month. I developed pelvic pain that I could not figure out about a month ago. The pain and achiness has subsided. I went to my primary care physician to rule out a urinary tract infection. I'm hoping as he said that it was due to x-country skiing and snowshoeing where I'm using my pelvic floor muscles in a way that I haven't done since before those surgeries. I'm headed back to PT. Still - these thoughts of recurrence and secondary cancers come back daily.

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gigitoava4 | @gigitoava4 | Feb 16, 2021

I certainly understand fear of reoccurrence as I am a 10 year breast cancer survivor. I had stage 2. Strong chemo infusions for 6 months after surgery. Partial mastectomy. 9 lymphnodes removed. One positive. 7 weeks radiation. 5 years of Tamoxifen as I am estrogen positive my cancer. 5 years of Anastrole another anti estrogen. I have see me oncologist every 4 months through the years as I have complex issues. I think most of us would suggest you see your oncologist rather than primary physician for that type of pain for evaluation. Unless you need a referral from the primary for insurance purposes. Don't waste time with primary.

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quirkygirl35 | @quirkygirl35 | May 2, 2021

I had a brain tumor when I was ten and now thirty years later discover that somewhere along the way I caught a virus. Symptoms where so random (cold extremities, waking up in the middle of the night not being able to breathe for 30+ seconds, anxieties +depression) I thought they were after effects of chemo or radiation. Then in my thirties I stared getting bad digestive issues, saw a gastroenterologist and my primary Dr. couldn't find anything either. So I had to do the research myself and tell my dr to test my blood antibodies here at the Mayo. Now at almost 40 I have Chronic Epstein Barr.
So to answer your question yes recurrance is always possible. And do your own research people, listen to your own individual bodies. I was unfortunately a minor then so they told my parents a lot more than they did to me, but I really regret not reading up on anything when I was of age.

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2 replies
Amanda Burnett | @amandaa | May 2, 2021
In reply to @quirkygirl35 "I had a brain tumor when I was ten and now thirty years later discover that..." + (show)
@quirkygirl35

I had a brain tumor when I was ten and now thirty years later discover that somewhere along the way I caught a virus. Symptoms where so random (cold extremities, waking up in the middle of the night not being able to breathe for 30+ seconds, anxieties +depression) I thought they were after effects of chemo or radiation. Then in my thirties I stared getting bad digestive issues, saw a gastroenterologist and my primary Dr. couldn't find anything either. So I had to do the research myself and tell my dr to test my blood antibodies here at the Mayo. Now at almost 40 I have Chronic Epstein Barr.
So to answer your question yes recurrance is always possible. And do your own research people, listen to your own individual bodies. I was unfortunately a minor then so they told my parents a lot more than they did to me, but I really regret not reading up on anything when I was of age.

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Welcome to Mayo Clinic Connect, @quirkygirl35. Thank you for sharing your story with us. I agree that listening to our own individual bodies is the best way to be your own advocate for your healthcare. It feels as though the system is making it harder and harder to campaign for your own well being, but I do believe that we know ourselves better than anyone else does. There is only so much that testing can detect. Without sharing the symptoms and issues your are experiencing, your physician with never have all the pieces to the puzzle.

May I ask what type of brain tumor you had?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 5, 2021
In reply to @quirkygirl35 "I had a brain tumor when I was ten and now thirty years later discover that..." + (show)
@quirkygirl35

I had a brain tumor when I was ten and now thirty years later discover that somewhere along the way I caught a virus. Symptoms where so random (cold extremities, waking up in the middle of the night not being able to breathe for 30+ seconds, anxieties +depression) I thought they were after effects of chemo or radiation. Then in my thirties I stared getting bad digestive issues, saw a gastroenterologist and my primary Dr. couldn't find anything either. So I had to do the research myself and tell my dr to test my blood antibodies here at the Mayo. Now at almost 40 I have Chronic Epstein Barr.
So to answer your question yes recurrance is always possible. And do your own research people, listen to your own individual bodies. I was unfortunately a minor then so they told my parents a lot more than they did to me, but I really regret not reading up on anything when I was of age.

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Hi Quirkygirl (love the name), I'd like to add my welcome. You make such a good point about not having the information about childhood cancer once you became an adult. Do you have access to your medical records from that time? Are your parents able to talk about it with you?

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