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

Posted by earscan @earscan, Jan 25 10:30am

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.

Cancer, unfortunately, is a sly devil. Even when all visible cancer cells are removed, a percentage chance of recurrence remains. What the percentage chance actually is varies depending on the person, the cancer type and stage and genetics. That's why cancer experts use the word "remission" rather than "cure".

Living with the fear of recurrence is a reality that I think every cancer patient can relate to. Many like @merpreb @elizm @tessfair1 @trixie1313 @emmae @azkidney57 @grandpabob @hopeful33250 and others have shared their fears, hopes and strategies in these discussions.

– Anxiety due to Cancer https://connect.mayoclinic.org/discussion/anxiety-due-to-cancer/
– Emotional health after cancer https://connect.mayoclinic.org/discussion/emotional-health-after-cancer/
– Facing Cancer Recurrence, PTSD & Acknowledging Mental Health https://connect.mayoclinic.org/discussion/facing-cancer-recurrence-ptsd-acknowledging-mental-health/
– The Roller Coaster Ride of Cancer https://connect.mayoclinic.org/discussion/the-roller-coaster-ride-of-cancer/
– Help finding a positive attitude https://connect.mayoclinic.org/discussion/help-finding-a-positive-attitude/

@earscan, have you talked to your oncologist about your specific risk of recurrence? Have you thought of reaching out to a social worker to talk about it?

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@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!

REPLY

I understand your concern. I am a 10 year breast cancer survivor stage two estrogen positive. 6 months 7 weeks of radiation. 5 years of Tamoxifen and finishing my 5 years of Anastrole. I have been seeing my oncologist every 4 months. I have had one scare of reoccurrence with a surgical biopsy in the other breast. I wish I had decided to have a biolateral mastectomy with reconstruction 10 years ago instead of a?partial mastectomy as my tumor was?small with one positive lympth node. Every mamogram is a nightmare. My nerves in my legs were permanently damaged by chemo but I am still here. I understand how you feel about reoccurrence.

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I just was released after a resection of liposarcoma in my abdomen (very rare), which also can come back after a time. My reoccurrences was 3 and 5 years. By coming to Mayo for the 5 year recurrence instead of my local regional hospital center, I was given additional choices instead of just resection surgery alone. I was given 5 weeks of pre operative radiology and intra operative radiation to catch any problem areas the surgeon thought should be left to clean up anything he couldn't see or the pre treatments may not have focused on or could not properly handle (such as bone marrow).

Yes regular scans are a must, but also being at the right place (Mayo) with their amazing team approach. I wish my previous resections would have had the RAD treatments as per a study my Mayo Radiologist found.. my percentages of recurrence went from 34% to 11% by adding the RAD treatments !!.. As far as percentages go, I like to believe my percentages are even better since the quality and presicion of treatment at May is greater than other hospitals that may be lesser ranked. Takeaway I always believe in – ALL HOSPITALS ARE NOT CREATED EQUAL. One hospitals plan of treatment may not even be in the vernacular of another. They may not perform many instances of certain operations. I like to use US News and World Report to lookup specialty rankings and compare. Mayo is almost always neat the top. PS I am not a Mayo employee, just a two time major surgery patient. : )

I have been to Mayo before with great success. They really go the extra mile. My thread of hope? Work the percentages and be in a place that can find any new methods of treatment for the future resections that can bring your recurrence percentages down. There are ALWAYS new studies being done. And even with rare cancers, there may (as mine was) be new therapies that give you a better chance in the future as treatment evolves and improves!

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@jventresco

I just was released after a resection of liposarcoma in my abdomen (very rare), which also can come back after a time. My reoccurrences was 3 and 5 years. By coming to Mayo for the 5 year recurrence instead of my local regional hospital center, I was given additional choices instead of just resection surgery alone. I was given 5 weeks of pre operative radiology and intra operative radiation to catch any problem areas the surgeon thought should be left to clean up anything he couldn't see or the pre treatments may not have focused on or could not properly handle (such as bone marrow).

Yes regular scans are a must, but also being at the right place (Mayo) with their amazing team approach. I wish my previous resections would have had the RAD treatments as per a study my Mayo Radiologist found.. my percentages of recurrence went from 34% to 11% by adding the RAD treatments !!.. As far as percentages go, I like to believe my percentages are even better since the quality and presicion of treatment at May is greater than other hospitals that may be lesser ranked. Takeaway I always believe in – ALL HOSPITALS ARE NOT CREATED EQUAL. One hospitals plan of treatment may not even be in the vernacular of another. They may not perform many instances of certain operations. I like to use US News and World Report to lookup specialty rankings and compare. Mayo is almost always neat the top. PS I am not a Mayo employee, just a two time major surgery patient. : )

I have been to Mayo before with great success. They really go the extra mile. My thread of hope? Work the percentages and be in a place that can find any new methods of treatment for the future resections that can bring your recurrence percentages down. There are ALWAYS new studies being done. And even with rare cancers, there may (as mine was) be new therapies that give you a better chance in the future as treatment evolves and improves!

Jump to this post

Soooo true. Glad you got to Mayo

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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."

REPLY
@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."

Jump to this post

@hopeful33250– Good morning. I have a type of cancer that produces many primaries. SO I also think of my lung cancer as Chronic. I think that a lot of cancers are being treated like this because of the wonderful new treatments available. I also agree that research is imperative. No one can predict the future but it's pretty darn hard not to look over my shoulder.

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Excellent idea on how to live with cancer

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Thank you. I try to stay positive and encourage others on their journey.

Donna

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@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."

Jump to this post

So true and so good! Thank you!

REPLY
@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."

Jump to this post

Thanks for your share of advice!

REPLY
@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!

Jump to this post

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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