I am a cancer survivor

Posted by Helen, Volunteer Mentor @naturegirl5, Sep 25, 2019

I was diagnosed with Stage 1a endometrioid adenocarcinoma following a radical hysterectomy in August at Mayo. I'm fortunate that my cancer was caught at a very early stage and was not aggressive. My follow-up visit with my doctor at Mayo was last week and I was given my packet about cancer survivorship.

A new perception of myself to work through-I am a cancer survivor. How do I deal with this? How do you deal with this?

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

@denisestlouie

Drop cancer all together. I hate labels. I'll talk about all the time in these forums. I don't want to talk about it in person. Maybe it's just still to new. I'm approaching 6 mos.

Maybe I'll feel different in the future.

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Hi Denise- Is 6 months from learning that you have cancer or from your first treatment? I've never been cautious about who knew that I had cancer, and this goes back to 1981 with my first cancer. I think that I felt that the more people who knew about cancer and all of the new treatments, the more educated people would be. It's now 27 years since my first cancer. I'm still not shy about discussing it if it's appropriate.

It's terrifying the first time that you hear the word cancer when it's being applied to yourself. I'm glad that you feel like a warrior. It will serve you well as you fight on!

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@merpreb

Hi Denise- Is 6 months from learning that you have cancer or from your first treatment? I've never been cautious about who knew that I had cancer, and this goes back to 1981 with my first cancer. I think that I felt that the more people who knew about cancer and all of the new treatments, the more educated people would be. It's now 27 years since my first cancer. I'm still not shy about discussing it if it's appropriate.

It's terrifying the first time that you hear the word cancer when it's being applied to yourself. I'm glad that you feel like a warrior. It will serve you well as you fight on!

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Its almost 6 months since i was told i had cancer. I will be 65 in January. I am self employed as a Financial advisor. 2 years ago I was sick for another reason and was out of work for 5 months. My clients knew my approximate age. They already started asking me about my retirement. I need to keep this book of business intact so i can sell it when i am ready to quit work. I am not emotionally in a position to make decisions about my future. So I'm not telling anyone but close people. I also don't want to be asked about my health. I just don't. When people say how are i say I'm great. I'm. I don't feel sick. The worst side effect has been loosing my hair. That's only bad because it makes things public, but i did covered wigs and I'm fooling most people.

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@naturegirl5

@denisestlouie Like you I'm very careful who I reveal my cancer diagnosis to. At some level, though, I have to decide who to share my private life with. The more open I am the more support I get.

If you came up an alternative to "cancer survivor" would it be "cancer goddess" or "cancer warrior"? Or may drop "cancer" altogether and refer to yourself as a "warrior?

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I am a warrior. My current journal has a title page "Fight Back! My No Mercy Journey". It's a part of my journal series "My Side of the Street, A Red-headed Rabble Rouser's View of the World. " I wear a small "warrior" pendant.

My health challenges are shared here on Mayo Connect, and with some people I know. I want them to see that a cancer diagnosis isn't always a sentence we cannot recover from. Being part of the greater good, being of service to others even on the days when feeling rotten, gives me meaning. Education of how to live a meaningful life reminds me where I've been, where I am.
Ginger

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@gingerw

I am a warrior. My current journal has a title page "Fight Back! My No Mercy Journey". It's a part of my journal series "My Side of the Street, A Red-headed Rabble Rouser's View of the World. " I wear a small "warrior" pendant.

My health challenges are shared here on Mayo Connect, and with some people I know. I want them to see that a cancer diagnosis isn't always a sentence we cannot recover from. Being part of the greater good, being of service to others even on the days when feeling rotten, gives me meaning. Education of how to live a meaningful life reminds me where I've been, where I am.
Ginger

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Worrier sisters.

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@denisestlouie

Its almost 6 months since i was told i had cancer. I will be 65 in January. I am self employed as a Financial advisor. 2 years ago I was sick for another reason and was out of work for 5 months. My clients knew my approximate age. They already started asking me about my retirement. I need to keep this book of business intact so i can sell it when i am ready to quit work. I am not emotionally in a position to make decisions about my future. So I'm not telling anyone but close people. I also don't want to be asked about my health. I just don't. When people say how are i say I'm great. I'm. I don't feel sick. The worst side effect has been loosing my hair. That's only bad because it makes things public, but i did covered wigs and I'm fooling most people.

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Denise, I can certainly understand your reason for not telling people. As I said, I won't tell anyone if it's inappropriate, and I certainly have not been in your situation. I don't blame you for not mentioning it.

There are a bunch of warriors in Connect. It's nice to meet you, and I wish you all the best!

Merry

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@naturegirl5 Such a thought provoking post. Thank you and all the very best. Reading all comments reinforced how very different our experience with cancer is. No one size fits all.

Some don’t identify with being called warriors. Others don’t like the term survivor. Others don’t like the use of the word “journey” when referring to their cancer experience. And the list goes on. Each is correct and none is wrong. For each person individually.

I was unexpectedly diagnosed with stage 4 appendix cancer in August 2021 - a rare cancer which took the life of Audrey Hepburn. My prognosis was 10% chance of making 2 years. Yikes. I did limit who I told during treatment because I wanted to be as normal as I could. I worked full time from home in a corporate office job, including with my lap top in the chair fortnightly on Fridays having my infusions. I told my clients, my work partners, my workmates and my closely chosen A-team support group.

I became NED in May 2022 and have quarterly surveillance scans since - sometimes shortened if something is not looking quite right. Started with debulking surgery including a radical hysterectomy. Followed by 6 months of Folfiri and Avastin with the 46 hour take home bottle. Fortunately qualified for HIPEC and cytoreductive surgery including a peritonectomy in May 2022.

I personally feel I was forced into being a warrior who went on a wild journey and who to date has survived it! So very proud of myself and my body for fighting so hard. My cancer is not curable under current treatment. It is likely to come back and hopefully we will fight it off again.

I am now very open about my cancer journey when it feels right to share including to support or to educate.

The mental side of survivorship is massive and often isn’t given the attention it deserves. I have worked hard on living well while honoring what I’ve been through, including having referrals in hand to specialist cancer therapists should I need them. So far not but I won’t hesitate to use them if needed. I have close friends who live with Lupus and other major quality of life issues and them opening up about their experiences really has helped. I never knew that about them before I became ill. They were generous to share.

I am so very lucky that I came out of treatment with no quality of life issues. My colon resection can cause constipation and I do need to monitor my diet. I enjoy now working on my diet and exercise. Yet dealing with the mental issues is hard and continues to be a challenge. I’m not out of the woods.

Cancer has taught me so many many valuable lessons and sure has grown my tool box of resiliency, hope and capacity for joy in small things.

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@denisestlouie

Its almost 6 months since i was told i had cancer. I will be 65 in January. I am self employed as a Financial advisor. 2 years ago I was sick for another reason and was out of work for 5 months. My clients knew my approximate age. They already started asking me about my retirement. I need to keep this book of business intact so i can sell it when i am ready to quit work. I am not emotionally in a position to make decisions about my future. So I'm not telling anyone but close people. I also don't want to be asked about my health. I just don't. When people say how are i say I'm great. I'm. I don't feel sick. The worst side effect has been loosing my hair. That's only bad because it makes things public, but i did covered wigs and I'm fooling most people.

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@denisestlouie Totally understandable. So many factors you’re addressing including keeping your customer book together for when you decide it’s time to retire. Financial security as well as trying to keep as normal a life as possible through treatment are such big factors for us all to deal with in our different life circumstances..

Congratulations for ploughing on in yours and doing what you need to do with the support of a close A team. It reminds me of a wonderful woman at work Nina who we never knew was dealing with breast cancer treatment, wearing a very clever wig and doing her job until a few years after treatment ended and she was ready to share.

Wishing you all the best ❤️‍🩹

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@isadora2021 I started this discussion over 5 years ago. That was just about 6 weeks after I had a radical hysterectomy for endometrial cancer.

I had a recurrence of endometrial adenocarcinoma in late 2021 and received external pelvic radiation and two sessions of brachytherapy. That recurrence was found because I returned for my active surveillance appointments. Since that recurrence I've been NED (no evidence of disease) for 3 years.

I continue to refer to myself as a cancer survivor. To me, survivor means that I am not a "victim". A survivor is someone who uses all their resources to get through a difficult and painful time and yet comes out the other side evolved and resilient. It was hard for me at first to use "cancer" in the same sentence as myself as there must still be that stigma (in my mind) attached to the word.

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@naturegirl5

@isadora2021 I started this discussion over 5 years ago. That was just about 6 weeks after I had a radical hysterectomy for endometrial cancer.

I had a recurrence of endometrial adenocarcinoma in late 2021 and received external pelvic radiation and two sessions of brachytherapy. That recurrence was found because I returned for my active surveillance appointments. Since that recurrence I've been NED (no evidence of disease) for 3 years.

I continue to refer to myself as a cancer survivor. To me, survivor means that I am not a "victim". A survivor is someone who uses all their resources to get through a difficult and painful time and yet comes out the other side evolved and resilient. It was hard for me at first to use "cancer" in the same sentence as myself as there must still be that stigma (in my mind) attached to the word.

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Thank you for your definition of survivor.

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@naturegirl5

@isadora2021 I started this discussion over 5 years ago. That was just about 6 weeks after I had a radical hysterectomy for endometrial cancer.

I had a recurrence of endometrial adenocarcinoma in late 2021 and received external pelvic radiation and two sessions of brachytherapy. That recurrence was found because I returned for my active surveillance appointments. Since that recurrence I've been NED (no evidence of disease) for 3 years.

I continue to refer to myself as a cancer survivor. To me, survivor means that I am not a "victim". A survivor is someone who uses all their resources to get through a difficult and painful time and yet comes out the other side evolved and resilient. It was hard for me at first to use "cancer" in the same sentence as myself as there must still be that stigma (in my mind) attached to the word.

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@naturegirl5 Thank you so much for sharing that update. Congratulations.

How wonderful surveillance scanning is and being able to jump on a recurrence very quickly. I missed all the symptoms of my initial stage 4 and have no confidence whatsoever in my ability to listen to my body. Surveillance - while challenging each time - is also such a mental comfort.

I love your approach. I too feel “right” with using the term survivor in the same way you do. Life threw a ton of stuff at me and I too feel I fought very hard to come out the other side as a survivor. Surviving in tough circumstances takes a whole ton of work and determination to do what’s needed. Certainly no victim. An active participant in my treatment.

It also takes a huge effort to get through the days of feeling beyond horrendous, and just wanting to curl up under the blankets. (A day here and there of that can be thoroughly therapeutic though!)

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