How do you tell people about new diagnosis of anal cancer?

Posted by lah115 @lah115, May 26 7:13am

Just got diagnosed with anal cancer, found in colonoscopy. It is squamous cell with basaloid features. Meet with oncologist next Friday to learn treatment options. In the meantime, do I tell family& friends, or wait to find out what I’m dealing with & how? And then, when I start sharing this, how do I? Being as where the cancer is, are butt or a-hole jokes appropriate opening lines?

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Consider sharing with only your close immediate family. I had Stage 3b CRC diagnosed one year ago and I'm glad I only shared with my wife and grown children. Then the issue arose of whether to disclose with the broader family during my son's wedding in October. My wife wanted me to tell everyone and I said why I expect to be fine and besides it would take away from that wonderful event. I'm glad we kept this to a very small circle. Part of a large family of eight siblings, when I finally disclosed it a month ago it's interesting how people responded. Most people don't know how to deal with it, some fake concern then avoid you. Other simply don't understand it. By disclosing it you may be wanting either sympathy or prayers, but you might be surprised and disappointed that you will get neither. You have to remember too that once you disclose you're really going to have to continue sharing the details and then it becomes something that takes on my life of its own. And that's not how I want to live!

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@roywalton

Consider sharing with only your close immediate family. I had Stage 3b CRC diagnosed one year ago and I'm glad I only shared with my wife and grown children. Then the issue arose of whether to disclose with the broader family during my son's wedding in October. My wife wanted me to tell everyone and I said why I expect to be fine and besides it would take away from that wonderful event. I'm glad we kept this to a very small circle. Part of a large family of eight siblings, when I finally disclosed it a month ago it's interesting how people responded. Most people don't know how to deal with it, some fake concern then avoid you. Other simply don't understand it. By disclosing it you may be wanting either sympathy or prayers, but you might be surprised and disappointed that you will get neither. You have to remember too that once you disclose you're really going to have to continue sharing the details and then it becomes something that takes on my life of its own. And that's not how I want to live!

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Thank you for responding. I really don’t want to tell anyone. I’ve been reading about possible side effects to radiation and/or chemotherapy and if any of those happen to me, I wanted friends/family to know why I might not feel like doing anything or going out or whatever. I’m probably putting the cart before the horse, but I like to be prepared.

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That's great planning.... Of course everyone is different in every person's situation is different and you should do what's right for you! I found it very positive to "fight through" those types of issues and thankfully I only had to cancel a few events due to effects of chemo, and I gave some kind of excuse 😉

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@lah115

Thank you for responding. I really don’t want to tell anyone. I’ve been reading about possible side effects to radiation and/or chemotherapy and if any of those happen to me, I wanted friends/family to know why I might not feel like doing anything or going out or whatever. I’m probably putting the cart before the horse, but I like to be prepared.

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I agree on not telling a soul either you get sympathy or people avoid you like the plage and this small gossipy town they would love to have founder to talk about. Since I am not a native of this area people hate me as I will not take part in there little local social life . I have better things to do than go out at nite gossip & get drunk. That is their life here Husband wanted to tell sister who is one of the biggest gossips. I said no but he hated not telling her If folks ask what is going on & why are you sick I just tell them I do not want to discuss it But some folks will not accept that answer so I repeat it & walk away . Or I tell them I have bubonic plague That gets their eyeballs to open Basically it is not their business

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This is not an easy answer because most people haven't a clue what to say or what to do.

See Job's less than useless "friends" in the book of Job.

I would tell those close to you who are genuinely helpful once you get a treatment plan in place. Having gone through like this before themselves can be helpful.

You likely will need some help with transportation and chores at home, so tell only those who are willing to help - whether it's make meals or transportation or doing house chores. And when you know, contact them and ask for what you need - don't make them guess.

You need sensitive people who can listen (not talk) and legitimately help in practical ways, not people who give you unsolicited advice - example: "My aunt had it and took this supplement". That's your medical team's role.

There may also be some self-righteous people who claim that you got sick because of some sin of yours. That's not Biblically correct. You don't need that condemnation.

In my case, I had my cancer and chemo during COVID, so with everything shut down I had no visitors other than immediate family. I relied strongly on my faith - prayer and Bible reading. Also I did lots of research about what I was going through - knowledge helps casts our fear. I also asked for prayer from people I knew who would be helpful.

Hope this helps.

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I'm brand new here but I'd like to answer. Why do you have to tell people the location of the cancer? If they don't know the history of your cancer, why not just say "intestinal" or "colon" cancer? You might feel more comfortable not divulging all your personal information. Good luck.

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Hello @lah115, that is a tough question. Everyone is different in terms of sharing information, but I feel that family members especially deserve to know about a serious illness. Adding a bit of comic relief with a joke might make others at ease to talk more freely. As a medical person, I was always willing to share medical information with family and friends, and would have hated hearing from them later "Why didn't you tell me?". Some people are just not comfortable with detailed medical information though, so a general discussion or colorectal cancer and basic prognosis and treatment plan is enough. My husband and I have found tremendous support from friends, family, and even acquaintances. Sometimes we will learn a bit of new information to research during a cancer discussion. I suggest gaining more information from your oncologist and then sharing what you know and plan to do with at least your family. You might be surprised at the response from friends who may have dealt with this with their family members or friends. All information you gain can be used to advocate for your own healthcare. You are the one in charge of your care plan and can educate yourself to make the best decisions for you. Are you being treated locally or at a regional cancer center?

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@sepdvm

Hello @lah115, that is a tough question. Everyone is different in terms of sharing information, but I feel that family members especially deserve to know about a serious illness. Adding a bit of comic relief with a joke might make others at ease to talk more freely. As a medical person, I was always willing to share medical information with family and friends, and would have hated hearing from them later "Why didn't you tell me?". Some people are just not comfortable with detailed medical information though, so a general discussion or colorectal cancer and basic prognosis and treatment plan is enough. My husband and I have found tremendous support from friends, family, and even acquaintances. Sometimes we will learn a bit of new information to research during a cancer discussion. I suggest gaining more information from your oncologist and then sharing what you know and plan to do with at least your family. You might be surprised at the response from friends who may have dealt with this with their family members or friends. All information you gain can be used to advocate for your own healthcare. You are the one in charge of your care plan and can educate yourself to make the best decisions for you. Are you being treated locally or at a regional cancer center?

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Thank you for your well worded response. I have been researching on my own, thankful for this site. I think I’m being treated at a regional cancer center- that’s on their name: Vince Lombardi Cancer Center, it’s part of the Aurora system who my insurance covers. One of my brothers is currently on hospice for bladder cancer with mets, he went thru the cadilac of cancer treatment with specialist from Minneapolis and yet here he is. He is a large part of the reason I’m reluctant to share my diagnosis- at least until I know for sure what my treatment plan entails.

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@lah115

Thank you for your well worded response. I have been researching on my own, thankful for this site. I think I’m being treated at a regional cancer center- that’s on their name: Vince Lombardi Cancer Center, it’s part of the Aurora system who my insurance covers. One of my brothers is currently on hospice for bladder cancer with mets, he went thru the cadilac of cancer treatment with specialist from Minneapolis and yet here he is. He is a large part of the reason I’m reluctant to share my diagnosis- at least until I know for sure what my treatment plan entails.

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In my case, I am the head of a school and my treatment had me off campus for part of most days for six weeks for radiation and then out for a month each following LAR surgery and then reversal 6 months later. I had to tell my community what was going on and received incredible support from folks. I also just feel more comfortable not having to have this part of my life be any more isolating than it already is. I feel like cancer has put me in an alternative reality that I have to live alongside my everyday life and that can be lonely. I do think it's important to wait for confirmation of the diagnosis and the plan so that you don't have to revise what you are telling folks. And everyone who spoke to keeping this private makes excellent points as well. I just didn't feel I had much choice in my situation and it has worked out ok for me, even as it's true that some folks simply don't know what to do with information like this.

My latest development is metastasis to my liver, after clear scans in January, so the journey continues with another surgery in June and liver targeted chemo for six months following that. I will not be sharing those steps broadly, but have with my family and closest colleagues.

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@happygrandpa

In my case, I am the head of a school and my treatment had me off campus for part of most days for six weeks for radiation and then out for a month each following LAR surgery and then reversal 6 months later. I had to tell my community what was going on and received incredible support from folks. I also just feel more comfortable not having to have this part of my life be any more isolating than it already is. I feel like cancer has put me in an alternative reality that I have to live alongside my everyday life and that can be lonely. I do think it's important to wait for confirmation of the diagnosis and the plan so that you don't have to revise what you are telling folks. And everyone who spoke to keeping this private makes excellent points as well. I just didn't feel I had much choice in my situation and it has worked out ok for me, even as it's true that some folks simply don't know what to do with information like this.

My latest development is metastasis to my liver, after clear scans in January, so the journey continues with another surgery in June and liver targeted chemo for six months following that. I will not be sharing those steps broadly, but have with my family and closest colleagues.

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Thank you for responding. I’m very sorry to hear of this latest development, I will keep you in thought & prayer.

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