First of all, I am so grateful for finding this forum...what a God send! All of the questions I have about this diagnosis are answered or addressed somewhere on this page. God Bless all of you.
Here's my question:
My husband and I have no children, my father is a widower, my only sister died from Breast cancer 2 years ago, my husband's parents are in their 80's, his siblings are busy and far flung....so, aside from the small group I have already shared my diagnosis with....do I really need to trouble my/hubby's family with this news?
It seems selfish and unnecessary ..
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Iwasborntodothis
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My wife and I haven't shared with most people. Key family and friends know and that's enough. I think it is more about what you are comfortable with. If you don't want to tell anyone yet then that is exactly what you should do.
Thinking about your families past experience with your sister, I understand your not wanting to worry or upset them. This disease puts you on the outside yet somehow makes you responsible managing other peoples feelings. But having a secret could be hard long term.
It all sounds very early and you need to get a in touch with your own emotions first. Then you can evaluate how to manage the family when you have decompressed a little.
I must say though the longer you leave it, the harder it becomes. My wife is 'well' so we have no need to upset the apple cart, and we have two small children, so our focus is to keep things as normal as possible, for as long as possible for them.
You sound intuitive so I would go with your gut. Your husband may benefit from somebody to confide in. I have one friend I can speak openly to (besides my wife) and it has been invaluable in the early days of dx.
Wow. That’s a hard call and a personal one. How do you feel about not telling them? Do you have good friends who can support you emotionally? Do you think this news would present a real adversity to your dad and in laws? How close are you to your husband’s siblings? Does your husband have people he can share with and get support?
My sister's illness was so bad..she had inflammatory that spread to her brain..I just can't do that to my father. She had two boys (18 and 22) - I can't bear to tell them either.
My husband is my concern. He is a loner. I think he should tell his sister as they are very close, but I need to leave that up to him.
We are just a few weeks in so I am trying to take each day and see how it goes.
oh bless you. Welcome to the board - I'm so sorry you have to be here but like you say, this group is a real support network and you can get some really good advice. It's a tough call and one which only you and your husband can make. I can see that others on the forum say the longer you leave it the harder it will be and I agree to an extent, however, it's very early days and I think maybe you could let your emotions run their course for a little while longer and get things clearer in your head - it will come, it just won't feel like it right now. When you've got to grips with it a bit more, maybe then you can make a more rational decision that suits you and your husband.
I'm glad you've found the board but sorry you had to - reading your post takes me back to my diagnosis and this same struggle. My husband and I had a lot of talks about who to tell and when. It really comes down to, in my opinion, what you need and what your husband needs. Having people to talk to is important. We also kept a small circle until we had something to say - meaning knowing more about my treatment plan and what would happen. Telling people the diagnosis without info was just going to lead to too many questions we didn't have answers too and a lot of emotion. Because I was working and went straight to chemo I had to tell people at that point as I had to take a leave of absence. One other thing that might be helpful - my nieces lost their Mom to this disease so telling them was something we really took our time with - because they live far away I did not have to tell them while I was on chemo and I kept it off social media where they could see. They did visit me and I knew I had to explain my extraordinarily short hair so we decided to tell them, let them know I was on treatment, that if there was something they needed to know in the future we would tell them and we'd answer any questions any time but other than that it was not going to be part of our conversations. That has worked so far - they ask if they want to know something and occasionally we update them if we think it warrants.
Sandra says it best - "do what you think is right" and I would add "for you and your husband"
When I was first diagnosed with stage 1 many years ago I never told my mum as I know she wouldn’t have coped ( my sister died in a road accident) I didn’t want her to think she might lose another child
I think you’re unselfish and kind to not tell them if it will upset them...what’s the point?
My mum died never knowing and I’m glad
Barb xx
I’m with you Sandra. When the drugs start to fail, I’ll share beyond my very tight circle. I had two other BC diagnoses before MBC so I learned a lot about how folks react. It is better for me this way.
you all are so amazing! So grateful for this site and for all of you
Hi,
I'm glad you have found this site. I hope you will find it helpful and supportive.
It is really a very personal decision about sharing your diagnosis with friends and family. No one can answer that for you.
I told friends and family of my diagnosis last year, but I did not mention that my disease is metastatic. When asked I let them know that my treatment is ongoing and that I am currently doing well.
But on a recent trip to see my in-laws my husband told one of his sisters (who also has breast cancer) and she then shared it with their oldest sister. While my husband was out golfing, I was visited by my oldest sister-in-law who wanted the full scoop. I don't lie, so I told her everything. Now it's out and I can't take it back. I would have preferred the news to have remained private, but I doubt whether I will have to face too many repercussions, as I live far away from my in-laws and I don't see them very often.
Welcome to this board as I know you will appreciate the support and advice ...as I indeed have . I too am generally a private person and have only told my brothers and my brother and sister in -laws ( as well as my husband and 20 year old daughter , who is away term time at university). My widowed mother ,who is in her mid 80”s and lives alone under an hour away from me , does not know , after nearly 2 years (ibrance/Letrozole) despite me taking her out once a week ...and I have had both a mastectomy and breast reduction! I decided early on not to worry her but obviously if I ever have chemo and lose all hair and it becomes more obvious , then I would tell her . Do what you are happy with now , as you can always change your mind later . Take care x
Welcome to this group! I find meaningful and uplifting sharing here. It is very difficult for family and friends to understand this path we are on. When I first started down this journey in 2000 I told everyone. It would have been difficult not to. I still had teenagers at home and a job commitment that I knew would be affected. That was stage 1. In 2015 I was diagnosed with stage 4. I didn't want everyone to know, only people very close to me. Next thing I know, I started getting Facebook messages and texts from people I DIDN'T want to share my diagnosis with. My sister "blabbed" my diagnosis on Facebook!!!!! I am such a private person. I was mortified. So.....if you share your diagnosis WITH ANYONE there is always the possibility that whomever you tell will share with someone else...... My reasons for not wanting to share the stage 4 diagnosis included not wanting to be treated differently, especially pity. And what "Baseface" said is so true, this disease puts you on the outside and you DO find yourself managing other people feelings. It's just added stress that adds to everything that you are dealing with and trying to work through.
You will know if and when and with whom you are ready to share with.
Sister - that’s a good point about finding yourself managing others feelings when your focus needs to be on you and stress avoidance. With the close circle I shared myBC news, even though some cried, it was because they didn’t want this burden for me.
I am aware that other people — even nice friends — would lose it and I’d be the comforter. I need the comfort. When an understanding friend asks, I say it helps me hear about their loving, funny anecdotes about us. It grounds me and makes me feel less untethered. One of my dearest friends remains supportive.. Early after the stage 4 diagnosis, she said so sweetly “you know how important you are to me.” I replied I surely do but it’s helpful to hear why. I need to hear how I’ve affected my friends and to know I’ve made a difference. She kindly talked about our shared memories and how they’ve influenced her life. That timeless connection comforts me. It reminds me of the enduring power of love and that I won’t walk this path alone.
That must have been quite hurtful when your sister shared your diagnosis on Facebook. She should have consulted you first before going public like that. It sounds to me that she was looking for comfort and support from others, so it may have been more about her, than you. That does not excuse her behaviour though, but it could explain why she acted the way she did. With my husband, I think he was probably backed into a corner. His sister who is also dealing with breast cancer probably asked him what stage I am and he would not have lied. Then she told others. So once one person knows word will get around.
Yeah - the Facebook thing - my biggest fear. My sister's death was on Facebook before I could even tell close family. I am not on Facebook and the people I have told have been sworn to secrecy. I also need to get my business sold so I can enjoy life and if this got out, in our tight knit business community, the sharks would come quickly.
You sound like a very caring person. Only you know this family well enough to determine if the news would be troubling to them. Personally, I am getting so
Much love and support from the family I have told that it is surprising to
Me. I am comforted knowing they care. Some of them have been distant in the past and their concern has been an encouragement. You will make the right decision I know.
I’m in agreement with many others here. I have told very few people. Only my close inner circle of friends and family. Why? Because people hear Stage IV and think you are immediately dying. The reality is that we live with this chronic disease that has a much higher life expectancy then even 5 years ago. Some are living 5, 10, 15+ years and new medical breakthroughs are happening all the time. Most people don’t understand MBC nor do they know how to deal with it. I don’t expect them to.
Well intentioned friends/family either want constant updates, which are exhausting to provide (especially when it is more like a roller coaster experience) or they get unusually quiet & back away from your life because they don’t know what to do, so they do nothing.
Both responses are difficult for me to deal with. I crave “normalcy” as long as I can have it. When I’m on my deathbed (many years from now, God willing) I will tell more people.
Everyone has to make the decision that is best for them.
Praying for hope, health & enjoying the moments in each day ❤️🙏❤️ 🌈🤗
Sorry you need to join us here. You are at the beginning and emotions fly all over for a while. Not to say anything now seems wise but it does get harder with time. I am in the fourth year with mbc- I told my children and close siblings-I didn’t talk about it a lot as I went through different treatments. Here n then when treatment became an issue.
Now I am at port/iv treatment so I had to tell them few days ago. Just said what the treatment will be for 3 months and if it fails, chemo and I want wigs!!!😂🤫they reacted to that more than the rest.
Every time it changes I go through facing death again and making peace with it again. I think of them and my grandkids and my legacy. I have to or I can’t handle what they feel. Unfortunately they are part of this and each has their own way of coping. I knew I could not shield them forever- it seems to have come so fast.
As time goes by, I don’t foresee saying anything to anyone I haven’t told already. From the beginning I decided who and what-I am open but private and I do not want anyone’s pity or change because of it.
My mom is alive but she does not know it came back- she went through the first bc in 2009 with me. Broke her heart. She has Alzheimer’s now and that protects her. I want it that way- no need for her to know.
Keep us posted on how you are doing- we are all here for each other beautiful sister warriors♥️♥️😘
I also did not tell my mother when my cancer came back a stage IV. She was in a nursing home and had dementia and was declining herself. I just didn't want to add to her stress. She died in January and never knew my cancer had returned.
Your decision was the same as mine. My mom just died in August, at age 96. Over the two years since my MBC diagnosis, I never told her. We were very close; and I knew it would just haunt her until the day she died. Bless you! XXOO
My sympathy on the loss of your mother. I couldn't tell my mom either, I imagined on her "good days" she would lay there in that nursing home day in and day out and worry. Then she was in her own world during her last months and I am not sure she would have understood at that point anyway. I was diagnosed with stage 4 in Feb 2015, she passed in January 2019 so I kept it from her for 4 years, that was not always easy to do.
I know what you mean. There were times that I wanted to tell her because I knew that she feared death. I felt that if she knew my cancer had returned, it might lessen her fear--thinking that I'd be joining her sooner rather than later. In the end, I just worried that it would crush her spirit even further. Bless you!! Linda
I don't think it's selfish at all. But I do agree with you; if you don't have a close connection with these relatives, I see little benefit to sharing your health news. God bless you!! XO
I shared with family and close friends but other than the very closest, I shared via email after I had enough information that would satisfy them. I told them I would be glad to have them come visit...I was having lots of pain from back lesions but I didn’t want to hear them come to cry, but to entertain me. I very strongly said I wasn’t up to consoling them but I also did not need consoling because I was tough and could get through this. I was nice about it though! I had lots of guests and lots of laughs with them, no pity whatsoever. They ask how I’m doing but in the same way that they would ask if I didn’t have this disease. I’m glad I don’t have to hide anything. My grandkids are young, ages 4, 6, 6, and 8. The three oldest know something is wrong and they have to be gentle with “Mimi”, but they think it is my back. I still babysit them all but not for overnights anymore! I probably will again when they are a little older.
Anyway, I’m sorry you are here, but welcome to our very supportive group. Lots of opinions but we know everyone has to do things their own way. It’s good to hear all the options and how they worked out. Elaine
I agree to go with your gut. And you can always change your mind when it feels appropriate.
A cancer diagnosis is a lot to process for oneself, and I am very private-- as you and your husband may be too. If you feel better not worrying others, then that is the right choice. But you will likely need moral support so perhaps down the road let friends in so you have someone to lean on when you need it.
I did tell my brother as he lives in the same town, but have not told my in-laws who are in the UK. They are in their mid 80's, my father in law's brother just had a nasty stroke, my mother in laws brother has leukemia. My sister in law's husband has some sort of chronic pain ailment... My poor mother in law has a terrible stress induced skin condition as it is, so I figured it is best not to worry anyone. I look and feel healthy, and was just diagnosed so I figure I have time before everyone needs to know.
Sending you hugs. There are so many decisions beyond just treatments to be faced with this diagnosis. One day at a time!
Hi there and welcome.
You will find a lot of support from the lovely ladies on here, throughout your journey.
I am 6 months in from diagnosis, and a relative newcomer to this site.
Initially I only told my closest colleagues the whole facts. They have become my closest friends. They treat me perfectly normally, but I know they are all keeping an eye on me. I am glad they have each other to talk to as well, because once you tell people - they also have to live with that knowledge, and they need to talk through things.
At work I can lead a relatively normal life, and have some hours where I forget I even have this disease.
You will find the first few months a complete emotional war. Don’t worry, we all go through it. I felt I needed that time to sort my own feelings out before telling other people.
I have told my parents and my son that I have cancer that is treated as a chronic condition. I thought I would tell them more when I deteriorated.
However my parents kept on saying to me “you are going to beat this Clare”. So I told them 2 weeks ago I am incurable but can live with it.
I still don’t know when I am going to tell my 13 year old son. That is a question I am planning to put on as a post here soon, and to get some counselling for.
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