Advice on telling others?
Hi, I am 51 and was diagnosed yesterday with Invasive Lobular Carcinoma. My head is still spinning. Trying to breath.
I am trying to decide when to tell the family, and thought those here may have some advice on what to say and timing. I see the Breast Surgeon next Tuesday, where we may have a bit more information to share. All I really know right now is that it is grade 2, multifocal. Part of me is thinking of waiting until after that appointment to share the new. The other part is worried the news may not necessarily be good news and it may be better to share what information we have so it's not totally over whelming.
I've two young adult sons in their early 20's. One has GAD, so I worry about his ability to cope. Parents are away in Palm Springs and aren't back until April 6th. Do I call them? I had been planning a wedding in the Niagara Region which doesn't look like that will happen and we have friends who have booked flights and hotels to join us.
We have share the news with some people - like work... so I worry about the news traveling a bit.
What does one say to put a positive spin on all this?
Oh man.....
Comments
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So sorry you are joining our group.
Telling people is really a personal decision. It does make some sense to tell people after you have met with the Breast Surgeon next week as she will have more specific information for you. On the other hand, you may want to tell some people just because you may need some support.
After I was told I had Breast Cancer by the Radiologist, we told our kids ages 12, 13 and 19 because I knew I wouldn't be able to hide my emotions totally and it was a weekend. They all took it as expected. We were honest with them about what was going on, what we knew and what we didn't know and encouraged them to ask questions and talk to us or other family members. Others, we told as we knew more information.
Once you meet with your BS, you will get more information about your cancer itself, more testing (MRI, CT, stuff like that), and will discuss what type of surgery is warranted. There will be more tests, and more doctor visits, but trust me, it will get better. There will be more waiting on results, but you can get through it. Once you know if you are looking at treatment after your surgery and you get that treatment plan in place, you really do feel a bit better. For me, a plan meant we were moving ahead rather than standing still.
A positive spin? Well, everyone will really take their cues from you. If you are positive about the fact that it was found and that you are going to rock treatment, it is easier when telling others. Trust me, you will still get "the puppy eyes" and will hear other people's horror stories, but just block it out.
You can do this!
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Hi bizzy and welcome to Breastcancer.org,
We're sorry you have to be here, but really glad you found us. As you can already tell from Mandy's response, our Community is a wealth of advice, support, information and love.
You're sure to get lots more responses from others offering their experience and advice, but in the meantime, you may be interested in checking out the main Breastcancer.org site's section on Talking to Your Family and Friends About Breast Cancer, for tips on who, when, and how to tell those you love and who love you.
We hope this helps! Please keep us posted on how things go.
--the Mods
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It all sucks, you do not need to try to put a positive spin on this. It is what it is. One day at a time. I also have lobular. I assumed it was caught super early as I was proactive with mammos & exams by Drs.
Until the surgeon gets in there & removes it, you do not know the whole story. Hopefully it has not gone into the nodes. If that is the situation, it is possible you will avoid chemo. My mass in the armpit ( axillary nodes ) was enormous. My primary tumor small. This is a roller coaster of twists & turns. Some nausea & you want off, NOW ! My best advice is to be selfish. Take care of you right now.
Telling others is another can of worms. People do not react like you think they will. Some go way over board, crying whenever you see them. Others are stoic, no biggie. Organizing an event that includes plane tickets & hotel reservations you will have to make a few decisions. I would wait until after your Dr. Appt. In the big picture, not a huge deal. I got tired & annoyed listening to others, about someone else's story with a different Cancer ....it never ended. Also, being diagnosised & receiving treatment, it's a new language. I was completely overwhelmed with all that was happening. I did not find this website until my last chemo infusion. I needed this place from the beginning, to learn & to be able to be honest.
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Hi Bizzyd, sorry you are here, but Welcome to a fantastic group! Everyone will help you, just ask and you will find the help you need. As far as telling people, I had a mixed bag. The people I thought would step up have sat down, and others have jumped on the bus and ride in the front seat. It's hard to say what they will do. Some you can tell on a need to know basis, some you won't tell at all. It depends on how you feel about it. It really is your decision who to tell, when to tell, and how much to tell.
Take someone with you to the appointments, nice to have extra ears. They will hear what you don't hear. They can take notes, and organize questions and answers. You will receive a lot of important info, keep copies of all of your tests and appointments. Put a notebook in your purse and take it with you. Handy to have to write down anything you think of. You will have a lot of info coming at you, but it will all fall together, and you will feel so much better when you know.
You have time to decide so don't rush it. Take care of you first, now is not the time to worry about others, be selfish. Relax, organize what you do know, and then decide. Come here often, we are all here for you, we get it. Take Care!
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Thank you all. This such a supportive place. I've been living in dread for 3 weeks waiting for the diagnosis. I'm thinking I don't want to put off sharing too long as I think that just leaves more to be anxious about... and I can control that. Going to stock up on verbiage like rocking treatment, and kicking c's but.
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I would wait. Let YOU get used to it before bringing other people in. Do you know the particulars of your cancer yet?
HOLE: God, if I hear one more cancer story I am going to scream. Also, while I appreciate the sentiment, I don't need to talk to my husband's coworker's wife who had it 5 years ago and probably has a different cancer, may or may not have had chemo, blah, blah. I appreciate people trying to be nice. Really I do…..maybe it doesn't sound like it..lol. (Getting port in today and can't eat anything all day so I am low blood sugar grouchy PLUS I have a low grade virus of some sort).
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Hi Bizzy and others,
I saw this new thread and think it is a great topic for newly diagnosed.
First, for those who have a newly diagnosed breast cancer, I am sorry you have to be going through this. I was where you are 3 years ago, and I remember these feelings.
This discussion board is a very helpful place to get information and to discuss the things that family or friends probably don't understand or don't want to hear.As Holeinone said, we are learning a new language.
I agree -- focus on you and don't worry too much about others. There is plenty of time for them to get on board. As others said here, people react so differently. The issue with waiting is that you have been dealing with the diagnosis for a few weeks and when your family and friends hear it, it is brand new for them.
Did you have a biopsy? If so you may already have some information available about your cancer. Staging does not usually happen until after surgery, but that is what family wants to know right away. It takes time.
Use this time to inform yourself and plan your appointments and any urgent matters or special outings.
I chose not to tell my adult kids until I saw the surgeon and got the preliminary diagnostic biopsy results. I told only two people at work and swore them to secrecy as I did not want my adult children to hear it from anyone else. And I told a best friend.When I phoned my kids I had information for them and a plan. I felt in control and was able to reassure them. Of course, we all reacted and discussed the unknown path ahead. My daughters came and took me out for a wonderful evening of dining, laughter, and memories. It all seemed surreal.
I immediately closed out my social media page because I am private and could not imagine my cancer being discussed in public. I went back online well after treatment was done.
I did not have parents to tell...so I cannot relate there.
We found our own way to deal with this...
And you will find your very own path.
Best wishes for your appointment and the decisions you will make.
Joan -
Hello bizzyd:
I am newly diagnosed as well. I didn't tell my husband I had felt a lump until I knew I had to have diagnostics. I told my adult children the day of my biopsy, in order to prepare them. I told others after my appointment with a bs. I have a wonderful family and many friends. Their support is invaluable.
The MRI showed a larger cancerous area than expected, 3x4 cm. I am meeting with an oncologist on Wednesday. All the waiting is not easy, but I'm keeping busy.
Wishing you and all here blessings,
MariaTeresaG
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hi, u mentioned ur mass was in the armpits? What were ur symptoms
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I got the call on Wednesday, and I've been worrying about this too. I have only a few people in going to tell, but my mother was the one I was most worried about. She's been having a hard time with depression already this year, and I just didn't want to add to everything.
What ended up helping most for me having a (sorta kinda) positive attitude before the conversation was taking to someone else first. I had an almost hour long conversation with my primary care doctor a while before I talked to her, and that really helped. I was able to get out all my freaking out and worrying and "poor me," so when I talked to her I was pretty calm. Something like that, just purging all the feelings so they're not so on the surface might help. There are helplines to call that might let you do that with someone that won't get overwhelmed. That's what I'm planning to do before taking to my sister.
I also had a list written out of things to tell her. They were actually mostly not super serious (how the geneticist and I geeked out together, how I'd already met the social worker, how I had to decide if I wanted to get a wig similar to my own hairstyle or go for something new), though I did discuss whether I wanted to try a different doctor, stuff like that.
I found that she was the one that asked the serious questions (stage, next steps), but I sorta left that stuff up to her.
I don't think there's any way to make it feel "okay," but I was really happy with how it went.
It's a super hard part (especially if you're like me and don't want to make anyone else less happy/feel burdened), and I wish you loads of luck with it. Hope this helps a bit.
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((((Hugs)))) Welcome!!
The choice is totally up to you, who you tell and when. You know the people in your life better than anyone else, so you go with what you feel is right.
For example, to this day, I've never told my father of my diagnosis. My mother passed away from Metastatic Breast Cancer in 2000. It devastated him. How in the world could I tell him that the same disease that killed his wife, has now attacked his daughter?!
I also never told my son. He was 11 at the time of my diagnosis and is now 13. He has a right to know his families medical/health history, so when he is grown, I will tell him....but for right now, I choose to keep him sheltered.
Some people can't understand why I made those decisions, but you know what? I could care less. I did what I felt was right for me and my family. I have no regrets and 2 years later, am still happy with my decisions. That is the only thing that matters.
So, like I said.....you know those in your life the best. And you know you best. Do what is right for YOU! That is the bottom line and all that matters!
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