I still can't believe it...

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WagMoreBarkLess
WagMoreBarkLess Member Posts: 9
edited May 2018 in Just Diagnosed

Hello all, and thank you for being here. I'm 48 and was diagnosed with ILC a week ago (3cm). I had genetic screening today, will undergo an MRI on Sunday and meet with a plastic surgeon on Monday. It's been a bit of a whirlwind, to say the least! I am still trying to mentally process everything and still can't believe that I have cancer. It feels so weird to say out loud, let alone type. I suspect many of you have felt similar, and perhaps still do. They day I found out, I barely shed any tears. But the next morning, on my way to work, I just sobbed and sobbed.

I still haven't told some of my immediate family members (mother and sister) because, honestly, I just don't know how. It feels like a heartbreaking thing to share and I know they will both worry so much about me (both live out of state. My mom is widowed). I was thinking I would tell them once I get my MRI results have have a better idea of the kind of treatment I can expect.

I'd welcome any of your experiences sharing your diagnosis with family members, especially those family members who are prone to excessive worrying/anxiety. (I am not, thank goodness!)

I also just welcome your experiences in general. How much do you share about your experience via social media? With friends? With family? With your employer and coworkers? This is unchartered territory for me and I have so much to learn... Thank goodness all of you amazing women (and some men!) have blazed a trail and are here to share your experience, strength and hope with the rest of us. Thank you for that. xo

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited April 2018

    Hi there WagMore. Sorry you have to join us but you will find much support and good advice here.

    Both of my sisters are anxious types, and out of town, so in the end I decided to tell them two days before surgery. I felt bad about it but I knew they'd need my reassurance and I was better prepared to handle that once I had a complete treatment plan to share.

    At work I told only a few discreet, supportive coworkers and I shared nothing on social media at all. My husband was my rock throughout and a good friend checked on me every few days. That said, everyone is different.

    When you get your biopsy results please share if you are willing; it gives us the details we need to best advise if you need us. And I'm an ILC-er too.

    All best wishes.


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  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited April 2018

    Wag, sorry you have to join our elite club. I too was diagnosed recently and had the same concerns. Everyone is different, but this is how I initially communicated the information to my adult children. I didn't have the emotional strength or energy to tell them each individually. so.....

    I had my diagnosis but I waited until I knew what my treatment plan was going to look like.

    I then sat down and wrote a letter to my children. I cried a bit whilst doing that, but sometimes we need our own space and time. I waited till Friday evening because they all work and I wanted them to digest the information before fronting their work mates etc.

    I took a photo of my letter, and text messaged it to them all at the same time and told them to text me back if they had any questions, and to feel free to visit or contact over the weekend. This gave us all some breathing space and they all got the info at the same time, so none felt left out.

    The kids later said they were thankful I did it that way as it allowed them their initial shock and grief in private with their own support networks, but they also went off and googled info - when we all caught up they had plenty of questions and were already quite knowledgeable about my cancer type.

    Hope this helps a little

    <HUGS>

    Jackie

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  • star2017
    star2017 Member Posts: 827
    edited April 2018

    I told my immediate family once I knew I needed the biopsy. My immediate family includes my parents, my siblings and their spouses, my husband's parents, siblings and spouse because I am close to all of those people. My mother was upset I hadn't told her the minute I felt the lump. She said she would've gone with me to the earlier appointments, but at that point I was still under the assumption that this was a lot of worry for nothing.

    Once I was diagnosed, I told my immediate family (who knew and were waiting for results) pretty immediately. The phone call to my husband (the first person I told who wasn't with me when I got the results) was...very hard. Tears and sobs in the doctor's office.

    As the diagnosis began to feel more like a reality, there were other people I wanted to tell, but I really didn't know how to start the conversation, and stumbled through a lot of awkward, difficult starts. Telling people was very hard for me even though I wanted/needed to share. I realized it's so easy to share good news, and so difficult to share bad news.

    The people I saw daily, well, I let them know because I had to. Others I called or set up phone times, but that was unusual enough behavior that they got worried before I said a word. And then there were people like old coworkers or college/HS folks who were good friends but who I just didn't see regularly. I wanted them to know but I just didn't know how to share the news. I'm not the type to post something like this on Facebook, though I don't have a problem with people who do. It's hard to share struggles and real life sometimes, and I say you should do it however it feels right/easy for you. For updates and new info I often just post in my family/friends text messaging groups. I can't always handle the phone conversations.

    No matter what, the news will be troubling, sharing may be hard, but the support will be immense. Far more than you realize. So many people from different parts of my life have reached out and offered support, kindness, laughs, insights, shared contacts, etc. Mere acquaintances as well as people with whom I had lost touch, etc. People will surprise you.

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  • dtad
    dtad Member Posts: 2,323
    edited April 2018

    WagMoreBarkLess...love your user name! So sorry you have to be here but welcome. My husband only knew until I had all the facts. Telling my adult children was definitely the hardest part of this process. However we all adjusted and you will too. May I ask you to make your stats public once you have all the facts. It makes it much easier to answer your questions appropriately. Good luck and keep us posted. We are all here for you.

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited April 2018

    I only told my husband until I knew the full picture. Waiting for all the tests results but the worst part of this whole experience for me. Next we told my adult daughters which was hard. After that we told people gradually. I was reluctant at first to share but I started a Caring Bridge journal and used that as a way to keep people informed so I wasn't asked what was going on all the time. Best of luck to you. It does get better.

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  • star2017
    star2017 Member Posts: 827
    edited April 2018

    just want to add that I have young children and waited until a day or two before surgery to explain to them that something was growing inside me that shouldn’t be and that the doctors would remove it. Before chemo I explained that I needed a special medicine to make sure the doctors got everything and no more would grow. I also warned them of the side effects. We tried to keep things simple and direct and only told them a day or two in advance when possible.

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  • Polly413
    Polly413 Member Posts: 124
    edited April 2018

    There are so many different stories on this forum about sharing cancer "news". Before you start telling people (other than family) give it some careful thought as obviously once told, the news cannot be taken back. As they say, you will find out who your real friends are and sometimes this is a hard and unpleasant experience. Essentially I wanted to get through treatment before people other than my very best friends knew. Wasn't clear enough about this preference and the news got to people that did not need to know and were not supportive. I have made up my mind if my cancer returns or goes to mets I will not tell it (other than my husband and my sister) until it is too obvious to ignore. Just my experience.

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  • swg
    swg Member Posts: 461
    edited April 2018

    I'm so sorry you've joined our club here. But there is great support and info on this forum..you're not alone!

    For me, I'm a very open person, so I posted on social media when I was diagnosed. But yeah..telling people is really, really hard. Some of my friends started CRYING. I actually had to comfort THEM.

    I was very lucky..mine was caught early and did not spread..however, I will say, the 2 months after my diagnosis and before my surgery was a roller coaster ride. My surgeon sent me for a breast MRI, which showed suspicious spots in BOTH my breasts, in addition to the tumor in the right that had already been diagnosed.

    I had to get THREE biopsies when all was said and done.

    Thankfully, the left one had a benign fibroadenema. The right one had a second cancerous tumor (9 mm).

    But you can believe, I cried for a week straight and was a mess before I found out it wasn't as bad as I feared.

    I wrote articles on Medium about my experiences, if you want to read them. (Under "Cancer Journal")

    https://medium.com/@sandrawade

    It can be a panicky time, and you may want to rush to get treatment but please..take your time and make sure you get the right medical support. That can be crucial. I almost stayed with the wrong doctor..I say wrong, because she did not send me for a breast MRI. She was just going to get a lumpectomy on the first tumor they found, without checking for more.

    Thank goodness a friend recommended Dr. Jennifer Simmons at Einstein. She knew what she was doing, and I was very lucky to be in her care. We took the time to make sure there wasn't anything else going on..found out there WAS..and then I was no longer qualified for a lumpectomy. Had I gone with the original dr..I'd be going back to get a second, possibly third surgery and who knows..the 2nd tumor may have grown in size since it was undetected by her.


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  • beach2beach
    beach2beach Member Posts: 996
    edited April 2018

    I only told my sister right away. She went through BC, and I know she would be there for me. I held off telling my parents and my kids until right before I had surgery. By then I knew pretty much the course of action I would be taking. I told 3 of my closest friends right before surgery. I never put anything out on social media. I never told co=workers, except for 3 of them.(work in a school and my surgery was during the summer). I just wanted to limit the amount of "Oh Im sorry,,etc" I know people mean well, I just did not want to rehash the story or for that matter see any posts. That's just me. 8mths later, I'm still ok with that choice. Sometimes I tell someone if it how relates to the conversation. I felt like I could move forward and past this easier that way.


    Everyone is different. You"ll be strong. You will get through this.

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  • Racy
    Racy Member Posts: 2,651
    edited April 2018

    Your post reminds me so much of myself as I was also 48 when diagnosed with ILC 2.2 cm in 2010. I also worried about telling people and in fact only my best friend and sister knew. I only told my other sister last year. It was a shock.

    I had a lumpectomy, chemo, rads and still take medication to this day.

    BC.Org is a lifeline for information, support and friendship. Treatments have advanced so much in the years since I was diagnosed. Hopefully, you will have cutting edge doctors. There could be more than one way to approach your treatment so don't hesitate to get more than one opinion and find doctors that you like and trust.

    Keep in touch and the members here will guide you through every part of the process.

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  • WagMoreBarkLess
    WagMoreBarkLess Member Posts: 9
    edited April 2018

    Ladies, thank you SO MUCH for your thoughtful replies...for your wisdom and, sadly, for your experience. As you all know, this is such a confusing, emotional, surreal time and I'm really trying hard to just take it one day at a time. I am so sorry that this ugly disease unites us but I am grateful for this forum where we can learn from each other and feel the strength of the community. Thank you....

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  • msphil
    msphil Member Posts: 1,536
    edited May 2018

    hello we are here for you I found the lump in shower was planning my 2nd marriage chose mastectomy over lumpectomy had my cry decided to fight the good fight called Fiancee at work then parents siblings n friend. My family are I are Very religious faith filled family so we prayed together n now this yr 24 yr Survivor Praise God.Stay Positive and keep HOPE. I did. Ms Phil idc 0/3nodes stage 2 3mo chemo before and after Lmast got married then 7wks rads and 5yrs Tamoxifen. God Bless Us All

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