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Topic: Who do I tell and when???

Forum: Family and Family Planning Matters —

A comforting place to discuss planning a family, fertility concerns, parenting children, or relationship issues with partners, siblings, or parents following a diagnosis.

Posted on: Oct 4, 2018 11:00AM

Seedlady wrote:

I was just diagnosed yesterday. I’m still learning more about it, but have been told it’s grade 1. Do I need to tell anyone? Even being grade 1, I am pretty upset about the diagnosis. I am really trying to hold it together. Every time I think about telling my parents or kids, I start to lose it. Is it horrible to not want to tell people yet?

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Oct 4, 2018 11:08AM Aussie-Cat wrote:

Seedlady, I'm so sorry about your diagnosis. I guess you're in shock and it could be good to wait a couple of days and then see what you feel like. I wouldn't wait too long to tell your family but if you need time to digest it first, that's fair enough. Please be kind to yourself.

Surgery 6/19/2018 Prophylactic mastectomy: Left, Right
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Oct 4, 2018 11:10AM gb2115 wrote:

Hi Seedlady---sorry to hear about your diagnosis. But welcome to BCO.

Tell them when you need to. I don't think it's horrible. You'll want to tell them eventually, but it's ok to give yourself time to grieve and process what's going on, and perhaps get more information. Because they're going to have a lot of questions.

Some questions---do you have a surgeon or oncologist appointment set up? Do you have a nurse navigator to talk to? Do you have any other support at home that already knows, or are you the only one that knows what's going on?

If it makes you feel any better, grade 1 is better news than it could be. More pathology should follow, which will help formulate what kind of treatment you might need.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Oct 4, 2018 11:16AM - edited Oct 4, 2018 11:55AM by SpecialK

I found it helpful to wait to tell other family members until I had my initial appointments and had a treatment plan. That way I had answers to any questions that came up as I informed them. If you are hesitant to share right now I think it's a good idea to take a moment to process your new diagnosis so that you feel more ready to discuss with others who may have an emotional reaction.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Oct 4, 2018 11:29AM Seedlady wrote:

I do have a surgeon and surgery is scheduled for the 10th. I don’t know what a nurse navigator is - sorry. I have been talking mostly with my OBGYN, and she’s been great!

My husband knows and my best friend (who lives hundreds of miles away 😔), but they are great support, too.

I just don’t know what to do with everyone else. You’re probably right that I need a couple days to think and process this. But can I ask your advice?

I love my family. I do. But I don’t know if I can trust them. I can imagine how horrible that sounds. I’m sorry. But after loosing 2 of my younger siblings (one to leukemia and one to motorcycle accident), I had to be the strong one. I had to handle most the arrangements for my brother because my parents couldn’t handle it. I don’t know if I want to be the strong one this time.

I feel horrible thinking and saying these things, but I just don’t know. I’m naturally a very private person. Right now I feel so much more anxiety when I think about anyone knowing and dealing with the questions and comforting them. I just don’t know.

But thank you so much for talking with me!

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Oct 4, 2018 11:34AM Seedlady wrote:

SpecialK and Aussiecat, thank you so much for the advice. I think you’re probably both right. I need to be ready to tell. I just don’t want to make people angry

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Oct 4, 2018 11:44AM Moderators wrote:

Seedlady, we too are very sorry for what you are going through, but glad you found BCO.

It sounds like your family has had to go through a lot of trying times of loss and grief. As other have already suggested, it could be easiest to wait until you have a treatment plan in place, and then you can be more clear about your situation, needs, and how they can help. You'll know with more time, when and how to tell them. No right or wrong here Medicating

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Oct 4, 2018 12:04PM pupmom wrote:

When I was first diagnosed I told my husband, of course, and children. But all you can tell them at that point is that you have bc. Final staging won't be complete until after surgery, and further scans, if indicated. Best wishes!

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Oct 4, 2018 12:21PM Seedlady wrote:

I can’t thank you all enough. This is exactly what I have been needing - to know I’m getting advice from people who have / are feeling the same way. And to benefit from your experiences. Thank you!!

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Oct 4, 2018 12:27PM - edited Oct 4, 2018 12:27PM by WC3

You tell who you want, when you want.


Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Oct 6, 2018 10:22PM Dani444 wrote:

Seedlady, I am sorry you are dealing with this, I struggled in telling my family in the beginning too. It was definitely a help to hear from others on here about how they did or didn't tell the people in their lives. I know when I told my parents I asked them to not share it with anyone else, I wanted to control the best I could who I shared this information with. I will say this, it was a relief to have the anxiety I was having about telling them gone after I finally did tell them. Do what you are comfortable with. A good piece of advice I got on this topic was to have a sort of spokesperson for you. Maybe your husband or a close friend. That way when you do want to share about upcoming procedures, or information you can relay it once and then they can share with the people you choose. I wish you the very best.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 6, 2018 10:48PM NotVeryBrave wrote:

I'm sorry that you find yourself here. It's hard enough dealing with the diagnosis. Trying to figure out how to tell and when just adds to the difficulty.

You know yourself and your family best. There's no right or wrong answer. You get to come first right now so whatever will work best for you is okay.

I told my parents over the phone after I had met with the breast surgeon. I knew it would be harder to talk in person. It was hard enough on the phone.

My children were all school age and I told them after dinner that night. It was harder in some ways to not be able to gear it for each age but easier to get it over with at once. I gave them lots of hope and times to ask questions

I didn't tell a lot of other people. I made it a point to say that it wasn't a secret and they could tell others - I just wasn't up to repeating the info. It gets very tiring.

Good luck with everything.

TCHP x 6 with pCR. One year of Herceptin. DTI pre-pec surgery. Quit Tamoxifen after 3 months. Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/18/2016 Perjeta (pertuzumab) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/9/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 7, 2018 01:03AM Luckynumber47 wrote:

Seedlady, this is the time to be very selfish for yourself. Don't tell anyone unless you want to and feel like they can help you.

My husband knew right away but we didn't tell our children until after my surgery ( mostly because my daughter had just had a baby after a very difficult pregnancy and I was trying to buy time). We told my husband's siblings and they really didn't care. They had plenty of issues of their own. I told my sister because my diagnosis made her high risk but she wasn't very sympathetic.

I don't regret waiting to tell anyone and if I had it to do over again I'd probably tell even fewer people. What seemed like the end of the world when I was diagnosed is rapidly becoming a distant memory and most people just don't need to know.

Keep in mind, once you tell someone, you can't untell. Put people in circles. The closest circle is people you must tell, next circle is people you probably want to share with and the outer ring is people you might want to tell but haven't decided. Then you can share on your own terms.

Best of luck with your upcoming surgery and treatments. I hope everything goes very smoothly.

Sending hugs,

Lucky

My avatar is a Blue Footed Boobie. Cracked me up. Dx 2/15/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/16/2016, DCIS, Right, <1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Surgery 4/5/2016 Mastectomy: Left, Right Hormonal Therapy 5/16/2016 Femara (letrozole)
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Oct 7, 2018 08:27AM Ingerp wrote:

I waited several weeks to tell my kids both times because I happened to have visits scheduled and wanted to tell them in person. I thought it would be helpful for them to see me—see that I was okay. I also really downplayed it—“I have a little breast thing going on” and then, “I have another little breast thing going on, slightly more serious than last time but I’ll be fine.” I don’t see the point in scaring people unnecessarily and chances are we’re all going to be fine. I also didn’t announce it widely—just family and a few close friends. I was going to try not to tell my mom at all this time until I realized I wouldn’t have any hair the next time I saw her. ;-)

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Oct 7, 2018 09:08AM Runrcrb wrote:

seedlady,

How are you doing? What type of surgery do you have on the 10th? And how old are your children? I have a friend who never told her children (elementary school aged). I told mine after diagnosis and before any surgeries (post college age). I told my family (parents +siblings) via email with follow up phone call to my parents because in email i could control the messaging. Same for my inner circle of friends. At the time of my diagnosis my husband was in the hospital undergoing a stem cell transplant. The biggest request i made of every one for both of our illnesses was to keep it off Facebook. I didn’t want to deal with FB posts and people far removed from my day to day.

It’s totally up to you and what you need. Private is good but don’t feel you need to be a hero. If you want help, ask for it. I had a friend who came with me to all doctor appointments while i was learning about treatment options and she took notes. I had already set up an account on Caringbridge to manage communication for my husband’s illness so i added mine to that about a month after diagnosis. I flat out refused to answer emails asking for updates - i sent people to caringbridge.

It took about a month from diagnosis until plan defined and another month before treatment (first surgery).


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap
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Oct 7, 2018 12:00PM Seedlady wrote:

Dani444, thank you so much! That is great advice.

NotVeryBrave, thank you! I love hearing other women’s experiences. It helps me feel okay. I’m pretty nervous about saying it the first time, let alone repeating the news over and over.

LuckyNumber47, I’m so sorry that you didn’t get much support when you shared the news. I wish people understood how difficult it is to say it out loud. I love the idea of “circles”. That makes so much sense to me. Thank you!!

Ingerp, thank you! I agree. The last thing I want to do is scare anyone.

Runrcrb, I’m doing better now. I’m scheduled just for a lumpectomy, but depends on what they find. My daughter is 23, divorced and trying to get a fresh start, my son is 18, serving a mission in Australia (that’s going to be a tough one 😔). I love your email idea. That would be a great way to control which circles (thanks LuckyNumber47 😊) hear what information. And I totally agree with the FB thing. I hope they can respect my wishes.

Everyone, I can’t tell you how much your messages, stories, advice, and encouragement has helped me. I have a very supportive husband and awesome best friend, but there’s something very personal and special about sharing with people in the same boat. I really can’t express my appreciation enough!! And I wish you all the same wishes for luck and happiness. Please continue sharing with me.

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Oct 7, 2018 02:03PM Denise-G wrote:

I started a private FB group page with people I invited only. It was helpful as I could communicate simultaneously and not keep repeating myself.

Good luck with how you choose to tell your story to family and friends. I find that it goes with diagnosed women's personalities. Those who like privacy and those who prefer to be public. Both ways are fine. Do what makes you feel the safest.


www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/23/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/27/2011 AC + T (Taxol) Targeted Therapy 2/28/2012 Herceptin (trastuzumab) Hormonal Therapy 10/11/2012 Arimidex (anastrozole)
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Oct 7, 2018 09:12PM sbelizabeth wrote:

This is another analogy of circles. Comfort in, dump out.

You, the lady dealing with breast cancer treatment, are in the center. Certain members of your family, certain friends, are in the circle close to the center. As the circles get bigger, they include other not-as-close friends, other family members, colleagues at work, etc.

This analogy illustrates how comfort goes IN, dump goes OUT. When you're having conversations with others about your breast cancer, YOU aren't the one providing comfort to them. Such as, "please don't cry, office colleague, I will be fine."

It can be hard to remember early on, but you're not responsible for reassuring, soothing, comforting others about YOUR diagnosis and treatment.

And don't exhaust yourself or feel obligated to provide individual updates. Or answer prying, nosy questions. You get to do what works best for YOU.


Illustration by Wes Bausmith

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Oct 7, 2018 10:27PM beeline wrote:

Hi Seedlady, just wanted to chime in here because I understand not trusting your family. I haven't told my mother and probably won't, at least not while I'm in active treatment, because I can't trust her to keep it to herself and I don't have it in me to deal with the drama she will create around it.

As for others, I didn't use the word cancer with my kids (5 and 7) until after surgery when I knew I would have to have chemo. Until then I just told them I had to have surgery for a sickness in my breast (they were going to notice it had gone missing). I ended up telling a couple of friends through my daughters' school and they have been our biggest supporters to date. It makes me think I should maybe be more open about it, but I have kept it pretty "need to know" until now. Bottom line is that it is totally up to you who you tell and when -- and who you don't tell!

American in NZ. Dx’d at (only?!) 42 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol)
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Oct 7, 2018 10:45PM Palsomine wrote:

I understand! I, too have always been the strong one. I am a super private person. I waited to tell my adult kids after I got the biopsy results. I needed to focus on what I needed, and just couldn’t deal with people dealing with my diagnosis. I eventually told a few close friends, and asked them to keep it private. For me, I needed to navigate what was happening and what was coming up. Just take your time and do what you feel best for you. I gave info to people at my own pace. It is a very personal journey. You’ve come to the right place for support. Your cancer care center or breast surgeon is usually connected to a nurse navigator thathas training to help you with anything and everything you will need. You can call her with problems or questions and she can make calls for you and find answers quicker than you can. It is tough when the rock of the family needs support. You are not alone!

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Oct 7, 2018 11:02PM ceanna wrote:

Seedlady, gentle hugs for this difficult period. I was glad I only told a small handful of people, and most of them were after the fact. I wanted it to remain private information and some people never cooperate if you tell them not to tell others--so I never told them, ever. I didn't want to receive pity or "the look" you can see from others, or all the terrible stories others want to tell of someone who.... I told my siblings for the sake of their risks and for prayers, and for a ride home from out-patient lumpectomy. The next day I resumed normal activities and didn't tell anyone. I never regretted that decision. Depending on your surgery and treatment plan, most people need never know. You can't unring a bell! You can always ring it later, again, if that is your choice!! All the best. Remember, too, if you decide to say little to others, this is a publicly searchable forum, so if you reveal private information here, someone may run across it in a search.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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Nov 2, 2018 10:19AM Anxiouslady wrote:

I, too has a 17 yrs old daughter who is away in college. I already had a surgery and about to decide on a treatment plan. Chemo will definitely be in the table. I haven’t told her, I don’t want to worry her.. I don’t know how tell her but I need to tell her before going on chemo.

Dx 9/25/2018, IDC, Left, 2cm, Grade 3, ER+/PR+, HER2- (IHC)
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Nov 2, 2018 10:41AM Seedlady wrote:

Anxiouslady, I totally get how you are feeling. I had all the same feelings. I just told everyone this past week. It was hard, but a huge relief, too. I'm sure there are others who would have much better advice than me, but what worked best for me was to be honest, but gentle. Try to be as positive as possible, but don't be afraid to share your feelings if you think she's ready to hear it. They are a lot smarter and more intuitive than we think sometimes. Best of luck and hugs to you!!

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Nov 2, 2018 10:47AM Anxiouslady wrote:

Seedlady, everyone knows in my family except my daughter. Me Iask how did you tell your 18 yr old son and how did he react?

Dx 9/25/2018, IDC, Left, 2cm, Grade 3, ER+/PR+, HER2- (IHC)
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Nov 2, 2018 10:54AM Seedlady wrote:

Anxiouslady, I told him I had been diagnosed with cancer, but we have a plan. I told him that I feel very positive about the plan and that he did not need to worry. I did share with him that it was scary, but told him again that I was feeling positive about this. He had some questions, but mostly asking how I felt, what had been done, and what was the remainder of the plan. For my situation, I felt that it was important that we talked about him and other normal life things, too. He seemed to do pretty well. My daughter was pretty similar. It was important for them to hear me talk about other things so they could see that I was okay. But it's such a personal choice really. You know your kids better than anybody. Trust your heart and your gut. You'll know what to do.

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