We are 228,767 members in 84 forums discussing 159,856 topics.

Help with Abbreviations

Topic: Struggling with telling friends & family

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jun 24, 2019 10:39AM

55cellos wrote:

I am really struggling with telling friends & family that I have breast cancer. It was hard enough telling my kids. How have others handled this? I realize they would want to know and there may be a genetic component (inconclusive genetic test results; BRCA1 variant) so I do need to let some relatives know but haven’t been in contact with them for years. I live pretty far away from family & really don’t wan to have visitors or flowers or even make anyone feel like they need send a card.

Log in to post a reply

Page 1 of 1 (14 results)

Posts 1 - 14 (14 total)

Log in to post a reply

Jun 24, 2019 11:03AM - edited Jun 24, 2019 11:04AM by PatsyKB

55cellos - I can only speak to what I chose to do but for what it's worth: Last year when I was diagnosed after 43 years of weirdo mammograms/MRIs (I'm high risk) and multiple biopsies with abnormal but not cancerous results, I was insulted that my body had finally given in to cancer. Irrational, yes. Plus I had been really health conscious for years and knew I'd get the "What? How did you get cancer? You do everything right?" questions. Also I'd had full genetic testing (32-gene panel; negative for everything including My cancer).

I'm known for being honest and straightforward but I'm also private. So what I did was to call our daughter and then send an email to a very small limited carefully chosen circle of very close trusted friends and family members - less than 10 in all - and SWORE them to secrecy until I gave the go-ahead. I also made it CLEAR that I wanted no recommendations or suggestions or breast cancer stories unless I asked for them - and I only asked one person for advice and that was a close relative who had Triple Negative a few years ago. I told them that if they started to tell me one of those "Well, my sister's breast cancer..." stories, I would stop them in mid-sentence. I needed to make my decisions in my way. The other thing I told friend was "NO SAD FACES AND PROLONGED HUGS when you see me." I live in one of those towns where everyone picks up on everything and I didn't want to start something!

My aim: I needed privacy and safety in which I could investigate, learn, and choose my cancer team and treatment plan. Once I had all that in place, THEN I would start letting the word out, not with an announcement (I hate that) but with a few private emails to other family members and mentions in conversations with friends as appropriate. Not "Guess what...I have cancer!" But rather, "I won't be available for that date because I'll be having cancer treatment..." then continue from there as needed.

The other thing I did was not to try to inform everyone in the family - I just let key people know that they could let other relatives know.

It paid off - I had friends to talk with; I wasn't bombarded with useless advice and questions and I had the confidence and empowerment and privacy I needed with which to make my decisions.

I hope you are doing well and are feeling confident as you move forward. Keep us all posted.

“Ring the bells (ring the bells) that still can ring Forget your perfect offering There is a crack in everything (there is a crack in everything) That's how the light gets in.” -Leonard Cohen Dx 4/10/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR-, HER2- (FISH) Surgery 5/7/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 5/23/2018 Multi-catheter: Breast Hormonal Therapy 6/12/2018 Femara (letrozole) Surgery
Log in to post a reply

Jun 24, 2019 11:17AM edj3 wrote:

I'm pretty private also. Telling my family, especially my sons, was very hard and very emotionally draining. I did it over a couple of days and after that, sent links to my blog (which I've had for 11 years) with any updates. That helped a lot.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jun 24, 2019 11:50AM GenX wrote:

For the BRCA testing, your gene (spit) sample is the most important component. You fill in what you know about your family but they know you're not going to have all of that info, so I wouldn't sweat that part too much.

I'm 43, very fit, childfree by choice, hard-charging & I knew it was going to come as a shock that I had cancer. I opted to tell my very closest, closest peeps in person (husband, parents, brother). I then crafted an email with enough info to be informative but not overwhelming, first acknowledging that getting that kind of info via an email wasn't ideal but that I wanted my close peeps to know what was going on without having to repeat it a ton of times. I blind cc'd everyone on the email so no one could mistakenly reply all. I have continued with the email updates as my treatment has progressed & the folks on the emails are hugely appreciative of the updates.

I'm a straight-shooting, pragmatic, full-disclosure gal so I told my peeps it was not a secret but that a world wide broadcast was not something I wanted. Luckily all of my closer friends & fam know me well & I've only gotten the "so sorry" sad shit from people who don't know me very well. My peeps have taken what they know of me & they've responded with a get-after-it, conquer-this kind of reaction. More than a few have said they feel a little sorry for the cancer, lol. Which better be gone by now, btw, since my surgery was 3 days ago.

It's your body and your diagnosis and you can choose to handle it however YOU want. There really isn't a wrong way, in my opinion. Do what feels right for you.

Dx at 43, found the lump during self exam Dx 5/30/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 6/21/2019 Lumpectomy; Lymph node removal: Sentinel
Log in to post a reply

Jun 24, 2019 11:50AM - edited Jun 24, 2019 11:50AM by happyperidot

55cello, I understand your struggle. This is a very scary disease and, with so much to learn after diagnosis, it can be emotionally and intellectually overwhelming. I think most people who've been through this agree that you get the option to do everything your way and on your schedule. If you want to the be messenger, fine. If you want someone else to do it, fine. Phone call or email, it doesn't matter; just do it your way.

As for me, I guess I'm the other end of the spectrum compared to previous posters. Once my dx was certain, I told everyone. First my husband and kids, then extended family, then close friends, and finally coworkers and acquaintances. I had 2 reasons for this:

  • I believe more people = more prayers. (I didn't outright ask for prayers, but almost everyone offered; which helped me remain positive.)
  • I DO NOT want to be the subject of whispers and pity. I wanted my condition out in the open so everyone was comfortable speaking to me about it. I wanted to be the source of truth and prevent the rumor mill from taking over.

For surgery, I plan to take a different approach. I'll let DH be the messenger to everyone (except the kids) until I feel up to it. I may be ready for conversations and visits on Day 0, or maybe not til Day 4. I don't know; it will be a game time decision and everyone will know that ahead of time.

I see from the other thread that your surgery is next week, July 1. I'll be sending nothing but positive thoughts for good outcome and speedy recovery.

Kelley, dx at 55; Oncotype 18 Dx 5/10/2019, IDC, Left, <1cm, Grade 2, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 7/7/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Log in to post a reply

Jun 24, 2019 12:26PM - edited Jun 24, 2019 01:04PM by nleerussell

My approach was very similar to happyperidot. There was no secret but I wanted to tell those closest to me first. I have tons of first cousins and wanted them to know for family health history purposes more than anything. So I told their mom's (my aunts, after my significant other, kids and my mom).

Dx 5/30/2019, DCIS, Left, 6cm+, Stage 0, Grade 2, ER+/PR+ Surgery 7/10/2019 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement
Log in to post a reply

Jun 24, 2019 12:39PM edj3 wrote:

GenX, did you get the responses I did where people nearly cried because if I have cancer (super fit, clean eating etc. etc.) then what does that mean for them? I swear I had to comfort others when I was sharing MY bad news.


Plus the sad faces, lots of sad faces. That got old too even though I know people meant well.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jun 24, 2019 12:56PM 55cellos wrote:

Yes, very hard to see the sad faces. And I’ve also had to comfort those I have told. Ugh. I’m not upset with them, just the sucky situation.

I appreciatethe comments & positive thoughts!

Log in to post a reply

Jun 24, 2019 01:23PM kber wrote:

Hi - this was probably the hardest part of the whole mess for me. Over a few days I told my parents, my siblings and then my kids (that was the worst). Then I specifically asked my parents and siblings to tell everyone else. I didn't keep it a secret. Once my inner circle knew, you could have taken out an ad in the New York Times or hired a sky writer, for all I cared.

That said, I found a resource in www.caringbridge.org which was very helpful for letting folks outside of my immediate family know what was going on. The most exhausting part, for me, was repeating myself over and over. It was like I had to relive each test, decision, result, or experience multiple times, dealing with other people's reactions and emotions, and I just didn't have the energy. Caring Bridge became my one stop shop for sharing whatever I felt was helpful or necessary. I also set my sister and husband up as "authors" so they could share updates, which was helpful when I had surgery. When I was out and safe, my husband texted my sister, she updated the website, and we were done.

I did have one or two people who resisted. They seemed to feel like I "owed" them a personal update. Frankly, I didn't have the time or energy to indulge them. My unsolicited advice - you need to take care of yourself first and foremost. It's not even being selfish, it's just a fact. Like the flight attendants say: put on your own mask before helping others.

One last thing - once people know, you may get a lot of folks offering to help. After initially resisting, we set up a site on www.mealtrain.com to manage the offers of food specifically. If we hadn't, we'd have been buried in more food than we could have possible eaten!

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/6/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/27/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 7/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Jun 24, 2019 02:05PM Faith1111 wrote:

I found out I have BC this past May 20th. I only told my mother, her husband, a close friend, a priest and my boyfriend. I told my boyfriend not to tell anyone, he promised, then told 3 people. I almost broke up with him over it. I’m a super private person. I don’t want people looking at my chest and wondering how bad they look after treatment.

Log in to post a reply

Jun 24, 2019 05:30PM Tmh0921 wrote:

When I was originally DX in 1999, I only told my parents and siblings. It was right around the holidays and I hadn't had my lumpectomy yet, and I just didn't want to deal with the questions I didn't have answers to or their "grief". Unfortunately, at one holiday gathering, my sister told one of my aunts and it snowballed from there resulting in exactly what I didn't want to happen with everyone upset and asking questions I couldn't answer.

I was just DX with a new cancer last month. This time, I've only told my husband, my kids, and my dad. The rest will find out once my mastectomy is complete and I have all of my pathology and treatment plans in place.

I think its an individual decision as to what you share with who and when. If there are people who you aren't close with, don't feel obligated to share.

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/31/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/5/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/2/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 3/24/2020 Femara (letrozole), Zoladex (goserelin)
Log in to post a reply

Jul 21, 2019 03:08AM AliceBastable wrote:

I told everybody in one FB announcement the day before surgery. I kept it light and semi-humorous. I think I told my only sister a few days before in response to her text asking me to help her haul some stuff out of our mother's house. I guess I'm lucky - I didn't have to talk to anyone in person.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
Log in to post a reply

Jul 21, 2019 09:20AM DogMomRunner wrote:

I am not in the same position as far as telling kids (child free here) but the only people who knew before the actual diagnosis was my husband and some of his family. His family were told because I went for the mammogram while my husband was visiting them and I had already discovered the lump. One coworker was told because she was going through it and because we back each other up at work. My boss was told also around this time. After the biopsy results came back, my family was told. Others at work were told after the lumpectomy and right before the start of chemo.

I have slowly told more people especially those that I will encounter because of course they will notice that I have no hair. I haven't "come out" on FB so casual friends don't know. I'm a fairly private person when it comes to things like this.

Good luck to you 55cellos, not matter what you decide to do

You ain't run far enough to say My legs have failed You ain't gone far enough You ain't worked hard enough You ain't run far enough to say It ain't gonna get any better. Nathaniel Rateliff Dx 4/24/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/8 nodes, ER-/PR-, HER2+ (FISH) Surgery 5/16/2019 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 6/5/2019 Herceptin (trastuzumab) Chemotherapy 6/5/2019 Taxol (paclitaxel) Radiation Therapy 9/21/2019 Whole-breast: Breast
Log in to post a reply

Jul 21, 2019 06:22PM Siciliana wrote:

I only told my immediate family and a couple of close friends. Who then decided to tell others. That really bothered me. It was my news to share, not theirs. One of the main reasons I chose not to share it with the world is that I hate the sad looks, their stories of their sis-in-law who just died of BC, or their mom who thought she'd beat cancer, but it came back, etc., etc. Too many invasive questions like, "What stage are you?" and my favorite (not!) "Cancer always comes back." When a friend told me that, I said, "That's not the kind of thing that makes me feel better." Then she tried to backpedal and said, "Well, it will come back IF you don't eat the right foods and don't exercise."

Even my own sweet mother will sometimes ask, "So how are you REALLY?" This makes me feel like I must look awful, like I'm on death's door or something. I know Mom means well, but I still hate it when she asks that.

After reading what I just wrote, I realize that black cloud is back.

Dx 12/19/2016, ILC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 2/23/2017 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 6/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes
Log in to post a reply

Jul 21, 2019 07:31PM Acucindy wrote:

It is hard. I have had a lot of people cry when I tell them. I do end up comforting them. I try to think of it as how much they love me. I am a big

believer that prayer can help. People ask what they can do, I tell them pray for me. It is super surreal. I am a medical practitioner and I am the one who

takes care! It is hard to be the patient.

Dx 7/5/2019, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Radiation Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel

Page 1 of 1 (14 results)