Topic: Telling people??

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jan 11, 2022 03:08AM

Posted on: Jan 11, 2022 03:08AM

Tack33 wrote:

Just diagnosed with Mets to spine after being 4 years out from Stage 1. Blindsided and devastated to say the least. Just told my kids tonight (husband and immediate family also know) and it went ok, but wondering about work and other friends. I’ve been lurking for a while and I know you ladies are a wealth of information. Can you please tell me how/when or pros/cons of telling/not telling work colleagues and friends?? Any other advice on getting through the first few months of despair? Thank you..

Dx 1/2018, IDC: Mucinous, Right, <1cm, Stage IA, metastasized to bone, 0/2 nodes, ER+/PR+, HER2- Dx 1/2021, IDC: Mucinous, Stage IV, metastasized to bone, ER+/PR+, HER2-
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Jan 14, 2022 11:00PM seeq wrote:

Ok - somebody call Hallmark - we obviously need the card. <g>

De novo diagnosis with large/numerous liver mets. Breast lump identified one month later. Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Jan 15, 2022 12:43AM - edited Jan 15, 2022 12:44AM by divinemrsm

At first, I let others know I was diagnosed with bc, but the metastatic part was only revealed to my family. The whole ordeal at the beginning was extremely difficult for me emotionally and I had the kind of personality where if I'd told a bunch of people, I'd be trying to make them feel okay about my diagnosis. My energy needed to be on myself, and I needed privacy to work through things.

Then after about five years or so, I gradually started telling a few more people other than my family. I knew one issue it would raise, and that was gossip in a small town. But by that point I could handle it. Sure enough, I attended a church luncheon after a funeral for someone in town, and one of the food servers who's well-connected made an unusual inquiry about my health. While I assured him I was doing okay, what I really wanted to say was, “Hey, look, Pat, if you're wondering whether you should save the leftovers from today for a luncheon after my funeral, don't bother; I'm not planning on dying just yet." I told this to my husband later and we both had a good laugh.

found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jan 15, 2022 01:12AM kikomoon wrote:

Divine, sometimes with this wretched disease and all the waiting, the bad news and crying, the side effects, the what ifs, all you can do is have a good laugh sometimes. The absurdity of it all.Oddly enough, I’ve had quite a few full belly laughs since diagnosis about various aspects. What else can you do?

Dx 10/16/2020, IDC, Left, 6cm+, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, ER-/PR-, HER2+ Chemotherapy Xeloda (capecitabine) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Tukysa (tucatinib) Radiation Therapy External Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Local Metastases Brain
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Jan 15, 2022 03:19AM - edited Jan 15, 2022 03:21AM by aprilgirl1

DivineMrsM - same with me. First go around, I was an open book but found myself in the position of needing to assure people which I didn't expect. I didn't want to take that on this time and definitely needed to protect my energy and get my balance around this new reality.

Exbronxgirl - you are right, there are some jobs that will be impacted by the knowledge that a person has stage IV cancer, even if they are tolerating the treatment well and "look" fine. I am in that position right now. I know people have not called real estate agents they "heard" were sick because they didn't want to "bother" them, even though these agents were working and honestly doing fine. My oncologist gave me good advice for me personally which was wait to see how you feel.That being said, I am really shook and devastated as many of us are about the loss of our dear Rabbit. It has me thinking of working less and spending more time with family as well as downsizing our belongings. As a stage IV person I have a huge understanding of why someone like Chadwick Boseman kept his cancer dx private, at least to the general public - I am not sure that he would have been cast in the role of the Black Panther if the studio knew he was sick. He was able to take on that role and others and fulfill his dream as an actor.

recurrence in lymph nodes (superclavicle/mediastinal)"You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass Dx 11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2-
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Jan 18, 2022 06:22PM katyblu wrote:

Tack33 - I’m less than 6 months from my Stage IV dx. On my first go around in 2017 I limited who I told and limited pictures and posts on social media. My family knew and my military command. We figured it would be finite and once treatment was over we could move on.

This time, well I found out in the worst way possible. An accidental phone call from one doctor to who he thought was my oncologist but ended up being my voicemail. So it took time to do more thorough imaging and a biopsy. After my DH and I got all the info and a treatment plan we finally told my parents and his. Then I had to tell my commanders and boss, especially as I would be in and out due to appointments and maybe side effects. But really, at this point we aren’t really keeping it from anyone. And my DH and I have had so many laughs even about the dx.

I will say though that it has been hard for me. I’m young and was relatively healthy and working out regularly. This dx was devastating. And it was really hard to talk to anyone about it. But I started getting involved in this forum and that has provided me so much support. And I was luckily put in touch with a palliative care team. I have access to both a great doc to work with on SEs and social worker for other needs. I also work with a clinical pharmacist and take an antidepressant. But it has still been a rollercoaster of emotions. I’ve started to have more good days than bad so I hope that encourages you.

Good luck and welcome, though I wish I didn’t have to welcome you. Please consider us a support group and don’t hesitate to ask whatever you want or vent about anything

Surgery 5/17/2017 Lymph node removal (Right): Sentinel; Mastectomy (Right): Simple; Prophylactic mastectomy (Left); Reconstruction (Left); Reconstruction (Right): Silicone implant Chemotherapy 6/21/2017 AC + T (Taxol) Radiation Therapy 11/6/2017 Whole breast, Radiation boost: Right breast, Chest wall Hormonal Therapy 1/15/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 9/1/2021 Ibrance (palbociclib) Hormonal Therapy 9/1/2021 Arimidex (anastrozole) Dx ILC, Other, Stage IV, ER+/PR+, HER2- Dx ILC, Right, 5cm, Stage IIIA, Grade 1, 1/4 nodes, ER+/PR+, HER2-
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Jan 21, 2022 03:12AM nkb wrote:

I haven't told many people. I don't think people understand metastatic cancer well enough and jump to lots of conclusions. it's hard because if you don't tell anyone you get less support, on the other hand also fewer war stories and inappropriate comments and ghosting. I don't use the "cancer card" to get anything faster or sympathy or anything-

Susan Sontag didn't tell anyone either- thought she would get too much bias about her work.

I sometimes worry that someone will be mad when they find out and I didn't tell them- but, I don't worry about that anymore. I just enjoy having interactions with a whole lot of people who don't know and therefore the conversation never goes to my health or cancer ( unless it is someone else's cancer)

Most people don't get marginalized because they are going to die someday- but, we often do-

the question of should you stop working etc is very tough- my first MO said he thought people all worked too long and then got cancer before they got to do something other than work. I was 58, several years before retirement, DH was 63 and had just retired- I found it super hard to retire and think being younger would be even harder. perhaps if I had known I would live 10 years after diagnosis I would have gone back to work- but, after a year of treatment I was tired, sad and bald- work was very demanding and ....I had no crystal ball.

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+, HER2- Surgery 2/4/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 2/28/2012 AC + T (Taxol) Radiation Therapy 9/11/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Targeted Therapy 6/1/2017 Ibrance (palbociclib) Targeted Therapy 3/13/2019 Afinitor (everolimus) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Chemotherapy 3/10/2020 Xeloda (capecitabine)

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