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 10, 2022 11:08PM

Posted on: Jan 10, 2022 11:08PM

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 08:48AM simone80 wrote:

Tack33, I manage anxiety with a prescription. I only take one pill on scan days. Other days I do yoga, meditate, and sometimes take a gummy. I just started a gratitude journal so hopefully that will help also. There are several Facebook groups along with this site that I sign into once in awhile.

I talked to a counselor in the beginning to help get over the initial depression that comes with a M BC diagnosis. You learn to live with cancer after awhile.

Dx 7/2001, IDC, Right, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Dx 1/2019, IDC, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jan 14, 2022 09:22AM amontro wrote:

I was employed 10 years at my job when I was diagnosed with stage 4 denovo. I had to tell them, mostly supervisors, what I had because of all the time off I was taking at the beginning. After a while, I started telling other people. At first, they were solicitous because they saw me leave work at odd hours. But you know after a few years, they forgot about it and some thought I was cured.

My daughter was with me over 13 years ago when I received the death sentence. My oncologist told me to get my affairs in order, travel a lot, and buy a wig, because I was not going to around for long. Fortunately, I did my travelling which was great because I can't now with loss of energy and covid. I pre-planned my funeral a few years ago so that my kids wouldn't have to (I even have my gravestone on my plot.). The $350 wig I bought is still in the closet because I didn't lose my hair.

So as everyone else said it is an individual decision depending on how you feel and who you trust.

2008 Stg 4 DeNo: lung/spine, mx, rx, herceptin/arimidex til now, reconx 2011; Zometa 2010, side fx oral ulcers wbone exposed (to present); 2019 stop Zometa w/onset of osteo-necrosis (lower left jaw), losing parts of jaw bones til present. Dx 9/2008, Stage IV, Grade 3, mets, HER2-
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Jan 14, 2022 10:16AM pbsoup wrote:

LOVE this thread. it is such a personal decision who to tell, how to get support etc. There is no right or wrong answer.

The first time around, I wanted to keep it secret but my husband, who ran a public cultural institution, felt obligated to tell his board (God knows why...) That turned out to be amusing as all the old fogies immediately felt a bond with me and came up at events to chat about health issues. My daughter, then age 9, told all of her friends at school, so I had nosy PTA moms sidling up to me at school events saying things like "What KIND of cancer IS IT???" To one I said, "I thought no one knew..." to which she responded,"Everyone knows... it's the elephant in the room..." then gestured out over a room full of women swilling Chardonnay and gossiping as they supervised a square dance. (Note--no one sent the elephant flowers or casseroles...)

That go round, I was thrown into a severe clinical depression brought on by chemo induced early menopause and Tamoxifen. I am normally pretty positive and strong, so this was really rough, especially as I felt my doctors dismissed me when I said I thought it was the meds. My oncologist prescribed antidepressants saying "Lots of successful women take them..". I am not diminishing antidepressants, they are lifesaving in many cases...but my belief--and experience, is they are very strong medicine that impacts brain chemistry, so need to be administered mindfully, alongside therapy and determination of what is causing the mood issues, not handed out like tic tacs.

Interestingly, my current oncologist said that up to 10% of women experience severe depression on Tamoxifen. I felt so vindicated when he said that. As if a weight lifted all these years later. If someone had told me that back then, I might have had an easier time as I would have known definitively that it wasn't "me" that was crazy, it was my body and mIind reacting to a medication...I try to get that message out now as I see women on these boards questioning why they feel so down... Cancer is inherently depressing, of course, but so is inflammation, a lot of the medications we're prescribed etc. The combination of things that may lead to clinical depression in cancer patients needs to be discussed and unpicked a lot more I believe. I sometimes wonder if the way I--and other women, are not taken seriously when discussing mental health side effects is a long term result of women being labeled as "weak" and "prone to hysteria" Just a thought...

Fast forward a decade, Stage IV. I swore my husband to secrecy and said I would tell who I want when I want. This time he respected my desire. I told my daughter, so her college friends all know--some things never change... but otherwise I pick and chose who to tell. I am 2.5 years in, doing well, and outwardly seem fine, so I mostly keep it to myself. My British in-laws don't know--they are old and don't need the worry. Some of my barn mates where I ride know--horse people are tough and not prone to fussing which is bliss. My 3 best friends from high school don't know, and will probably be furious when they find out, but a few newer friends do--chosen for their discretion.

When I sit quietly and think about why i don't talk about it, I think the root is denial. The less I talk about it, the more I can spend this time while my quality of life remains intact feeling "normal". It's as if by telling people, or talking about it, I give the Cancer the undeserved power and privilege of an identity. Does that make sense? I know logically that whether I tell people or not, things will play out as it will...but it is how I feel comfortable right now.

Now, of course, not talking isn't a great way to build a support system. And terminal cancer is a profoundly lonely journey. I saw a therapist after my stage I diagnosis, during the worst of my depression, and it wasn't that helpful so I haven't done that. I am active in my church, and that helps. I did a silent meditation retreat a few years ago and want to do that again as it was profoundly helpful. I exercise--VERY helpful.

My husband listens and cares, but is not overly engaged in the minutiae. I complain that it bothers me he isn't more in the weeds, then find myself snapping at him when he asks more than two or three questions.... My adult kids are sweet, but are in their own denial and are just launching their lives, so I don't want them preoccupied with me. Instead I am focusing on being together as much as possible--not "making memories" in any sort of contrived way, but having good talks and enjoying shared interests. I am blessed that after rough adolescences, they have become pleasant adults for the most part.

So for day to ay support, I find these online forums to be incredibly helpful--here and a few others I participate in. I learn a tremendous amount, and it is good to be in a space where we're all on similar journeys. I also like that I can read posts, or not...respond, or not... These days, after a bit of progression from bone only to liver, I am protecting what I fill my head with, so other than practical, actionable posts about managing side effects and treatment for liver mets, I tend to focus on upbeat things--long term survival. good scans. ideas for clinical trials etc.

Every so often I try to get practical with myself and think "I need to sit and face my fear of death." Then I think "nah, maybe not" and google "20 year MBC survivor story" ...

On the other hand, I notice when I hear about people who are five years out from an MBC diagnosis I think "wow, five years is a LONG TIME" Then I realize I am only 58, so if it wasn't for MBC, I would be looking at perhaps 30 more years of useful life. Oh well... Not projecting out too many years (or months even) into the future has become a "new normal." I am used to it now, but sometimes wish I had the luxury of thinking I'm immortal.

My belief, at least right now, is I am strong so will be able to handle things as they come, not a moment sooner. I don't want to look back and feel like I squandered a minute of this liminal moment between reasonable health and descent into proper illness.

Long post, all about me, but there you have it...P

2010 stage 1 Lumpectomy, radiation and Chemo
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Jan 14, 2022 10:54AM exbrnxgrl wrote:

I am not particularly good at hiding major things in my life, especially something life altering like an mbc diagnosis. As I mentioned earlier, I knew my school community would be very supportive. Personally, I have never felt that any cancer was something to be kept under wraps. It’s a medical condition period and for me carries no shame or stigma. Being open about it allowed me to control the narrative and perhaps helped some folks realize that there is no shame in speaking openly about. If I hid it, I felt I would be contributing to the perception that it requires secrecy.

I am not suggesting that anyone adopt my approach. I honor everyone’s right to deal with the issue of telling in whatever way works for them. I would also like to add that my openness has allowed me to support a newly diagnosed parent at my school and to help people learn about bc (beyond the pink version). Not for everyone, but I’m a teacher (retired in June, lots of subbing right now).

Dx IDC, Left, 4cm, Stage IV, Grade 1, ER+/PR+, HER2-
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Jan 14, 2022 03:16PM anotherone wrote:

support - online (here in particularly), friends ( all know , told them at different times , from within 30 minutes of diagnosis to within a month or so), significant other , penpals, books.

I am lucky in that I am highly functioning and looking pretty normal.

No medication- no need for it really.

Primary in 2006, metastasis 2019. Sorry can lot log in diagnosis and treatment info properly - it gets jumbled. On Kadcyla now as had progression on H&P Dx 10/10/2006, IDC, Left, Stage IIIC, metastasized to lungs, Grade 3, 4/9 nodes, ER-/PR-, HER2- Dx 7/1/2019, IDC, Stage IV, metastasized to lungs Chemotherapy 9/16/2019 Abraxane (albumin-bound or nab-paclitaxel) Surgery Lymph node removal; Mastectomy; Mastectomy (Left); Reconstruction (Left): Tissue Expander Radiation Therapy External: Chest wall Targeted Therapy Herceptin (trastuzumab)
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Jan 14, 2022 04:02PM - edited Jan 14, 2022 04:06PM by olma61

the cancer center where I began my treatment had tons of emotional support resources and I took advantage of as much as I could! I saw a therapist, I put my name down for the chaplain to visit during my infusions, got to know the volunteers who came to distribute snacks and comfort items, etc. I got an atavan prescription from my oncologist but never took them.

I don't have a large circle of friends and I've lost touch with some I used to be very close to. Is there a greeting card one can send to inform them “ hey I know we've lost touch, I have cancer, the terminal kind"

My family have been great so far and they're my main support system. I never wanted my neighbors to know, I just don't feel like chit-chatting about my health and never wanted to flaunt my bald head. I always hoped no one would pick up on my Tuesday routine of leaving the house and putting my cooler bag in the car. ( my freezing kit for chemo)It is true that people can surprise you with kindness and support when you open up...I may be missing opportunities but oh well.

Several of my neighbors have died of various types of cancer in the last few years, sadly, and one woman who is the organizer type thinks we might have an environmental problem in the building. She passed around a letter asking if we know of other cases..l might out myself to her if she is really going to initiate an investigation. I've yet to go talk to her though

Luckily I am self employed so no bosses or coworkers to tell.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+, IHC Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/29/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/29/2019 External Local Metastases 5/29/2019 Radiation therapy: Bone
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Jan 14, 2022 04:32PM exbrnxgrl wrote:

In terms of telling and work, I do think it’s important to have a good read on the attitudes and policies regarding illness at your place of employment. Some have feared discrimination and even job loss when they have an extended illness. The thought of losing a livelihood or being regarded as a lesser employee does play into one’s decision to tell or not. Prior to retirement, I was a union member. Our contract prevented any adverse or punitive action due to extended illness

Dx IDC, Left, 4cm, Stage IV, Grade 1, ER+/PR+, HER2-
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Jan 14, 2022 04:57PM kikomoon wrote:

Olma- I am looking for a similar greeting card for long lost friends.

I told my two best friends ( they are also coworkers) the extent of my cancer from the beginning. They took notes as we listened to the call about how extensive it was. We told immediate family and let them relay diagnosis and all updates to whoever they want. My mom told her whole church which is nice because the pray for me. I told my manager “BC, really bad” early because of all the Dr. Appointments. Once treatment started I told the whole (small) office, I have cancer. That’s it. So they were not surprised when I lost all my hair. After first round of treatment, I was doing better, but discovered brain Mets. Then I told my manager the extents of it since you know, it’s my noggin and all, my money maker if you will. So work is really flexible and I can work odd hours, stay home, and dowhat I need to do.

I also told some neighbors “BC real bad” since I’m pretty active in our neighborhood association. It has spread to other neighbors and for awhile at the beginning, some were bringing gifts and food which was really touching and helpful. Those have since dropped off. I think if any of them asks about it I may tell them the extents. We told our immediate neighbors Stage IV and that news has spread to a few other neighbors. It’s nice because they ask DH about me and say they pray for me.

I don’t want to broadcast it on social media, as I don’t broadcast anything at all, kind of a private person. Still deciding though how to let old close friends know. I don’t want them to find out I’m gone and wonder why I didn’t tell them.

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 14, 2022 05:07PM dancemom wrote:

yeah, I need that card. Life, covid, moves...I have a few very old friends I slowly lost touch with over the years, and I had started reaching out to during covid, then CANCER, so I stopped. You just can't update people with that news.

Dx 3/16/2021, IDC, Right, 3cm, Stage IV, metastasized to other, Grade 2, ER+/PR+, HER2- Hormonal Therapy 3/29/2021 Femara (letrozole) Targeted Therapy 4/26/2021 Ibrance (palbociclib) Surgery 1/3/2022 Lymph node removal (Right): Sentinel; Mastectomy (Right): Skin Sparing Surgery 1/3/2022 Lymph node removal (Right): Sentinel; Mastectomy (Right): Skin Sparing Radiation Therapy 3/14/2022 Whole breast, Radiation boost: Right breast, Chest wall, Lymph nodes, Other part
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Jan 14, 2022 06:24PM parakeetsrule wrote:

The "card" situation is one reason social media can be useful. I have people I haven't talked to in a really long time but most of them are still connected to me on Facebook, so posting a mass update keeps them in the loop. Even if they don't see it right away, if they happen to think of me and pull up my profile, they'll see it.

Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/15/2017 AC + T (Taxol) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left) Radiation Therapy Whole breast: Lymph nodes, Chest wall

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