Topic: Telling people??

Forum: Stage IV/Metastatic Breast Cancer — 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 02:08AM

Posted on: Jan 11, 2022 02:08AM

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 11, 2022 05:41PM illimae wrote:

Like Moth, I told people quickly. I got the biopsy results by phone while at work, so I left for the day and had my “work husband” tell my team for me. I was the lead and knew I’d be out a lot and with no previous cancer and still young, I anticipated being bald from chemo, so no hiding that, lol. Close friends, family and coworkers were told within days but I decided to wait a couple of weeks to Facebook it, as I wanted to include the plan in the update. Everyone was great, bosses were exceptional and easy (basically whatever I want and whatever I need), coworkers were great too and the ones who needed to step up, finally did. The first few months were shocking and sad at times but treatment, tests and work kept me busy and after a few months of adjusting, while still feeling good, I was able to find balance, enjoy life and move on from the “I’m gonna die!” state of mind. 5 years later, with great meds and a lot of luck, I have almost no complaints. I know it sounds crazy or like denial but I honestly just enjoy my days as they come and try not to worry until I really need to. Good luck to you.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2- Radiation Therapy 10/20/2017 External Local Metastases 10/20/2017 Brain Radiation Therapy 4/18/2018 External Local Metastases 4/18/2018 Brain Radiation Therapy 5/23/2019 External Local Metastases 5/23/2019 Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External Local Metastases 2/17/2020 Brain Radiation Therapy 7/20/2020 External Local Metastases 7/20/2020 Radiation therapy: Bone Radiation Therapy 12/4/2020 External Local Metastases 12/4/2020 Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 12, 2022 02:15AM seeq wrote:

Tack33- sorry you find yourself in the worst club ever (spot on, Parakeetsrule). I told very few people early on, because I knew I couldn't field questions very well, as I had more questions than answers, myself. I told my sibs by email, because I have six and we're spread out all over. About the time I was considering opening up about it, a good friend was dx'd with esophageal cancer with multiple mets, and I felt the timing would be bad. In hindsight, I'm glad I kept it quiet. When my friend circle found out, inadvertently, I let it be known that I really didn't want to talk too much about it: I'm normally a very private person; I don't like being the center of attention - especially the swarm effect a cancer dx has; and I didn't want a bunch of unsolicited medical advice, inquiries as to my spiritual status, and endless questions.

Since we've recently moved to a small town, I don't intend to share this information with anyone until I have to. Moth is right - physical status plays into that. I don't appear to be sick, though my husband and I know the toll it takes. I prefer to keep an I'm okay until I'm not okay mindset. And I don't want , "That's e new lady; she's sick."

All that being said, I have the emotional support I need from my dh, and a few others. Everyone's situation and needs are different, so you need to do what's best for you.

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 12, 2022 11:01AM simone80 wrote:

Tack33, I'm sorry you find yourself on this forum.. I agree with other comments that it really depends on your circumstances. I immediately told my family and close friends. I waited about 6 months, after the initial shock, to tell others. I did tell work when I went on short-term disability.

I'm pretty open about it now. I sometimes look tired or decline social activities (thanks covid) and people will ask what's wrong and I tell them.

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 12, 2022 01:09PM hjernt wrote:

Joining in with the others on ‘welcome to the club no one wants to join’. Also agree that right after diagnosis is the WORST time. The shock, the fear, almost unbearable.
Initially I shared with close family and friends and let them share to extended family, friends. I happened to be diagnosed on 12/13 and was just about to start two weeks off that I had already scheduled. It was perfect timing in some ways because my family and I could come to terms with it generally. Of course at that time we didn’t,‘r know about the Mets so we were still just dealing with BC in general. Got a whole ‘nuther shock in January with Mets.

As far as work, I also took the open book approach. I told a small group in person and the sent a broader email. I knew I was going into Chemo treatments and my appearance was going to change. Also I wanted this to be talked about. I had a couple of people talk with me about family members that were diagnosed and one coworker was inspired to get a mammogram which led to her own diagnosis.

I have been lucky to be NED for a year but I do have treatment every three weeks. Most people just know I am doing ok. If they ask if I am done, I just share that I am in remission (a term most seem to understand) but am still having ongoing treatment. I am glad the attention has died down but it was comforting how many people came to talk to me and looked me in the eye when they were asking “how are you really?”

Thinking of you and it will get better.

Heather

Dx 12/19/2019, ILC, Both breasts, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy 1/16/2020 Perjeta (pertuzumab) Chemotherapy 1/16/2020 Taxotere (docetaxel) Targeted Therapy 1/16/2020 Herceptin (trastuzumab) Surgery 7/15/2020 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right)
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Jan 12, 2022 04:12PM seeq wrote:

hjernt- you reminded me of something else...I can't use my cancer dx as motivation for getting that mammogram to "catch it early", because it didn't work that way for me. I was on schedule for mammograms every year, even upgrading to 3D every other year (higher out of pocket cost). I do wholeheartedly support annual mammograms, they just didn't do the trick for me. Also, since I was diagnosed de novo, I don't have many words of wisdom for lower stage diagnoses, as mine was a completely different experience.

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 12, 2022 04:21PM kbl wrote:

I told my family immediately. As for people outside of my close circle, I started a CaringBridge blog, where I invited coworkers and could say or tell people things in a group through that. It’s so much easier, and no one’s has to ask me questions. I write now once a month after my monthly doctor visit. I have about 20 people. I don’t have anyone close on Facebook, so I didn’t post it there. They have the ability to comment and are a source of support for me. I’m sorry you’re joining this club.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Chemotherapy 9/27/2021 Other
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Jan 13, 2022 09:24PM Tack33 wrote:

Thank you all for your kind responses. This is really tough. I feel like I wake up to a nightmare every day. I appreciate the insight though and I’m going to wait until I settle into treatment before making any decisions on who to tell. Good advice :) Another question:What did you all do for support? Counseling? Anti-depressants? MBC support groups? I think I’m going to need all the support I can get.

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 13, 2022 09:39PM - edited Jan 13, 2022 09:40PM by parakeetsrule

It seems crazy but even only a few months later I now sometimes wake up in morning and don't immediately think "I have Stage IV cancer! ARGGHHHHH!" Usually I think "ugh, can I just go back to sleep instead of working?" :)

I get most of my support here or talking to a few specific friends and family. I haven't had any luck with support groups because they all meet during working hours and I still have a full-time job. Lots of people take anti-depressants/anxiety meds. After a rough week last month I asked for some but the hospital wheels are turning slowly and I haven't gotten them yet. I'm not sure I need them all the time but several of the drugs I'm on can cause depression so I want to be ready if it happens again!

If you haven't yet, check out all the other forums in the Stage IV part of this site. There are topics for almost anything, including non-cancer stuff and silly things. It's nice for when you have random questions or just want to exchange silly pet photos with people who know what you're going through.

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 5/14/2017 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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Jan 13, 2022 10:16PM dancemom wrote:

If you are in a cancer center, they may have a person who can help with finding resources. That is how I found cancercare.org which has councelors, and also they set me up with a visiting nurse for post op and OT to help me get back to work. Asking questions here helps too.

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 13, 2022 10:53PM sf-cakes wrote:

Tack33, I'm also sorry you're in this club, and I agree with so much of what's already been said about the panic and doom and earth-shattering fear getting better with time. I'm a year out tomorrow from my MBC diagnosis (which happened six months after my stage 2 diagnosis, just when I was spit out of the surgery/chemo/radiation merry-go-round!) and it is, surprisingly, better. Emotionally better, and I'm able to get in touch with gratitude every day. Not every moment of every day... but daily.

For support, this site here has been amazingly supportive. I've learned more here about side effects, treatment options, and specific suggestions to help with just about everything MBC-related than from my doctor/treatment team. I also attend a virtual MBC support group that meets twice a month. I have one friend who I can talk to about any aspect of this, and then other friends who provide more general emotional support (but who can't really handle taking much about MBC). My job knows my diagnosis, but honestly most of my coworkers have kind of forgotten about it, since I'm able to work and seem fine to them. Having my supervisor know is helpful, though, because there are no questions about needing to get to appointments or continuing to work remotely.

i also use a THC/CBD tincture that helps with anxiety, because I had a LOT of it. I couldn't relax and couldn't sleep, and since all these movies I've watched where folks with cancer are smoking marijuana, I reminded myself, hey, I have cancer, let me try some! I don't smoke it but the tincture put under the tongue is mild and I don't feel high. Just less freaked out.

This is some bullshit. Dx 6/2020, ILC, Left, 6cm+, Stage IIB, Grade 3, 2/4 nodes, ER+/PR-, HER2- Surgery 7/1/2020 Mastectomy; Mastectomy (Left) Chemotherapy 8/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/3/2020 Chest wall Dx 1/2021, ILC, Left, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR-, HER2- Radiation Therapy 2/10/2021 External Local Metastases 2/10/2021 Radiation therapy: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)

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