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 10, 2022 11:51PM - edited Jan 10, 2022 11:52PM by moth

Hi Tack, I'm sorry this is happening to you.

I told everyone very quickly (using social media and designating people to tell others not online.. making the calls was too hard for me so I asked people to tell others)

There are others here who have not disclosed their dx to many. I've heard some people believe it could affect their status at work. So that is one thing to consider- do you need to work? Do you plan to keep working? & if so, how supportive a workplace is it? Your proposed treatments will also be part of the equation- some treatments have huge side effects, others less so...

It's really hard stuff. We all get it. I don't think there's any one way to get through the shock of it. It left me reeling.

Where are your mets? If you fill out your profile and make it public we can point you to specific threads for your mets & treatments.

Hang in there. One day at a time

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Hormonal Therapy 12/15/2020 Femara (letrozole) Radiation Therapy 3/2/2021 External Local Metastases 3/2/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other
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Jan 11, 2022 01:09AM - edited Jan 11, 2022 01:12AM by sondraf

Work doesn't know my status mostly because 1) the drugs I am on have kept it all steady for two years now and I look/operate as normal and 2) I don't want the pity looks or comments or ongoing questions. MBC is a mystery/confusing to a lot of people and while yes, there is a place for advocacy, at this time its not a role I look to fulfill nor is my current workplace somewhere I would be interested in educating people.

I think it comes down to balancing your workplace and responses they may have made to others with long term illnesses (supportive? Not supportive?), how long youve been there, if you are in pain and need to manage some time off vs the type of work you do (lotta stress? not much?). You could also wait and see how this goes with your treatment plan and working and if its something you want to continue. I kept working because I was so blindsided I didn't know what else to do so just kept going, including taking work calls laying flat on my back after rads to my sacrum. For me work is a constant and something that takes my mind off the unpredictability of treatment and gives me money to do things or spoil family while I still can.

As for telling others - someone on here posted about this circle approach - you only tell your closest people and they (if they share the same circles) tell others further out, etc so that you only need to manage updating a small number of people. There is a different name for this, but hopefully someone else will come along and explain it better!

Ultimately, its your choice. There is no obligation to tell anyone anything. Only my immediate family know my diagnosis, and only my parents know that it is incurable (and even then I didn't tell them for 18 months because my brother was going through tongue cancer treatment and mom's best friend from HS got BC). That may seem odd to some people, but based on family and friend dynamics, thats been the most comfortable for me.

As for dealing with the despair - its definitely a tough time, and your emotions are going to be all over the place. Let yourself feel them and then let them pass. Also be aware that once you get on a solid treatment plan, and see it working, your mental state will get clearer, but the MBC anxiety can drop in at any time. Just acknowledge it when it happens in a same manner. If you find yourself getting stuck in anger or depression or sadness, seek out a solid therapist - mine helped a lot last year. And don't forget to stick around and engage with the Stage IV community here, lots of info to share!

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/28/2019 Femara (letrozole) Targeted Therapy 11/28/2019 Ibrance (palbociclib) Surgery 11/28/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Targeted Therapy 3/1/2022 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.lynparza
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Jan 11, 2022 03:32AM finallyoverit wrote:

Tack33 ~ First let me say I am so sorry that you’ve joined us. Those first few months are brutal, but I promise, things will settle down and a new normal will emerge.

I’m almost 5 years into bone only mets and outside of my medical team, exactly 3 people know. For me, I didn’t see the need for everyone in the world to know. I still look the same, act (on the outside, definitely have changed internally) and can do all of the things I did before. I was really not up for all of the “how are you doing really?” And “you look good!” comments, so I told virtually no one.

Once you tell, you can’t untell. I know my friends and family would want to help and that it would come from a good place, but for me, the best thing they could do to help is not know and treat me normally, let me live normally (or as close as I could) for as long as I can. The ladies here are amazing.. ask anything.. we’ve all been in your shoes and are here for you.

Dx 10/2011, IDC, Stage IIA, 0/4 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone
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Jan 11, 2022 04:55AM - edited Jan 11, 2022 05:04AM by dancemom

I am telling on an as needed basis.

One job where I have been my whole career, knows I have breast cancer because I told them I had to take time off for surgery twice. 1st when I originally was scheduled for mastectomy before Mets. When that was canceled I told them my treatment change which they all took as good news. Now I'm actually off because I had surgery last week. I didn't go into details about the diagnosis. Before I was diagnosed, I didn't understand all the nuances of different types and stages. I don't expect them to either. It's not important as long as I can do my job.

one job, my boss had a mastectomy 5 years ago, so she has been very kind and helpful since diagnosis and she knows more.

One job, I didn't mention why I had surgery, only that the dates changed. I don't know them as well there yet.

However, DH told EVERYONE immediately! Good thing I didn't tell him the stage.

Edit to add that cancercare.org has mental health resources. They offer free short term counseling.

Dx 3/16/2021, IDC, Right, 3cm, Stage IV, metastasized to other, Grade 2, ER+/PR+, HER2- Hormonal Therapy 3/28/2021 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 11, 2022 05:23AM exbrnxgrl wrote:

Very personal decision as has been pointed out. I was essentially de novo and was completely open about my condition. I was working at the time and by being open, I avoided gossip, rumors, and speculation. I made it clear that if someone “heard” about my condition they could come directly to me. No looks of pity, no stigmatization etc. It was also important to me that breast cancer should be talked about openly and honestly.

What I got in return was a loving and supportive school community. I was also able to be a support for a few parents who were dx’ed with bc. I worked with mbc for ten years and retired this past June. I’m a very open person so this worked for me and my openness was repaid by ten fold by kind and loving support by my school community. Not everyone would be comfortable with this approach but I knew my audience and the best way to control rumors is with the truth.

Dx IDC, Left, 4cm, Stage IV, Grade 1, ER+/PR+, HER2-
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Jan 11, 2022 07:20AM - edited Jan 12, 2022 10:19AM by parakeetsrule

So sorry you have joined us here. I'm also a recent member of the Stage IV club, the worst club ever. I was diagnosed in November and I'm still figuring out who and what to tell too! My main piece of advice is to wait for the initial shock to wear off before deciding. Tell only who you need to tell and depending on the person, only what they need to know right now. Later on after you get a treatment plan in place and your brain starts to settle into your new norm, you'll be thinking more clearly and will be able to make better decisions. Like others have said, once you tell people you can't un-tell them. I'll share what I've done so far in case it's helpful for you.

When I first started experiencing suspicious symptoms, I told no one. Once it became clear that the most likely explanation was cancer, I told my closest parental-level relatives, several of whom previously had breast cancer. At first I didn't want to tell them until I knew for sure, but after a few days the strain of not being able to talk to anybody became too much so I told them. After cancer was confirmed, I also told my boss everything. But I have The World's Greatest Boss. She was my boss the first time I had cancer, she helped our team through losing another coworker to cancer, I trust her completely, and like I said, she's the world's greatest boss. She shared the news with the inner ring of coworkers I interact with the most and that's it so far. Nobody else up or down the chain knows. It would have been possible to get away with sharing nothing, but these are also people I trust and some were there for my last cancer treatment.

I waited until after Thanksgiving to tell my closest siblings. I had JUST found out and didn't want a super uncomfortable holiday gathering where everybody was freaking out and I had no answers for them because I didn't have a treatment plan yet. But after treatment was decided I told them and after they knew, they told their respective spouses and families. They also shared it with a few important mutual friends that I wanted to tell. We decided NOT to tell my 90+ grandma for now. Her short-term memory is terrible and the stress would affect her health, and she won't be able to see any changes in me. If changes become obvious later, then we'd probably tell her my cancer was back and not much else. As far as I know the rest of the extended family doesn't know yet. I wouldn't really mind if word spread though.

With my first cancer diagnosis, I shared an update on Facebook with my entire group of friends, family, and acquaintances after I finished chemo and surgery. I told them everything I wanted them to know and what I thought people would have questions about. I haven't decided yet if I will do that this time, partly because metastatic cancer is not well understood and I don't want a bunch of pink fluffy cheerleading, partly because there's nothing they can do right now and nothing I need, and partly because I don't want people to act strange or treat me differently. At a minimum, I plan to wait to see if my treatment is working before deciding to tell more people.

Telling people is exhausting!! Consider telling only a few trusted people and have them share the news for you, like I did with my siblings and boss. I'm trying to restrict me sharing the news myself to only people with no connection to my family or other friends.

This isn't for everyone, but when you have to tell someone yourself, consider sharing it via written word: text, email, dm/message, letter, etc. That way people get the initial shock out of the way without you having to absorb their reaction on the spot. You are also able to share only what you want without fielding a bunch of immediate follow-up questions or having to help them deal with their feelings. I did this but my friends and family are mostly text people not phone people, so it wasn't unusual or weird. (and even if it WAS weird, I don't care. It was the best way for ME to share MY news)

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 11, 2022 07:53AM tina2 wrote:

Tack33,

Everyone handles this differently. You must do what is best for you and can take your time figuring out what that is. Just remember, as finallyoverit says, you can't un-tell it. You are still in shock. Wait until your world stops spinning--and it will--to decide what is comfortable for you now and going forward.

I realized when I was diagnosed with Stage I and still working that it would be best to tell only my employees and very close friends, asking them to keep the confidence. That worked well for me, allowing me to proceed through life and work without pitying looks and questions. I did the same ten years ago when I was diagnosed with Stage IV and have ever since. This helps me feel in some control, which is essential to my well being.

Please don't despair. There are many of us in this forum who have been doing well for many years, thanks to science and good care. There is every chance you could be one of us!

Tina




Stage I, mastectomy, 1985.Stage I, mastectomy, 1995. Stage IV, lung mets treated with Faslodex 2011-/2018. Treatment hiatus 9/2018-3/2020. Ibrance and Faslodex 3/2020. Faslodex only 11/20. Dx Stage IV, mets, ER+/PR+
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Jan 11, 2022 09:03AM sadiesservant wrote:

Tack33,

I'm also sorry that you find yourself here but agree that you will be in a better place once you are on treatment. There have been so many advances in the last decade with many treatment options to keep us going with a good quality of life.

Like exbrnxgrl, I have been very open about my diagnosis from day one. I believed this was the best approach for me given that I was still working full time (I've recently reduced my hours, more than four years after diagnosis). It just seemed easier to be up front as it avoids people wondering what's going on behind the scenes. In my case, I also felt it would lead to understanding if I needed time for appointments, or recovery from treatment. I had much the same attitude when I was originally diagnosed with BC in 2001.

As others have noted, the need to make people aware may depend somewhat on your treatments. I have lost hair twice due to chemo and am not a fan of wigs so it was pretty hard to hide that something is going on. I have also had monthly infusions of a bone strengthener which was delivered through a portable IV. It was great as it allowed me to carry on with my day rather than spending two hours hooked up to the IV in the hospital but... it was certainly noticeable and I had to have someone at the office help me to take it out. :-)

Throughout the last five years I have never felt pitied. Rather, I have also received much care and compassion. If anything, I get a lot of "You're amazing!" because people expect folks with MBC to be frail and weak. I do run across people that don't quite understand the disease, some of whom have had early stage BC but I don't find them intrusive.

Take your time to figure out what works best for you. Wishing you a speedy and effective treatment.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/21/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External Local Metastases 11/15/2017 Radiation therapy: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External Local Metastases 8/2/2018 Radiation therapy: Bone Radiation Therapy 11/5/2018 External Local Metastases 11/5/2018 Radiation therapy: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External Local Metastases 11/3/2020 Radiation therapy: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Other Chemotherapy 1/7/2022 Other
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Jan 11, 2022 09:12AM - edited Jan 11, 2022 10:30AM by aprilgirl1

Tack33 - I am so sorry you are joining us but please know we are here for you and you will find great support from others who are in the same situation. I still work full time, having had stage 1 node negative BC in 2008, my stage IV occurred in 2019. I was devastated with the recurrence. I also work full time at a career I worked hard to establish in 2010. It's really a personal decision on how much to share. When I was waiting for my biopsy results, my business partner started to freak out and said we should cancel a lot of appointments and contracts. My response was immediately, " HOLD ON. Let me see what I am dealing with and what the treatment will look like, I am not dead yet". At that point, I decided to hold off on sharing my new dx until I started treatment and could gauge how it was working and how I was feeling. My oncologist told me that she expected me to live for years, there are many treatments for me and we would not start with IV chemo, which is what I was expecting. I took her statement to mean 2- 5 years and my husband took it as 20 years but that is a discussion for another time;)

I started fulvestrant and Ibrance and it has worked extremely well. I am also fortunate that I have not experienced side effects so feel honestly really good right now. I have had dose reductions due to the impact on my white blood cells, which is almost expected with Ibrance. There is absolutely nothing wrong with telling everyone and there is nothing wrong with telling no one, outside your family members who already know. IT IS VERY PERSONAL.

Personally, I am really happy that I waited to see how I felt on treatment before I shared my stage IV because it gave me time to get used to my "new normal" and continue to focus on my health, my family and my personal life/work balance. I am now trying to figure out when I "retire" . I sell residential real estate and had my highest sales in 2020 (I got my stage IV dx 11/2019) and 2021 was a great year, too. If I change treatment and don't feel up to working, I will retire and most likely share my dx but once again, I will wait and see how this all happens. I also don't have long term disability insurance benefits as I am self employed. That could also factor in the decision to continue to work.

When I was stage 1 I was bombarded with "well intentioned" friends and neighbors that ended up needing a lot of reassurance from me that I was ok, and also shared horrifying and often incorrect info and fake remedies - not helpful. I have read that some stage IV women feel that by keeping a dx private, we are not helping people see how widespread stage IV breast cancer is and how many people are dx. When I am ready, which most likely means I need to change treatment and/ or retire, I will focus my efforts on showing the world. Right now I need to protect my energy.

Edited to add: sending you love and please know we are here for you as you navigate this challenging time.

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 11, 2022 09:22AM moth wrote:

I think this thread demonstrates the wide range of experiences which is dependent on hormonal markers and location of mets. That drives aggressiveness and treatment and affects very much what your life will look like and what changes you might want to make. It was strong chemo and immunotherapy right out the door for me plus participation in a clinical trial which is quite time instensive. I had to let go of tons of things & it needed explaining to people but you'll see here that others have been able to sort of get back to norm

So a lot depends really on your disease...and of course how you respond to treatment.

Hugs

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Hormonal Therapy 12/15/2020 Femara (letrozole) Radiation Therapy 3/2/2021 External Local Metastases 3/2/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other

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