Family and friends reactions to diagnosis

Posted by frogjumper @frogjumper, Dec 19, 2022

Maybe it's me but I find people's behavior fascinating. So my question and personal observation are kind of funky!
First I knew when I told people I would sugar coat it, and maybe because of this the reactions have all been "wow sounds like you have it under control" or some not knowing what to say at all, others hiding their feelings. And worse those that say really stupid things that come across as mean and blaming. And then the sister who I would never have guessed it has been the best sister ever!!! So overall some gains and losses! I will hold onto the gains and avoid the losses.
In my humble opinion part of the healing process is emotional support and we all need it as much as any chemo, radiation or surgery.
As a side note I only told my adult children, sisters, and 3 acquaintances and no one else.

How about you all, what were the reactions you received?

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@frogjumper : I was “lucky” enough that I only needed lumpectomy, no radiation and chemo. Plus, of course, Letrozole and Zometa. After making sure that there is not a genetic / hereditary component to my type of breast cancer, I decided to go mum. I told my brother/SIL who live overseas, and I told a neighbor/friend (who is a family counceler) down the road who has no conctact with my children or grands. And another friend, also totally out of the family loop, who went through a super tough experience with her own BC.
I did not see the point of getting my children and social friends all either stressed out, or at a loss for words. I had enough stress and anxiety all my own, did not need to deal with more emotions.
So far it worked. 21 months, all clear (yes, I know, don’t count my chickens), but I’ve gone from blind panic, to constant worry, to quiet awareness and caution.

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My daughter went with me for what I thought was going to be diagnosis of a cyst. I don't remember why she was with me, but she was recovering herself from a traumatic brain injury. At any rate she was there when the radiologist told me I was BIRADS 5 and with me when I saw my oncology surgeon for the first time. My other daughter lived with me and there was no keeping it from my son, so all three kids knew. I was divorced so no spouse support.

My mother, 87 at the time, said calmly "I wondered when someone would get that."

I told a few cousins after genetic testing, and maybe 3 friends over the first month or so. I wasn't looking for support. It just felt weird to be going through that and talking normally. Besides I figured a double mastectomy would show, but it doesn't!

I was so involved in my daughter's rehab and recovery from the TBI that I tend to forget breast cancer during that period. But 8 years later it is in the back of my mind.

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I was diagnosed with IBC stage 1 on November 21st. I have been very vocal with some many people, to a certain extent which surprises me. I think there are several reasons. One is that when my father was dealing with IPF (idiopathy pulmonary fibrosis) there answer to the question, "How are you doing?" was "Doing as well as can be expected." That didn't give people any idea of what was really going on. Another reason that I am sharing is that I am the 3rd of 4 in my family to have breast cancer (one 30 year survivor, one 4 year survivor). Yes, I have done the genetic testing and don't have the gene. But our family history stinks when it comes to autoimmune disorders, especially IPF. There are 3 other more important reasons that I share. The first is my belief in the power of prayer. Second, we are designed to live in community and bear each other burdens (helping where and when we can). Thirdly, is to remind everyone to get there screenings and to advocate for themselves in their care. Advances in testing and in treatment have changed dramatically.

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I became metastatic in October 2022. When I was originally diagnosed in 2013 with stage 2B I did double mastectomy, 8 rounds of chemo and 5 years of AI letrozole. I told everyone and most reactions were “You’ve got this” and hopeful comments. This time with metastatic I told only my 2 adult children, sister and a few friends I volunteer with. The friends reactions were deer in the headlines look and Oh my God I’m so sorry you don’t look sick! My kids and sister however were great support. I stopped talking about it to everyone except my son and daughter and sister. I could not stand the explaining and the poor you looks. I stopped explaining and kept my mouth shut because as far as I was concerned I was living with cancer not dying from it. I wanted to be treated normal and those who have not walked in my shoes would never understand.
I am doing great to date. Had surgery to remove some lymph nodes near liver area (but not in it) and am currently back on letrozole. Pet scans every three months show no progression currently. I only share with folks I think deserve to know and that works for me.

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I have always found that when it comes to a cancer diagnosis, people take their cues from us and then seem to digest the facts in their own ways.

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I was diagnosed in April 2022. Told my dear friend, spouse, two sisters, mom and dad. Family from over seas and came over for what I thought would be support. It was very stressful with my spouse since there has been family tension in the past. One of my sisters cut ties with me after she went back because I told them I didn’t want my parents to come back when I have surgery. What hurts is I was put in the middle and it was during my 2nd round of perjeta and herceptin. It was the period when I was too emotional and still thinking my cancer was a death sentence and all I could think about were my little ones. It hurts at the time how my sister was bold enough to cut ties with me as I was going thru this. I try not to think about her but when I do, it makes me sad. I know there are two sides to every story and my sister has every right to be upset but I know she didn’t care enough to let me pass thru this. But as they say, she hasn’t walked my shoes and hope no one ever does. If I am to have a redo, I wouldn’t tell my parents and sisters.

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People are funny! And their reactions can be surprising too. With my cancer diagnosis, I told my children and siblings and a few great friends from back east (I'm now living in CO). I let my kids tell their children when they were ready. I'm my own worst enemy in that I worry and stress myself out. I need to share my bad news to keep myself steady. As treatments continued and I shared with people I saw often each week. Some were very supportive, some asked how I was doing occasionaly and others forgot even though I saw them regularly. I was able to reconnect with a cousin who shared information about my maternal aunt.
We can not control how others will receive our diagnosis, but we can control who we continue to share with. I have found that the people who supported me are the friends and family who I want in my life.
Good luck with family and friends and your recovery

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Wow - what a variety of responses but what sticks out is the willingness of women to share their stories here. From prior posts, people will know that I was diagnosed with metastatic breast cancer mid July 2019. After a double mastectomy, a skin biopsy for what we thought was second stage Lyme disease tested positive for BC. Verzenio & Arimidex worked great for 19 mos when my cancer came roaring back with Ascites (fluid buildup in the abdomen). New meds & draining didn’t work so we pivoted to chemo of Taxol, Avastin & Fulvestrant shots. As I look forward to 2023, various cancer markers are way down and I am back on the tennis court and hiking everywhere.
Often people in life say “How are you” whether you have cancer or not. It is difficult to navigate the polite social inquiries from those that care. I just tell people that I am doing well and navigating the pesky cancer thing as best I can. People who I quote further will want to know more. I then see it has my opportunity to share the positive advances being made on a daily basis and that hopefully we can all do well with our ‘chronic’ condition. I am not going to sugarcoats it and say that it is all easy. But I can honestly say that I am a healthier, kinder and more generous person for my experiences and that I hope if I can positively influence or make someone else’s journey just a little less stressful, then that is my gift to myself from this mess. I wish everyone a healthier New Year!

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I was diagnosed and treated at age 48. My children were 11, 9 and 5. I told them of course, explaining in simple outlines. I had 6 months chemo after right mastectomy.
I told my mother and sister, of course. They live overseas. My mother was actually scheduled to visit us then- a blessing for all of us.
My sister is weird. After I told her I didn’t hear much. During the 6 months of chemo, when I needed comfort, there were no letters or phone calls at all.
I told a couple of close friends only. They were all so comforting.
Another unexpected disappointment was the reaction of the minister in the church we attended. Not a word. I guess we didn’t donate enough.
I guess we learn who we can rely on and lean on when we feel at our worst.

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First off I am sorry I did not respond to any of you I did not see the responses. Yes I am a bit technologically challenged!

I think after hearing these responses that there are clearly those that simply cannot cope with bad news/illness etc. And their silence is their own way of handling it. I don't think they mean harm by it but when you are on an emotional roller coaster it's nice to have those people to support you and listen. I found it difficult to not be angry at them but it's not going to help either. We all have our own demons to deal with, they have theirs too. For me I realized it was a detriment to my own health to ruminate over it all so I decided to forgive and forget.
But I also think that family and friends need to understand how best to support their people during times like this.
How do we communicate in a nice way that silence is not OK, that it comes off as hurtful. Maybe as a group of people with health issues we need to make a PSA commercial that helps people understand that we need them not necessarily for care but emotional support because I believe when we feel supported it gives us the energy to care for our health and heal.

Thank you all again for your insightful responses and may we all have the strength to keep on fighting and supporting each other xo

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