Sharing your diagnosis?: I'm curious as... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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Sharing your diagnosis?

lashinator
lashinator

I'm curious as to how many of you have told your immediate circles of your diagnosis. I have pretty large groups of girlfriends and a supportive extended family but I have chosen only to tell my sister, brother and my one best friend. My husband has been there for it all, but he is currently in denial.

I find that I can't share for a few reasons. 1. I don't know what say. I know you are all so positive, but how much do you share. 2. I don't want the pity party. I can do that very well on my own, and need others to treat me as normal, doing all the same things I was before (if I can). 3. The more I say it out loud the more real, painful, and emotional I become.

I am one month diagnosed with stage 4 liver mets.

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The day I found out I had gone to my orthopedic doctor for results of shoulder X-ray. I had tripped in the street and hurt shoulder. He called me at work to come in. When he told me it was bone cancer I went right home and told my husband and cried a lot. Called work and told my friend. Worked in doctors office. In days following I called my kids, I have four grown. Tondo my best friend. It spread a little from there. My kids told my oldest grand kids. I tried to be positive from there had bone biopsy and found it spread from the breast. To late for lumpectomy it had spread to hips back arms small one on lung. Husband in denial thinking he will find something to help on internet. My kids never talk about it except to ask how I feel. They come to visit more often. I can talk to my one close friend, but no one really likes to know how you feel. I have been getting things in order thinking it could be tomorrow. Doctors never say a time. But joining this site I hear of women having it for 10,14 years. When one meds stops working they try another. I was diagnosed July 2016. Now I think I will be around for years. I am 72 so I retired so I can go on cruises and things. Mostly my back hurts so I can clean house paint I just need to sit when my back hurts. It is very fresh to you so cry if you need to. You need time to get used to it. But I will tell you they have meds that will keep you going for a long time. Talk to this group and you will feel so much better. What course are they taking with your treatment as of now?

I'm on Ibrance/Letrozole with lupron shot monthly. Finishing my first cycle- 3rd wk on Ibrance, next week is off. Will turn 54 at the end of this year.

I feel like this is such heavy weight, that it is not fair to share and make others head down sorry, mopey lane. I don't want to burden my son away at college. He needs to focus on other things. If these drugs keep me going for a huge amount of years, then maybe it's too premature to share the news, and look like the boy who cried wolf.

I am conflicted. As for now, yes- I will take the time to think about it and continue not to share as of yet.

It will ake awhile for you to adjust to the news yourself. I have stage 4 mbc. I have been on Letrozol and Ibrance with xgeva bone injection once a month. My doctor said Letrozol prevents new cell from getting in, and Ibrance helps shrink timers that are there. So there is hope that you will feel better soon. I try to think of it as a tonic illness. It helps keep my mind off of it. But it took me almost a year to get to this point. You are new to this so it is normal to be upset. Just take care and if I can answer anything for you let me know.

Barbara

Clair19
Clair19 in reply to Jerseygirl45

I agree most of my friends Love me but I don’t share much about my Cancer. Mostly just family. I inherited 4 sister in laws after getting remarried. All are in medical field, good for me because my family is gone except a son. Love to all. Leslie

I had the same issue when first diagnosed. I still don’t tell everyone I know, but have told a lot of people. Mainly I just say it is not curable, but it like a chronic illness. I still don’t think many things f them understand the full picture. My daughter has been helpful with telling a lot of family. She has been more open with people, I think. I on the other hand have taken care of people for a long time and think I tend to try to protect their feelings so maybe that is why some friends have a hard time understanding just what stage 4 is like. I wish you luck in letting people know and also in your treatment.

Thank you for your reply. Glad you are all out there.

I would say take your time telling people because once they know it is out there. Now that’s not a bad thing, but when I first found out I panicked and went around like henny penny telling family, friends and a lot of people at work. Now I wish I hadn’t told so many people. I would have been more selective especially with work friends. I get a lot of support from my husband and his family, a few close friends. I think my son is in a bit of denial. But glad he knows. I would have liked to maintain more privacy at work, but handle inquiries with brief, positive responses. I am 4 years in and look pretty good. The worse thing for me is the side effects of the meds, but I deal with it and work as hard as ever. This is all pretty new and shocking for you. Put your own level of need and comfort first. You have plenty of time to tell others as you choose to.

8576
8576 in reply to nstonerocks

I agree with you. Although, we are all different here, I found I told my family and two very closest friends and then didn't talk about it much. In fact they ended up saying to me, but you never talk about it. No, I don't. I think I felt they wouldn't understand the depth of Cancer. I didn't understand it at first myself. I did find not telling everyone, right away was wise because the subject eventually came up naturally anyway. Then was a better time then making announcements to everyone right away.

I am a fixer anyhow. If something isn't right, I just get on with making it right. Trust me, I go to great lengths to fix things. So probably, in the back of my mind, I thought, I'll fix this! Ha! I am 10 years in and still trying to fix this damn disease.

Cheers, June S.

I think we all have to figure out what is right for us. I am open about it. You have to do what feels right for you. Also I told people because I did not want people knowing and tiptoeing around me pretending they did not know. How often do we know the truth about someone and keep it quiet because it is a secret. I did not want to be the secret. Also I think for me it brings awareness that breast cancer exists and so many of us are affected. Again we are all different and must dance to our own drums.

Everyone knew before me. I’m a nurse at a community hospital. I had a cough (that I had talked to my colleagues about) that led to scans that led to a Vats procedure. They did a frozen section of my lung tissue so by the time I woke up from anesthesia everyone knew my diagnosis but me. Recovery room Nurses I’ve kniwn for 30 years were wiping their eyes as I woke up.

I don’t regret everyone knowing. I’m on intermittent leave and the work support is phenomenal.

Hi!

I am an open book. From day 1 (1999) I would tell anyone that asked. Since dx mets in 2013 i find it even more important to share. When i tell a newly dx person (or caregiver) that i have lived with MBC since January 2013, it gives them hope.

I can honestly say since 1999 i have never been thrown a pity party. Everyone who loves me is encouraging and positive. You might have some friends who will quietly fade away but that's ok. I have many churches that put me on their prayer lists when my cancer goes active. I'm currently in a non-active cancer time and my friends and family and churches are beyond excited. Its so nice to know how much others care, especially on days where you feel discouraged and down.

This is just my perspective. Everyone is different :) Glad you are on here to talk with others going thru this.

Melissa

I was diagnosed in dec 2016 with bone Mets. I’ve only told my husband and a few select friends. Ones that treat me the same with or without this diagnosis. I have 2 teenagers and I have not told them. I don’t feel comfortable telling them yet. Plus I’m doing well for the most part so I don’t feel they should have anymore stress. I’m still trying to adjust to the new normal. I still have my crying days but then I realize that this is getting me nowhere so I put on my big girl pants and move on. Everyone is different you have to do what you feel is best for you.

I was diagnosed with mets in my eye 8/17. My breast cancer was stage 0, 10 years ago,," currred". It was a big surprise and took me awhile to get my head around it. I am 63 and worked as a nurse practitioner in internal medicine and they had to clear my schedule and have a plan so had to tell my bosses. They have been very good protecting my privacy. They have all been a great support. I took my time after that. Told my immediate family and close friends after a couple months and before i lost my hair. If you lose your hair it's like out there, and sometimes it is easier to formulate a basic response for people. Only you can decide what your comfortable sharing. Just dont hesitate too ask for help from people when you need it My experience is people dont pity you, they respect you and just wish you the best as do all of us on this site !

You have to decide what is best for you. However, please don't feel bad about crying. It may be labeled as a sign of weakness, while in fact -- for this diagnosis -- it is grieving. And appropriate. All of us, in this club, have grieved, and it will come out at some point, so why not now when others will understand? I shared with all when I was diagnosed. I cried every time. Many of them did too. My thoughts on this were 1. The diagnosis is real -- sometimes real life sucks. 2. They deserve the chance to decide how they need to handle what is indeed not going to go away. 3. They now understand why I keep going to the oncologist. 4. When asked what they can do to help me, I would ask them to send me any (legitimate) articles on breast cancer breakthroughs they may find. I never received a pity party. With it out in the open, it has enabled my friends/family to get to the point where it is just part of our landscape. No secrets, nobody caught unaware. And also, it took me about a year to get to a point where I didn't cry. I'm 4.5 years out now, still on my original protocol.

Dear Lashinator, you need to share or not share on a level that is comfortable for YOU. There is no right or wrong way to "grieve" such a diagnosis. That said, you were just diagnosed with Stage 4 one month ago, you are likely still reeling from all the information that has just been thrown at you. It is a lot to digest, especially since your husband is in denial right now. Take some deep breaths and take care of your needs first. For me, I found it helpful to share with my large circle of friends because I needed their love, support and prayers, however, at first I was not completely forthcoming with just how bad it was. I had mets to literally every bone in my body. My oncologist told me he had never seen it that extensive on the bones. I had a hard time letting everyone know that part. Caringbridge was very helpful in keeping everyone updated with my progress, set-backs, and needs. I was diagnosed December 2012 with Stage 4 right out of the gate (and just 6 months after a completely normal mammogram). I was on chemo for one year, had a couple years in "remission" (or whatever is the correct term these days), and have been back on chemo for almost 2 years.

I have responded exactly as you have. I was diagnosed with MBC in November 2017; and have only told my ex-husband, children, sisters, their immediate families, and one close friend. I have not told my 94-year old mother.

Oddly enough, when I was diagnosed with Stage I in 2000, I announced my diagnosis in the form of a newsletter to my children's middle school, reminding all mothers to never forget their annual mammograms. It felt as if my early stage disease had offered me the opportunity to provide a "heads up" while I underwent treatment for my "cure."

For me, with this more serious Stage IV diagnosis, I don't want any friends or acquaintances treating me differently than they did prior to my news. My support system remains my immediate family who are all "ones in a million." I totally understand your decision! Best of luck and blessings to you on this journey! Linda XO

I tell everyone and have found the more I say it, the less important and frightening it seems to me. So, I don't tell everyone to get them to sympathize but strictly for selfish reasons!! It helps!

We need to share with those we are comfortable with. I have told my close friends and family. I don't tell people I don't know well. The folks that can offer their support, those are the folks I tell. Take care every one.

I agree with Tap321, I did not want to be the secret. I was diagnosed in January stage 4 de novo with Mets to my lung. I have two grown sons but I'm on my own. So I was devastated and scared and told my friends. At first they were all very concerned and wanted to know about every appointment, every test. But after a while I feel that they just don't know how to talk to me about it. I would tell them that I was scared and I would be told to have a nice night. Some are very concerned and will call to see how I'm doing. I've had one roll her eyes at me and tell me it's just a chronic condition than and I'm not dying anytime soon. I have been told to try to look at it as a chronic condition like diabetes or high blood pressure but I am unable to do that at this point. I try to tell myself that I'm not sure I would know what to say to somebody in my situation either. So even though I didn't want to be the secret at the office or in my circle of friends I sometimes wonder if I did the right thing by talking about it. I decided that I would start seeing a therapist so so I could talk about my fears and depression.

SophSP
SophSP in reply to Mcap

I am really shocked at how you were treated! No one should roll their eyes at you as if all you have is a sniffle that you will soon get over. Yes, metastatic breast cancer is a chronic, long term illness. But that does not mean someone should treat you like your illness is trivial. Your feelings matter.

Sophie x

8576
8576 in reply to Mcap

I think there is no right or wrong. We do what we need to do at the time. That said, no one should tell you how to feel, ie; rolling the eyes. So sorry you experienced that. I guess she thought she was being helpful! But so wrong.

Cheers, June S.

If any of your friends are currently going through cancer treatment or have had cancer recently they may be someone to reach out to. I have a woman who was married to my cousin. So. Guess you would call her a cousin in law. She had breast cancer last year. We started talking a lot and I helped her through some of her scary times. Then in October when I was diagnosed we began checking up on each other almost every day and sharing our feelings and support. This has been such a blessing for both of us.

It is surprising how some people just jump out and are there for you and others you would expect support from just don’t know how to handle it.

Just don’t feel like you owe it to anyone to have to share your diagnosis. And once you have that doesn’t give them enterance into your inner circle. I have a great support group of friends and relatives and each of them knows different things about my diagnosis and about how I actually feel. Most just give me quiet support and love. I wish you a core group that is there for you.

Thank you all for replying. I am taking everything into consideration.

All the best to you all

I have told only 2 people at work, but most of my friends and acquaintances know. It took me a long time to spread the word, and I was ready for whatever came my way. I knew that once it was out I would get lots of people telling me horror stories (as did happen!) they just had no idea what to say, and tried to fill the void. At that point I was ready and it was not harmful to me. My mantra went something like "that is not my story". I was at a point where I had accepted my diag. and was OK with it. As strange as it seems, I did (and still do) not have fear associated with my diag. I attribute that mainly to my meditative practice. It is a tool which helps me accept my circumstance, right now, whatever that is, even C and helps me realize there is so much more to everything than the C. I think that this fear you speak of is worth addressing, and maybe meditation is a way for you to do it. My very, very best to you as you find your way to wellness!

Most of my family and friends know I have breast cancer, but only one person other than my husband knows it's metastatic, a close friend of my husband's. It is up to you if and when you tell people. I found it very difficult to even tell people of my initial diagnosis (when I was told it was early stage and curable) but once I told a few close friends and family members I told them to spread the word, as I hated having to repeat myself all the time. Breaking the news to my dad was the hardest, as we lost my mum to non-Hodgkin's Lymphoma in 2004. He was devastated when she died, as we all were, so to hear that I also have cancer was hard for him to hear. My husband and I took my dad to the beach recently and we were talking about a little girl who had died at that beach. He said that to raise a child and then lose them would be the worst thing ever, so I knew I could not share everything with him. I am trying to spare my dad the pain and anguish he felt when my mum died.

All the best,

Sophie x

Just realized how old these post are. For sure you are all in a different place today.

Cheers, June S.

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