What do you wish you had known when you (or your loved one) were first diagnosed?
Share words of wisdom, unique tips, self-care, and coping advice for our newbies here! It will make a difference for all those joining us this year.
Thank you!
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I wish I had not felt so overwhelmed and was able to be more open. It took me weeks to be able to talk about it, but when I did, it actually helped.
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Hello, @perida! Welcome to BC.org, and thank you so much for starting the discussion. It's totally normal to feel overwhelmed and take time to open up after something this tough. We know that everyone’s situation is unique, but if it helps, here's an article from our main site about telling others after finding out you have breast cancer: Talking to Your Family and Friends About Breast Cancer
Again, thank you for posting and welcome to the community! We're so glad to have you here.🤗
The Mods
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That I cannot be responsible for everyone else's response to my diagnosis. I needed to figure out how I felt at first before I could "help" anyone else. It's like I felt guilty that I had cancer and now it was affecting everyone that I loved. Put yourself and your feelings first in this.
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@kotchaj If I could upvote that comment 100 times I would. People have all sorts of emotional defences, and other people's reactions are more about them than the patient a lot of the time.
This has been a very recent diagnosis process for me. But if I could go back a couple of months, I would have told myself to buckle a seatbelt, because the rollercoaster is getting ready to go, with many, many appointments, and ups and downs.
I can't remember the last time I was this busy. There's so much to keep track of, so much more information available than I could ever absorb at once. Taking in all the new medical information is like trying to drink a river through a straw. I have calendars and planners everywhere now.
My best advice in the first few weeks is to take a breather whenever possible. Log off, take a walk, keep pursuing a hobby, and focus on self-care (eat right, get enough sleep and exercise). It's gruelling.
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@doodler ,
It's so overwhelming. You are right that it is like drinking a river through a straw. There is so much to try and process, appointments to make, procedures to have, medications to take, and people to tell or not tell. It's a LOT. Taking a breather is very important.
I am sending you hugs.
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Agree with all- very overwhelming. Think of yourself first and remember you can always tell others that you would rather talk about something other than your bosum, when you tire of telling the story on repeat!
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I felt overwhelmed with the diagnosis and didn't want to talk about it for weeks. It was if not talking about it made it not real, so I didn't have to believe it. I finally told another nurse at work and broke into tears. I must have cried for 5 minutes. What I'm trying to say is talking to others helped me finally understand that I am not alone and have a huge support system.
On the other hand there are always "those" people who tell you what you should do for treatment and how their friend/sister/coworker did or did not do well. You have to remember that you have a unique immune system and even if you have identical location/grade/type we are all different. I learned immediately that I would determine how I was respond to all the treatments. I can't control anything except myself. Yes chemo was nasty, surgery hurt and radiation is the gift that keeps on giving, but I found something everyday to be grateful for. You can do this!
When I didn't want to talk to people about my breast cancer I would always start the conversation. I would say how are you (it gets them to say how are you). I would answer Im good thank you and continue with another subject. If they persisted, I would politely tell them again that I'm doing well and usually they didn't have the rudeness to ask again.
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That's a great strategy at redirecting the conversation, @laurabrentrn! Thanks for sharing that tip! 😊
I think you highlight a great point on the helpfulness and the difficult aspects about discussing cancer with others in your life. On the one hand, it can be an immense relief to be able to share the burden of your experience with someone who cares. On the other hand, sometimes folks can be so focused on trying to share information rather than listening to your experience that it instead ends up feeling quite lonely. So often one just needs to feel like someone else is listening and sitting in the pain with you to feel a bit of relief.
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i wish I would’ve of not felt like it end of the world. I wish that I wasn’t overwhelmed with so many emotions. Having a great support system helped. Talking about my diagnosis helped me and everyone around me to understand what I was going through.
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Hi @sodixon1, and welcome to our community! You are not alone. There are many here who also feel overwhelmed and understand those feelings. And we agree that having a supportive network and discussing your diagnosis are crucial steps in facing the first moments after diagnosis.
Once again, welcome, and thank you for your post! We look forward to hearing more from you.😊
The Mods
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I'm not sure I wish I had known this, but one thing that has been true for me is that there have been a lot of surprises along the journey - both medical and psychological. Some good things have come of it for me, too, even though of course cancer is not what anyone wants. Like laurabrentrn said, you can find things to be grateful for each day, and I find it is actually not that hard to do!
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I wish I had known that mammograms are not best preventative screenings for women with very dense breast tissue and that once I was told I did, I should have insisted on ultrasounds.
I was fanatical about getting my annual mammogram. September 2022 mammo showed no indications of cancer. September 2023 mammo with results followed by an ultrasound showing three tumors, too large for lumpectomies. I have a suspicion that an ultrasound in 2022 (or previously) would/could have caught something earlier.
I now let anyone who asks know that if they have very dense breast tissue (like my sisters and cousins all do and my grandmother did) to ask/demand ultrasounds instead of, or in addition to, the mammograms.
I am grateful the cancer was caught fairly early and my prognosis is good. I am also grateful for the wonderful family and friend support, and for this website/community.
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I didn't know this was an option! I've always been told at every Mammo that I have dense breast tissue. I've had a diagnostic u/s in the past because of a concern (turned out to be a calcification or something like that), but I just found out yesterday that I need to have another diagnostic u/s.
I'm a little more scared this time around because I'm older now (52 and hello, menopause), and because my mom is fighting a new level of breast cancer too (she was diagnosed in '12 but metastasis, new meds, etc). In addition, the place where I scheduled my u/s can't get me in until March 4 (today is is Jan 27th). I'm going to call some different facilities on Monday and see if I can get in sooner somewhere.
Thanks for listening if you've made it this far. I'm feeling really scared and overwhelmed but also trying to not let this run my life, ya know? ❤️
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It's understandable given your situation with your mother that you'd be especially anxious, @quiltycat24! And having to hold the anxiety until March would definitely make prolong the burden/stress. We hope you're able to find a facility that can take you in sooner! Keep us posted and fingers crossed for good results! :)
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Quiltycat24, hope you find an appointment sooner than March. That is certainly nerve racking. Wishing you good 🤞 luck!
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When I received this unexpected diagnosis, my instinct was to panic…and I did, briefly. To that we are entitled. However, I immediately made an appt with my internist who recommended a surgeon, who, in turn, recommended an oncologist. This happened over the Thanksgiving/Christmas holiday, so had to play the 'waiting game' a lot. I shared my diagnosis with good friends who offered immeasureable support. I studied my diagnosis and read papers in my free time and this helped me to ask the right questions (for me) to the various docs. I joined this BCO site and it was incredibly helpful and supportive. In hindsight, everything came together as it should have and I can honestly say that I have no regrets regarding any of the decisions I made…some of which the docs questioned, but ultimately supported. My advice...you WILL feel overwhelmed and out of control, but try to step back, make a plan, don't be afraid to lean on others, educate yourself to where you do have a basic understanding of what you will be going through (this site was very helpful with that), because you will be asked to make decisions about something very new to you. I am now facing a new cancer diagnosis (colon) and am finding that my BC experience has prepared me well.
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That is all wonderful and incredibly helpful advice, @murfy, thank you for sharing your perspective. We're so sorry about this new diagnosis, we're all here for you.
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That a huge wave of grief, fear, and heavy emotions would come after my active treatment was done and I had a lot more free time to just think. Unfortunately, I filled that time up and coped with my emotions by drinking too much. (I have since stopped that.) When I was going through treatment, it gave me something to do and to focus on. I would have planned ahead somehow for the post-treatment funk.
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I wish I'd known to make more copies and notes of the journey. Having had breast cancer 25 years ago I was asked all the former details this time a round. As luck would have it, I had kept scant notes, put in a marked box and set in the attic. This time, I'm keeping hard copies of all reports, digital imaging, times, dates, locations, names, timelines. A three ring binder I bring in with me with everything any doctor needs to know about this journey. I've read and understood every report so I know what questions to ask. When this new journey is over, I'll put it all in another marked box for storage.
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While we always hope that it is not coming back, @lumpybobcat we do agree that record-keeping and saving can be so helpful. We appreciate you chiming in!
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Hi, Newbies. I know how hard it is but you aren't going to die tomorrow. I was convinced 4 years ago that I would be dead within the month. It does get easier once treatments are rolling along. One day at a time.
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We love your perspective, as always, @elderberry! One day at a time, indeed.
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That I finally understand what one day at a time means. That I have an incredible support system and so many friends and family that love me. That this is just a poopy way to start a new year. That this time next year I’ll be back to my usual nerdy go lucky happy self. That I self medicate with knowledge (I have too many great friends and two sorority sisters who all survived and thrived after breast cancer).
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Elderberry - thank you so much for this reminder! I really needed to hear that as I am coming up on my 1 year cancer free anniversary (had BMX 2-8). Lots of thoughts right now about what ifs..and possible recurrence..but I need to just remind myself: do I want to spend my time living or just thinking about living. I'm inspired by this website and the stories posted. Gives me strength!
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@kyrexvstuesday "Self medicate with knowledge" is something that made me chuckle in agreement. What a elegant way to describe what we do. I'm the same! I keep an extensive iCloud folder full of journal articles relevant to my "scary tumor" (by the way, don't ever google those terms on an image search!).
I think what I wish I knew is along the lines of @elderberry in that most breast cancer diagnoses aren't emergencies. We have time to make decisions that are right for us, and the whole treatment and beyond are like an iron man marathon followed by an endless hike on the Appalachian trail. The testing, treatment, side effects, and fact that we're never quite the same for a lot of reasons is a permanent change to our life. However, at a week away from my 2 years from diagnosis, I've come to realize that my trail hike is filled with renewed appreciation for the good days which far outnumber the bad. Many many days are so full of either joy or frustrations that have nothing to do with bc or my health. I've found that it's easy to appreciate the times I can stop along the trail and notice the scenery and embrace the relationships I make with fellow hikers along the way.
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@kyrexvstuesday - luv your analogy to an iron man marathon followed by an endless hike in the Appalachian mountains!!! Made me chuckle out loud! Thank you!
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Keep them coming!! Soooo helpful (and even funny!)
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First time around bilateral mastectomy, wish I would have known to make sure - positively sure - the plastic surgeon made the first cut and not the general surgeon because then plastics wouldn't have had to work so hard to make a football and a basketball look symmetrical ;P
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I wish I would have known that bilateral breast cancer did not mean the cancer had spread. My GP did not tell me that, but my husband and I were relieved when that was the first thing the breast surgeon said to me. It’s too bad that we had to wait ten days to learn that.
I wish I had known about this site as soon as I was diagnosed. This was my best source of information.
What I wish I had known prior to my diagnosis is that my father’s metastatic prostate cancer could mean that my sister and I were at high risk for breast cancer. If his doctors had recommended brca2 testing to him when he was diagnosed, my story would probably be different.
What I *did*know was that breast cancer was not going to steal my joy, And I was right!
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I wish I truly understood what was happening. I had sooooo many people tell me about their relatives and what they went through, and it all just made me more scared and afraid to talk. I found a lady's journal on Kindle (180 Days of Chemotherapy and Radiation) after I was almost through. She didn't have the same things happening that I did, but reading someone go through similar events with the fear, anger, denial, hope, and family helped put things into perspective. It was real in a way that second hand accounts aren't.
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