When we get sick or receive a new diagnosis, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us.
That is the case with my friend Meagan. She was recently diagnosed with breast cancer. She needs help understanding her diagnosis AND navigating this new emotional landscape. Her clinicians have not yet recommended an expert peer group or a patient navigator, so I asked her if I could help connect her with an online community. She said yes.
Here, in her own words, is Meagan’s story (emphasis added by me):
“I was diagnosed on November 2 with stage 2 breast cancer. I just learned recently, from some lab results, that my cancer is “high risk luminal-type B.” I don’t know what that means though. I don’t understand these lab reports that were sent to me at all.
I’ve changed my surgery to double mastectomy, scheduled for mid-December, and now have an appointment with an oncologist (who I have yet to meet) three weeks after my surgery to discuss further treatment to prevent the cancer from reoccurring. This will probably be chemo. This new news has been upsetting. My original plan was just the surgery, but now I have no plan set in stone. I don’t know what my next steps are anymore, just that there will be more steps after the surgery.
The anxiety this causes is like a low key feeling of desperation that I’m keeping at bay by compartmentalizing my feelings. Because I can’t process this right now. There’s no way to process something that hasn’t even happened that I know will be hard but in what way, I have no idea since it will be a new experience. My biggest concern is how to be good enough for my kids while I’m healing.
Also, I’m scared about the reconstruction I’ve decided to do. I’ll have spacers in my body, the implants. Is this the right decision?
I would really like to hear about other breast cancer survivors’ experiences — any part of the process.
This is all new to me, and so are the feelings that have accompanied the experience. I feel like I’m doing pretty well now (even when I’m not) but the feeling well is not how I normally feel well, if that makes sense. Like I’ve somehow went into a totally new coping zone that I’ve never used before, and when I feel overwhelmed or like I’ve hit a wall, I’m digging for new life lines to pull me through, so this unfamiliar way of being feels foreign.
Because of the mental health issues I have struggled with my whole life, I have learned, and fine tuned specific coping mechanisms and healing processes that work well for me, something that I feel proud of. But having cancer has opened up this new space of hard that I’m unfamiliar with, where I think I feel ok, because I’m not depressed, but then I’m really not ok. It’s weird. I suppose I’m seeking validation for what I’m feeling, and advice on what I should be doing now — things that helped other cancer patients.
This is the first time I have reached out to anyone in this way since my diagnosis, so I hope this all makes sense.”
(Yes, I assured her, it makes sense.)
Friends, community colleagues, and anyone who has insights or resources to share with Meagan, please leave a comment below.
Image: A sunflower in a field, by Pablo LaVegui on Flickr.
I’ll start the ball rolling: When Meagan first let me know of her diagnosis and questions, I shared a podcast that tells the origin story of one of the friendliest, most informative breast cancer online communities I know: the #bcsm hashtag on Twitter (bcsm stands for breast cancer social media).
#BCSM podcast
I *should* have shared this page:
Newly diagnosed with breast cancer
And, since I know her husband wants to support her, I also shared a link to my friend Marc Silver’s book:
Breast Cancer Husband: How to Help Your Wife (and Yourself) during Diagnosis, Treatment and Beyond (http://www.breastcancerhusband.com)
Let’s save Meagan some time. What specific blog posts, articles, or books can you recommend to answer her specific questions?
While Meagan needs emotional support, what she urgently needs even more – in order to achieve the best clinical outcome – is a coordinated medical plan. From the description above, it sounds like Meagan has identified a surgeon, an oncologist and a plastic surgeon but what’s KEY is that these 3 physicians coordinate their approach and have a holistic integrated plan before a scalpel ever touches Meagan’s body. How to do that? Demand it. Firmly ask the surgeon (not the front office staff) to consult with the other 2 specialists prior to the surgery. Then Meagan should have a pre-op virtual visit with the surgeon to discuss the plan that will unfold over the next 6-12 months.
Thank you! From what I understand, Meagan’s diagnosis was a shock and the waves just haven’t stopped hitting her. This is exactly the type of advice she is looking for — keep it coming, please.
Please have Meghan reach out to Imerman Angels. Imerman Angels offers peer-to-peer, psychosocial support for cancer fighters, survivors, previvors and caregivers.
http://Www.imermanangels.org
Thanks, Stephanie! And thank you, also, for making the jump from Twitter to post here.
Another Twitter friend who didn’t have time this morning to write a comment shared the following recommendation:
Braving Chemo: What to Expect, How to Prepare and How to Get Through It, by Beverly A. Zavaleta MD
I recently enjoyed her Dr. Zavaleta’s interview with Fazila Seker on her “Breast Practices” show. Here’s the link: https://fb.watch/1Y-uXII25y/
I came here to repeat what I said on Twitter about the #BCSM community but you beat me to it bigtime. No surprise.
As life goes on and friends get hit with one emergency or another I keep remembering Fiddler on the Roof:
“Our great men have written
words of wisdom to be
used when hardships must be faced.
Life obliges us with
hardship so the words of wisdom
shouldn’t go to waste.”
It reminds me of the persistent value of what we’ve all learned (through you) about communities who view our challenges from our point of view.
“To us and our good fortune”… best of everything to Meagan. Be strong.
Thanks! Yes, the #bcsm community is always top of mind for me, but Meagan is not on Twitter and I think would have been shy about bursting in on the community with all of these significant, long-form questions. What I’m hoping is that the community (and anyone/everyone else) can share links to what they’d say if Meagan did post all of these questions on Twitter.
Another point that may not be clear: I titled this “case study” because I think it’s emblematic of a bigger issue — there are many people like Meagan out there, newly diagnosed and not hooked into any peer patient groups. How might we change that? How might other people who don’t happen to know me (or you) tap into what we know is a wellspring of goodness?
Hi Meagan,
I’ll echo what others have said above which is that #BCSM is a great community on Twitter to learn from. As someone with a BRCA1 Mutation, I went through a mastectomy in 2012. I found it helpful to learn from bloggers who wrote about their experience. Here are a few links:
https://nancyspoint.com/category/treatment/mastectomy/
https://bcsm.org/newly-diagnosed/
http://www.chemobrainfog.com/
https://heidifloyd.blogspot.com/
https://www.facingourrisk.org/blog
http://www.butdoctorihatepink.com/
Also: The fear for me was the hardest part. Beyond practical tips for navigating your decisions, I just want to say that you will come out on the other side of this stronger. This sucks. Cuck Fancer! Very sorry you are going through this and sending virtual hugs. Come find me on twitter: @BraveBosom. Sending you virtual hugs.
– Andrea
I have no advice. I was just especially struck by her reaction that it’s not really depression, but it’s like it. To me, it’s like losing the story. But the word “story” is everything to me, and may not help someone else. I do agree with the doctor who said the first big step is an integrated plan – the “story” of the plan.
You feel like you’re walking through a maze. You want answers. You question your choices. I vividly remember thinking: “CAN ANYONE PLEASE JUST TELL ME WHAT TO DO? STOP ASKING ME TO MAKE CHOICES ABOUT SOMETHING I KNOW NOTHING ABOUT!!” Unfortunately, that’s not the way it works. There is no right way to do cancer, only the way that works for each person. This is a piece I wrote with Heidi Floyd for people who are newly diagnosed for the BCSM website.
https://bcsm.org/newly-diagnosed/
I hope this helps.
The important thing to remember: try not to anticipate what you think is coming next. I drove myself crazy doing research anticipating what I thought the next doctor was going to tell me only to have something come from out of left field. And it was always something I didn’t think of.
One foot in front of the other – learn from those of us who have (sadly) walked this well worn path before. If I can find other posts, I’ll share them.
From the #bcsm blog: https://bcsm.org/newly-diagnosed/ and from my site: https://drattai.com/newly-diagnosed-with-breast-cancer/
Agree with the commenter who noted that it is critical that the surgeon and oncologist and radiation oncologist all communicate. Breast cancers that are luminal b subtype (https://www.breastcancer.org/symptoms/types/molecular-subtypes) are often treated with chemotherapy and this may be recommended before surgery.
Also very important to understand that more surgery does not result in better outcomes. If found to have a genetic mutation (testing will be recommended if age 50-ish and lower, or family history) then bilateral mastectomy may be appropriate. Otherwise it’s important to ask about the risks of additional surgery (more surgery – more complications).
Catch your breath, review some basic info, and then go back to your docs armed with questions so that you feel you are making decisions that are right for you
For Meagan and future readers who don’t know, Deanna Attai is Dr. Attai, a co-founder of BCSM and very well credentialed in this field. https://drattai.com/about-dr-attai/ … Past-President of the American Society of Breast Surgeons, among other things.
Listen I was diagnosed in May 2019, I’ve had surgery and chemo and radiation and now take an AI and I still don’t quite understand Luminal A and B!
I find that breastcancer.org is a great place to go when initially diagnosed- there are always people around to answer questions and you can connect with other people who are in the same place as you (ie. just diagnosed, diagnosed, and waiting for a treatment plan, planning for surgery, wondering about reconstruction or not). If she joins breastcancer.org I’m on there with the username 2019whatayear!
I’m not sure the details but I’m sorry that the medical team gave her the impression that all she would need was surgery b/c I don’t think anyone -except stage 0 gets that option.
Oh also, cancersupportcommunity.org is a great resource. When I was diagnosed I didn’t have the attention span for book reading, so I liked web reading and short videos.
And lastly I would say to Megan or anyone diagnosed w/cancer something someone else told me: You don’t have to be brave or strong or a fighter, you just have to show up.
Those are my top 2 recommendations as well!
From Sue Corralz, SPHR (@SueCorralz on Twitter):
Here are a few ideas that I hope will be helpful. 1) Request and retain copies of all reports, pathology, and scans. 2) CancerCare is an amazing nonprofit offering essential support https://cancercare.org 3) Helpful book by those who get it:
The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control
Thank you for sharing Megan’s message, Susannah. Your first two sentences are something I wish every newly diagnosed patient could read. I’m sure our friends who run such a large breast cancer support group can steer your friend to the right one. I hope she does wonderfully and I pray she’ll soon be safe and well.