Comments
ChrisB911 t1_jbxfnn5 wrote
This is honestly the richest post I’ve ever seen on here. This data holds an incredible amount of weight and conveys so much emotion. I appreciate this post probably more than you expected and I’m not even personally connected to any cancer patients or survivors. I wish for the best of everything for you and I’m so sorry you had to endure all of this. You kickass.
BluebellsMcGee OP t1_jbxggvr wrote
Thank you for the very kind words -- that's the impact I was hoping it would have. Before being diagnosed, I had no idea how long the breast cancer "journey" would be. As I approached each milestone, I thought "ahhh I'm finally in the home stretch!" and my cancer team would say "actually, there's more..." I'm grateful there are so many lines of treatment available for my type of cancer (the alternative would suck), but life truly will never be "back to normal" for me.
I_LIKE_LIMA_BEANS t1_jbxrka9 wrote
Fellow breast cancer survivor here (five years out from treatment, 3.5 since second reconstruction). The whole, “but wait…there’s more!” really resonated with me. It’s such an unpredictable disease, and like you wrote, it differs incredibly not just by cancer type, but by individual. Over time, the twists do seem to get a little easier. I hope your journey eases soon, and the new normal is a good one.
Edit to add: also super smart to have this to explain to loved ones. I found explaining my diagnosis and treatment to be very emotionally difficult and draining. And then you end up comforting your friends and family because they feel so bad for you. My husband began sharing my news when he realized, which made it a lot easier for me (though tougher of course for him). Fuck cancer
ChrisB911 t1_jbxgzae wrote
It literally brings tears to my eyes just thinking about all you’ve been through.
You should do another one on the costs associated, like insurance coverages and out of pocket expenses, etc. I have heard it can be crazy and I’m sure other people would be interested in this info.
newleaseonlife1 t1_jbzjoz0 wrote
I've only had breast reconstruction with no cancer and I feel like I've been put through the ringer with no end in sight to the surgeries and procedures and complications. I don't think I could have gotten through it had it been cancer as well. Kudos to you for fighting this hard.
MegBundy t1_jby1od6 wrote
I also had triple positive breast cancer. Most of my treatment was the same, but two years in, I’m only on Anastrozole. I’m amazed and so grateful for how effective Herceptin is!
I love this timeline. It puts a wonderful visual to the treatment.
gedmathteacher t1_jbyerau wrote
I don’t see Herceptin on this
BluebellsMcGee OP t1_jbyh4o7 wrote
I had Herceptin in my TCHP chemo cocktail. MegBundy most likely achieved pCR (pathologic complete response), which means her chemo completely killed her cancer.
When a triple positive patient gets pCR, she gets Herceptin infusions (or shots).
When a triple positive patient doesn’t achieve pCR, the prognosis isn’t as rosy, so they throw stronger drugs at it, including Kadcyla, Nerlynx, Zometa, and whatever other new treatments they can concoct (new treatments are coming out almost every year).
MegBundy t1_jbyn45x wrote
I didn’t achieve pcr, but hopefully my double mastectomy removed all the cancer. I often consider about how much the cancer would have spread without Herceptin. I don’t think the previous poster , u/gedmathteacher , realizes that triple positive was very aggressive and deadly before Herceptin, which has only been around for twenty years. My husband met one of the researchers who discovered Herceptin, Dennis Slamon, and discussed my therapy with him when I was first diagnosed. TCHP is standard treatment for the vast majority of triple positive cases. The H in TCHP is Herceptin, and TCHP is listed in the first line of the graph.
Herceptin can go by other names, Trastuzumab, Herzuma and Ontruzant, so maybe that’s confusing.
gedmathteacher t1_jbyphnk wrote
My apologies. Herceptin saved my sisters life. Now that I see where it is in the timeline, it’s the same course she had. She had the same cancer as you and wrote a book about it. I have no excuse to be so ignorant
Edit : she had triple negative
Ch1Guy t1_jbz8d1h wrote
Triple negative means the cancer doesn't have estrogen or progesterone receptors, or make excessive HER2 proteins.
Herceptin is generally for HER2 positive cancer.
MegBundy t1_jbyq89i wrote
Triple negative is a terrible prognosis. I’m so sorry she went through that. It is so wonderful she survived.
gedmathteacher t1_jbysxt7 wrote
Ugh she was HER2+, ER-
Thank you science regardless!!
MegBundy t1_jbytrpu wrote
So many cancers out there! How can we keep track?! 😆
Ch1Guy t1_jbz7k97 wrote
Herceptin is the H in TCHP Taxotere Carboplatin Herceptin Perjeta
Snickerlish t1_jbz9yby wrote
As a marketing professional, I’m impressed you made that in Canva! lol my mom just went through breast cancer surgery and treatment in 2021-22. We sympathize with the timing of the process 💕
JuicyJew_420 t1_jbzw7bx wrote
Shit that looks like hell... But congrats on living! I'm glad you are around to make this post
Careful-Combination7 t1_jc0va6l wrote
Thank you for sharing
Methescrap t1_jbxd2wt wrote
Data is indeed beautiful, you having to deal with this kind of shit certainly is not. Hope you fully recover, best wishes from Germany.
Delouest t1_jbyydlg wrote
Cheers, I've tried to explain to my friends and family that even though I did chemo, mastectomy, and reconstruction (no rads in my case) in 2019-2020, I am still being treated with tamoxifen, and because I am BRCA2+ I have a lot more surgeries ahead. They often congratulate me on being "done" and "beating cancer" but it is a constant, ongoing process that still means I am at the hospital for scans and checkups 6 times a year. All the best to you.
BluebellsMcGee OP t1_jbz1jvl wrote
Yes -- people want me to reassure them that I'm "okay now," or "in remission," or "cured," or that the surgery "got it all out," or "had clear margins." When they ask like that, I know they want me to reassure them; they don't really want to hear the nitty gritty of how I'm doing, and what other treatments are still ahead of me.
newleaseonlife1 t1_jbzk6o6 wrote
I'm BRCA2 and CHEK2 as well. It means you are never done in my mind. I've had an oophorectomy and mastectomy, but I need colonoscopies every 3 years, skin scans every year, etc.
Delouest t1_jbzl5fk wrote
Yeah it's neverending. I had the mastectomy at 31 when they found the cancer, and I'm 35 now and we're starting to discuss removing my fallopian tubes now to reduce the ovarian cancer risks and ovaries later since I can't take hrt and my family history has issues related to menopause (very weak bone and heart health on my mom's side). Already had to have a surgery to check for issues with growths from tamoxifen after 2.5 years taking it. I'll probably be doing the tubes this summer. I want to eventually speak with my plastic surgeon about removing my implants and going flat. I've not "warmed up" to them and live in constant discomfort from the implants and just kind of want to be done with that. Anyway, chek2 and brca? Damn that's unlucky. I'm really sorry.
newleaseonlife1 t1_jbzm2du wrote
I had the mastectomy and clotted twice in surgery, which led to a huge necrotic wound that took 3 months to heal. That led to a blood disorder diagnosis. In revision surgery, I got a staph infection, my incision ruptured, and I needed IV antibiotics. The CT scan found an enlarged heart. And this is all WITHOUT cancer. Yet. Oophorectomy was ok, but I struggled for a bit when I had to get off the estrogen due to the blood disorder.
Have you considered a DIEP reconstruction? Even with all the problems I have, my boobs/figure look pretty great, I feel somewhat like myself again (loss of sensation is hard) even though I lost a nipple due to necrosis. It'll get reconstructed. I'm really happy with how realistic everything looks and feels. It was a really rough recovery the first 2 weeks and I just had to move really really slow, but I was back to myself 6-8 weeks later aside from strenuous exercise
Delouest t1_jbzmtq4 wrote
You've really had a string of terrible luck!
My surgeon said I'm not a candidate for diep due to being to small and I have pretty bad asthma and can't be under anesthesia for the length of time they'd need. I think that was his explanation. This was in 2019 and I was more concerned with the cancer and treatment and just kind of accepted what my team was telling me the plan was. At this point I'd honestly be happy to be flat. I was never very attached to my breasts, and I won't be able to get feeling back either way, so it's just kind of moot. At the end of the day though, I'm probably going to avoid extra surgeries so it's probably going to be just whatever they say I need to replace the current implants and just do it at the same time.
newleaseonlife1 t1_jbzq9u2 wrote
So have you!!
That makes total sense. The length of the surgery is hard on anyone, and you shouldn't go through a recovery like that if you ultimately don't care as much.
I very very much get that "Idgaf I just wanna be done with it" feeling. Shit has been so rough I wanna keep my plastic surgeon as my emergency contact 🤣🤣. I don't even wanna have a gallbladder removed without him in the room
BluebellsMcGee OP t1_jbzp5gf wrote
Out of curiosity, what's your blood disorder? I have FVL and MTHFR, which is why I chose implant-based reconstruction rather than autologous reconstruction.
newleaseonlife1 t1_jbzpver wrote
My blood disorder is unknown. I've had high factor VIII and protein S, high RBC and high hemoglobin. My cbc and coagulation workup is literally different every time. Until they have a better idea, my treatment plan is lovonax after surgery.
emmet80 t1_jd6ia0s wrote
Can either of you say more about this? I am considering my surgical options and also have MTHFR and FVL mutations.
BluebellsMcGee OP t1_jd6kii2 wrote
Because I had FVL, there was an increased risk of an autologous fat transfer failing. I opted for silicone reconstruction.
AskMrScience t1_jbzubbi wrote
You're the first CHEK2 person I've met aside from my friend Debra. A few years ago, Debra went in for surgery for abdominal pain that everyone thought was an ovarian cyst and they found fucking appendix cancer. You have never heard of it because it is not a thing - it's literally "1 in a million" rare. When she told her doctors "Oh yeah, my uncle was diagnosed with appendix cancer, too", the surgeon told her to run, not walk, to a medical geneticist. Surprise, CHEK2 mutation! It explained why breast and ovarian cancer run in her family, but everyone had tested negative for the common BRCA1/2 mutations.
newleaseonlife1 t1_jbzwfo5 wrote
My friend Katie died of her chek2 mutation at age 32. It was long and horrible and she told me that if she could go back, she'd get the surgeries. It's not as famous as BRCA but it has a range of health effects. No woman on that side of my family has lived past 50
AskMrScience t1_jbzznvu wrote
Debra was also about 30 when diagnosed. She got lucky: if you catch appendix cancer in Stage 1 like they did for her, it's basically "snippy snippy, congrats, you're cured!" She's since had all the other recommended prophylactic surgeries and gotten her kids genetically tested.
I'm a geneticist working on cancer treatments, so this is all Relevant To My Interests. Most hereditary cancer syndromes are caused by a DNA repair or checkpoint gene being mutated (no surprise, CHEK2 = checkpoint gene). I'd think you'd be equally likely to get cancer in any tissue type with that kind of problem. But instead, there are very strong patterns to which organs the cancers tend to start in.
Hooray for being able to ID these mutations and what tends to go wrong. Now we have some clue what to watch out for in each person. And I wish you better luck going forward.
newleaseonlife1 t1_jc00mzn wrote
Thank you!!! Hoping for another 20 or 30 years
dnsdiva t1_jbxolaf wrote
The feels are so intense with this one. Thank you. TNBC stage 3.
MegBundy t1_jby1xxp wrote
Stay strong! You got this. I have triple positive. I know the battle is long and hard with TNBC.
BousWakebo t1_jbxoxra wrote
How are you doing now?
The visualization is incredible, I had no idea how much went into treating breast cancer. I always thought it was a mastectomy and a round of chemo.
BluebellsMcGee OP t1_jbxxgvw wrote
This is such a hard question to answer honestly... I don't really know how I'm doing. Physically I feel okay. Mentally/emotionally, I'm scarred, but not unable to live my life. But there is always a chance that my cancer cells went roaming in my body and are taking root again, so I'll never really know if I'm ok.
FlaxenArt t1_jbxrjug wrote
Neither did I! This was really enlightening
ConsiderationIll374 t1_jbxngyq wrote
What a great way to visualize information that friends and family will be asking for! I'm so sorry that you're going through this. Wishing you all the best in your treatments.
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DokeeOkee t1_jby17sl wrote
This is so nice. Thank you. Please consider posting to r/breastcancer.
Do any of you r/dataisbeautiful people know of a breast-cancer resource for calculating risk for a very specific case (T1a N0 ER+(100%), PR+(9%), HER2- invasive ductal carcinoma, mid 50s in age, very-dense breasts, family history of leukemia)? There are tons of studies on breast cancer, but we haven't found something to pull them all together to calculate risk to help guide treatment. NCCN guidelines are nice but are too general and ignore our aggravating factors. The one I'm supporting loves data. I think a nomogram would be great.
Mr_Brownbear t1_jby9rsl wrote
To be honest, if you’re looking for a resource for guiding treatment, that pulls all studies together to make a recommendation, you’re really not going to find anything better than NCCN. NCCN is created by national experts in medical, surgical and radiation oncology and is updated very regularly, as practice changing studies come out.
Not to say that it is the end all be all of cancer care, but it’s probably the best out there.
If you have any particular questions about what is recommended on there, and why, I could probably point you in the right direction of the clinical trials that established standards of care.
Source: am oncologist
BluebellsMcGee OP t1_jby7kfs wrote
I did post a link to the graphic on r/breastcancer, but that sub doesn't allow images to be directly posted on it. (BTW that sub is a wonderful resource for breast cancer patients, and has been one of my most frequently visited websites throughout!)
McDuchess t1_jbysdhd wrote
I’m so glad that your treatment goes out to 10 years.
My sister’s did not.
It stopped at about 4.
She was DX’ed with stage 4 at 9 years.
BluebellsMcGee OP t1_jbyubk8 wrote
I am so sorry for you and your sister. I know that metastatic breast cancer treatment has come a long way, but that still sucks.
McDuchess t1_jbz7wfi wrote
It does. She managed to live an additional 2 years after her DX.
But her care before that was abominable (retired RN, here.)
Dietcherrysprite t1_jby0eyy wrote
Try reading NCCN guidelines. This is so much easier to read. Someone should do this for all cancer types!
IamGraysonSwigert t1_jbxk323 wrote
Wishing you the best; stay strong, were all rooting for your success.
DevilKit t1_jby7m4k wrote
Reading this makes me feel even more terrible for people with cancer. Like great you survived not take more pills than juice wrld
Raz0rking t1_jbybsvf wrote
Damn. That are a great many pills you have to take.
You doing OK?
BluebellsMcGee OP t1_jbyhj60 wrote
I feel ok today. The Nerlynx side effects are my current challenge, but I’m hopeful my doctor can get me the recommended prescriptions tomorrow to help relieve some of that!
painted_anvil t1_jby4v3v wrote
I wish you all the best stranger, my dad has Non-Hodgkin's lymphoma and after 5 years of watching and waiting he's more then likely going to be given a treatment timeline soon as well.
Kindly-Scar-3224 t1_jbxsuik wrote
It’s really painful to see you have to going through this, hope you get well before you know it
jerseyknits t1_jbyb44o wrote
this is very helpful for me to understand why things keep shifting as someone is undergoing treatment. thank you for making it
Equivalent_Touch t1_jbybg8b wrote
Great representation, OP! I wish you the best on your journey as I lived it with my wife, and she's 3 years clear.
But FFS, don't forget about BII! Your body will definitely let you know if it sets in, so listen.
slouchingtoepiphany t1_jbytf32 wrote
I'm sorry for what you're going through, but your depiction of your treatment over 3 years is spectacular! Seriously, I work in clinical research and it's very hard to depict multiple lines of therapy over a long period of time. Very nice!
OneLargeMulligatawny t1_jbyy0ty wrote
Fuck cancer, keep fighting!
Ok-Cryptographer8941 t1_jbyyl9z wrote
Really puts things in perspective. That's a lot of time spent at the hospital. I know from personal experience that the hospital sucks. The food sucks. The beds suck. The noise sucks. I'm sorry you had to go through that. It must have been terrifying. But, you're still around and that's what matters. I wish you the best of luck. Kick cancers ass!!
Chickensandcoke t1_jbyy29g wrote
This data is absolutely beautiful. As a son of a two time breast cancer survivor you have my sincere empathy and respect.
PrumSet t1_jbz4lyf wrote
Great data, hope you get better.
IronCavalry t1_jbz7l0e wrote
An an information designer and caregiver, that's awesome. Well done! Good luck in your treatment.
dustingibson t1_jbzkz5k wrote
This is a really well put together chart. Always wonder how hormonal drugs work on cancer.
Wishing you for good health, body and spirit.
Prime_Cat_Memes t1_jbzlaj8 wrote
Not sure I've ever seen data so perfectly aesthetically concise.
t0caa t1_jbzmhs7 wrote
Good luck with your treatment and recovery!
flowerkitten420 t1_jbzo80b wrote
Wow! What a fucking battle! I had no idea. Hope you’re doing well!
thedanyes t1_jbztnzn wrote
Wow. Really brings into perspective all the treatments a cancer patient has to endure. Thanks for sharing.
sassergaf t1_jbztvs9 wrote
Sorry you’re going through this. A friend had triple positive breast cancer about a decade ago and had a similar timeline. Knowing the timeline helped her know what to expect, and when and what was next.
BluebellsMcGee OP t1_jbzwgo4 wrote
I wish my team had presented this to me in advance, or at least something like it. I keep feeling blindsided by the "but wait there's more" aspect of my treatment.
sassergaf t1_jc020ep wrote
I don’t think she got it all in advance either and became exasperated. She began asking questions and taking notes. Then she’d select points in the timeline and focus on them as a goal, like, “in 18 months I’ll be able to go to the pool and swim.” (For a point in time after the reconstructive surgery.) It gave her a sense of when she could return to normal activities, and to plan and look forward to it.
About 18 months later we went to a spa for her birthday and she swam laps for the first time since the diagnosis. It was a wonderful day.
She made it through the hurdles and is doing well. I wish the same for you.
carlitospig t1_jc0449p wrote
We just had a family member pass away from this. I wish you the best of luck and most positive vibes in the universe. You can do it!💓
Ps. It was really smart to make this for family. You should share with your care team too! :)
thescottch t1_jc0dgsv wrote
This is brilliant. Stage 3 rectal cancer survivor here. Would love to pull something together like this for my journey too. If anything to, like you, lay out what a road map could look like in such a clear/concise manner. How does one begin?
BluebellsMcGee OP t1_jc1neb1 wrote
DM me. I have a template I can share, or if you’re not techy I can help you make one.
Shiroi_Kage t1_jc121dq wrote
The only reason I recognize "Lupron" is because of that episode of house where he prescribed it and told the patient that it's like milk. When asked to elaborate, he said "it's creamy."
scout336 t1_jc14ks2 wrote
All the best to you in the weeks, months, and years ahead. All cancers are unique. Mine was for sure and I'm still here 10+ years after my timeline was completed. Run out that timeline! One day you'll have fully finished each of the steps and you'll be free of that timeline. You'll be fully back on your own life timeline. Sending you sister courage & strength until AND after that day.
pukhtoon1234 t1_jc1c8rs wrote
These medications sounds like the names of the chaos gods in warhammer universe
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blueberrybaby00 t1_jc1o0au wrote
Triple positive here too! Luckily found super early. I struggled so much explaining to people why my treatment was so ongoing and aggressive. This explains it really well. You’re not on Tamoxifen? I started it but it absolutely wrecked me. Worse that the chemo, utterly horrendous. So I stopped it. So strange to think that 20-30 years ago, triple positive was almost a death sentence, but now there’s so many treatment options and it tends to respond really well.
BluebellsMcGee OP t1_jc1ppce wrote
I’m not, and I’m not sure why! It could be because my hormone receptors were “just barely positive.” That’s a good question for me to ask my doc!
Future-Travel7708 t1_jc8n3hw wrote
Thank you for sharing this. My sister was diagnosed with 3c —22 years ago. She is still here. Ibrance lasted the longest (4 years ) with no side effects for her. With all the medications today, it is possible to live a long life—it’s a pain to keep going into the oncology office and getting scans for years but the outlook is so much better. 💕
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IdealIdeas t1_jc1brlp wrote
What does being triple positive mean? Did you get tested 3 times before you were finally sure you had cancer?
BluebellsMcGee OP t1_jc1nno9 wrote
Triple-positive breast cancer is a type of breast cancer. It has cancer cells that test positive for the following three features:
(1) estrogen receptors (2) progesterone receptors (3) a larger amount of human epidermal growth factor receptor-2 (HER2) protein
Triple positive breast cancer is very aggressive, but because we know three things helping it to grow, we have more weapons available to prohibit its growth.
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Zeal391 t1_jby1kn0 wrote
I have no idea what I’m looking at with these lines
BluebellsMcGee OP t1_jbyhuw7 wrote
It’s basically a vertical Gannt chart.
Benefit-Former t1_jby2jmd wrote
Yeah, and knowing why there are different colors would be good too.
I'm sorry about your cancer. Still, this is confusing.
Vejibug t1_jbz0t0a wrote
They're labeled on the sides? Look up a gantt chart and turn your head 90 degrees, same concept
EDIT: I'm convinced these people are trolling?! How are you confused, my guy? The lines are duration, there is labels on the side that tell you what each line means, the colors are to seperate the lines.
Benefit-Former t1_jbztq06 wrote
They all say different things, and also, why are there multiple columns with matching colors in them then?
Ralwus t1_jc0ydzn wrote
It's extremely confusing to read.
Ch1Guy t1_jbz9i71 wrote
Your chart is excellent, but I can't help but feel it downplays the horror that is cancer treatments the chemo side effects, neuropathy, surgical drains, residual pain from the radiation, hormonal train wreck..
I hope you have a full recovery... hang in there..
Ralwus t1_jbz66bi wrote
This is extremely confusing to read. It would be much more readable in a horizontal format with the labels within the bars, and without any lines making the viewer hunt from bar to the bar's label. It's also confusing what the columns and colors represent. Lot of problems here.
BluebellsMcGee OP t1_jbzdb6n wrote
I chose to make it vertical because my family and friends will be referencing it on their mobile devices while app-switching to/from other vertically oriented apps.
The colors do not represent anything in particular.
I suspect if you, or someone you love, we’re going through cancer this would be a little easier to comprehend, but I understand that without that life experience and context, it’s difficult to read unfamiliar data in a colorful vertical gannt chart.
Ralwus t1_jbzy9ot wrote
edit: nevermind, sorry you had cancer.
BluebellsMcGee OP t1_jc01bgw wrote
I was not looking for criticism, but I also wasn’t “just wanting upvotes.” I shared it because it has been helpful to my loved ones to see my treatment plan visualized, and it other patients who have seen it have expressed how helpful it was for them when trying to understand which treatments to expect. I hoped that it would be helpful to others by sharing it in a more public space, and based on the comments and DMs I’ve received, others have found it genuinely helpful.
I am baffled that anyone thinks someone going through cancer treatment is IN ANY WAY motivated by fake internet points. I hope you never experience a life threatening illness, but if you do, perhaps you’ll be inspired to use more energy helping fellow humans and less energy scouring Reddit looking for opportunities to make snide comments.
Ralwus t1_jc0z94f wrote
I realize this is personal to you so I won't reply further and have edited my previous post.
But just know that discussion is one of the purposes of this sub. I'm not trying to insult you.
> A place to share and discuss visual representations of data: Graphs, charts, maps, etc.
> Posts should strive to present information as effectively as possible.
> A lack of good design ultimately limits the ability of a visualization to convey information.
> If you have some design experience, please add some constructive criticism, so people know how to improve.
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BluebellsMcGee OP t1_jbz2jl0 wrote
Triple-positive breast cancer is a type of breast cancer. It has cancer cells that test positive for the following three features:
(1) estrogen receptors (2) progesterone receptors (3) a larger amount of human epidermal growth factor receptor-2 (HER2) protein
Triple positive breast cancer is very aggressive, but because we know three things helping it to grow, we have more weapons available to prohibit its growth.
BluebellsMcGee OP t1_jbxcqrw wrote
Made by hand in Canva, in an effort to help my friends and family visualize my overlapping treatments.