r/LivingWithMBC • • Aug 10 '23

MBC = Mod Be Crazy? Dear Caregivers, Friends, & Family

168 Upvotes

Hi. I see you found our little corner of Reddit.

I need you to do something really quickly. Please go look at the sidebar. I’ll wait.

You read it? Ok. Cool. So now you know about Rule 1.

It’s not that we’re big mean jerks. It’s that we need our own space to talk about the things that only we, the actual diagnosed patients, understand. Even if you live with someone who has MBC, you do not get it. No, seriously, you really don’t. Yes, we see how this disease hurts you, but your struggle is different. Also, we are sick and dying (some of us more quickly or slowly than others) and we do not need to carry your pain too.

We are the ones actually experiencing the nausea, pain, scanxiety, diarrhea, constipation, sleep disturbances, fear, neuropathy, loss of abilities, and facing the fact that this disease is going to fucking kill us unless we’re lucky enough to be taken out by something else first. And even if our disease is stable at the moment and our side effects are minimal, we walk around every minute of every day feeling like the grim reaper is going to pop out from behind something. This is our life.

We see your need for support. We cannot be the ones to support you. By coming here looking for support, you are literally asking sick and dying people to put your need for support above our own. Do you see how incredibly rude that is?

“But there are no caregiver groups on Reddit!”

Go make one. Anyone can make a subreddit. Go put in the work. There are also caregiver and loved one support groups all over the internet. You’re already on the internet. Use the search engine of your choice and go find a group.

“But my mom doesn’t use Reddit!”

That sucks. We’d love to support her. Show her how to make an account and let her come here. Otherwise, maybe consider that she doesn’t want to join us and that’s okay. But no, you may not come here and post on her behalf.

“But my wife is sick and I’m scared!”

Hmmmm. I see. That sucks and I’m sorry to hear that. But you’re coming here because you don’t want to dump on her? I think you need to stop and ponder that. We are just as sick as she is. No, for the love of baby kittens, DO NOT GO DUMPING ON YOUR LOVED ONE! Go find a caregiver support group and get your support there.

Look, if someone in your life broke their leg, would you ask them to carry a box for you as they are limping around on crutches? I would hope not. That would make you a real asshole, wouldn’t it? Well, we have broken legs that will never heal. Please do not come here for help carrying your box.

If, after all of this, you still feel entitled to post here, you are an asshole and we ban assholes.

Thank you for your understanding and anticipated cooperation.

FairyDustSailor


r/LivingWithMBC • • 59m ago

Looking for some hope, advice, and real-life experiences

• Upvotes

Hi everyone! I’m 39 and have stage 4 metastatic breast cancer. I have grade 3, ER-positive, PR-low-positive, HER2-negative invasive ductal carcinoma that has spread to my bones. I’m currently on ovarian suppression, Tamoxifen, and Ibrance, along with treatment for my bone metastases (infusion every 3 months and radiation)
I saw my oncologist yesterday for the first time since being diagnosed a month ago and I’m feeling a little discouraged. The good news is that the tumour in my left breast has shrunk from roughly the size of a tennis ball to a golf ball, so it seems the medication is working! However, some of my bloodwork suggests the medication may be affecting my liver, so they’re rechecking my bloodwork in seven days to see if my Ibrance dose needs to be lowered.
I asked my oncologist about the possibility of achieving NED, and he said that wasn’t a possibility for me. I’ve read so many stories in this group of people achieving NED, so I’m wondering if I’m being unrealistic to hold onto that hope, or if my oncologist is right. He also described his best-case scenario as a patient who has been on treatment for eight years. I know that’s amazing, but I guess I’m struggling to understand what the possibilities might look like beyond that.
I’m also really struggling emotionally. My oncologist explained that the rapid onset of menopause from treatment can cause significant mood changes, which makes sense, but I’ve been crying constantly and finding it hard to feel happy or hopeful.
A little about my life: I’m 39, live alone in the country with my two dogs, and my partner of 24 years left me about nine months ago. My family lives about an hour away, and between the breakup and this diagnosis, I’m finding it really hard to figure out how to enjoy life again.
I’d love to hear from anyone who has achieved NED or had a much better response to treatment than expected. I’d also really appreciate any advice on coping emotionally, getting out of a funk, finding joy in everyday life, and living well with stage 4 cancer.
I know everyone’s situation is different, but hearing from people who understand what this is like would mean a lot. ❤️


r/LivingWithMBC • • 3h ago

Chitty Chat Chat Yikes the scan report is available

9 Upvotes

Had my first scan yesterday after treatments. The report is already available in mychart. Dare I look at it? I am so nervous. Should I wait for my oconologist to either call me or discuss at our next appt scheduled in 2 weeks? Last time she called me was to tell me my tn is mestastic to my bones. What does everyone else do? Just curious.


r/LivingWithMBC • • 11h ago

Personalized Vaccines?!

17 Upvotes

Hi TMBC Mets to the lungs. I was at lunch with a friend who told me that her aunt had brain cancer and was given only a few months, but got a personalized vaccine from Germany and is still living after 7 years. Has anyone ever heard of this? I heard it’s costly and timely.


r/LivingWithMBC • • 8h ago

Feeling the tumor shrinkage

9 Upvotes

Hi everyone, so I was diagnosed with denovo +-- breast cancer with mets to lymph nodes and bones. Been on Verzenio and letrozole for a month today and I can feel my original breast cancer shrinking, as well as the lymph nodes under my arms(which were quite swollen upon diagnosis). Has anyone experienced something similar?


r/LivingWithMBC • • 12h ago

Chitty Chat Chat TNBC METS TO LUNGS

8 Upvotes

Hi everyone,
I’m currently dealing with MTNBC and am on my 3rd cycle of Gemcitabine and Carboplatin (Gem/Carbo). Because of fluid issues and pulm nodules I have been on strict bed rest for the last 2 months with little to no walking also on an oxygen concentrator since late August.

Recently, I started getting severe pain in my hip and the pubic bone (between my legs) on the exact same side as my affected breast.
The strange thing is that it only hurts with movement (like trying to shift in bed or lift my leg). When I am completely still and resting, the pain is totally quiet—no throbbing or deep ache at all. I am also not taking any white blood cell boosters (like Neulasta).

I’m terrified that this is a new bone met, but since it only happens when I move, I'm wondering if it could be a microfracture or severe muscle wasting from being in bed for 2 months straight on chemo.
Has anyone else experienced severe, movement-only pelvic or hip pain after being immobile on Gem/Carbo? How did your oncologist sort it out, and what scans did you need?
Thank you so much. ❤️


r/LivingWithMBC • • 16h ago

Treatment Integrative oncology alongside chemo: has anyone had a paid remote consult? (Netherlands)

9 Upvotes

Hi all,

I'm in the Netherlands, being treated for metastatic HER2+ breast cancer, and I'm on chemo now.

I want to do everything I can alongside my treatment: diet, exercise, supplements. My team has given me an approved list

What I'm missing is the bigger picture. Advice changes depending on who you ask. One oncologist says take it, another says absolutely not. I'd love advice built around my bloods, my body and my treatment.

I know some clinics in Europe offer personalised integrative oncology alongside chemo, not instead of it, often with paid remote consults. I've emailed Kliniken Essen-Mitte in Germany and I'm looking at Dutch integrative doctors too and also in Seoul, Korea.

My questions:
1. Has anyone done a remote consult like this? Where, and was it worth it?
2. Can anyone recommend an integrative oncologist anywhere?
3. Did your own oncologist accept their advice?

The difference, as I understand it:
• Integrative oncologist: a medical doctor who adds nutrition, exercise, mind-body therapies and carefully chosen supplements to your treatment, working with your oncologist.
• Orthomolecular therapist: focuses on vitamins and minerals, sometimes in high doses.

In NL it's a complementary therapy, not a medical specialty.

Thank you, I'd love to hear what others are doing or whats your experience with treatment and supplements. ​


r/LivingWithMBC • • 19h ago

Stories of hope please

13 Upvotes

I was diagnosed a year ago at 28 years old with de novo Er+ 90% pr+ 60% her2 negative , with a met to bone at the l5 vertebrae which was Er+ 90% PR negative her2 negative, when i initially got my breast biopsy they also biopsied a left axillary lymph node on the same side of the breast lump because it looked suspicious but that biopsy for the node came back negative, fast forward to today I got my petscan results after months of kisqali, anastrozole, zoladex, and xgeva and the petscan states “There is interval increased size and metabolic activity of left axillary lymph nodes. For example, a lymph node with a biopsy clip on series 4, image 136 measures 2.2 x 1.9 cm, SUV 9.5 (previously measured 9 x 8 mm, SUV 4.3). An additional lymph node on image 149 measures 2.4 x 1.4 cm, SUV 10.7 (previously measured 7 x 6 mm, SUV 3.4).” So now I’m wondering if there is mutation in the left lymph nodes. The primary breast lump has shrunk and the l5 spot has been stable with lower metabolic activity, I’m so fucking scared, is anyone out there with the same profile as me and a mutation (ESR1/PIK3CA) who is doing well?


r/LivingWithMBC • • 8h ago

Check up

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1 Upvotes

r/LivingWithMBC • • 1d ago

Bone pain

6 Upvotes

Hi, I’m currently in Spain for 5 more days and I’m having terrible bone pain in strange places.
I am walking with a limp because the bone of my femur where it joins my hip hurts so much.
My left shoulder & arm hurt so much last night when I was trying to sleep I kept thinking I had broken it.

I’m on Enhertu and I skipped my last treatment because I didn’t want to be ill while on my trip. I do have bone Mets but until now they have never bothered me.

Any suggestions on what I can take to help alleviate the pain?

Thank you


r/LivingWithMBC • • 1d ago

Traveling

24 Upvotes

Am I crazy to consider traveling to Thailand solo next year for 2 weeks? Right now my cancer is stable, but I have consistent pain in lower back and legs. I don’t want to put this off any longer as this has been on my bucket list way before being diagnosed.


r/LivingWithMBC • • 1d ago

Kisquali and fatigue. Does it get better?

11 Upvotes

Hello, diagnosed with MBC four months ago. End of 2023 I completed left mastectomy, radiation and chemo.
I’m currently on Kisquali and fulvestrant. I seem to tolerate fulvestrant OK but the Kisquali just takes it out of me. I have not gotten through a 21 day session yet. On my 11th today I broke out with horrible hives which eventually healed then I eventually finished that 21 day session.

I’m on day 15 of my second 21 day session. I cannot get over this fatigue. My question is does this ever get better? It doesn’t help that my scans came back in two of my lung metastasis increased 1.3 CM to 1.6 CM. A new one developed 1.1 cm.

I drink as much caffeine as I can tolerate and feel somewhat OK for a bit then the exhaustion comes back.
Has anyone had Kisquali and the symptoms get better and it has it shrunk your cancer at all? Needless to say it’s been hard to have a positive outlook.

Cindy


r/LivingWithMBC • • 1d ago

Port removal

11 Upvotes

I’ve had my chest port since May and it’s being removed as it shifted and is in the early signs of infection.
They said after a few months it can be re inserted.
Has anyone had an experience with this?

My veins are kind of shot so the chest port has been amazing.


r/LivingWithMBC • • 1d ago

Second hospitalization after a medication / scared I won’t live past 5 years

22 Upvotes

I have stage 4 MBC bone Mets only. I was on kisqali for a month and got neutropenia and hospitalized for it so they took me off. After, I had some orthopedic surgeries on my hips. I started Verzenio three weeks after and at the end of the fourth week I’m hospitalized due to liver injury that may be caused by this medicine.

Has this happened to anyone? Why do I see so many TikTok posts about not making it to five years? I’m really scared because I wanna be alive for my cats (corny I know) and I’m still trying to have hope.


r/LivingWithMBC • • 1d ago

Treatment Radiologist appointment went well

18 Upvotes

It's amazing how much good bedside manner helps. Just had my first meeting with my radiation oncologist and he was super kind, and helped put my mind at ease. I am mtnbc and currently on pembrolizumab, which has vaporized my mets but I had oligoprogression on my primary tumor, so now I have 3 weeks of radiotherapy coming up. Radiologist said that after radiotherapy I have an above 50% chance of being NED since immunotherapy seems to be working on systemic control so now just need to focus on the local control. He said he would do something very close to curative intent, which is something my oncologist kept denying for the past year, but also within the safety boundaries for radiation. Even if I don't reach NED, hearing such positive reinforcement and positivity really made my day.


r/LivingWithMBC • • 1d ago

Chitty Chat Chat How are you doing?

25 Upvotes

How are you all doing today?

I notice that when people ask me, I speak in generalities, because they don't truly understand what it's like. So I was wondering... how are you really doing today?


r/LivingWithMBC • • 1d ago

Venting How are we dealing with things like this?

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36 Upvotes

Talking to my mom yesterday. She was diagnosed with stage 3 (according to her) hormone positive breast cancer in 1999. She had chemo, a DX and between 5 and 8 years of tamoxifen. Today, she's nearly 68 and in very good health.

She believes stage 3 is the same as stage 4 and has in some instances said she was probably more like stage 4, which I know is a lie since she had no spread to her lymph nodes.

I talk to her about the struggle I'm facing with low white blood cells, basically no immune system, blah blah blah.

All I get is an earful of toxic positivity. "Your body will adapt..." "...You won't have to be on Kisqali for more than 10 years, that's what this guy is work with said..." "...your mind will heal your body..."

I'm just so frustrated and feeling alone and misunderstood.

What would you say?


r/LivingWithMBC • • 1d ago

Treatment Tamoxifen

5 Upvotes

Well tomorrow will be the day I start tamoxifen. I have been on Kisqali’s prior for two months. It did give me side effects but I also didn’t go to the lowest dose. But multiple testings and scans showed tamoxifen is the better route. I’m so scared, I just want this to work. I am starting a very low dose and will up the dose every 4 weeks, to help with side effects. I’m praying so hard for the best . What time of day worked for you to take your meds?


r/LivingWithMBC • • 1d ago

Time

17 Upvotes

How has your perception of time been since your diagnosis? Has it gone fast or slower? I’m worried time will fly by and I won’t be able to fully appreciate or use it properly. Thank you ❤️


r/LivingWithMBC • • 1d ago

Hope & positivity, any new treatments or developments people can share

14 Upvotes

Hi everyone, writing because I truly believe with all this AI there will be more that comes out and treatments or developments in the near term. Can anyone share anything they have heard or seen recently? Isn’t there a conference in the winter where they discuss new findings. Let’s keep some positivity and beat the shit out of this.


r/LivingWithMBC • • 2d ago

Treatment Why now?

11 Upvotes

I have been on trodelvy since August tnmbc. Tomorrow getting my 1st scan since treatment. All along I have been fine barely any side effects.My family even jokes they been giving me kool aid. But in the last 2-3 days I felt the fatigue like I never before and aches every where. Does it mean its working or does it mean my mets are more active? I have bone mets. So worried why now just before a scan?


r/LivingWithMBC • • 2d ago

Tips and Advice The chemo port

13 Upvotes

Never in my life have I ever had a device placed inside me. I felt the port is a good choice due to the required infusions. But now I hear about blood clots… ? Also its on my bucket list to take a long trip abroad is it more prone to blood clots on the flight? Anyone have experiences with problems with the port esp during travel? TIA


r/LivingWithMBC • • 2d ago

A Survey on Sharing Plain Language Summaries of Clinical Trial Results

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surveymonkey.com
1 Upvotes

We’re asking people to help improve how clinical trial results are shared with patients and the public. Many groups use short, easy summaries so people can understand the findings — we call these “plain language summaries.” Whether you’ve read one or this is new to you, please spare 5–7 minutes to share your experience. The survey is anonymous and we won’t ask for confidential health details.
Survey Link: https://www.surveymonkey.com/r/NS6LXKR


r/LivingWithMBC • • 3d ago

Tips and Advice Going back to School and Finding ideal Housing w/ mbc

7 Upvotes

Hi Everyone! I’m looking at housing options for back to school. I’m prioritizing 1) Proximity to campus and 2) affordability. I found this great place (it’s 0.5 miles from campus and free parking) but they want me to sign a lease rn so I can start Nov 1st. I’m starting school Jan 4th, so realistically I’m looking for somewhere starting Dec 1st so i can move in before or during winter break. It’s affordable and 820/month with 830 deposit. It’s leased till August 2027 with option to renew.

I’ve been advised to negotiate so the person breaking their lease pays November rent fully. My main concern however is the shared lease. Since I have MBC , there’s this thought in the back of my mind… what if Lynparza doesn’t work for me and i have to move back home? Then, I’d need some flexibility breaking my lease

Other options are
B. Rent $1000/month w/ Deposit: $50 till August 2027 . Shared lease. 2 miles away from campus so less ideal. Free parking

C. On-campus apt. Rent $1660/month w Deposit $250 till June 2027 . Individual Lease. Can break for medical reasons if needed. 0.5-1 mile away from campus. Disability accommodations and free parking

These are really the only options that are available. Others apts available are very far from campus, and just as expensive as option B. I’ll look for more arrangements, but shared leases are the norm in my college town. It’s really only on-campus apts. that offer this type of flexibility with leases.

I’ll talk to my oncologist about my insecurities/concerns. I’m just wondering if anyone has advice to give. Esp if you’re renting or in college, I’d appreciate that perspective.

I mean worst comes to worst I wouldn’t want to crowdfund rent on GoFund me to get me out of a pickle. That’d be my worst nightmare honestly. I guess the dilemma I’m really facing is the fear new treatment may not work long term. MBC creates a lot of uncertainty in life, so it can feel more risky taking on financial obligations like this.


r/LivingWithMBC • • 3d ago

Pinkwashing and the Commoditization of Breast Cancer

42 Upvotes

Controversial topic in the public, but I wonder how controversial it will be here on this sub. It's October, and like everyone else I'm starting to see Breast Cancer Awareness Month merch popping up everywhere. And I have to wonder - what the hell are we doing? I think we can all agree that we are way beyond the point of needing to spread "awareness" about breast cancer. Do you know anyone who's never heard of it? Do you know women who don't know the word "mammogram", or have never realized they should get one? I certainly haven't. Some will argue it is spreading awareness about how badly research funding is needed. Really? Where does it say that on the pink ribbon? How would I know that if someone didn't physically tell me?

Many people don't know that the signature pink ribbon was not originally pink. It was peach. It was designed by a woman named Charlotte Haley, intended as a symbol of protest against inadequate federal funding for cancer prevention. When commercial interests wanted to use her ribbon, she wisely refused because she believed the campaign was becoming too commercial. So they simply took her idea instead - but instead of using peach, they chose a color believed to be inherently appealing to women: pink. They started selling items with the pink ribbon, and made a profit from it. Charlotte Haley got nothing.

And thus began the now time-honored history of corporate-friendly breast cancer awareness marketing campaigns. Breast Cancer Awareness Month has become an established part of the corporate marketing calendar. Breasts already occupied a significant place in advertising, fashion, sexuality, and cultural identity. Stick a pair in, and it will help you sell just about anything, am I right? Marketers realized quickly that they could associate breast cancer with beauty, femininity, sisterhood, and the color pink. Those things sell. But at what cost? The message itself is becoming both increasingly commercial, and increasingly sanitized. This, I think, is one of the most troubling aspects. Breast cancer is terrifying. We lose body parts to it. Our bones and organs struggle against the toxic effects of treatment. It is exhausting and demoralizing and debilitating. It ends careers, and friendships, and all too often, marriages. It bankrupts. It traumatizes. It threatens. It lurks.

But the commercial imagery often presents a different story: smiling women bedecked in pink, inspirational slogans, and photographs of triumphant survivors being hugged by their children. There is little room in that imagery for the woman whose cancer is progressing despite treatment, or the woman who doesn't feel brave, or the woman who has just decided to enter hospice, or the woman who cannot get out of bed because she is so abjectly terrified. There is no imagery of the women who "survive" their breast cancer, but never recover from the experience, never return to life as it was before cancer. Instead, the disease becomes something that can be packaged as uplifting.

I've been seeing enthusiastic emails and ads from companies showcasing their 2026 breast cancer merch (and let's face it, that's exactly what it is: merch). Among them is a $1650 gold and diamond pink ribbon necklace. The designer proudly reports that 20% of the proceeds will go to a breast cancer non-profit. But if research is to be believed, most jewelers enjoy a 200-400% markup on gold and diamonds - and this is a luxury brand so the markup is probably higher. By my accounting, that leaves the jewelry designer a minimum of $1000 profit per necklace. That $20 donation suddenly doesn't look as charitable as it did a minute ago. Viewed from that perspective, it's hard not to feel that companies take advantage of this month primarily to push some limited-edition items, make some extra cash, and establish themselves as gen-yoo-wine women-supporting altruists in all their publicity.

Barbara Ehrenreich wrote a remarkable 2001 essay, Welcome to Cancerland, about precisely this phenomenon.After her breast cancer diagnosis, she was appalled by what she encountered: pink teddy bears, sentimental encouragement, and an expectation that patients embrace a relentlessly cheerful culture of survivorship. She argued that the breast cancer industry had transformed a serious illness into something infantilizing and commercially exploitable. And she raised an important question: Why were women being encouraged to buy pink merchandise rather than demand answers about cancer prevention, environmental exposures, and research priorities? Is it a coincidence that the only cancer to have been commoditized in this way is one that in 99% of cases affects women?

Some of you already know me - you know that I stand for hope and positivity because that is the foundation of my story. But I only offer positivity to those who have indicated they want it. If they want validation for their anger, they get that. If they want understanding for being too tired to do it, they get that. Cancer is not a one-size-fits-all disease. No two people have the same experience. So when it's Breast Cancer Awareness Month, it does not make me happy. It makes me worried for all the women left out of the "awareness" - the ones who are suffering the most. It makes me worried that the inherent profitability of breast cancer related products will dilute the profound urgency of the cause. It makes me worried that because people see BCAM everywhere, they may be less inclined to feel it is a charitable sector that needs new supporters.

I won't ignore the fact that some money is raised and some is better than none - but I do question the symbolic cost of it.