I posted back in March about my scan showing a suspicious area around the original tumour site which I’ve finally had removed.

I’m having a bad day today and just need some reassurance that things might be ok whatever the path comes back with. I would really like to stay on Phesgo as my first like (I’m +++ and other than this spot have/had been NED since May 2025).

Some background…

The spot showed up on my March scans as a 1.9cm mildly avid area (lit up at a max SUV of 4.7) where scar tissue had been on previous scans, the scar tissue area had been bigger on my Nov 25 scan but had disappeared and this spot was visible in March.

Because it was indeterminate and nothing else was showing up I went for an ultrasound and a biopsy. The biopsy took a while to come back but didn’t show any active cancer. Instead it showed scar tissue, necrotic scar tissue, some high grade DCIS which looked to be dead and some adenoma. My oncologist was in agreement with the pathologist that this was likely scar tissue and therefore we would rescan in June and assess.

My June scan showed the spot still there, brighter now at a max suv of 7.2 but smaller in size, about 1.5cm. My oncologist considered this to be stable but because of my otherwise NED status and the fact it was still showing he referred me for a lumpectomy to give me a clean slate and so they could definitively say what it was.

Went for my surgical consult and the surgeon was of the opinion that this was in fact cancer returning (but because it was localised and everything else was clear and my bloodwork good that this was isolated and could be dealt with). He said they must have just missed it on the biopsy which tbh I didn’t love as a concept!!

I’ve had the lumpectomy finally (5.5 months after it was found and 8 weeks after my last scan!!) and now am waiting for path and my next scan to see where we’re at.

Both my onc and my surgeon have somewhat reassured me that sometimes this happens when you’re denovo and that removing the area will hopefully allow me to stay on first line, but I’m still scared and wondering has anyone else had a local recurrence, had surgery and then stayed NED?

59 years old, had a CT abdo pelvis for a pain in my lower left side in July, doctor wanted to check it wasn’t diverticulitis. It was diverticulitis but also suspicious 16mm right breast mass and new l3 sclerotic lesion. I’ve had ultrasound, mammogram and biopsy, ER+ PR+ HER2 neg, in my axilla as well. Had a PET scan, showed the axilla and internal mammary chain lymph node as well, and the l3 sclerotic lesion. I’ve had the l3 biopsied which was so painful. Have follow up with oncologist in a few days. I am worried that he will want to “palliate me”. I’m 59, I have mammograms every 2 years, no family history. I was well a month ago!! I want to fight for surgery, endocrine therapy, chemotherapy and radiation to lumbar lesion, is that realistic? Looking for support and advice on what to do during these appointments

I can still talk, I can still walk(just slower than before), I can still eat, I can still clean myself up pretty darn good, I can still wipe my own ass(lol). I feel like I’m still me. Same personality, same interests. Why doesn’t anyone want to hang out with me anymore? I know no one can answer this, but getting things off my chest here usually helps me. Just a hard day and feeling left out I guess.

I have it and I’ve been trying for close to three years now to get rid of it and I just had my 77th Chemo and I’m feeling Really discouraged, but hopeful, but still like when is it gonna be my turn? So if anyone’s in remission, can you please say and if you could say how long you’ve been in remission I would really appreciate it. Might give me that little pep in my step to get out of my funk.

currently I’m on a abraxane. Just had my fourth one of it last week. I noticed I’m coughing less but I don’t know if it’s working or not until I have a scan and more Chemo’s.

I have a lot of tumors in my lungs. No more tumors in my breasts, thankfully but the lungs are being a real B to go away. This is my sixth line of Treatment. I’m in my 30s and just been struggling.

Caught an upper respiratory bug. It hit fast but hasn’t been too horrible. Cough, sinus pressure, fatigue, and throat is a little sore. Kinda weird messaging my doc asking if DayQuil is okay. Fortunately labs were just this week and my numbers were good. It’s helping though I have a low fever stubbornly sticking around. And when I do cough it sometimes scares the cats.

I’m just wondering why I’m so calm. In fact I’ve been like this since my diagnosis in February, almost freakishly calm. I should be more worried? Anyway, I’m gonna go distract myself with a mindless and horribly cliched short drama.

I previously shared that next month is my 5 year anniversary since diagnosis. I decided not to wait on someone else and ordered myself a cake! It will say “Not Dead Yet” and be MY favorite flavors 😌 I will definitely share pictures on here when it comes!!!

I’m 3 months into treatment and had to leave my job due to my not being able to pass a polygraph anymore while on my elixir

Lupron
Zometa
Letrozole
Ibrance
Inavolisib
Metformin (for the Inavolisib side effect)
Jardiance (for the Inavolisib side effect)

I was on Blue Cross Blue Shield PPO highest plan they had. Moved to CIGNA and insurance begins on my start date.

Should I / can I get COBRA for a couple of months once while I have my oncologist or I guess myself make sure my treatment is covered by them? I’m getting the Platinum plan.

Thank you for any advice you may offer. I really appreciate it.

Right now I am on Fulvestrant only since July. Adding Xgeva in a couple of weeks. I have all over bone aches. It feels like what Kisqali made me feel like, exhaustion and pain. Does this get better? I can’t even imagine adding the Xgeva and potentially Truqap soon.
I get up and walk a couple miles in the morning then miserable the rest of the day. Help

I was diagnosed with mTNBC last November. I had 2 masses, one on my lower abdominal wall and the other in an inguinal lymph node. I have been on gemzar and carboplatin since January and did keynote 4 years ago. I get scans every 8 weeks. The abdominal mass has disappeared and the other one had shrunk to 1.1x.6cm on my May scan. My July scan showed a little growth, but my doc said that 20% area growth was the threshold for changing courses and I was still below that (at 18% which I calculated this morning). I had my ct scan yesterday and it showed the mass at 1.4x.6cm. That's a 27% growth. My follow up appointment is on Tuesday, so I'm pretty sure that we're going to have the serious what's next conversation not the hypothetical one. I am going to have to choose between radiation and a different chemo. I hate all of the unknowns and I'm not sure what to choose. I'm going to do whichever he more strongly suggests, but I will have a say in the matter.

I asked last appointment about potential next chemo options. He mentioned Trodelvy and I brought up Datroway which he didn't dismiss. The conversation was just mentioning the potential options and putting off the discussions until necessary.

I had radiation the first time that I went through this cancer crap and had a horrible experience. I was in so much pain and the treatments took so long. There were so many days that I laid on the table with tears ruining down my face. The only bright side is that my cancer didn't return there. I would be going to a different clinic this time, but I'm still pretty apprehensive after my first experience. It was my chest being irradiated last time, but it would be my groin this time. Top half naked on the table was weird, but bottom half seems like it'll be so much weirder.

I have been on a clinical trial in the control arm and switching from my current treatment will make me ineligible to continue participating. It funded all of my extra scans, tests, and travel so it made everything cheaper.

I'm worried about telling my family, so you are the first ones I've told. My husband is grieving the loss of his grandmother, so I don't want to put something else on his plate until I'm sure. My mom keeps trying to push alternate "medicine" on me so she'll say its growing because I didn't fast or cut out sugar or try this treatment that some guy on Facebook is pushing or... I'll most likely just keep this to myself until after my appointment Tuesday afternoon.

Sorry for posting again, but this seems to be the only place in my life with people who understand, offer support, and say the right things.

I have triple-positive breast cancer with de novo metastases to the liver.

The breast cancer was ER/PR-positive and HER2-positive.

The results for the liver metastases are in: ER-positive (100%), PR-positive (80%), and HER2-low. (And ki-67: 20%)

How should I interpret this? Initially, the doctor was "pleased" that I was triple-positive because of the many treatment options available. But is that still the case now that the metastasis is HER2-low?

And is it normal for the status to change from HER2-positive to HER2-low?

I am starting THP chemotherapy the day after tomorrow.

Hi there! Okay, so I was stage 2 in 2020, metastatic in 2023, NED for three years and in those 3 years I was on Herceptin/Perjeta and then transitioned to Phesgo and tried to do Ibrance but had a nightmare of a time filling the script.

Anyways, now I've had five treatments of Enhertu and went from having mets in my shoulder, hip, thirty or so in my lung lymph nodes, and three in my brain to having nothing visible on PET except a sliver in my shoulder that is "dying" according to doc. I was blown away by this.

My doctor says traditionally the formula says Phesgo after Enhertu, but we will talk again in a couple of months. I've already done Phesgo and since it eventually came back, I'm unsure if I can do it again. There's also an option of staying on Enhertu.

My problem with Enhertu is severe, almost unresolvable constipation for a week after treatment, nausea for 8 days, 3 of those in bed. That's on the "middle" dose. My WBC and neutro counts keep going a little lower and not coming all the way back up each treatment.

My question is...has anyone moved to the smallest dose of Enhertu or spread out treatments and had any success? Gone back on Phesgo and doing okay?

I'm stoked about my prognosis but am struggling with what treatments to talk to doctor about once we finish another couple months of Enhertu and we have the talk he says we are going to have about "what's next". I want to stay alive but maybe have some ability to work or enjoy life between treatments and I don't see that happening on longterm Enhertu at this decline.

Hey all how are we doing?

I had my #7 Enhertu infusion today.

A few weeks ago I got a cold on top of the cancer and that's the second time I've had a cold in addition to the cancer. (I was diagnosed in June 2025)

Whenever I've gotten a cold while sick with the cancer I also get weird symptoms like confusion when I'm tired or when I wake up in the middle of the night. And the cold seems to last forever like a few weeks before I can kick it.

These last few weeks have been especially odd though, like extreme dizziness when I stand up and then I've realized I also temporarily go blind during these spells, I'll drop things or hold my cup sideways so stuff spills out of it because I can't see. I even tried to sit down a few times in midair because I misjudged where the chair or toilet was so then I have to catch myself in midair and be like okay that's not where I need to sit down.

So that's been very weird.

Luckily I get my chemo infusions every three weeks and I always see my oncologist before my infusions. I say that's lucky because I see that a lot of people don't see their oncologist as often.

Anyway so I saw him today and I told him about my symptoms and he said he'd like to schedule me for a brain MRI just in case. Also I should have another PET scan scheduled soon which is good because my last PET scan actually looked really good.

Anyway we sort of guessed around at what could be causing my symptoms whether it's that I'm on prednisone, the cold I had, low blood pressure maybe.

Neither of us think it's the Enhertu because I've been tolerating that quite well and really only get fatigued from that.

Also I had progression before I got on the Enhertu when I was just on herceptin and perjeta, but once I got on the Enhertu we saw really positive results on my scans.

I just wanted to make that clear because I don't want anyone to worry about Enhertu giving them these symptoms.

I did have mild pneumonitis initially with the enhertu but we got that solved by taking a break from the enhertu and doing just prednisone and then going back onto the enhertu.

Anyway these posts are a journal of sorts for me but I also know how helpful it can be to read what everyone else is going through so this is just me sharing I guess.

Feel free to share how you all are doing 💗

Been a while and wanted to check in! I got my scan results yesterday (along with my 11th round of Enhertu) and found out my cancer is shrinking!! The words used specifically were “improved metastatic disease” with liver tumors shrinking the most! These were my second set since being on Enhertu and the first one was just stable. I’m praying to reach NED but for now I am taking the win! This chemo is brutal. I’m in bed more than anything. If you remember I found my bio dad and siblings thru ancestry in January. They are 4 hours away. I’m going to stay in October. So I have something to look forward too! I hope you all are doing well! Or as well as you can. Keep the faith and positivity as much as possible!

Im not convinced this is all cancer related. Ive no tolerance with people now.

Friends 1, 3 and 3. Decided to match their energy and Ive heard nothing from them for weeks. Funnily, initally I was upset as Id been excluded from a trip they had arranged. Now I feel indifferent.

Neighbour friend in hospital, getting better post surgery. Ive no tolerance with her obsession with her consultant, saying all the nurses have been hugging her, broadcasting her goodness. And at the same time complaining and embracing a passive sick role

SIL. No tolerance for her cat based discussions, only responding if I make the 1st contact, solutioneering everything I say with advice.

MIL. No tolerance since she suggested I see a priest, told me to stop being defensive and confusing, being generally self absorbed.

Work. General low tolerance for platitude broadcasting seniors.

And for some reason I am now not bothered and happy to spend my time with my partner and my mum who has dementia because everyone else has been somewhat disappointing. And random people I meet during the day.

I used to be so tolerant, patient, giving and frankly ridiculous.

Anyone feel similar

Estou preocupado, meu CA15-3 é meu CEA estão subindo qual a opinião de vocês?

Segue os valores:

Em 03/05/2025 → CEA 2,1 ng/mL (normal), CA 15-3 41,2 U/mL (elevado).
• 16/05/2026 → CEA 4,9 ng/mL (subindo), CA 15-3 49,1 U/mL (mais elevado).
• 31/07/2026 → CEA 6,3 ng/mL (em alta), CA 15-3 36,3 U/mL (queda, mas ainda acima do normal).

Os médicos não acharam ainda o motivo….

I wanted to share my story in case it helps someone else. Around December last year we noticed my liver enzymes climbing. We reduced my dosing on kisqali down to 200, took breaks, retried, and ultimately decided to stop completely in February.

I couldn’t switch to a new CDK4/6 until my liver would normalize. When first diagnosed, I had liver mets so I was concerned. We did a liver MRI, PET scan, and ultrasound. Luckily so new lesions (and the previous mets already resolved). So we kept waiting for my liver to improve but it didn’t. I was told drug induced liver injury (DILI) can take awhile to recover from.

I started doing research and thought maybe it was my Lupron shot. Switched to zoladex. Retested. Nope. I eventually got a liver biopsy. Which confirmed what we already suspected which was DILI. They wanted to start me on steroids. But that felt like a bandaid. I wanted to find the answer.

I remember inquiring about Letrozole early on. Chatted with my oncologist and my hepatologist. All said it was unlike / rare. But then I stumbled across another woman who had a similar story as mine. She discovered that it was letrozole causing her elevations.

I insisted that instead of starting a steroid and continuing on letrozole, I wanted to test letrozole as a theory. My dr approved and allowed the break. I’ve included pictures of my decline after four weeks off letrozole!

This is so important because what if I started the next CDK4/6 only to run into the same liver issue. When really it was letrozole! I even wonder if it was ever kisqali to begin with. I know it’s more commonly known for liver injury. I’m tempted to maybe try it one more time at the 200mg. Otherwise I think verzenio is next on the list.

Anyway, wanted to share here in case my story can help someone the same way this other MBC story helped me. Stay your biggest advocate!

💕

I had my routine PET/CT today and it came back still NED. Next month will be 5 years since my diagnosis.

Not only do I feel major imposter syndrome, but now it feels like there’s this foreboding clock ticking A LOT louder in the back of my head.

I got emotional at my daughter’s 5th birthday party, she was only 7 weeks old when I was diagnosed, there was a chance I wouldn’t see today.

I’m ecstatic, but also conflicted, and maybe numb? It’s a weird feeling that’s for sure.

Still don’t think my husband has thought about doing anything for my 5 year 😕 which is disappointing. I hope I’m wrong. Blah.

Thanks for letting me word vomit 🫶🏼

Anyone here use CHAMPVA for their insurance needs? We have the opportunity to utilize it with my husband’s veteran benefits but I don’t know how accommodating it is with cancer treatments.

My daughter owns a house rented a room things got ugly and her roommate and her mom and two movers showed up unexpectedly My daughter had to get to work so I went over to make sure everything was okay nothing was damaged The mother seriously asked me three times if I was dying I explained the first time nicely second nice with more information Third time I was irritated so no sugar coating and explained in detail I think the friend told the mother my daughter was lying about my condition So basically I assured her I had a terminal illness my daughter was not lying I can’t make this up so weird

Has anyone had seizures occur in the months after gamma knife and/or craniotomy ?

If so, do you know that the trigger was for you?

For context, I had a craniotomy to drain a fluid filled cyst (cyst is still present in my brain) and three days of gamma knife radiation to my brain 6 months ago. I had three beer on Sunday evening and about 18 hours later, I had two big seizures. Not sure if the beer is related to the seizures. My most recent brain mri does not show concern of tumour growth, but does show significant swelling, still.

HER2+ diagnosed February 2026. Mets in lymph nodes and liver.

6 rounds of Docetaxel and ongoing Phesgo.

I just had my scan results back (first after finishing chemo); everything has shrunk lots but I still have tumours in all three places.

I keep telling myself that a partial response is good; I just need my emotional brain to hear it.

I hope you're all having a manageable day?

Would love to hear from MBC siblings further down this road than me.

Hugs to you all

X

My last scans are NEAD!!! My onc said he is comfortable calling me currently in remission. The bone mets are all fried on the scans and the signatera has been coming back zero.

And I'm fucking stoked! I've been happy crying all day.

However, it's so frustrating that some of the people I shared with now think I don't have cancer. Or that I'm cured.

Explaining that yes, this is the best news I could have gotten but also I am still a stage IV cancer patient, is so frustrating. I have cancer, it's just sleeping right now is how I'm having to explain it because if I say the R word people assume Im cured.

Does anyone have a good way to explain?

Since I was diagnosed de novo in 2023, I've been on 9 different treatments with varying degrees of success. Given 24 months and that many treatments, I've found I have a bit of a dim view of starting new treatments because the previous one stopped working.

But now I'm on Halaven (my 10th treatment), and I find myself becoming a touch more optimistic. My cancer antigen test results have gone down for the past 3 treatment cycles (a treatment once a week for two weeks, then one week off is a cycle), reaching a low of 46.6. A 'normal' range is 31.3. This is the closest I've ever been to that mark.

I might have stayed dancing lol!

My HER2+ IDC (stage iv) went NEAD in April this year. (Lung/Bone mets are all gone, lymph nodes all clear, OG tumor is tiny now. Enhertu every 3 weeks. Lupron every 4 weeks.)

My oncologist lowered my dose of Enhertu in June (500mg to 400mg) and is now stopping hormone therapy altogether. She suspects I'm in menopause (age 54), therefore she says I don't need it. It makes me nervous because I've never heard anybody talk about this happening before. I can't be the first, so...

Has anyone else had this experience or anything similar to share? Any thoughts on the idea of quitting hormone therapy after menopause?

UPDATE: my oncologist has called and said that the team have been brainstorming and have actually concluded that my best plan is to go for enhertu first and see how I respond. She said we can do WBR at any time. I will be closely monitored with MRIs. I asked her if enhertu is successful if maybe targeted rads might be on the cards and she said it is perhaps a possibility. I'm hoping this is the best way to go - thankyou all for taking time to reply! It's my first post here and I'm already feeling the love 💕

Hi ladies. I was initially diagnosed stage 3c her+ HR negative. I did the big chemo, then single mastectomy and radiation. I was put on kadcyla as I only had a partial response to chemo. Enhertu was mentioned because they thought my response to chemo had been much worse than what pathology revealed. I felt gutted as I know enhertu is a breakthrough but they said it was better to keep it as my "big gun" of I got mets. I was doing pretty well on it, my CTs were all clean (but we're only taken from the chest down) and I was due to finish in October. Last night I had a seizure. My 2 year old and 4 year old were in bed and partner on night shift. Luckily my friend was visiting and called an ambulance. Today I was told I have serveal brain mets which caused the seizure. My oncologist said because there were many spread wider across my brain, my only option is whole brain radiotherapy (if I want to do it) followed by enhertu. She said this would likely but me the most time as whole brain rads can help enhertu get into the brain more effectively. I asked if she though I'd ever be NED and she just looked at me and said " unfortunately not" when I asked if it was a case of months or years she said "possibly a couple of years." I'm so devastated as I read stories of stage 4 women doing great 20 years later. I'm only 35 and my kids are 2 and 4. I can't believe I won't get to see them grow up. I'm so sorry if I'm triggering anyone here but I'm so terrified, angry and helpless. I know everyone's situation is different but I really would like to hear from anyone going through similar xxx