I’m trying to find anyone with the same diagnosis as me as I am going slightly mad with the rollercoaster!!
Timeline:
Dec 2023 - Diagnosed at 50 with Left breast cancer- 2 tumours ( 1 x IDC and 1 x DCIS)
Jan 2024 - Left WLE and SNB - grade 3 IDC and DCIS, HER2 negative, 0 lymph nodes but Oncotype was 47 ( very high risk of recurrence)
April 2024 - Started chemotherapy (EC x 4 and Paclitaxel x 4)
Sept 2024 - Radiotherapy x 5 days
Jan 2025 - first Zoledronic acid infusion
Jan 2025 - started Letrozole
May 2025 - diagnosed secondary breast cancer metastasis in my Brain
June 2025 - had brain surgery to remove 95% of tumour due to its location
July 2025 - brain tumour histopathology is now HER2 positive!
July 2025 - Sterotactic Radiosurgery next week x 3 to zap the remaining brain tumour
Yesterday - Oncologist has given me a poor prognosis and wants me to start more chemo Docetaxel x 6 plus PHESGO to try and prevent more mets coming up for as long as they can
Is there anyone that’s gone through/ going through this ?? I just don’t know what to do for the best anymore. I’ve done everything to stop it coming back but it hasn’t worked! I was just getting my life back on track and recovering and now feel I have no hope
Thanks
I’m sorry I’ve not had a similar experience, but just wanted to say you’re in my thoughts. Sending you a virtual hug and as much positive vibes as possible. xxxxx
Dear Cazmuz
I’m so sorry you’re having such a horrible time. You absolutely must not blame yourself. I hate this modern view that we can “fight” cancer, which implies that if we do all the right things then we can beat it. Very sadly, for many ladies it’s not true. If you are doing everything your team advises then there’s nothing more you can do.
Breast cancer is a very variable disease. Most ladies are much luckier than you (if you can be “lucky” and have breast cancer) and so that makes it all the more difficult to understand why your cancer is so much harder to treat. But it is not your job to treat it. Your oncology team is doing their best and all you can do is follow their advice, which is what you are doing.
As for me, I am a bit luckier than you but much less lucky than many others. But we are all in it together.
Sending you a very big heartfelt hug and lots of love.
Please keep us informed of your decisions and progress. This is a horrible disease and we all live with fear in the back of our minds. Only you can decide on the treatment plan and we are here to support you every step of the way.
I understand your delimma-doing well, healing, and then to discover a recurrence. That happened to me as well! Just as I was beginning to feel better and less fatigued ( lobular in right breast, neoadjuvant chemo, mastectomy, radiation, estrogen blockers), my newly discovered axillary nodes are cancer. Even my oncologist was sure it was just a reaction from my recent fat grafting/ reconstruction surgery. My work up is just starting. Waiting is slow torture. I send you prayers, light, and strength to make the right decisions for you.
Hello, I attend a lot of groups and retreats and I know a lady who was where you were at 5 years ago and has only been stable so it is definitely possible. The exact words from her WhatsApp are: “It went to my brain in Feb 2018 Had whole brain radiotherapy too. I’ve been stable since going on Cape, Tucatinib and Herceptin in Feb 2021. it keeps working xx” I’m not sure that you have been on those drugs?
My onc said the time on my drug would be 2 years so far I’ve had 5 years. They just don’t know how you’ll react so I don’t find what he said to you all that helpful. Have you seen the possible treatment lines here? Treatment Lines - METUPUK
Mastectomy and axillary lymph node dissection 09/07/2022
Radiotherapy 15 sessions
Mastectomy 2 03/12/2019
Tamoxifen 2 attempts (approx. year total)
Zolodex x2 months
Mar 2024 - Secondary breast cancer spread to brain, bones of skull and liver. Treated with 6 x docetaxel & Phesgo (trastuzamab and pertuzamab single injection) indefinitely to control disease.
Sept 2025 - Disease progression in brain appears during / soon after chemo ended.
Dec 2024 - Phesgo still controlling extra-cranial disease but further progression in brain.
Jan 2025 - Stereotactic / targeted radiotherapy not appropriate. Resisted whole brain radiotherapy and had regional 30 x 10 fractions brain radiotherapy in the affected (posterior fossa) region only.
Apr 2025 - Still on Phesgo and latest brain MRI shows brain mets are smaller following radiotherapy but still present. Still having the nausea and vomiting etc. symptoms but they appear to be stable so far.
Aug 2025 - Aug MRI scan shows growth on one area of my brain Mets. MDT advised surgery is best treatment to remove this area, booked in Oct 2025.
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Let me know if you’re still on the forum, it would be great to hear from you and how you’re doing.
Hi
Yes I’m still here just had to come off the forums for a while as it was getting me down.
Yes we do have a similar diagnosis.
I’m just about to have cycle 4 tomorrow of Docetaxel & PHESGO it’s been quite tough coping with the side effects for about a week or so after each cycle but then I start to feel better and am able to do more and have started working from home a bit too and even getting out and about on the bus a couple of times, as DVLA revoked my driving licence because of the brain tumour but I really hope if I stay met and seizure free for a year then I might be able to get my driving licence back!
Just had good results too of my first lot of 3 month check scans and there are currently no other new mets anywhere thank god and the bit of brain tumour that had to be left after the Craniotomy due to it being in my motor cortex and the SRS treatment I had has made it appear smaller on MRI head scan so at least it’s not growing !
Be kind to yourself after your brain surgery but also positive about getting yourself better and getting your mobility back to as good as you can get it. Time will heal. It’s 4 months since my surgery and I am walking again without any mobility aids now and only left with a slight tremor in my left hand so I’m amazed how well my body has healed and very grateful to still be here fighting this awful disease and prognosis.
Hi, it’s really good to hear you’re doing so well.
We’ve got some of the same treatments but the opposite way around. Docetaxel and Phesgo kicked my ass and I wasn’t able to do much of anything. I suffered a lot with side effects, particularly with swelling and awful back pain, so walking became really difficult for me. Don’t worry if you also experience back pain, it disappears after you finish Docetaxel. If you’re managing to work during this treatment you’re doing really, really well!
It’s taken an age but I’m back to my normal size and I’m walking fine again, although I still need a stick when I’m out and about as my balance is affected. Hopefully surgery will help since the tumours are in my cerebellum. Did you suffer much nausea after radiotherapy and / or surgery?
I can definitely sympathise with you losing your driving licence, I had to surrender mine and it was a really tough blow. I’m a very independent person and I really miss that freedom.
Thanks for your advice about surgery, I agree positivity and making the best of this awful situation and your mobility is the best way to go. I’m having surgery on Halloween - I’ve been aware of this passenger in my head for 18 months or so, and I’m feeling pretty good about getting rid of it.
So glad your mid-chemo scans were positive and you sound like you’ve coped really well after surgery, that’s reassuring to hear. Here’s hoping you’re through the worst of it
I coped quite well actually after surgery, no nausea but obvs couldn’t walk and very unbalanced. Apart from the seizure I had in recovery on the ward as the HCA tried to move me too soon so my advice is do not let them get you out of bed to go to toilet or comode just use a bed pan for at least 24 hours or you could risk having a seizure like I did then that stays on your record especially when dvla are considering your reapplication for your licence!! I have to take high dose anti seizure meds daily too for a year because of that!
I coped with SRS quite well too, no nausea only hot flushes and hair loss around the area after two weeks which was quite significant but it did start to grow back before I started chemo again and it all fell out again!
Yes I feel my side effects are getting worse after each cycle now I guess due to accumulation of dose but the steroids I take for the three days each cycle just make me swell up and hot flush anyway. Since May I’ve put on 6 kilos in weight which I hate but hoping that after chemo I can start to lose it again and I’m already doing some walking on my treadmill and light weights on my good days.
Can I ask if you applied for PIP at all? Macmillan said I could get it so I’ve applied every little helps I suppose.
Sending you positive vibes for your surgery and please message me when you’re well enough to let me know how you’re getting on.
Thanks for the positive vibes, it’s reassuring to hear your recovery went well too. I’ll definitely take it easy after surgery as you suggest. Let’s hope I don’t have any seizures!
Hope you continue to do well on chemo, I’ll be in touch again after surgery.
I haven’t applied for any benefits yet, although the people at our local Maggie’s suggested it early on. Something i need to look into. Was it easy to apply?
I survived my craniotomy and I’ve been home from hospital for a bit now. I managed to avoid seizures so far thankfully, I’ve spent a lot of time throwing up and struggling to keep anything down though!
I’m queasy, very tired and not that interested in food. Sleeping is a bit of an issue as the wound is at the back of my head and slightly to the right. Whenever I try to get up and mobile I throw up again. I’m on all the anti-sickness meds, I was on them before I had surgery, so I’m hoping it will improve with time.
Walking feels loose and a wobbly but I’m trying to adapt, managing with a stick so far.
Are you finishing chemo soon, fingers crossed you’re doing OK
Hi
I’m so pleased to hear the craniotomy went well. I have thought about you and wondered how you were doing .
I’m sorry to hear about the sickness hopefully that will ease with time and recovery.
Did the surgeons get all the tumours out? Will you have to have SRS?
I’m ok thanks been really suffering with the side effects of chemo but feel better this week just in time for chemo again friday
!
2 more cycles to go am getting bloods done today
Look after yourself, rest up and speak soon xxx
Thank you for starting this thread. I’ve just been reading up. I too have secondary breast cancer now in the brain after thinking I was a super responder .
I’ve had the large lump removed from back of brain and today is day 2 of stereotactic to treat other/smaller tumours . The Marsden say I’ll also need radiotherapy on the area I had my large tumour removed from then back on chemo Docytaxil & Phesgo . Did you have radiotherapy to the removed tumour site . How long a gap between removal & radiotherapy.
I hope you are continuing to adapt which seems to be the main thing at the moment.
Hi there , I’m just wondering how you are doing almost a year on ?
After my craniotomy, stereotactic radiation and chemo I’m now just on 3 weekly Phesgo injections and 3monthly scans. I’ve been going to Tai Chi classes run by my local MacMillan group and I’m back doing yoga. I’m feeling incredibly lucky that I also haven’t had any seizures (touching wood a I say this) I’m not as yet back on Anastrozole and I haven’t been given any zelondronic acid which were both stopped when I got my brain tumour diagnosed. It would be lovely to hear from anyone else with metastatic breast cancer xx
Sorry I haven’t been on this forum for a while as I’ve not had a good time this year.
I’m so pleased to hear that you are getting on well that’s all any of us could wish for and keep going
In November 25 I started having seizures and ended up in A &E, CT and MRI head scans showed my brain tumour had grown again and more swelling causing the seizures so the DOCETAXEL AND PHESGO were not working
I was put on high dose DEXAMETHASONE to try and reduce the swelling and after consultation at Kings was only given one option to try craniotomy again but would be more dangerous this time and could leave me semi paralysed or do nothing and I would be dead within 6 months.
So I opted for the craniotomy again knowing the risks and had that in Feb 26 and woke up after surgery unable to move left foot and leg and severe weakness in left arm
Had to stay in kings for a month in rehab then was transferred to a local neuro rehab hospital until May 26
Been very tough adapting to being disabled and having daily carers at home and also adaptations done at home
In the meantime my brain tumour started growing back again so surgery wasn’t actually successful
Have now been given a prognosis of less than 12 months to live and surgery not an option anymore
But I’m on ENHERTU chemo regimen now to try and slow down progression of brain tumour and last MRI head scans showed 3 weeks ago showed brain tumour has stopped growing for now and swelling gone down so it just be working and actually I feel stronger physically and with daily physio and sheer bloody determination I’m able to hobble around using a quad stick and have a permanent foot support in my trainer to lift my left foot slightly which has enabled me to have some quality of life
I’ve just bought a small electric scooter which I can use to go out around where I live and even just started working from home a couple of days a week whilst I’m well enough to do so
Got a few side effects from the chemo and general fatigue but just trying to live what life I have left the best I can
