From bad to worse, but getting better.
I remember writing in these forums when I first had early breast cancer. I’m back! I was diagnosed MBC last year in March. It’s been a crazy roller coaster! My original cancer was triple positive IBC. It came back in my liver only. It was riddled with them and some were huge. And just six weeks after my reconstruction, when I was “putting cancer behind me”. Anyway I had an amazing response to 3 months of THP and a holiday in Greece last year and they vanished. There was an unfortunate incident involving a hot water bottle that gave me third degree burns to my reconstructed breast. I also had to get a seroma drained ten times (it’s still there). In November I had two small tumours come back, progressing after just six weeks on HP. I went to USA and accessed a new treatment called histotripsy that blows up tumours using only sound. We blew them up and they were gone and I moved onto Enhertu. After six months we saw new progression so I went back to USA in June and blew up the biggest two, which had grown so fast (to 3cm from nothing in two months since a clear MRI). I still have a few in there but hopefully less aggressive ones. Now I am facing a situation where I have discovered I was not offered or given the first line treatment after chemotherapy, and now, I am not entitled to ever receive it on the PBS. I am self funding Perjeta for now but hoping my appeals to the PBS people and to others might help in getting it subsidised or under compassionate access. I feel I am being penalised for my oncologists “mistake”. The truth is I think he did it (called my cancer HER2 only and treated it as such to give me the best chance to access T-Dxd early in the piece I have also now been advised to consider Palbociclib based on the Patina results but this is also not on the PBS for my type of cancer. So somehow on top of the 150k I have spent on blowing up tumours I am expected to find another 100k per year for medicine? Or just accept inferior treatments? Life with MBC can be hard. This week I got an MRI that was interpreted as major progression. I cried I ran off to the hospital to fill the palbo prescription then came home and realised the lesions (extremely suspicious for metastatic progression) were actually the three treatment zones I had targeted (phew). So there are only babies that will hopefully now start shrinking from standard of care 15 months late and largely on me. I’m considering going to India for cheap palbo or back to California for more liver bombing. I never knew cancer would turn me into a jetsetter. I am also a mother of two girls 10 and 13. Keen to hang around as long as I can. Well that was a long story! I remember I got some good support here when I was going through it the first time. I’d love to meet others in the same boat in Melbourne.
WHO do I tell?
I was diagnosed with early-stage breast cancer 2 weeks ago and had a lumpectomy with sentinel node biopsy last week. I’m recovering , but figuring out support has been tricky. I’m single, with a small close circle — amazing women who are already doing what they can, but they’re busy and going through a lot themselves. I know I need more help, but the next layer of friends includes people who always overshare others private news. I’m hesitant to open up, even though some of them might be able to support me practically. I also love my privacy, alone time I'm not good at asking for what I want/ need - and so far have managed. So I’m a bit stuck between needing more help and not being sure who I feel safe relying on. Has anyone else struggled with this? How did you decide who to tell or lean on — especially when trust or privacy was a concern? Should I even worry about privacy - would it be so bad if the whole world knew...? I prob feel it might from romantic and future job perspective... Thank you in advance!
Work/grief/sadness
Hi all, apologies if this has already been discussed but I couldn’t find anything elsewhere. I’m 46, had a right mastectomy (Diep flap) and left reduction in early December for stage 2 invasive lobular carcinoma. My recovery went really well, no pain whatsoever. I still have another procedure to alter the flap and then have nipple tattooing but have to wait until later in the year. Started on Tamoxifen in Jan. I went back to work at the start of March and since then have felt the wheels come off a bit. I went back on reduced hours but in a different role to what I usually do (but just as busy!) 3 weeks in I was feeling overwhelmed and crying at the drop of a hat. This role was only to cover someone else and when I asked for more time on reduced hours/duties I was given yet another new role which is totally unfamiliar to me. Consequently I ended up leaving work early this morning as I was in tears. I think because my recovery went so well I hadn’t properly processed everything that had happened before (diagnosis to surgery was pretty quick). And work seems to have triggered a huge reaction that I didn’t expect. It feels like the reality of all this has hit all at once and I’m on a huge emotional rollercoaster. I am seeing a counsellor and she’s been amazing. Plus I’ve started acupuncture. I’m so used to be busy and I used to love it but at the moment, I just don’t have the capacity for it. Has anyone else had a similar experience?
Cording/axillary web syndrome
Hi everyone, it's been a long time since my last post and so much seems to have happened in my life in that time. After having a lumpectomy and axillary lymph node removal on the right side, July 2024, I undertook chemo and radiation. Since then it's been medication treatment with Letrozole (hormone lowering) and Verzenio (cancer blocking). I've undertaken some gym working, focussing on weights to build bone strength but still have residual side effects from all the treatments. I've been to my lymphatic physio yesterday and she informs me that I have axillary web syndrome which is travelling from my affected breast down the fascia of my ribs. Quite painful! And after her massage (sounds nice, but wasn't! 😩) I was wondering how many of you might have had the same? Do you have any tips that could help me please? It's lovely to reconnect again and hope to hear your story. ☺️ JoSome ideas on ‘keeping busy’ - a ‘Coping Calendar’ - during Covid but relates to any time, really!
I found this Calendar a little while ago - and thought it was quite good (even tho it related to Covid Lockdown!) Even if you only do a few of the things on the list …. It may help create new routines and hobbies!! And No - you don’t have to do one each day - just as you feel up to it!! Keeping busy & trying new things really helps to pass the time …. They have a new calendar every month with new suggestions! https://actionforhappiness.org/calendar#download-block-anchor And if helping others …. It’s a real win/win there for both of you ;)
Whats going to happen next
as the heading states what next. I want to be the mum I was before metastatic BC came along tonight I just want to find somewhere to roll up into a ball and cry with the unfairness of it all. If i could Just get life to stand still or at least for once be nice. It seems the whole family is falling apart. 1st daughter is waiting for shoulder reconstruction she has in layman’s terms laxity of the joints already had a knee reconstruction this surgery Dr cant say its going to completely successful 2nd daughter is having major health issues (she has chrons disease, a heart problem plus other complicated health problems all of which are acting up at the same time. She carries a letter for emergency so they don’t have to ask so many questions My Only Son is now on short list for surgery for a shoulder that’s hanging on by a thread of just 1 tendon. ( came off his bike). His wife got admitted to hospital yesterday with several Kidney stones that are not going to pass so she’s in there waiting for a stent then follow up surgery to have them blasted. I’m back on my palbociclib and trying to adjust to the side effects again after such a long break. To top it off I have a new lump on a different rib which wasn’t painful before but now is hot to touch and radiating pain around it. Oncologist had a feel and immediately wrote up a referral for a bone scan asap and I am still trying to recover from the GB surgery Its a bit of where do I go, how do I spread myself around to them all, I want to divide myself into pieces so I can help them all. then my body reminds me I’m not 100% fit either.
Immune system lowered
Hi Everyone, My oncologist transferred me to Aromasin mid April. I had been on Tamoxifin then Letrozole (which did not agree with me at all) previously. Since changing to Aromasin my immune system seems to be very low. In the last 4 weeks I have had a chest infection, a cold, laryngitis and finally tested positive for Covid last Sunday. I'm normally very healthy and maybe catch a small sniffle once a year. Has anyone else found themselves in the same situation and how have you dealt with it? I'm not dealing with it very well. I only need to look at someone and I seem to get sick. Thanks x
New diagnosis metastatic breast cancer
Hi, I'm all very new to this being diagnosed only 7 wks ago with stage 4 metastatic breast cancer (triple positive) which has spread to my bones. I am 51 with 2 children. I had only had my first mammogram 18 mths previous which was clear. I felt unwell at work & went to hospital and they found it looking for something else. It has been such an overwhelming process. My family & friends have been amazing but am feeling so very alone.
Radiation tips?
Hi, I have no idea how to negotiate this platform so forgive me if this turns up in the wrong place… I’ve lobular invasive -had lumpectomy & 10 lymph nodes removed. Hellish pain with seromas after the latest op.. anyways .. radiotherapy starting next week for 3 weeks.. any tips, things to be aware of?? It’s been such a rollercoaster I think I’m still processing ..
