My mum was diagnosed in September 2025 with quite aggressive Her2 positive tumors. She is getting chemo first, then mascectomy for sure due to the locations of the tumors, followed by radiation.
She is now half way through chemo and while that is great I can tell that the mascectomy is now way more on her mind and starting to worry her a lot. We are currently exploring the different types of reconstruction options and I hope an appointment we have later in January will give us some clarity.
Regardless she is struggling with losing the breast and knowing the body she knows and loves will be gone. Lots of people say things like āit is just breasts ā, āf*** the breast, getting healthy is more important ā and of course that makes sense from a medical and life perspective. It is not a question not to do it. But I can totally understand that this is super hard to lose part of your body. Whilst I am grateful we have this time to think about options because of the chemo time, it also gives you more time to stress I guess.
Wonder if others have gone through similar feelings. Sometimes I donāt know quite what to say to support her because I am just so sad for her going through this and the whole thing just sucks.
So sorry you and your mum are having a tough time. I imagine itās pretty heartbreaking to see a loved one going through this.
Iāve had a lumpectomy and not a mastectomy so donāt have an first hand experience on how that would feel, although the idea of it absolutely terrifies me and it was one of my first and biggest fears when I was diagnosed, but in terms of offering support, I canāt tell from your post if youāve directly asked her how she feels about the surgery. Would that be an appropriate approach if you havenāt already?
I think the comments you describe from others make sense to them from a practical point of view as you say and, of course, youāre going to do it to save your life, but no, breasts are not ājust breastsā are they? Especially not to the owner of said breasts! And although often well meaning, these types of comments unfortunately can end up coming across as largely dismissive.
I know that whenever Iāve tried to talk about the emotional side with family, they often try to make it better by arguing against my negative feelings and putting a positive spin on it, which makes me feel like I have to agree with a big smile, that āyes, youāre right, everything will be just fine!ā so that they can be ok. Honestly Iād rather they just said something like, āyep itās rubbish and Iām sorry that youāre having to go through thisā.
Iād just like to add that I think itās amazing that youāre looking for help on how to support her and wish you both the best getting through this x
Completely understandable that she is worried about a mastectomy & reconstruction. Ive had a single mastectomy with diep flap reconstruction. To he honest, there wasnāt much of a āchoiceā in reconstruction. The surgeon will recommend what is best for your mum given her body shape etc.
I was terrified of my op but with a lot of support I got through it & it honestly wasnāt as bad as Iād thought.
Itās hard but maybe get your mum to speak with her bc nurse & ask when sheāll be meeting with the surgeon to discuss next steps. Tell the nurse how sheās feeling & that she needs more information now to prepare.
Thank you so much for your kind words. Luckily my mum and I are very close and she is quite open about her feelings.
Oh this āI am sure it will be all fineā can be so annoying, depending on the frame of mind at the moment. Now that you say it, you are right, people probably want to jump into some kind of āsolution modeā, and in such situations it is better to acknowledge how shit the situation is and sit with those feelings together.
I hope you are doing as well as possible under the circumstances. X
Thank you so much for your reply. It is great to hear that it can be ābetterā than feared.
Are you happy with the result after diep flap?
Mum has now decided to make an appointment with the oncopsychologist which they offer in the hospital. I hope this person can support with her professional experience.
We have an appointment with a surgeon on the 20th as well, which will be another big step.
I am 1.5 years post op & although it took a bit of getting used to, I am happy with how I look.
So glad your mum is making an appointment. Hopefully it will set her mind at ease. The toughest part of the journey for me was the not knowing. Once I knew what was happening I did feel more confident & was able to deal with things a bit more easily.
Wishing your mum luck for the next part of her journey. Sheās lucky to have you to support her x
Absolutely! Thereās already a whole team of people working to fix it. Whatās needed is someone to be in it with. That goes for yourself too.
Iām doing really well and thatās mostly down to the support on here. If I didnāt have access to connection with others who understand how I feel first hand, I think I would feel very alone to be honest. Thank you so much for your well wishes x
Glad to hear you found support in this group with people who understand.
I have to admit I couldnāt really grasp the feelings and change of life before this experience with my mum and even know I am probably not even scratching the surface.
Respect to all of you brave people fighting this battle!
Like your Mum I am HER2 positive. Ours is a long treatment path so it might be helpful to read the āHER2+ and need some buddiesā thread. It has been a lifeline to me. Very reassuring to read that those before me had got through their treatment and that life continues. We emerge altered in many ways and grateful that herceptin (trastuzumab) has changed the trajectory of our BC.
I had IDC and DCIS in my left breast. Initially was told I would have breast conserving surgery but was sent away with info about mastectomy. The next appt was with the surgeon. They informed me that owing to the distance between the two affected areas, I would need a mastectomy. Having done some reading this was my preferred option. Whilst I was told the risk of recurrence was the same whether I had a mastectomy or lumpectomy, my logic told me that the less breast tissue I had the less places it had to sneak back. Was also informed it was triple positive and as such I would need chemo and targeted therapy, timing of which was dependent on the results of an MRI scan. This revealed āitā was more widespread and scattered throughout the breast, so like your Mum I had chemo etc first. Unfortunately but rather fortuitously, the scan also showed a few areas of concern in my right breast which were then biopsied. 50 days after my initial diagnosis, I was informed I had two areas of DCIS in the right one. I was very thankful for that MRI and the decision to send me to another hospital for MRI guided biopsies, else I may have found myself with IDC in 3-5 years which could have required chemo and surgery again.My head and gut reaction to this news was to have a double mastectomy.
When I was informed that I had breast cancer I realised that at the moment I had no emotional attachment to my breasts. Theyād served their purpose and were now responsible for threatening my life. I wanted them gone. Iāve not been someone who had them out on show. They were small until my mid forties when they seem to finally grow from a B to a DD by the time I reached 55. I recall being told by the surgeon I had large breasts with not too much droop. Made my husband and I laugh in the way home. I had been told by the Radiology Consultant that I had dense breast tissue which made them firmer. Interestingly after the first round of chemo they were both much softer. Much to my husbands horror I did purchase a plaster of Paris casting kit. My daughter kindly offered to do it for me. My breast plate is currently in my plotting shed. Needs a tidy up then I plan to paint them and mount them on the wall!
I had the option of double mastectomy and going flat; having a left mastectomy with immediate reconstruction with an implant and breast conserving surgery with an uplift on the right; a double mastectomy with reconstruction with implants or autologous reconstruction (DIEP). After chemo I remained resolute that I wanted the double mastectomy so opted for implants. I woke up from surgery elated that the diseased breasts were gone and whilst the replacements are perkier than the originals, they look good. With my clothes on I look no different.
Early on I was pragmatic about my lot. I accepted that the route to recovery was to let them go and it was the price to pay to live a longer life.
A couple of people have clumsily said to me about getting free ones on the NHS and have called them my new tits or titties - loathe those words. It is as if they forgot that I had to consent to have my breasts effectively amputated. To me the implants are simply replacements. They are largely numb so no sensation from my armpit, in my nipples and across to an inch from my cleavage.
Personally the hardest part of the treatment was the chemo. Surgery and the recovery was a breeze in comparison. The numbness was a bonus as I had little pain post op!
I had a pathological complete response - the chemo had dissolved the cancer in both breasts. No trace of it and none found in my sentinel nodes. This meant I did not need radiotherapy or further chemo.
Your Mum is still right in the thick of it. Her feelings about losing her breast are entirely normal and to be expected. Sheās fortunate to have you reaching out on the forum to get some insight about our thoughts and decision process. Hopefully it will help you to make sense of it for yourself as a bystander. Itās a really hard place to be - my lovely Dad had three different cancers and I was his advocate and supporter throughout.
Here is the link for the HER2 thread. An amazing bunch of women. Reckon itās a good 10 hours of reading from start to finish. Itās like a story. New characters, lots of humour and much sage advice, wisdom and hope
First of all thank you so much for sharing your journey so open and generously.
It sounds like an incredibly intense time and I am glad they found out of the other breast too! Makes me want to chase the clinic again to check mumās right breast as wellā¦ I had asked about this before and they said they could have a look but havenāt actually done it yet. Unfortunately I am not there for every appointment because my mum actually lives in Germany and is treated there, whilst I live here.
It is great you were able to have this attitude towards the operation and think it is so cool you did the breast plates.
Thank you also for sharing the thread. I will definitely have a look. Soaking up knowledge is one of the things I have found helpful personally.