Support for upcoming mascectomy

[jules_2025]

Hi everyone,

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 “it is just breasts “, “f*** the breast, getting healthy is more important “ 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 don’t 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.

[mssteel]

Hi there

So sorry you and your mum are having a tough time. I imagine it’s pretty heartbreaking to see a loved one going through this.

I’ve had a lumpectomy and not a mastectomy so don’t 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 can’t tell from your post if you’ve directly asked her how she feels about the surgery. Would that be an appropriate approach if you haven’t 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, you’re going to do it to save your life, but no, breasts are not “just breasts” 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 I’ve 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 “yes, you’re right, everything will be just fine!” so that they can be ok. Honestly I’d rather they just said something like, “yep it’s rubbish and I’m sorry that you’re having to go through this”.

I’d just like to add that I think it’s amazing that you’re looking for help on how to support her and wish you both the best getting through this x

[Luskentyre1]

Sorry to hear your mum has joined our club.

Completely understandable that she is worried about a mastectomy & reconstruction. Ive had a single mastectomy with diep flap reconstruction. To he honest, there wasn’t much of a ‘choice’ 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 wasn’t as bad as I’d thought.

It’s hard but maybe get your mum to speak with her bc nurse & ask when she’ll be meeting with the surgeon to discuss next steps. Tell the nurse how she’s feeling & that she needs more information now to prepare.

Wishing her love & luck x

[jules_2025]

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 “I am sure it will be all fine” 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 “solution mode”, 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

[jules_2025]

Thank you so much for your reply. It is great to hear that it can be “better” 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.

Hope you are doing well despite everything. X

[Luskentyre1]

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. She’s lucky to have you to support her x

[mssteel]

Absolutely! There’s already a whole team of people working to fix it. What’s needed is someone to be in it with. That goes for yourself too.

I’m doing really well and that’s mostly down to the support on here. If I didn’t 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

[jules_2025]

Yes the uncertainty and waiting is so horrible.

I am so happy to hear you are through it all and satisfied with the result. Wishing you all the very best.

Thank you for your kind words and support. It means a lot. X

[jules_2025]

Glad to hear you found support in this group with people who understand.

I have to admit I couldn’t 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!

I am so glad places like this community exist.

[mrsjelly]

Hi @jules_2025

Like your Mum I am HER2 positive. Ours is a long treatment path so it might be helpful to read the ‘HER2+ and need some buddies’ 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 ‘it’ 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. They’d served their purpose and were now responsible for threatening my life. I wanted them gone. I’ve 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. She’s 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. It’s 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 it’s a good 10 hours of reading from start to finish. It’s like a story. New characters, lots of humour and much sage advice, wisdom and hope

Best wishes xx

HER2+ and need some buddies

Morning all I have put off joining a breast cancer forum since my DCIS diagnosis on 9th November 2023. I was firmly in denial and quite sure it would just be removed, a quick blast of radiotherapy and on with my 3 jobs. I didn’t even plan to tell my elderly parents and 14 year old son. Fortunately I do have a very supportive husband and best friend who lives close by. I’m 53 years old and still thought I was invincible. I was in surgery on 15th November and got the results on 30th November. Th…

[jules_2025]

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 mum’s right breast as well… I had asked about this before and they said they could have a look but haven’t 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.

Sending you all the very best!! X

[leanne1212]

Thank you all for your open and honest sharing.

It helps me a lot.

My sister will have mastectomy operation with DIEP reconstruction this week Thursday 29/01/2026.

Like you @jules_2025 I am grateful that my sister and I have a very close relationship and she feels she can speak with me about how she is feeling and her fears and thoughts.

How is your Mum doing now?

How are you feeling and coping?

I’ve been managing to be present and calm throughout this period from my sister’s diagnosis and through all the various hospital appointments.

I must admit though I’m feeling quite anxious now about her surgery now that it’s only two days out. and the level of pain she will be in afterwards.

I’ll look after her post discharge as we live together.

It’s good to read from others of their experience post mastectomy and DIEP reconstruction and how they coped and felt. Thank you!

My sister has chosen not to share her diagnosis with many people.

I am already noticing just how unique everyone’s reaction is.

My 86 year old Dad has been amazing.

My 84 year old Mum has been very emotionally needy and isn’t coping very well.

One of my sisters friends is emotionally needy and I can see isn’t going to be a helpful support to my sister so I will manage all communication with the friend and be the gatekeeper so to speak.

I but ind it very odd indeed and sometimes quite intrusive the questions the friends have asked my sister.

I’m seeing a very protective big sister side of me coming out in full force that I didn’t know was inside me before now !

I tea as if I want to protect her from any outside to dos or communications or contact that is intrusive or stressful for her.

Thanks for reading so far if you’re still with me.

Should I start a new message thread on the chats part of this website?

I just want to make sure I have a safe space for me to share what I’m going through and not pop up on other people’s message threads where it’s not helpful or relevant.

Thank you all!

Just point me in the right direction as this is the first time I’ve posted

Xxx

[jules_2025]

@leanne1212 Wow! All that you are doing for your sister!

I think it is wonderful how you are there for her, protecting her and it is amazing you are living with her which is great for the care after the OP.

We cannot control anything with this illness - only how we show up. I think you are doing incredibly well.

But you are also allowed to feel scared and overwhelmed. I most certainly do.

How is you sister feeling about everything? Good luck with the operation in any case!! I am keeping my fingers crossed it all goes well and she will feel as well as possible under these circumstances afterwards.

My mum will only have her OP in June but when I asked they said no heavy lifting or exercise for 6 weeks but she should move around, like walking. A friend of my mum had a mastectomy a few months ago and said it was not as bad as she thought it would be (although I guess that depends on the expectation really).

As of last week - after seeing another doctor - my mum decided she will go for a double mastectomy after all but will have to pay the amputation and reconstruction of the “healthy” breast Unfortunately DIEP is not possible for her as she is too thin. So it will be silicone after all. They will operation in June to take both breasts plus add expanders since my mum will need radiation which is better with the expander. Then she needs another OP later to replace with silicone.

Mum is quite happy and optimistic as she thinks she will feel safer when both breasts are gone. I am a bit anxious about my mums quick decision making and would have preferred to talk the different options through with some more healthcare professionals. But then that is me and I accept whatever mum feels most comfortable with.

I feel for you, dealing with all the different family members and friends - pretty much managing them and their emotions. This is an aspect of this journey I didn’t think would be this exhausting personally. In my case I guess my biggest struggle is the lack of emotion and empathy - especially from my dad and sister.

I think it is disappointing when you have to take on these additional burdens but I am glad to hear your dad is doing so well. Very admirable at that age.

Sending you lots of strength for the coming days and weeks!

PS: I am more than happy for you to use this thread if you feel comfortable with that. Maybe you get more replies in a new thread? Although not sure how replies in existing threads show up for others. Do what feels best for you until a Community Manager tells us otherwise

[Tigress]

Hi @jules_2025 And @leanne1212 the forum is yours so please feel free to either share this thread or start another in the category you feel most appropriate. You’re both doing an excellent job in being a support for your mother and sister respectively and, as an ex-carer for a family member myself, I know how exhausting and emotional it can be at times, so I hope that interaction on the forum will help you feel supported in turn. No doubt your stories will help others down the track so keep recording them. Best wishes to you both.