I’m probably not unique here in my situation, so I wanted to post and see if anyone had any advice or techniques to deal with people at the moment.
I’ve gone through chemo, finished last week and now have met with my surgeon who is recommending a mastectomy as I wouldn’t have as good an outcome with a lumpectomy.
What I’m struggling to deal with is the way people are responding to me when I tell them that I’ll be having a mastectomy. I’m aware that it’s a bigger surgery and also has more risks/longer recovery period but people are acting like I’ve just told them I’m going to die. The reaction just seems way out of proportion to the news and it’s doing my nut in. They don’t seem to want to believe that I’m not overly attached to keeping my boob. I’ve already kept my diagnosis and treatment quiet from most people because it’s exhausting having to manage their feelings and now this is just making me even more frustrated. Any tips for dealing with people or anyone else going through the same?
I am in a similar situation. I have 4 weeks left of paclitaxel and met my surgeon yesterday who confirmed I would need a mastectomy. I wish I could have a double one but they won’t offer it. My husband does not understand why I would want to be flat, but is also worried about reconstruction.
The very few people around me who know about my BC have reacted strangely too, like it is contagious. Trying to ignore those comments but it is tough.
I am undecided about reconstruction. I have been working full time during chemo, except on chemo days, and I want to get on with my life. My surgeon really insisted on immediate diep flap and is organising an appointment with a plastic surgeon he would do the operation with.
I initially thought I would have my single mastectomy first, then delay reconstruction but not sure what to do. I will post separately to get some advice.
Not sure what to say to you about people’s reactions. It tells a lot about who our real friends are. This journey so far has made me realise what matters most to me, and the fact that I am the one deciding what is best for me. Others won’t live with my body so I really need to ignore unwanted feedback and advice or reactions. I will listen to my gut feelings. It is going to take me a few days or probably a few weeks to make a decision on reconstruction.
I hope others will give more advice. Just wanted to let you know you are not alone.
@kartoffel@marionse25
Hi,
First of all well done in getting thro chemotherapy sessions.
I am sorry you are getting this reaction from people, it’s not helpful or supportive, nor is it about them, which they seem to be forgetting.
I wish people thought about their comments before speaking!
Personally I knew as soon as I was told I had cancer, even before the doctor suggested it, that I wanted a mastectomy with no implant/reconstruction.
It felt that he did try to gently push me to reconstruction/more thinking but I was very clear and confident with him that I didn’t want it and losing my breast was not important to me. He never mentioned it again. Having cancer was devastating, worrying that it may return or end my life early definitely was important to me but losing my breast wasn’t and I’m happy to say that I have never wavered from this, even two years on.
Maybe I have good people round me but no-one questioned my surgery option, or maybe they know that I would have told them to keep their opinions to themselves if they had been vocal
So sorry that I can’t give you tips but just remember you’re the one who is important here and it has to be your decision. Dont feel rushed or pressured-some reconstruction can be done later down the line if you change your thinking later. Ask the surgeon about that.
I found my surgery one of the easiest parts of the process-day surgery, no pain relief needed, washing my hair in shower next day and hanging out washing a few days later… (my surgeon doesn’t use drains and uses spray on protective dressing altho I know not everyone does) so may not be as bad as you may think
I certainly found it better than chemotherapy!
Good luck in making your decisions
Big hugs
X
Thank you for your reply it makes me feel a bit better! I really don’t know what to secide anymore.
I asked my surgeon about a delayed reconstruction and he was quite negative. Saying the outcome won’t be that good and basically insisting on immediate diep.
Did you have a single or a double mastectomy? If single do you mind me asking what your breast size is? I am a 34E so will need a prostesis for balance if I don’t have reconstruction…
40 DD , single right mastectomy, found op went well and had clear margins. But had some node action. Not had reconstruction, living with the single left boob. Currently on holiday in the sun, wearing a bikini and factor 50 !
Dont let the buggers get you down, living my new normal to the full and enjoying life.
Hi,
I am 34DD.
I asked about double mastectomy but wasn’t able to have it at same time. Surgeon said I could go back afterwards but would need it approving and need to see psychologist (really . No psychologist for cancer but psychology assessment if want to be evened up). Anyway by the time I got thro 2 surgeries, 6 chemo, 15 radiotherapy, meds… not sure I want another op.
I tend to go lopsided if I can (really don’t care) and if not put softie (which you’ll be given) into a crop top so I’m even. I have a prosthesis which again you’ll be given but find it heavier. Go for lightweight if you have mastectomy and no recon.
Honestly lopsided is not the biggest thing in my life altho I am 58 and never been big on appearance/make up/getting hair done regularly… I know this decision would be devastating for some women though so important to think how you may feel.
If someone has an issue with my choice, lopsided, flat on one side… I see that as their issue to deal with, not mine. I have enough going on to take on their issues too
It’s just so hard having to make important decisions, that you never dreamed you would have to, fairly quickly, when others keep confusing you and you’re dealing with cancer diagnosis and chemo side effects…get rid of the ‘white noise’ going on such as others opinions, see what can be delayed where appropriate, write things down in terms of priority for you, call the nurses here to chat through your thoughts… and hopefully it will be clearer for you.
X
Gosh! What are people like? People I told (only close family and friends) I was having a mastectomy were very matter of fact. Like me, a means to an end - getting the cancer out of my body and saving my life.
My surgeon asked if I wanted to reconstruction at the same time. I said no. She was actually pleased about that and said that I’d made the right decision due to the fact that my cancer hadn’t been showing properly on mammograms or scans and she didn’t know what they were going to find when they went in.
It never bothered my husband. OMG, sorry to share this but it’s the first time I’ve written about him in the past tense on this forum as he died 8 weeks ago - jeez that hit home.
Anyway, 10 minutes after I’ve stopped crying, 3 years on and I not long been fitted for a new prosthetic which is 100% the same shape and size as my left boob. The BC team apologised that I had to wait 10 days for the appointment when I called to ask if I could have a new one because I’d lost a bit of weight!
My girlfriends only commented on this because I told them and proudly grabbed both boobs by my hands like you do. They were impressed - not that there was anything wrong with the previous one it’s just that the new one is a marginally better shape. They are now a little bit jealous that their boobs are slightly different shapes. For a couple of the bigger girls, it’s obvious if you look!
I swim regularly, sunbathe on holiday etc etc etc and no one would ever know. I don’t wear quite as revealing tops in the sun as I used to but that’s probably a good thing and better for my skin! The only bit of my life that is tiny bit different is stripping off in the changing rooms at the gym. I refuse to use one of the private booths and I’m dextrous with the use of my towel. To be honest that’s not for me, I’m quite happy and proud to stand there in all my one boobed glory. It’s because of the people would probably be offended of they saw, which is the default for anybody not approving of anything these days.
I do look at my belly and think you could be lovely and flat by being used for a reconstruction but I can’t see the point of having yet another scar that would be highly visible a lot of the time compared to other operations I’ve had. My mastectomy scar is virtually invisible which is amazing for me because I tend to have hypertrophic scarring - you ought to see my knee replacement scar!
Try to ignore the negative people. Thread after thread throw up that we learn who our real friends are. Your body, your views, your choice. What you’re deciding to do does not affect anyone else.
Hi @marionse25 go with your gut feeling I had skin sparring implant unfortunately had problems which is rare , I have gone flat on right side have been offered recon
But decided against , might have left made smaller as I am a 38DD , I use a softie and nhs prosthesis which is heavy but good results I also have knitted knockers which are free they do a aqua swim one which is great. To be honest at first found it hard to look at the flat side but now it’s part of me , I do find people that know are drawn to looking at my chest some say you wouldn’t know what ever you decide good luck you will be fine X
Sorry for the late reply, I am still working full.time except chemo days, and decided to do yin yoga last night which was a bit ambitious after my 8th paclitaxel!
Thank you for sharing your experience itvis reassuring. I am gathering info and advice and waiting to meet my possible plastic surgeon. Also waiting for genetic testing to be arranged. It should have been done a while ago due to my family history but better late than not done.
Sorry you had issues with your implant but happy to hear you are doing well.
I am so grateful for your message and everybody’s thoughts on the forum I feel less lonely. Going flat is not an easy decision and anyone not going through what we are going through won’t understand.
Really can’t wait to discuss with my plastic surgeon whatever I decide to do. I have been rushed by my very cold messy oncologist at Royal Marsden throughout my BC journey and just asked to get someone else as I have a long way to go.
Hi @marionse25 thank you for your response , defiantly talk to your plastic surgeon take your time on your decision as I said before just because my implant didn’t work out I was just unfortunate could have further surgery but have come to terms with being flat and past caring what other people think my family have been great and that’s all that matters
Take care keep us posted on how you get on Xx
Really feel for you. I had mastectomy first before chemo and radio. Psychologically that was good for me as i felt that it had all gone, though i had to go through the ‘belt and braces’ of chemo and radio to kill off any traces. The op, like one of the other ladies said, was the easy bit. Done in a day, sore, but soon baked and recovery was pretty quick. My surgeon wouldn’t do a reconstruction as i was nearly 70. I didn’t mind losing a boob either, who needs it? Prothesis is fine. No one can tell. Clothes fit the same, still want to look good, 5 years on all is good, it doesn’t matter. Only thing is, i can’t wear the lovely M&S bras that i used to, never mind.
As to negative reactions, a Samaritan friend said “you will have down days and cry and be depressed”. No i won’t thank you. Or another, 'oh you’ll be fine, my friend was, i know what it’s like". No you dont! Anyway most people were supportive and concerned. Try to let the others go over your head, they don’t know what they’re talking about. Hold on to your good and pusitive thoughts. I wish you all the best.
Hi soos nice to from someone in similar situation , I have found M&S lately have some nice lacy mastectomy/ post op
Bras much more nicer now .
My advice to anyone in this club stay positive your not alone x
Thanks for that charlottebee. Nice to be able to see and try first if they have them in store. I’ve been getting mine from Nicola Jane online. They have an advisor to speak to and are happy to accept returns, i think free of charge.
Positivity is key to getting through. Life hopefully can go on more or less as normal, and we deal with the other bits as best we can.
Sorry about this.
I just didn’t told anyone, and they just saw me straigh flat…but everybody acted like nothing happened. It may seem like such a big deal, but than you will get used to, and other people will get used to it as well.
Now people get heart transplant and other crazy operations…breast is not an organ, it is way easier!
Just remember to do phisical therapy at the right momrnt after the operation, to avoid any adherence, that is the most important thing!
Best wishes!
Hi @soos i used Nicola Jane as well got some lovely swimsuits in the sale as a bit pricey though Asdas range are good as well , @Amel i go flat most days but if go anywhere special I use knitted knockers or nhs prosthesis which is a bit heavy this weather , we all do what suits us loosing our breast has saved cancer from spreading xx
I’m so sorry to hear that you are feeling challenged by people’s opinions about your approach to mastectomy. This is your body and your journey and it can only ever be your personal decision. I knew as soon as I was told I needed a mastectomy that I was content to lose my boob in favour of a better prognosis - and that I didn’t want a reconstruction. I completely understand that not all of us are overly attached to our boobs. I was over 50 at the time and felt happy to ‘decommission’ mine (but I recognise how different it may be for others). I am asymmetrical now and have never regretted my choice for one minute (except tbh would have liked to be completely flat). In terms of dealing with people - no one else is going through your personal journey and no one else has to live with the choices you make - so my main suggestion is to have faith in yourself and what you intuitively want. Those who truly value and care for you will respect and understand your choices. Good luck with it all and sending love x
@marionse25 just adding to replies to your question about cup size/prostheses - I had a single mastectomy 4 years ago and I wish I had realised quicker that I could wear a prosthesis in a standard full-cup bra! No need to stick with the limited mastectomy bra offerings. I am a 32G and was fitted with my prosthesis through a standard consultation at the hospital where I was treated. I personally have been able to even wear underwires over my scar with no discomfort (I did choose very carefully though!). I appreciate this may not be the same for all and I waited until I was fully healed with no tenderness before moving away from mastectomy bras. I hope this helps and good luck with it all x
some say you wouldn’t know 
what ever you decide good luck you will be fine X