I am struggling with my decision on what kind of reconstructive surgery to proceed with, and when to do it. I have not been assigned an oncologist since my diagnosis 5 weeks ago and have been told I won’t have one until after my surgery which is in another 5 weeks.
What I know is that my tumor when diagnosed was invasive, but only 1cm. My cancer is triple positive, and I am BRC1 positive. I have not had a lymph biopsy. This will be done during surgery.
I met with a breast surgeon 3 weeks ago, and met with a plastic surgeon last week and will meet with him again on Monday. My preference is to have both surgeries at once (bilateral mastectomy and reconstruction), and I feel like I am under pressure to make a final decision by then as to what kind of reconstructive surgery I will go with.
I am completely overwhelmed with this decision and I have a couple of questions. I would prefer to have the reconstruction done all at once, but I am concerned that potential post surgery treatment could affect the reconstruction, especially radiation treatment with implants. Since I have not been assigned an oncologist, I don’t know what the likelihood of treatment is and what that would entail. While the tumor is small, it has been 5 weeks since the last ultrasound, and another 5 weeks to surgery…how much more could it have grown or spread by then? I don’t know what to do!
Although not triple negative, I was diagnosed with bilateral cancers and needed double mastectomy.
I was insistent I wanted immediate reconstruction, however that would have delayed my surgery by at least another nine weeks, so I opted for a delayed reconstruction (I didn’t need chemo and am taking letrozole for 10 years).
Post surgery, I actually discovered I really liked being flat and didn’t want any more surgery. The delay actually meant I didn’t feel rushed to make a decision and end up with a reconstruction I didn’t know that I didn’t really want.
Everyone is different, but I think if you feel rushed, there’s always the option to slow it down and see how you feel post surgery, particularly if more treatment is needed.
I had a bilateral mastectomy 7 weeks ago.
My surgeon advised against reconstruction at the same time as I need radiotherapy and he says the radiotherapy can affect the reconstruction. Even if he had said it were ok I would have refused as I wouldn’t have wanted to deal with another wound to look after on my tummy at the same time as recovery from the mastectomy. Also I have bad lungs so didn’t want to be under anaesthetic any longer than necessary.
I have decided to stay flat as I love my new chest with its 2 smile scars. I have healed really well and the scars are really neat. Most of the time I wear flat sports bras or camisoles but occasionally wear a bra with prosthetics if my clothes are shaped for a bustline.
I think it’s a very personal decision and everyone is different but I would say that I don’t feel less feminine by staying flat at all.
Don’t let your surgeon push you into anything you aren’t sure about. Ask if you stay flat after the mastectomy but have a reconstruction later if you want to.
Wishing you all the best xx
P.s. another question you might want to ask is if there will be any difference in wait time for the radiotherapy depending on whether you have immediate reconstruction or not. I don’t know if the healing time between a flat mastectomy procedure and a reconstruction mastectomy procedure is very different. It’s worth asking.
@lynnc123 @jayesse
Thank you both for sharing your experience and for your supportive answers.
As you both know this is such a difficult decision.
I think my next conversation with the surgeon will be about a delayed reconstruction.
Wishing you both all the best on your journeys.
Sorry to throw another possibility into your undoubtedly crazy choices right now. But there is also the option of a tissue expander implant. I had this reconstruction done at the same time as my mastectomy. The implant is gradually inflated with saline over the course of a few months after the mastectomy.
Then if I had needed radiotherapy the inflation could have been delayed, and it would have been less likely to damage the implant. Luckily I didn’t need radiotherapy, but the implant meant the enough skin was stretched over the implant to create a small breast.
I eventually had the implant removed and replaced 6 months later with a silicone implant, for aesthetic reasons to then be able to match my other side.
The plastic surgeon said this left him more favourable options for the 2nd reconstruction, than had I just had a straight mastectomy.
However full disclosure the Becker implant was an incredibly painful recovery process, as sat behind the pectorial muscle, the expanding process was quite uncomfortable, and it looked pretty awful ! So there’s no easy option , but might be worth asking if that’s something suitable for you.
Wishing you all the best with your decisions, and your upcoming treatment. Xx
Thank you @caron
I have read about this, but didn’t really understand how it works. Another option to add to my list of questions for my surgeon.
Thank you! 
Hello, I felt the same pressure as you before my single mastectomy. It’s a very long story but I ended up choosing to go flat in the knowledge that I could have reconstruction if I couldn’t live with it. Having done so I am firmly of the opinion that only delayed reconstruction should be offered, because at the time we have to make the decision we are unlikely to be in the right frame of mind and because you can’t know what being flat is like until you’ve tried it.
I acknowledge that age is a factor and everyone is different but I cannot emphasise enough how glad I am that I resisted the unfathomable NHS push towards reconstruction.
This is an important choice and I’m sorry to hear that you haven’t received much support. Perhaps worth contacting the nurses on this forum to walk through all the options? You should also have received the contact details of your surgeon’s nurse once you have been diagnosed. I had multiple consultations (including a second opinion) and it helped me a lot. I did however have the luxury of time, as I had 6 months of chemo before surgery. Also, if you are in London, it is worth checking the resources of the charity Future Dreams. I attended their in person surgery workshop (it’s free) and had 3 h to discuss all my questions with nurses and someone who had a surgery due to BC in the past.
I guess it remains unclear whether you need radiotherapy or not up until your lymph nodes have been removed and biopsied. Don’t worry about the spread between now and the time of your surgery (it doesn’t happen that fast), it’s just no one knows it up until the tests have been done. Some implants can’t be used for radiotherapy and it is an important consideration. If you use expanders (eg to mitigate the risk of radiotherapy harming your implants) there is a new thing called Flora expanders. I had them and they are much easier to deal with compared to previous models, the inflation is not painful at all.
A DIEP is another option which may work for you. I had a CT scan to see whether my blood supply is good enough for a successful DIEP and it’s something that the surgeon would need to refer you to.
Going flat is of course another option if you are comfortable with it.
Discussing your options and understanding what it important for you personally is incredibly helpful, hopefully you’ll be able to find support and let me know if you have any questions, I’ll try to help!
I SO empathise with your response. I think it is dreadful that women have to make this decision at such a critical time but I suppose it is all about time and cost to the NHS. I had surgery during lockdown when the prevailing mantra was ‘you’re very lucky to get anything,’ so reconstruction wasn’t being offered to anyone, even private patients. I had to push to get any surgery so reconstruction just disappeared off the agenda. I am not sorry about this (other than the callous attitude which was off the scale) because you hear of so many people who end up having to have the reconstruction unpicked because they need further treatment. Plus it is a greatly extended operation and if you are unlucky enough to then need chemo and/or radiotherapy, you will have a hell of a lot to contend with. I have stayed flat with a good personally constructed prothesis and I am happy with that decision but for some, breasts are very important to their femininity. My advice would be wait and then have it done further down the line if that is your choice.
Sorry to hear youre having to make thus decision so quickly.
I had single mastectomy & diep reconstruction straight away. I then had 3 weeks of radiotherapy which dis shrink my reconstruction a bit but itnhad bren made bigger in the first place to account for this.
Questions i would ask:
Is implant reconstruction the only option & why.
How much radiotherapy is planned for you?
If you decide to delay reconstruction, what is the waiting list time for reconstruction? This may sway your decision.
Good luck
@tinatin @Luskentyre1 @teddy271
Thank you all for sharing your experiences and for your suggestions and feedback.
I am in Canada and so I guess our system works a bit differently here.
I have decided to will have the double mastectomy and then wait and do the reconstruction later. I won’t know if I will need radiotherapy or chemo until after the surgery when they have tested my lymph nodes, and so this will keep my options open. My only hope is that I won’t have to wait forever for reconstruction. I will find out tomorrow.
You are all champions for having gone through all this. I am so overwhelmed and still can’t believe this is real!
Much love 
This bit (the unknown) is always the hardest. Omce youve seen your surgeon & have a plan in place then have a plan in place with the oncologist youll feel so much more in control.
Youve got this x
Good decision. Gives you loads of options. Hope it all goes well.
I can’t see how immediate reconstruction saves the NHS money. I am pretty sure that, if they only offered delayed reconstruction, most people would not come back for it because they’d realise the benefits of being flat. Also the cost of the actual reconstruction, all the follow ups and, as you say, ‘unpicking’, must be significant. I wrote to NICE asking them to look into the push towards reconstruction but they ignored me, I think. I heard that ‘Flat Friends’ campaign against it but I guess they are also ignored. I do wonder if there is an ulterior motive for the NHS.