Hello everyone,
Has anybody been advised to have a mastectomy but refused any immediate reconstruction?
I have been advised to have a mastectomy in just a couple of weeks it was out of the blue as I was expecting a lumpectomy it was a shock!
I had been referred to another hospital to discuss reconstruction such as DIEP etc however they have refused reconstruction.
This was communicated through my breast nurse and the reasons are vague which I need to clarify.Capacity and time frames were mentioned.
I was wondering about anyone else’s experience if you would care to share.
Any advice or thoughts welcome Xx
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Hallo,
I was also expecting a lumpectomy, but as DCIS and LCIS were found before surgery as well as the invasive cancer, it turned into a mastectomy and lymph node removal - 1 of the 12 removed was cancerous. Yes, it’s a shock when things change, but is it to give us the best possible outcome.
I think reconstruction options can depend on how the mastectomy goes, and what they find whilst operating. I was originally told that I could have an expander implant or a permanent silicone implant at the same time as the mastectomy, but that it would depend on how the mastectomy actually went as to which one they would do. As it turned out, they gave me an expander implant which I have now had for just over a year. I am due to meet up with the surgical team within the next few weeks and will then discuss replacing the expander implant with either a permanent silicone one or having a DIEP, but neither could be performed until at least one year after radiotherapy to give them the best chance of being successful.
I would need to go on the waiting list for either as rightly, they prioritise the operations which remove the cancer to the reconstructive surgeries, and I think this can be a year or more.
I hope this might provide a bit of clarity for you.
Hang on in there xx
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Hi Fran,
Thanks for sharing your experience.
Yes it is interesting to hear maybe my treatment may follow the same course as I am also probably having radiotherapy afterwards too though I have to confirm this.
Was the implant and DIEP advised after radiotherapy was completed?
I have noticed that some women on the forums had the DIEP procedure before the Radiotherapy so did not know if this was a hard and fast rule.
Yes things can change quickly on this journey and it can be a huge shock. I am where you were a year ago and I also need lymph node clearance.
It has given me some clarity and I wish you the best in your upcoming appointment in a few weeks.
Do you know which one you are favouring out of the DIEP or implants?
Best wishes Xx
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Hello
It is a shock when your treatment and surgery change. I had a lumpectomy, but unfortunately there was no clear margins so then had to have a mastectomy, but because they knew I was going to be having radiotherapy they wouldn’t do immediate reconstruction as the radiotherapy can effect the reconstruction.
I would advise you to call your breast care nurse and ask why they are not recommending reconstruction, there are usually very good reasons for it, and if you are needing radiotherapy after surgery then I think it’s pretty standard to delay the reconstruction so it minimises the effects on the reconstruction.
I hope you get the answers that you need. Best wishes Alison xx
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Hello Alison,
Thanks for reaching out.
Sorry you had to have a lumpectomy that then progressed to a mastectomy.It is scary and unsettling when things change suddenly.
It was the breast surgeon that asked if I wanted reconstruction and referred me to another hospital as they didn’t do it at my current one which is causing confusion as the radiotherapy is planned after.
I think it was time restraints and capacity reasons the breast nurse said as to why I was refused but I will clarify.
It is reassuring to know that it is pretty standard to delay reconstruction until after chemotherapy so thanks for letting me know and telling me about your experience.
Best wishes,
Chakakaan Xx
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Very normal if radiotherapy is needed as it often ruins the reconstruction and is better to wait.
I’m in the same boat and while a mastectomy is jarring, so is half a boob missing and a nipple gone so I just like that I had massive margins around the cancer! I’ve seen enough on here have 3 ops when having a lumpectomy because they hadn’t got it all. Nightmare!
I’ll be having a DIEP later once I finish radio and have my strength back. Chemo has been very hard and I’ve just finished and will have radio in 6 weeks and then recover from that.
There have been massive upsides to mourning the boob and keeping my eye on the prize of being cancer free. I won’t lie, it’s not easy but I would have hated the nippleless boob I would have woken up with too. This way, the new boob will be a rebuilding and a positive, rather than an imposter that I never wanted.
It all comes down to the individual and how they can twist it in their head?
Good luck with everything!!! Xxx
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Hi Chakakhan,
I had a mastectomy sept 2022 and was advised against immediate reconstruction. This was partly because the wait for surgery would have been longer, but also because my treatment plan included radiotherapy after chemo.
Since my chemo and radiotherapy i have been on the targetted drug abemaciclib. This lowers my immune system and i would have to stop the treatment for a few weeks to have surgery.
My oncologist has been supportive and said if i want to pause the treatment in order to have (diep) reconstruction sooner then i can
I have decided to give myself the best chance with the abemaciclib by not missing any weeks, and have been booked in for a diep a month after i finish that drug.
I was advised that implants werent a good option for me due to the treatments ive had, and im happy with the plan although i will have had a delay of nearly 3 years.
Just letting you know of my experience, as the length of the delay has been as a result of advice around my cancer treatment and about the type of operation which is likely to give the best results for me given the extent of my treatment.
With all good wishes to you, NorthernJay xx
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Hello swk1981,
Yes we are in the same boat so great to chat with you.
I’m new to the forum so I did not know that many have multiple lumpectomies to get clear margins how distressing that must be!
I was thinking it was one less extensive operation that I was being denied of for a mastectomy.
You have given me a different perspective on things and thinking of the prize as being cancer free and the rebuilding of a new boob as a positive one has really helped a lot.
Sorry you found chemo tough but hoping you start to feel better soon,I also found it hard but getting stronger each day.
Good luck with your DIEP and radiotherapy and wishing you a speedy recovery.
Thank you!
Best wishes Xx
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Hello NorthernJay,
Thank you for sharing your experience.
It really helps to know that your surgery was advised against due to time constraints and radiotherapy which is sounding similar to me.
Perhaps there is a method in this madness!
I am also planned for targeted therapy after surgery and radiotherapy for Hert2+ but forgotten which one was mentioned so that is a consideration if it does lower your immune system like your treatment.
It is great you have a supportive oncologist that is giving you options but I think you have made the right decision for you.
I’m also glad you are happy with your plan that will likely give you the best operative results despite the delays.
It sounds like it has been a long road and I wish you all the best for your diep operation and the rest of your treatment.
Best wishes ChakaKhan Xx
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i had immediate diep reconstruction as I got breast cancer again in the left breast and you can only have radiotherapy once. My first diagnosis was in 2003 and my next in 2022 so my skin had a long time to recover but there was less of it as the segmental mastectomy I had the first time pulled my breast over towards my armpit and i had a semi circular scar around the breast on the armpit side where the cancer and lymph nodes were cut out (I have extra nodes in my breast, a rather rare thing).
the diep reconstruction took 8 - 9 hours - first a cancer surgeon removed the rest of my breast tissue as far as my collarbone and as deep as my ribs. Then I had a bit of my lower abdominal skin, blood vessels, and fat moved up to bridge the gap and make a fake breast. The blood vessels from my abdomen were reconnected to blood vessels in my chest area.
When I woke up immediately after surgery I was strangely elated and very jokey. As I was trolleyed off I was pretending to be a London bus and saying there was room for one more on top. It was grim during the night as the6 had to wake me every hour to see if the flap was still alive and then I felt sick. i was in intensive care so they quickly brought a sick bag with a twist top that sealed it in and got rid of the smell. All that was 2 years ago 8 9 2022, the day the old Queen died. Long live King Charles and long live my reconstruction. Cheers Seagulls
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Hi
I am 6 weeks post mastectomy and chose not to have reconstructive surgery - the tummy tuck was tempting but I didn’t want to have to spend too long in hospital or recovering.
I honestly thought I’d have a moment looking at my flat side that I’d be upset at the loss of my boob, but actually I’m absolutely fine with it (my nerves were eased by many of the amazing people in this forum). The worst thing for me was that I hadn’t quite realised how much of my slightly large tummy my boob obscured so it was a shock to look down and see it in all its glory 
.
Good luck with everything x
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