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Limited options for surgery, please help.

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Member

Re: Limited options for surgery, please help.

Hi LunaMuna,

I had a similar experience to you. I was diagnosed with a large area of DCIS with a 4-5cm invasive tumour last May. I had chemo which completely resolved the invasive tumour, but due to the large area of DCIS, mastectomy was the only option. I don't know if your area of DCIS is large, but they told me that after they had removed all the DCIS ( which chemo doesn't affect) there would not be enough of the breast left, so mastectomy was the only option. It was scheduled for ten days after they told me. 

I was really upset. I did lots of research, and I rang up before the operation and saw a different surgeon. I said I couldn't cope with waking up after the operation with no breast. I pleaded with them to have an implant ( I had been told that there is a Braxon implant that is when it is in a kind of sling so the radiotherapy is less likely to affect it). The surgeon said she was really unhappy to provide this as she had had to remove implants in the past due to hardening due to radiotherapy. In the end I agreed to a mastectomy with delayed reconstruction ( hopefully at the end of this year- I finished radiotherapy in early January). I don't know yet what I can have, as I am quite petite and they said they don't know where they would take skin from!

But, although I was very traumatised at the thought of the operation, and it took a few days after it to come to terms with it, the ladies on this forum supported me and I got through it. I have now been given the most amazing silicone prosthesis, with a removable nipple, and it really looks fabulous. No-one would ever know. I thought I would have to wear loose fitting clothes, but I can actually wear anything I want. I have also got some ' knitted knockers' They are a charity who will provide you with a soft knitted prosthesis for the six weeks post surgery , and also an aqua knocker for swimming. Totally free of charge! I have been swimming a few times with no problems.

Best wishes to you. I hope you get some answers soon.

Jane xx

Member

Re: Limited options for surgery, please help.

Hi Lunamuna, not sure I can help but here goes with my experience. I was diagnosed October and had my right side mastectomy on 7 December, my surgeon was fabulous and right from my initial diagnosis her view was I must have an immediate reconstruction. I had invasive lobular cancer, invasive tubular cancer and dcis so, being multi focal, mastectomy was the only way to go. Fortunately it had not spread to my lymph nodes so, although I had the sentinel node removed I did not need radiotherapy or chemotherapy.

I was 40E at the time of diagnosis and decided to have my reconstruction with implant only. The largest implant they could source was 660cl which has left me with a good C cup so there is quite a difference between my two boobs. The shape is fabulous and I love how it feels ( it’s really perky too). I’ve now got to have my good side reduced and lifted to match. 

I’m over the moon with what she has done for me, when I touch it, to be honest it feels no different to the real one although I obviously only feel sensation in the skin. 

Currently I’ve put weight on, thanks to Letrozole, so I’ve gone up to a 44E and have to wear a balance prosthetic to even up my shape. The prosthetic is really uncomfortable as it cups my new breast and the weight of it drags the new boob down. Ordinarily my surgeon would want me to have my reduction now but I’ve asked her to hold off so I can try to loose some weight before it’s done. They removed 1.3kg of tissue in my mastectomy so I’m hoping by loosing weight I can naturally reduce it before the surgery. when the surgery is done I’m having a nipple created on my new boob at the same time.

Not sure if any of this helps but I’ve never regretted having the implant, I love the shape size and feel of it and look forward to the other one matching it.

good luck with the second opinion, if by any remote chance you’re living in Dorset I can recommend a fabulous surgeon

 

take care and stay strong xx Melanie 

 

Member

Re: Limited options for surgery, please help.

The implant I had with the LD reconstruction was underneath the muscle and I had no problems with the look or feel of it for 30 years until last year (as I was being diagnosed in the other breast) when it was found to have ruptured. I had a new implant put in at the same time as the lumpectomy and port removal.

Member

Re: Limited options for surgery, please help.

Catbear - sorry to hear your experience and really hope you get it sorted. I had an implant on top of the muscle - so maybe that has made things easier/different? LunaMuna - if you are looking at implants, do ask whether you can have yours on top of the muscle.

Hugs, Evie xx

Member

Re: Limited options for surgery, please help.

Hi,

Just to let you know my experience. I had a bilateral mastectomy a year ago. At the time I knew that I wanted reconstruction and I was advised to have reconstruction with implants due to the easier healing time. I have totally lived to regret that decision. Although I do look normal with clothes on the implants do not feel comfortable at all. The first implants I had bottomed out after a few months and so I had a revision with a reputable surgeon. Even after the revision I do not feel comfortable, still need further surgery as my results aren’t great. So what I though was an easy solution has turned into a nightmare. I enjoy swimming and being activity and my chest feels tight always due to the fact that the implant is under the muscle. This might just be a reaction from my body to implants! Totally get your feeling about wanting to look normal as I felt just the same. Hoping the other surgeon you see can offer you further suggestions.

Member

Re: Limited options for surgery, please help.

Hi LunaMuna

Kathy makes a good point about looking longer term. But at the same time it is a very personal decision. I was like you and wanted to wake up with "something" there. I also had to have radiotherapy after my mastectomy and implant. Surgeons generally don't like doing implants (not sure about the tissue recons) before radiotherapy because of the risk of hardening of the implant/tissue round it (google "capsular contracture" for more info) - but it is worth discussing with them.

All the best for your next consultation and do come back on here and let us know how it goes, or if we can help more.

Evie xx 

Member

Re: Limited options for surgery, please help.

I had a mastectomy when I was 38, followed a year later by an LD reconstruction - would that be a possibility for you? I wouldn't make long term decisions based on the fact of waking up with one breast because, whatever you think now, you would adjust very quickly, I'm sure. Better to look to longer term outcomes.

Member

Re: Limited options for surgery, please help.

Hi Evie

Thanks for your reply. It was really strange that she wouldn't entertain the idea of an implant. She kept telling me it wouldn't feel real. Of course I know that! And I don't really care as long as it looks okay. 

I have to have radiotherapy after surgery, I don't know if this is a reason?

I suppose I shall wait and see what another surgeon will say.

 

Xxx


@Evie-S wrote:

Hi LunaMuna

I’m sorry I don’t think I have an answer for you, as I had a mastectomy and implant at the same time, but I wonder why your surgeon won’t do an immediate diep recon at the same time, did she explain? It’s good she has referred you for a second opinion. If that does turn out to be the only option for whatever reason, you might want to speak to ladies who have opted to stay flat, I believe there are many on here and Facebook. 

Sending you big hugs. Let me know if there is anything I can help with. 

Evie xx


 

Member

Re: Limited options for surgery, please help.

Hi LunaMuna

I’m sorry I don’t think I have an answer for you, as I had a mastectomy and implant at the same time, but I wonder why your surgeon won’t do an immediate diep recon at the same time, did she explain? It’s good she has referred you for a second opinion. If that does turn out to be the only option for whatever reason, you might want to speak to ladies who have opted to stay flat, I believe there are many on here and Facebook. 

Sending you big hugs. Let me know if there is anything I can help with. 

Evie xx

Member

Limited options for surgery, please help.

Hi all

I have met with my breast surgeon today and she has informed me that the only possible surgery that she can offer is a mastectomy without reconstruction. After much pushing she has agreed to refer me for a second opinion. She dismissed the idea of an expander, temporary implants and therapeutic mammoplasty. She said that the only other option for me is to have a delayed diep flap reconstruction.

I am 40 years old and the idea of waking up with one of my large breasts removed is terrifying me. 

I would love to hear about anyone who has had a similar experience or maybe have some ideas for me that I can put to them. My tumor was 10mm but has disappeared with chemotherapy and I have some dcis that is contained in the bottom half of my breast.

Thanks for reading 

Xxx