Hi everybody, I was diagnosed with dcis before Christmas and had a wle on New Year’s Eve. I went back to the hospital on Friday for my results. The consultant said that he had taken 40 mm from my breast which was more than he first thought. He also said that they found more dcis and it’s high grade. He’s given me a couple of weeks to make a decision whether to have another wle or have a mastectomy and reconstruction. I just don’t know what to do and feel in limbo. He said that if it’s the wle then they could find more or it could come back so I am erring on the side of mastectomy just so I know that it’s gone. Any feedback from anybody who has been through a similar experience would be good thank you. I have a 6 year old little boy who I would like to be around for so I just want to make the right decision for myself and my family. Thank you everybody, xxx
Hi Bubblesa2
Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.
While you are waiting for replies could I suggest that you give our helpline team a ring and have a chat with them about the decisions you are having to make, they are here to support you through this. Calls are free 0808 800 6000 lines open 9-5 Mon-Fri and 10-2 Sat.
Take care,
Jo, Moderator
Thank you Jo, I think I will ring and get some advice, xx
Hello Bubblesa2
I had a 50mm high grade DCIS and had two lumpectomies and was advised that I would need another one done to get a clear margin or have a mastectomy. As I had my two operation two weeks apart and suffered from fatigue after the second operation I chose to have the mastectomy on the basis that if a clear margin wasn’t gained with a third lumpectomy then I would need a mastectomy.
Having the mastectomy was the right choice for me as the cancer cells were found to be right up to the edge of my breast tissue. I have never regretted having my mastectomy and recovery has been fine. Although I felt sore afterwards I did not require painkillers. Doing the exercises afterwards do help the recovery.
I decided not to have a reconstruction and I took to wearing my prostheis easily.
To chose a mastectomy is not an easy decision for some people, but for me it was as I went with my gut feeling that it would be the right decision for me…and it was!
Kiz
Thank you kiz, I really appreciate your reply, I have decided to go with mastectomy as, like you, this was my first gut feeling. I am also hopefully going to have reconstruction at the same time. I feel much more positive now I have made a firm decision. Thanks again, xxxxxx
Hi Bubblesa2
I was diagnosed in Nov via mammog. DCIS high grade, had wire guided WLE in Dec took 5 cm and had not cleared the margins, taking more to clear the margins left me with hardly any breast, they advised to have mast/recon and also did mention may have something hidden in the breast not known yet. I had my SNB 14/1 and the have come back and said it is not DCIS in nodes but cancer! Totally flipped me can’t believe it, dont hang around and go for it from my experience. They cannot now tell me where the primary is and it is distressing, also don’t qualify for a PET scan WTF! You have to decide for you, but dont dally despite them saying you have time with DCIS!!! Also consider the state of your boob by the time they have finsished. Good luck and let me know how you get on J x
I’m glad your going with your gut instinct. For me it has always been the right thing to do by.
I was advised that I would be able to have a reconstruction one year after my mastectomy. One year and four months later I’m still not going to have a reconstruction of any kind.
Do you know/have any idea what kind of reconstruction you will be having? Have you been reading up on the different reconstructions? Here is some reading material that I read regarding reconstructions, but you will also find some on this site as well as Mcmillan (which shows pictures of real people and not drawings).
bapras.org.uk/resources/plastic_surgery_information_guides/breast_reconstruction_patient_guide
Thanks, I have been reading up on reconstruction and I’m hoping to have an immediate reconstruction. I just can’t imagine waking up and having nothing there!!! It all depends whether I’ll need radiotherapy or not afterwards. I know people who’ve had reconstructions and are really happy with them. I’m scared but I feel at peace with my decision. Hope you’re ok? Love and hugs, xxxxxx
I had DCIS diagnosed in September, grade 2 but fast growing and quite a large area - although it was assumed I would opt for lumpectomy and radiotherapy, I was considered “rather slim” for that and what with the required margin of healthy tissue, then it was more practical to have the mastectomy. A SHOCK! But I had it done with an implant. Do not regret the operation, although it is radical.
The cancer is gone … and all in one go.
Then you just need time to recover
Thanks all, I’ve been told that I’m probably not a suitable candidate for the reconstruction using my tummy as it’s a very long op and I also have MS, so it would affect my health. I’m probably just going to go for the implant. I’ve got to go to clinic next week to discuss all the options. Xxxx
Thank you to you all, your support is very much appreciated, love and hugs and healing thoughts to you all, xxx
Hi Bubblesa2
I too was diagnosed with high grade DCIS in December. My consultant recommend a mastectomy due to wide spread after further biopsies. I have opted for immediate reconstruction but have had all the different options going around in my head!! Was trying to decide between LD flap or tummy but had a consultation with a plastic surgeon this week and now wont be considered for the tummy op due to also having MS and operation time! Now had the decision made for me and going in next week for my mastectomy and immediate LD reconstruction. Bit anxious about it all but after all the waiting will be glad for it to be over.
Thinking of u in ur decision xxxx 
Hi Sharon 22. Thank you, it sounds like your situation is very similar to mine. I hope everything goes well for you and you make a quick recovery, love and healing hugs, xxxxxxx
I’ve now been told that due to my MS and the fact that I smoke and my BMI is slightly up that I can’t have an immediate reconstruction. I can sort the smoking out and lose a bit of weight but the plastic surgeon said that because of my neurological condition I may never be able to have reconstruction. I feel like they’re pushing me to have a second wide excision but deep down I really feel like I should have the mastectomy, but I also feel in a no win situation, if I do go for a second excision, with it being high grade, I am chancing my life. But if I have the mastectomy I face life without a boob. I am so upset and angry at the moment!!! Xxxxxxx
A similar situation to me I think. Diagnosed with high grade DCIS June 2013 with 2 WLEs within 4 wks. Then a course of radiotherapy and I thought that was that. Diagnosed at my 1st annual check up with a recurrence of 40mm of high grade and micro invasions and had to have a mastectomy and SNB with 2 nodes removed. I wanted an immediate reconstruction and was offered an LD flap and had a permanent implant at the same time because of not enough tissue on my back. 6 months on and I am really pleased with the outcome. Two scars have never really bothered me, the one on my back is so neat and out of sight and I haven’t really had any problems with it. The implant has settled down and is a good shape. My only problem is because I had the Mx after radiotherapy I have developed mild lymphodaema in my arm which is more annoying than the after effects of the operation. With hind site I wish I had had the Mx after the first WLE, without the need for rads. I also find it interesting how different surgeons offer different treatments. I was told an expander implant wouldn’t be right for me because I had had rads, yet other ladies are told they can’t have permanent implants for the same reason. I have to agree with previous posts though about it being your choice. Recovery is long, especially if you are going for one of the bigger operations. It’s only now that I am feeling more normal and looking back I realise what an effect the operation had on me, both physically and mentally. You have to be prepared to take any help offered, do the exercises and don’t be over ambitious. It really is personal because it is you that has to cope with the after effects. I wish you well and hope that you make the best decision for you and you get the reconstruction you want.
Helen xx
Take advice from consultant and breast cancer nurse. They know you, your condition and the statistics around it. I had dcis, but too big for lump. So had a mast.
I have been advised by the consultant to have a mastectomy, just waiting to know when my date will be. Do you know how long you usually wait?
My nhs hospital had an 8 week window from diagnosis to operation. I was operated on in the final week. But had needed 2 biopsies. Helen
What at was the biopsies for? Do they take the lymph nodes out at the same time if needed or do you have to wait for tests.
What was the biopsies for? Do they take the lymph nodes out at the same time if needed or do you have to wait for tests.