Thanks for your advise and support. I seem to have taken over your original post Hay123! How did your appointment go with your surgeon and what did he say about the pain? I guess its all ok if you have surgery planned for october.
Im due for surgery next weds -eek! Dreading it but atleast I'll be one step further along and hopefully closer to turning my back on this "blip" as my gp called it! I am having a double mastectomy provided the psycologist agrees?! Apparently they refer you to be checked by a psycologist to ensure youre 100% sure about your reasoning behind opting for a double mastectomy i guess if youre cancer free on the other side. Its box ticking i think!
Am not looking forward to weds and will be hard with my two little girls. My 1 year old is teething terribly so wanting cuddles and up in the night! My husband will be run ragged by all 3 of us! Ha haa!
Thanks for your messages, support and advice. This website has helped me tremendously!
Hi Laura C
I'm also sorry that you have become a member of 'the DCIS club'!
I was diagnosed in February 2012 and had a mx and immediate DIEP recon in April 2012. I am a bit like yourself - strong family history, but no BRCA gene, lots of areas of high grade dcis dotted around the breast and also some ADH (Atypical Ductal Hyperplasia) which are 'markers' for cancer cells. Due to the size of my breast and the amount that they would have to remove to get clear margins, and the family history, it was strongly recommended that I have a mastectomy. Given all the information that I had received, they gave me the option of a bilateral mx, but I opted just to have the affected side done. I was assured that just because I had it in one breast didn't mean that I would get it in the other one.
Regarding monitoring, I have only been given an annual routine mammogram. Being under 50 that is something that I now get until I'm 70, in our area anyway. There doesn't seem to be any additional checks as standard. However, the breast care nurses are superb and if you have any worries they make the time to see you.
It is a really worrying and emotional time, and the sooner that it is done will be better for you. Do you know when you will be having your operation, and what type you are opting for yet?
Like Hay123 says, the reconstructed boob is different from your normal boob (if you only choose the single mx), but your body gets used to it quite quickly - between 4 and 6 months. As much as that sounds like an enormous amount of time, it actually goes quite quickly and all of a sudden it just happens!! You have yourself a new 'normal' lol. My PS managed to get fantastic symmetry with me and I have not had to have any other operations at all. I haven't had a nipple reconsructed either. It doesn't seem important to me at the moment and I don't really want to 'tempt fate'. I feel lucky that all seems to have gone ok for me (in the grand scheme of things). Some of the nerves in my reconstructed boob seem to have 'knitted' back together again and I have some sensation around the boob itself. It's not much and nothing like my real boob, but to me it's a comfort as it's like my body has accepted it (if that makes sense?).
You will go through all kinds of emotions in the coming months. This site is fantastic. There is a tremendous amount of support for you.
Take care, and keep us updated with what you decide.
Love Mandy xxx
Hi Laura c
sorry to hear you have been told you have DCIS 😞
i was told last October 12, same as you. I totally understand how you are feeling. Its a horrible scary time but you will be fine.
i was terrible and very very teary, I've thought how will life be the same. But life move on and you have to be strong. I'm 7 months on from mx with implant. The sential node biopsy is fine, you will worry but is very rare to have node involvement with DCIS. The mx is ok too, more discomfort than actually pain. They will supply you with painkillers but you won't need them for long. It does fill very strange at first hard and tight, I did find this hard in the first 4 months but it takes time to settle. so many lovely ladies on here told me this. Believe it because it does settle and you become less and less aware. If you only have the one done it won't feel the same as healthy breast but you get used to it 🙂 I ask to about have other one removed but they wouldn't. They keep a close eye on me, I've seven him every 3 months since op, this is not the norm but I had a few issues with swelling and rashes but all fine now. Boob looks really good. I'm down to have uplift on healthy boob in October. No nipple reconstruction yet. Not sure weather I will.
i hope this help be brave and you will be where I am in no time. Xxx
Hi there Hay123,
I'm new to this as have recently been diagnosed with DCIS. Just wondering how you are getting on? I am 36 and been told at hat I need a mastectomy as the DCIS is spread over an area of about 7cm. I am considering a bilateral mastectomy as although I don't have the BRCA gene have stong family history. The doctors say its not necessary but will support me if that's what I want to do. They said they will be closely monitoring me afterwards and will pick up any new changes on the healthy side v early so I should be reassured.
Just wondering how you are getting on and what extra surgery you needed if any to the healthy side and how often you'll be monitored. Have you had nipple reconstruction? I've been told ill have to lose mine as there's a large area of DCIS behind the nipple. I am really anxious about surgery and recovery and paranoid they'll find worse things in there than the DCIS. My dream scenario is to be told it was just DCIS and sentinel node clear. I will be ecstatic if that happens!
Anyway hope all is well and good with you!
Take care Laura x
Hi Hay123. I used to get incredibly sore (and lumpy) boobs about 10 days before my period which would stop on the exact day that my period started. I found that this was the case the older that I got, so possibly it is hormonal. It still happens occasionally, but my periods are a bit all over the place now so I guess they might be getting ready to stop soon 😄
For piece of mind, it doesn't hurt to get it checked though. Better to be safe than sorry 🙂
Hi I had a mx with mesh/implant. My boob has finally settle and feels really good. It's over 6 months now since being confirmed DCIS medium grade. Just a bit worried about other breast, my last 3 period I've had pain only on side from ovulation till my period.Then pain goes only to return again. My worry is I went will pain in my right boob and found DCIS. My mammogram was clear on left and ultrasound 8 month ago. How likely could this be anything or just hormonal. I'm 37
Any advice, I'm back to see surgeon on 14th June for a check up and discuss uplift on good boob that now has pain it also feel slightly lumpy too.