DCIS

Hi Patroo89 welcome to the forum and I am so very sorry for what has happened for you and at such a young age. Apart from an awful diagnosis you have to make a huge decision as well that's awful for you.

I cant advise either way but when you have small breasts as you say and such a large lump then there will be an effect on the look of your breast after surgery as they will have to take a lot of breast tissue to make sure that they have clear margins around the mass. That said a mastectomy will mean that there is no breast there and whilst you may opt to have reconstruction that will be your choice. At 28 years of age I can imagine that reconstruction will be a very valid concern for you. 

I hope that by my replying in some form to you that this may reach someone who may have had this type of surgery. I wish you well in your decision but I am so sorry to not have been of any more help for you .It is not an easy time for you nor an easy choice so you are doing the right thing and gathering information before you make the choice which is right for you.

Sending some huge big hugs your way for now. xxxx

Hi Patroo89- I’m 38 and was diagnosed at 37 with secondary breast cancer to the bones. I had an immediate reconstruction with a nipple and tissue sparing surgery to remove all my breast tumour and tissue and had the space replaced with an implant about 2 months ago. My tumour was 5cm and I was never offered a lumpectomy as I thought my tumour was too large. I’m quite a slim person too. Everyone makes a choice that’s right for them as everyone is different and has different thoughts about what they want etc. I’m not sure how your breast would look after a lumpectomy as I haven’t had that experience but I am happy with the implant- there’s still some swelling etc and it takes a while for the implant to settle. Still a bit of fluid too which will go down but I’ve had no problems with it. I have no feeling in my breast so it’s a bit weird but getting used to it. My breasts are not the same size exactly but I was told that before- they do look the same in a bra though! As I said, I am very happy with my surgery but depends what you want. Its important to decide what is right for you! Talk your feelings out with someone close to you and look at all your options. It’s a lot to think about I know- I thought about having just the mastectomy with no reconstruction too but I’m happy with my decision. You can ask me anything and I’m so sorry to hear you are in this position at an even younger age than me. Take care! Jo xx

Hello jo, my name is Laura, thankyou for reaching out to me. I really appreciate you taking the time to respond. I have a lot questions to ask if you dont mind. How has this effected you and whats the recovery like? Im a small chested person, im a 30 D and as much as i would like to save my breast the thing that is holding me back is the fact i dont feel i have enough fat on me if i went down the lumpecomy route and also i worry so much that it could go terribly wrong and i end up needing lots of furher surgey. Masectomy feels an easier much more straight forward option to pick. Whats the recovery like after a masectomy and reconstruction? Sorry to bombard you with lots of questions!! hope you are well. xx

Hi Laura, Everyone is different and it is whatever suits you. Only you can make the decision. Is reconstruction an option for you? It’s totally ok not to go for reconstruction if you don’t feel it’s right for you. Is the option there to have reconstruction at a later date if you wanted? I opted for reconstruction at time of surgery as meant only one operation. I’m a 34B so a little bigger. I have secondary breast cancer so I’m in the incurable bracket but they didn’t want the tumour growing and spreading further in area of breast which is why they removed it. Recovery was ok- I had two small drains in for just over a week after to drain extra fluid and district nurse came out every day to change the bags and then had them removed at home by district nurse. My scars healed very quickly. One scar under breast and one under arm where they removed some lymph nodes. I found it difficult lying back on bed for a week or two and couldn’t lie on my side for a while- had to lie on back. Saw the surgeon two weeks after and all dressings off. Just needed to be careful with movement and lifting things for a few weeks and had wee exercises to do from physio to get full arm movement back as skin is a little tight after where the scars were which really helped-now full movement again. I’m now about 9/10 weeks after and everything looks good- they say it can take months for an implant to settle. I have been sleeping on my side last few weeks. I see the surgeon 4 months after so hoping that’s just before Christmas just to see how things have settled. I am very happy with the surgery but you need to do what feels right for you. Hope that helps a little. I will say it wasn’t as bad as I thought it was going to be. I had never been in hospital before and I was scared but they looked after me well. Any other questions just ask! Jo xx

Sorry Laura, not sure if I answered what you wanted-I had a lady next door to me in hospital who had a mastectomy with no reconstruction and it was a quicker surgery, quicker out of hospital and quicker recovery time. I don’t have any experience of a lumpectomy. It would depend I suppose what your breast would look like after and if you’d be happy with what was left? Also if you would be happy being flat chested on one side with/without using a breast prosthesis? It’s a difficult decision I know. Hopefully your team can talk through your options with you too! Jo xx

Hi 

i had lumpectomy for a 1cm lump in my right breast which was towards my armpit. The surgery was quick. The healing was quick and the scar is barely visible. I was back running in just over a week and was on a beach in a bikini 3 weeks after surgery.  Im also very slim - size 8 with 34b breasts. I needed no further surgery but I know that with lumpectomy they need clear margins so there is that small risk that further surgery would be needed. A friend of mine had mastectomy for 4.5cm DCIS and immediate reconstruction with implant - her scars are also barely visible. 

Hope this helps a little - I think what i am trying to say is that my personal experience of lumpectomy was that it was quick and without drama! 

xx

Hi Jo

Hope you are well and thanks for sharing your story!

I'm in a similar position at 32. I've found this tiny lump in my breast 3 weeks ago and yesterday I was standing in a doctor's office listening to how I may have no other choice but lose my breast. It's been pretty devastating because they didn't give me the reassurance that I could have a nipple-sparing surgery.

My breast nurse mentioned that they rarely do that, which I found strange because I've been diagnosed with DCIS and it is more than 2cm away from the skin... she mentioned that the nipple "dies" (?!) which is why they don't do it. 

Was wondering if you've been told anything similar by your doctor?

Thanks so much.

Ax

Hello Axelle, I'm so sorry to hear that you're going through this. I was diagnosed with high grade DCIS and lost my breast in August. My lump was about 5cm. They said they might have been able to do breast-conserving surgery if I'd had larger breasts, but the DCIS was too large a proportion of the breast. I was able to have skin sparing, but not nipple sparing, due to the location of the lump. I think they will always try to save as much breast as they possibly can. They have multi-disciplinary meetings where a team (surgeon, oncologist, nurse, psychologist etc) decide on your treatment together, so you can generally have complete faith in what they recommend.

It's all so devastating, isn't it? I have to say, I am still dealing with a lot of emotions around losing my breast, especially as I was unable to have immediate reconstruction. I'm 46 now and can't imagine how this would have been for me when I was your age.

Do they have an idea of what size your lump is? If it's relatively small, they may think you won't need radiotherapy and then you might be able to have reconstruction at the same time as your mastectomy. 

One thing that helped me a lot, though I appreciate it's not for everyone, was the specialised psychology service that was offered. My BCN put me on the waiting list as soon as my treatment was decided as it was obvious I was going to struggle emotionally (who wouldn't?) and although it was a long wait before I could actually speak to someone, once I got there I've found it immensely helpful. Even just talking through concerns with your BCN can be helpful, too. 

Sending lots of love, xxx

Hi Axelle,

Im not actually sure to be honest sorry! He said he would try to keep the nipple because it looked nicer that way! He said he would scrape the cells behind it out and test it- if it showed cancerous he would then remove it but it’s just a shell he’s left and it looks ok- not really reactive but it’s just there. And because of covid I’ve had no further checkups with breast after surgery bar the few weeks after. I have secondary breast cancer which has already spread so not sure if that swayed his decision or not. My breast has an implant now instead of my large tumour so I look at it that way for me. It’s not the same shape but in a bra you don’t really notice. Scars are healing well too but I think he did a very good job! I feel weighted and equal but it’s a very personal choice and you do what’s right for you. I also really haven’t been out socialising etc to ‘show it off’ or to panic what it looks like as I’m in the house all the time during covid and I’m normally in T-shirt’s instead of dressy going out tops so it’s so hard to know how I actually feel about things cause no one sees it! These are very strange times but if you have any questions, ask away!

Hi HIJ75

So sorry for the delay in getting back to you, and thanks so much for taking the time to write and share your advice.

Ultimately, I've chosen to gamble and do everything possible to save my breast. I've had a partial mastectomy where they removed almost half of my breast. Sadly, two of the margins came back positive, so I'm going back next Friday for a re-excision surgery. The doctor is going to try to shave off the cancerous cells, but she doesn't know how far they extend... so again, she can't make any promises.

My lump was tiny, but it looks like so much of my breast is affected. I'm wondering if this little 1.5cm lump may have saved my life. Being only 32, I cannot imagine what it would have been like to discover this when stage 3 or 4 at such a young age... so I do am very grateful for that.

I'm just extremely concerned about what kind of life I'll get back to. Just like you, I know I will struggle with my body image after this. I am also single and was hoping that the best was yet to come, you know?!

Because my breasts are quite small too, there's only one try left. The doctor said she will have to remove the breast next, but I'm not thinking about that just yet. One day at the time...

You must have been so brave to make such a decision and work to come to terms with everything. I hope you are doing well! I'm sending my best wishes out to you.

PS. Thanks for the tip! I have put myself on the waiting list to talk to a psychologist, I think it'll be a great help.

Lots of love xxx