Newly diagnosed dcis

Good luck Helen!!

Hope your appointment went well MamaH.

Best wishes

Daisy53

Hi all,

so I saw my consultant and BCN last night. The plan is for a mastectomy- both breasts. No cancer in one breast but they want to do a risk reducing mastectomy in it as they’ll have to operate on it anyway to reduce the size and match it to the other breast. They’re hoping that this will cover all the treatment but I may still need radiotherapy. They’re going to put expanders in and insert implants 6months down the line. No holding the baby for 6 weeks- very upsetting. I’m also going to lose my nipples which I hadn’t thought about at all. I’m devastated and so angry that this is happening. I know I should be grateful they’ve caught it so early but it’s just so hard to think like that right now!

Hi MamaH,

I'm so sorry, I can't imagine how hard it will be to not be able to hold your baby for 6 weeks. Hopefully you manage to find away to still get those little cuddles.

I don't think there is anything you 'should' feel. What you going through is very difficult and feeling devastated and angry is very valid and I guess part of the journey. 

I had an appointment with my BCN last week to discuss my surgery and reconstruction options. It is looking like I will have a double mastectomy with Diep flap reconstruction and will also lose my nipples. My DCIS is in my left breast, but thinking about having both removed as I am now classed as high risk due to my age being 32, my mum's breast cancer history and I have a genetic condition called Neurofibromatosis type. For me I would rather have both removed to reduce the risk and for a cosmetic point of view.  The Diep flap reconstruction, sounds so scary though! My BCN has referred me to as psychologist to talk about having a double mastectomy. 

I don't know if it will help you, but I think once I have a surgery date and it is a bit closer, I am going to write a letter to my body, to thank it for it strength and to try and get all my feelings oiut.

I was at the hospital yesterday for a mammogram (my first ever one!) and further biopsy's guided by ultrasound. On my initial ultrasound, there was something small showing in one of my lymph nodes so the wanted to take a sample from that and further samples in my breast to check everything was contained within my milk ducts. She only managed to get one sample from my lymph node as it started to bleed and she couldn't see where she needed to go to get the sample. It's was rather sore yesterday afterwards and swollen. I'll be going back at some point next week to discuss the results?

Did you manage to speak to your manager? 

I have told my manager and she has been very supportive and understanding of everything. 

I haven't spoke to my family yet, other than my older brother. I think I am going to wait until I have the results from yesterday and then let them know. I think I am going to be a bit of a chicken though and send my grandma and mum's husband a message explaining everything and to ask they speak to my younger brother and sisters about it. I guess there is no right or wrong way. and we just do what is best for us. 

Emma xx

Hi Emma

Thanks for replying. I’m so sorry you’re going through this journey too. It sure is a horrible boat to be in. Today has been a tough day. I float between anger and sadness to worry about body image and what my husband will think. He’s super supportive and says it won’t be an issue but you can’t help but worry.

I am not eligible for the diep reconstruction due to having diabetes (type 2) so would be harder to heal and more risky for me. My surgery is going to be within the next two weeks so it’s all very quick and scary.

I called my manager today but she’s on leave. She’s obviously not expecting to hear from me as I’m on maternity until November but my consultant has said I’ll not be back for a long time so I just want to keep her informed and get referred to occupational health as soon as possible. I don’t know if I’ll even want to go back- I provide a lot of cancer care. It’s too difficult for me to even comprehend right now. Hopefully my manager calls me back on Monday when she gets my message.

mammograms are not pleasant so we’ll done you for getting through it. Hopefully the sample she got was enough. 

Telling family is so hard so do it whatever way is easiest for you. My husband and mum told most of my closest friends and family. They will just be worried for you and how you are feeling. I found it hard to tell my dad. His mum died of breast cancer when he was 14 and his best friend has just passed away of stomach cancer. That was a tough one but it’s done.

keep me posted on how you are, I certainly have found talking on here really therapeutic 

Helen x

Hi MamaH

I'm sorry to hear that you have to have a double mastectomy and that you won't be able to hold your baby for 6 weeks.  You have every right to be angry about what's happening to you, you are losing a part of yourself.

Wishing you the best of luck with your surgery.

Best wishes

Daisy53

Sorry you facing such radical treatment when you should be enjoying your baby.    My only thought is are you set on reconstruction or would you consider going flat? Sometimes they bombard us with information and tell us what they think best.   Was initially told I'd need reduction on good side for cosmetic reason but given a few days to think about as BC nurse coming out to see me.  I deliberated and decided no I'd leave healthy breast alone so when nurse came I told her and she said "oh that's off the table now.  Not needed they decided yesterday at MDT meeting".  They were right not needed , barely ant difference in breasts .  I'd just decided I'd loathed my boobs all my life - I'm a 36-38G,  They too big and in the way but suddenly I wanted to keep!  No logic .  I'm also type 2 (diagnosed 2016.  I take metformin which is supposed to offer protection from cancer recurrence according to some studies.  

Hi Carol,

I don’t think I could be flat chested. I’ve always hard a large chest and it’s definitely a part of me that makes me feel feminine. I will be going smaller but I would like some kind of shape. As they have to do the mastectomy on the right I would at least need a reduction on the left so the surgeon thinks this is the best route to have them as symmetrical as possible. It’s probably a bit vain of me I know. Hopefully the metformin at least does that. 
helen

It's not vain, it's doing what feels best & right for you xx

Hello everyone.

MamaH and  I am so sorry for what you are both going through. Its such extensive surgery and wih other health complications this must all be even harder. I hope there is lots of opportunity to talk things through and get support from the professionals on how to deal with such a change.