DCIS mastectomy and DIEP

Diagnosed with breast cancer DCIS/LCIS
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Hi everyone, I’m new to the forum. I have extensive intermediate grade DCIS and am due to have a mastectomy and DIEP reconstruction in early November.

My journey actually started a year ago in September 2022. I was 35 at the time with a 4 month old who I was breastfeeding. I noticed blood from my nipple one day after a feed and my baby vomited and it was all pink. I went to the GP who gave me treatment for mastitis. A week later it hadn’t cleared so I was given more antibiotics and sent on my way. It still didn’t clear so I was referred to the breast clinic at my local hospital, but in the meantime had 2 more courses of antibiotics!!
I continued to breastfeed my baby throughout but on just one side. It was hard work! I eventually saw the consultant at the hospital who said it was likely a benign growth in the milk duct and nothing to worry about. She said she would keep an eye on me but as I was still breastfeeding there wasn’t much they could do at that point. I said I had hoped to breastfeed for a year and she said that should be ok and she would see me in 6 weeks.

Long story short, I saw her every 6 weeks until March this year when she then insisted that I stop breastfeeding so that she could do an investigative surgery. I had this done in June and the plan was to try and remove the problematic duct. I was advised after that a section of all the ducts had to be removed as they were all fluid filled. Fast forward 3 weeks and I go back for the histology results by myself and am told I have DCIS. She’s confident that she’s probably got it all, but says I will need to have further surgery to get better margins. I have that surgery in August and again when the results come back it’s not good news. The DCIS is more extensive than thought and it’s recommended that I have a mastectomy.

I’ve gone back and forth trying to decide whether to have reconstruction, and if so whether it should be tissue or implant, and have finally last week settled on a DIEP reconstruction. I’m booked in for early November but am so nervous about the recovery. My son is now 17 months and very active. He loved cuddles and it just breaks my heart that I will have to try and keep him at arms length to avoid injury (he’s all arms and legs at this stage!)

Anyone gone through something similar have any advice for the recovery? There is so much to think about… post surgery underwear being the latest thing to try and get my head around!

Thank you in advance for reading my long post! It’s also nice to just get it all out!
Rae x

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Hi, sorry to ear about the mastectomy, i know is very frightening…
I had bilateral mastectomy, with no riconstruction because I didn’t feel to go through all the surgery, anesthesia etc…and the recovery was very fast. I imagine with riconstruction will be fast too. The cut is a surgical cut, so it is not very painful (at least for me it wasn’t at all). I didn’t have much sensitivity for 6/8 months, but now i feel my chest again normally, as all the other part of my body. The only think that i can suggest, if you have the possibility, it is to see a physioterapist, get some exercise after recovery, so your chest won’t make inside scars, as thay can be very annoying and painful too. It really helped me getting ready of all the thighten skin feelings. And a lot of mosturizing cream after the cut heals.
And super soft white cotton on the skin, no poly or syntetical material, not dyed, not thight, with a double layer: always wear something under the t-shirt, for avoiding sun and dirt, for at least 6 month (is what they told me at the hospital).
Also the pack they put on my after surgery was pretty thick and padded, so it kind of acted as protection! And you and your kid will learn soon how to deal with it!
My kid now is 3 and he grow up with milk bottles, that i gived him with the most love and he never saw my breast, but him and my husband like me the way i am.
I hope the advice were helpful, if i think at something else I will write you!
I wish you all the best!

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Thank you so much. Really appreciate it and very helpful x

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Hi,
I had bilateral Diep 10 years ago. I’d say the first 3 months were quite tough. You will have to encourage your son not to climb on your lap initially for cuddles. Maybe start now so hes used to just cuddling in others ways. Also try to get him used to not being picked up so much, as you really wont be able to pick him up for a while. It will help you too to get used to doing things a different way before your surgery. Just a suggestion for the first few days, hug a teddy and give it to him to get his hug. He can hug you too through the teddy. Maybe get a new teddy for him just for hugs.

The recovery is hard but worth it. Ive never regretted having it done. Good luck. x

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