Hi all,
This is my first time on here so just looking for some support from people who understand!
I was diagnosed with extensive DCIS a month ago after the hospital failed to acknowledge issues I had back in February. As the area was widespread I had a full Mastectomy on Thursday. Thankfully it had not spread to my lymph nodes so I know I’m increadibly lucky. Now I have to wait 2-3 weeks so see if had spread into the tissue & to see if I need further treatment.
Has anyone experienced something similar after DCIS & what treatment options did you have?
I have a young family & worry about the affect all this will have on them.
Also, I’m only day 3 post op & suffering from terrible tightness under the boob. I had skins Sparing reconstruction. Apart from doing the exercises can anyone suggest anything to help?
Thanks you so much for reading my story.
It’s very scary & this forum has really helped.
Hi whitey.so sorry that this has happened to you but you have come to the best place for support. I was diagnosed with high grade DCIS in sept 2016. I had a WLE followed by a cavity shave to get clear margins then 15 lots of radiotherapy. A year later iwas diagnosed with s small invasive cancer and have just had my 2nd lot of chemo. It is great that you have had the masectomy, although i know you wont feel like that at the moment. I wish i had been offered a masectomy last year. I will have a masectomy after my treatment is finished.
The absolutely worst time is waiting for results each time. Hopefully all of your DCIS has been removed and nothing else will be found. You are in good hands. Let us know how you get on x
Hello Whitey
I am sorry that you find yourself here especially at such a young age. I also had a mastectomy for 50mm high grade DCIS back in May. I didn’t have immediate reconstruction but I did have a temporary implant inserted to preserve my skin-sparing mastectomy. I am scheduled for permanent reconstruction next week.
My biopsy showed that I had a microinvasion so I also then had a very anxious wait for results after my op. fearing worse news was to come. I can totally understand your worry. In between op. and results I tried to keep very busy, or at least as much as I was able. Some brilliant friends and family even encouraged me to go away with them for a long weekend. This at least stopped me from having too much time to dwell on what might be. My results were good and surgery is the only treatment that I have needed. I have my fingers crossed for you too.
My op. was also on a Thursday so I can remember what it felt like just 3 days later. My elderly Mother, a former nurse (think old fashioned ward sister!) came for Sunday lunch. Gosh, did she ‘bully’ me to do my exercises! It is still very early days so take it steady when doing your exercises but do persevere with them as it should get easier. My leaflet on exercises gave guidance on what warm-up exercises you should do and what you should aim for week by week post-op. Also, if you need to take painkillers, do so on a regular basis and don’t leave it until you are desperate. They work much better this way. You may also benefit from doing your exercises shortly after taking pain medication.
Don’t be shy in asking for help at home from whoever and don’t forget somebody here will always understand what you are going through.
Big hugs,
Ezzie. X
Hi Whitey
I had High grade DCIS - 5cm’s and small boobs so had a mx with immediate recon and adm strattice in Feb 14. At first it feels like they have strapped a bowling ball to your chest but this does lessen with time. 3 years on I still have tightness and am constantly aware of the implant especially when I engage my chest muscles and the implant is distorted, but you do get used to it. Fingers crossed for the rest of your results.
Time, i just reached 5 weeks and chest and underarms still tight.
Hi ladies,
Thanks so much for your replies sorry for the delay but I’ve had a few isuses post op. I’m now having to visit the hospital daily to be monitored & receive IV antibiotics.
Your inspiring stories and supper means a lot.
Thank you.xx
HI Witney
i just came across your post, I’m Jeni.
I was diagnosed Aug 2004, aged 36. Although I’d had a lump for 6 month previous but didn’t think anything of it as I was breast feeding.
I had wide spread DCIS 6 X 6 cm, and decided to have both breasts off, given my son was just under a year old. I also had lymph sampling followed by lymph clearance. I did have reconstruction, but not until 4 years later, I opted for Becker implants. I had chemo and tamoxifen (4 years). 4 operations in total.
I was grade 2 stage 2. DCIS plus 1.4 tumor.
I got neutropenia but injections sorted that.
I decided to come off tamoxifen early, now I don’t take any prescribed meds.
now for the good bit 
following my treatment, I got my degree and post grad and am now a qualified complementary therapist and acupuncturist. I have my own little clinic
It took me a while to get my fitness back up to scratch, but now at 50 and well in the throws of the menopause … I lift … Weights … Heavy ones lol it’s my thing and I love it. Doing press ups has brought my implants back to life (they were drooping!) Oh and I’ve also learned to ski … Badly 
For my 50th I went to Ibiza, alone, and bumped into David Guetta just my age lol
I have good days, bad days, awful days and fantastic days the full spectrum
keep doing the exercises for me they were a must, don’t rush things eg try to drive too quickly. Eat well, for me vitamins/minerals worked well. Meditation, walks/fresh air, back to back net flicks or sky go (just in case) and probably the hardest one to do… Learning to say no!
Good luck! Xxx