Hi - Ive just joined this forum. I went for routine mammogram in December and called back for biopsy. Got results on 23 December saying high grade DCIS, Stage 0 and booked in for mastectomy on my left boob 21st January. I was so shocked and really down and still trying to get my head around it all. I have appointment with breast surgeon on 9th January. At first I thought I wont have it done but think I’ve realised I have to. I think theyll be able to do reconstruction at same time as mastectomy.
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I’m so sorry that you’re going through this.
When you go to your next appointment ask if they have any emotional support available and let them know you’ve struggled with the diagnosis. It may be they have very little mental health support available (my hospital doesn’t offer much ) but it’s important you tell them.
Sounds like you’re getting your mastectomy quickly which is really good. Just to reassure you - I had a double 7 weeks ago and it has been absolutely fine. I was really scared because I’d never had surgery before but I have come through it fine (no reconstruction as will be having radiotherapy). The first week is uncomfortable because the drains are a nuisance but I wasn’t in any great pain and I only needed paracetamol for 2 days. I am usually a real wimp so was really surprised how easy it was. I’d rather have a mastectomy than a wisdom tooth out for sure.
Make sure you do your exercises as they help you heal well and maintain good movement. And drink lots of water to get the anaesthetic out your system and stay hydrated.
Wishing you all the best. Xx
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Thank you for that - really helps a lot! So glad you are recovering well. Ill let you know how I get on. Take care x
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Hi @moz61
So sorry that you are dealing with your diagnosis; it is all very overwhelming with the speed that it all happens.
It is an individual decision whether you go flat, have implants or the reconstruction. I personally had DCIS which ended up with me having a bilateral mastectomy with immediate DIEP reconstruction last April, it was a big operation but I feel it was worth it for me and can tell you more if you would like to know more.
Also, as @jayesse mentioned do talk to your nurse about whether counselling is availabe through your trust, my hospital offered it post-surgery, but it took a couple of months to arrange due to being a small team. I was sceptical, but it was really good and has helped me to move forward.
wishing you all the best xx
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Thank you for sharing that. I’m hoping I’ll be able to have reconstruction of some kind too. How long after the surgery could you go out for a walk, go back to work?
xxx
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Hi @moz61
I was up and out of bed the following day, then doing short walks when I got home from the hospital, building up over the next month to walking a couple of miles, albeit slower than my normal pace. I was able to take 3 months off work, which did benefit me, particularly mentally, and adjusting to what has happened, but some people do return to work a lot quicker.
Have a look at the Home - Restore - Breast Cancer Reconstruction Support and Keeping Abreast - Breast Cancer Reconstruction Support I found both sites really helpful.
xxx
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Thank you. I walk about 5 miles a day at the moment with my dog and go to the gym etc too so hoping I can still do walks even if not so far to start with. That’s good you were up and about so quickly - gives me hope 
x
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I had a left-sided mastectomy in August 2020. I stayed in hospital overnight, though most people went home. I was up and about round the house the next day. After a week or so I went on a family walk at a local country park, though I did sit and rest for a bit while the family did a longer loop.
About a month later I jogged/shuffled around a 5km loop as a virtual Race for Life. I was back in work at the end of October.
I think listening to your body and following the advice around stretching is the route to healing well. You mention walking your dog. I don’t have a dog, but can imagine that you might need some help walking one at first, depending on how much your dog pulls on the lead, etc.
Wishing you all the best with the operation and recovery
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Thank you that’s great and really encouraging. It’s so good to hear from others who have gone through this. It’s all I think about, wake up about etc x
Hi Moz,
I hope your surgery has gone well. I had a mastectomy and reconstruction on one side for 10cm DCIS on 30th Dec. So I am 3 weeks out from my op. The first week I felt little pain, but the second week the pain set in and ive been trying to manage it with painkillers. It’s nothing major and you will definitely be able to strive through, just keep on to of pain relief.
I’ve only been brave enough to venture out a couple of times, but am finding it tires me out a lot and I’m tense holding my breast to prevent any pain. I hope you healing goes well - give yourself plent of rest.
Take care x
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Thank you - I came home on Wednesday (22nd Jan) and been really tired partly because I didnt sleep in hospital overnight at all. I’m quite slow moving around too - looking forward to getting rid of my drain. I can’t go to the loo at the moment (probably all the meds) but it’s making me feel horrible on top of everything else. I feel positive though about getting through this and getting myself fit again x
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Did you have radiotherapy with having dcis,i have a large area and need radiotherapy trying to decide what reconstruction is best x
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Do you need radiotherapy? I have 10cm of dcis and have been told i need radiotherapy,.trying to deceide what reconstruction to go with xx
I didn’t need radiotherapy - just had reconstruction and they tested my lymph nodes whilst I was under so will get the results back in 2 weeks time. The implant looks ok at the moment from what I can see x
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I did not need radiotherapy because my consultant and surgeon were sure that the DCIS was contained from my MRI results. I had 10mm (low-med grade).
My post surgery biopsy of the breast tissue and lymph node csme back clear, but the DCIS was high grade in some areas. The only thing I need to take is hormone therapy.
If you have anymore questions, im happy to answer. (I’m 36 btw too).
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Aw im 31, mines is 10cm i think she said anything over 5cm required radiotherapy, at first i was thinking diep flap but now i need radiotherapy im not sure they werent keen on doing it after diep surgery as it would ruin the skin x
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It’s nice to know someone around my age, im sorry youre going through this too.
Radiotherapy is going to tighten any areas on the breast and in the underarm. It might be worth asking more about why they’re opting for radiotherapy. Have they said your lymph nodes may be impacted? I opted for the implant because the surgery was less extensive and recovery was faster. I may go for diep surgeey in the future but I didn’t want two scars to contend with at once. But it may be they only offer mastectomy at first if you need radiotherapy, and then an expander implant after that treatment? Ask as much as you can so you can make the best decision for you.
I’m in the place of making a decision about Tamoxifen, as theres no stats they can give us on reoccurance on DCIS. I’m really worried about potential side effects and effectively being in menopause at 36. It feels so unfair!
Im here to chat if you need any time x
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I know its nice to speak to people of similar age! What was your diagnosis? Mines was high grade dcis 10cm and idc stage 2 grade 2 triple positive doing chemotherapy now halfway through then surgery. Will be meeting with the surgeon again on tuesday so hopefully get some answers, i think it may be expanders or implants first then after radiotherapy maybe a couple years down the line i will do diep. Its hard to make a choice. I think they want to radiotherapy cause my dcis is over 5cm ? As i would like to have a double mastectomy and my lymph nodes on scans are clear (mri ultrasound, ct scan) so hopefully when suregry comes around that will still be the case.
Yeah would be nice to speak with you x
My diagnosis was med DCIS only (10mm) from MRI scan, but I had areas of high grade DCIS when they did a biopsy of all of the breast tissue, my lymph nodes were clear. It was contained and not invasive, which is why the only treatment I needed was surgery and now hormone therapy. Ive been extremely grateful that it didnt become invasive. What was the reason for you needing Chemo if you have DCIS? I didnt understand the stage description of your diagnosis sorry, can you explain a bit more?
Aw right, yes so i have 10cm dcis and invasive dutcal carcinoma stage 2 garde 2 triple positive so im having chemotherapy for the invasive part, its hard to tell what size it is but they thought it was 12mm but will know more when i get surgery but my lymph nodes look clear on scans, x