Hi, new to all this and absolutely terrified. I got called back after a routine mammogram for it to come back abnormal. Silently praying it was nothing I went for a Diagnostic Mammogram to be told t
re was a suspicious mass in my left breast.. I then had to have a Stereotactic Biopsy and results have come back as Intermediate DCIS. I have been told it’s not broken the wall yet but has the abili to do so, so seeing surgeon next week for surgery date and to find out what surgery they will be doing. Not sure if Radiotherapy is needed or tablets for 5 years yet. Anyone in same situation? It sms very lonely right now
Hi Kaz50
Can I first of all welcome you to the Macmillan Community. Sorry you haven't had a quick reply to your post - it appears to have slipped to 2nd page, so not many people will have noticed it. Hopefully by replying you should get some more support from other ladies going through it at the same time as you.
I hope I can offer a little comfort in the meantime. I had DCIS and a tumour. The best news for you is that DCIS isn't life threatening as it is described as pre-cancerous cells - It could or could not turn into cancer if left untreated. Which is great news, but obviously doesn't lessen the impact of any treatment you have to go through.
Because I had a tumour, my treatment plan was based on this but I had 54mm of high grade DCIS as well. It will depend on the amount, position and spread of DCIS whether you will have a lumpectomy (now called wide local excision) or a mastectomy. A tumour is actually easier to operate on! I was pretty large breasted, so although I have ended up with a dent, I didn't need a mastectomy. They will want to get a margin around your DCIS, so the amount they remove will be larger than the actual DCIS you have if you have a lumpectomy. If you do need a lumpectomy, then I found it ok. I went in earlier in the day for the guide wires to be inserted and waited until the operation at 4.30pm (I even walked into the operating theatre and hopped up onto the bed myself as I declined the pre-meds). At 7.30pm, I was home. I can't offer any advice re a mastectomy.
I had ER+ breast cancer (DCIS negative) so as I say the treatment plan was on the BC, so I had 15 sessions of radiotherapy. These days they often do 5 higher powered sessions, but mine was just over 5 years ago now, so a lot has changed.
I then had the 5 years of tablets which I stopped in August this year. If you aren't ER+(oestrogen positive), then you won't need to take the tablets.
You are in the worst bit of it all at the moment - the waiting and not knowing. I promise, as soon as you know your treatment plan, it does get a lot easier to deal with it all emotionally.
Kindest wishes, Lesley
Hi Kaz50
I can't recall the biopsy being too painful (but it is 5+ years for me now).
Yes, I guess it does depend what work you do as to whether you need much time off - being a carer, means lifting no doubt. I was office based, so only needed the day of the operation and the day after off work. But, lifting makes a huge difference. I had 80mm removed from my breast, so it actually took about a year before it stopped hurting when I lifted heavy things. I am guessing the smaller the amount removed, the quicker you recover.
When I had radio., there was only the option of 3 weeks (15 sessions) radio. The radio. team were great for fitting it into times when I wasn't at work, but I found it ok. I had to travel 60 miles there and back for mine and I was fine to drive myself each time. I did actually like the 3 weeks because the weekends game me a bit of a break. I had some burning under my breast where my bra strap rubbed - and in hindsight, I wouldn't have put the moisturising gel under my breast after the first week. I bought a special radiotherapy gel, but aloe vera gel from say, Holland and Barrett, is just the same and massively cheaper in price. Doctors can prescribe R1 and R2 gel for radiotherapy, but I've heard some struggle to get this prescribed. I put on gel a minimum of 3 times a day.
I would also say, drink, drink, drink! I went at a time when 3 other ladies went at the same time. 2 didn't drink very much and they both suffered really badly from fatigue (you do get advised to drink a lot). I always drink a lot of fluids anyway, but I upped mine. The other lady who drank a lot was the same as me - no fatigue. One of the 'non drinkers' - she had had 2 cups of tea by the time she went at 4.30pm!! - actually fell asleep at her desk at work.
I guess the best thing is just take the advice from your team. If they feel 5 days or 15 days is better - just go with what they say. Perhaps your employers can find you work that doesn't involve lifting clients? You can use the arm, but just don't lift anything heavy with it. If you offer that as an option to your employers hopefully they can find you some work which means you don't have to take so much time off.
I'm guessing as a carer you won't get a lot of sick leave. I work for construction company, so I only get statutory sick payafter 5 days - hence being back in work 2 days later. My previous job would have given me 6 months full pay and 6 months half pay, so I probably would have taken a bit more of an advantage of having some time off!, but it didn't affect my health at all going back to work so soon and probably helped my mental health to be 'normal'.
p.s. the clip is to ensure they don't miss the area when operating and the guide wires for me were put in on the day of the operation. (I had 3 as I had 3 different areas).
Kindest wishes, Lesley
Hi Kaz50.
I’m sorry to hear about your diagnosis, I hope you can get some comfort from people who have been diagnosed with similar to you .
mine is not exactly the same but I’ve also recently been diagnosed and my emotions are all over the place as it’s all happened so quickly for me ( 3 weeks from biopsy to surgery)
If I can be of any comfort to you I am 2 weeks post op after WLE and sentinel node biopsy.
I was also tender after the stereotactic biopsy but the core biopsy was ok. I also had a radioactive seed put in the week before surgery.
I came home the same day as surgery and for the first week felt tired and took my painkillers (paracetamol and ibuprofen) they do give you stronger if needed. I tried to go for little walks every day but must admit I was really tired on the afternoons. I think a lot of that was because I was emotionally worn out.
I’m second week in now and much better. I have some nerve pain, which they’ve said might take a while to settle but feel more like myself.
I’ve been back for my appointment and have started on hormone therapy as my tumour was ER+. I had DCIS and invasive tumour.
They have said my radiotherapy might be 8 weeks away if that helps you for timescales. I think you need to be fully healed and there is some planning appointments needed before you start. They did say initially for 3 weeks but now they are saying that 5 stronger blasts are showing the same results. ( hopefully I can have the 5).
Please rest as much you need and don’t push yourself - if at anytime in your life this is the time for self care 
️ I’m usually the type of person who needs to prove I can cope but it’s not the time for that! I’m going to have another week off work as I work in a school and I still have wounds, and a bit of fluid build up, they are healing but still a bit tender.
It’s really scary I know, but once I had the surgery and now I know my treatment plan it has become more manageable.
take care
Sue x
Hi Kaz50
Intermediate grade is medium growing and ER 8 out of 8 is good. The 8 out of 8 means how well your body will react to the oestrogen medicines, so that you are 100% responsive to the oestrogen tablets which is the best possible news you could get.
If you had a tumour as well for ER+ (oestrogen positive), it's likely that they would end up sending a sample away for an Oncotype DX test - they were just starting that when I was diagnosed and I didn't have it. That is to see whether ladies would be better off having chemo. as well, but for DCIS there isn't the need to have chemo. so they don't do that test for DCIS as it hasn't yet turned into cancer.
I was on Anastrozole for 5 years, but it depends what tablets you will be on. Pre menopause it is generally tamoxifen due to the fact that it stops oestrogen being produced in the ovaries as well. Post menopause it seems to be anastrozole or letrozole as the ovaries aren't producing oestrogen. I don't know why some ladies get either of those though. It's nothing to do with how soon after menopause as I was given anastrozole at aged 51, having just gone through menopause and my friends Mum at 80 had them!
The healthy margin is usually a 1cm area around the DCIS that they want to aim for. I don't understand why they would say that you would likely need more surgery, unless it's difficult for them to detect and are worried that they might not get it in one go. I had 2 separate areas and luckily at that point I didn't even know that they might not get it all, so I wasn't worried about it when I went back in for my follow up - I was just concerned that the tumour hadn't spread to my lymph nodes (which it hadn't) and when they said that they didn't need to re-operate that was a surprise to me. Quite glad really, as it was something I didn't else I didn't have to worry about :). Sometimes ignorance is bliss eh?
Thinking on it, it might have taken longer for me with the pain and lifting because I also had lymph nodes removed with the surgery (because of the tumour - to see if any of that had spread to my lymph nodes). So, hopefully it won't be so long for you before you are able to be lifting any decent weights without pain.
I had my operation in July and didn't start radiotherapy until September, so there's a little while in between which gives you a nice amount of time to heal. Working through radiotherapy is fine as long as you don't suffer from fatigue - hence saying to you to drink more than you would think is possible - I am totally convinced on this preventing fatigue, given those other 2 ladies.
Take each stage as it comes and try not to worry about the next stage until it comes along, is probably the best piece of advice I can give you. One of the things that I thought after I had had my treatment was that the fear of it all was far, far worse than the actual, if that helps a little.
Kindest Wishes, Lesley
