Hi I was recently diagnosed with a 3cm high grade DCIS after my first routine mammogram. Lumpectomy was not an option due to where it is so will need to have a smx. I have opted to have Diep surgery though worried about recovery time and time off work. I’m also a long distance runner and I’m training to be a sign language interpreter so this has come at the wrong time as I’m in the middle of my course and I’m having to cancel races. ( not that any time is a good time but at least they’ve caught it early)
I’ve just been referred to Nottingham. So have no idea how long I’ll be waiting for a referral or surgery and just feel like my life is in limbo.
I’m currently experiencing a rollercoaster of emotions. Some days I’m on cloud nine, other days I totally crash.
Sorry you find yourself here, do phone the number on here and speak to a nurse to discuss your questions 
have you been given a breast cancer nurse who you can contact at your trust? contact them too and discuss anything with them the maggies centre and the Macmillan at Nottingham city hospital are wonderful so do reach out to them too. Take it a day at a time, step by step you will get through, everyone does it their own way 
Shi xx
Hi well I’m not sure because I’m under Derby where I have a BCN but being transferred to Nottingham will be a different trust. Can I contact Derby in the meantime?
Ultra-warrior, yes contact Derby breast unit and speak to them, to find out what’s going on and for Nottingham contact numbers and who you need to speak to at Nottingham. The Derby team are very kind, helpful and supportive and will do all they can to support you with compassion as will the Nottingham team when you are under them Shi xx
Thank you I will do. I’ll contact them on Monday. It doesn’t help it’s a different trust and hopefully I’ll be referred soon because I’m in limbo at the moment.
I also need medical evidence letter writing to cancel races. My consultant sent one but it talks about me having quite a small breast and lumpectomy is going to leave me with poor cosmetic results and I should think about considering a masectomy with reconstructive surgery but the way it’s worded, it sounds like it’s my choice to have a masectomy.
@ultra-warrior sorry you find yourself here, but this is a fabulous forum. Regarding the races, I was in your position last year, as I’m an ultra runner, as I had a years worth of races I couldn’t do. I actually deferred all mine- most organisers were so lovely, and went above and beyond to support me. You can ask your current Breast Care nurse to arrange a letter for you- just outline what you need it to say. Good luck with the phone calls tomorrow. Hugs xx
Ultra warrior have they mentioned where any further treatment such as rads or chemo would happen if needed? It might be worth finding out and also which mdt team derby or notts you will come under. You could ring the number on here and speak to a nurse so you have as many questions as you want to ask your team about in preparation before you ring them Shi xx
Thank you. I am interested from a running point of view if I’ll ever get back there. Sorry to hear about races but glad it was all sorted.
Most have been awful so far.
One wanted me to notify any changes by the 31st March but I found out 1st April so will only refund me if I’ve got medical evidence and insurance which I have. Another will only give me half the money back if I do it by the 25th April. Another will only let me transfer to another runner (a 100k race in July) because I deferred last year.
The ones that have been great transferred with no medical letter and another one if I pay a deferral fee or I can get 80% money refunded as I took out insurance. I still need to sort GNR as I got ballot place and I doubt I’ll be running any races this year. Is that about right? I want to be able to do Brighton marathon next year, is this doable?
Rough you want does the letter need to say? Xx
It really depends on what your treatment plan is, but I don’t think it’s completely out of the question to be doing races this year. That said, you’ll need to manage your expectations as they’ll probably not be PB races. I stopped running whilst I was having chemo because I wanted to use my limited energy to do weight training and maintain my strength as much as possible. After my mastectomy, I went back to C25K just to make sure I was building back slowly because of the risk of lymphoedema since I had some lymph nodes removed. Still going through targeted chemo (Kadcyla) so I’m not booking any races just yet but I am targeting a 50k in September.
Right now you’ve just got a lot of unknowns which is really hard. Once you find out your plan it will all seem much more manageable.
Not yet I think they’re hoping the masectomy will get rid of it but I keep hearing stories where they’ve found more when they’ve done the surgery they’re also going to do some lymph node test xxx
@ultra-warrior it does all depend on your treatment plan- I had chemo first and I managed a “slow” half marathon after all 6 cycles. My oncologist told me I wouldn’t be able to- red rag to a bull!!! 
I then had surgery in August so could do nothing but walk for 6 weeks, then had radiotherapy. I’m now on targeted therapy (Kadcyla) and have done a couple of races (I’ve had 10 of 14 3 weekly cycles- yesterday I did my first challenging trail race, which was an 11 miler which was really tough, but so was the terrain. I have deferred 50kms in July and August. The first 4 weeks after chemo should finish. I’m 
that I’ll be able to do them, but fortunately they’ve both got good cut off times as I have to accept I could be walking a huge amount of it xx
Thank you that’s good to know
Yes I know what you mean if someone says I can’t do something then I want to do it even more
Thank you for sharing your journey with me and good to hear you’re back running again
Well done on the trail race it sounded tough
You will probably be injected with a blue dye for the node check, please do ring the number on here and speak to a nurse or ask your team if you want to know more details about that if you leave a message and they don’t get back to you, ring the main breast unit number, they will help you Shi xx