DCIS

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Hi, I've just been diagnosed with high grade DCIS, but I'm struggling with how to feel about it. I'm feeling stressed about the surgery and possible radiotherapy. I have been told to stop my hrt, so I'm worried about that aswell. I'm struggling to focus at work at the moment.

However, the consultant likes to say it's not cancer because of the fact it's not an invasive cancer at this stage. This 'not cancer' line and response they give makes it feel as though it should be a walk in the park and that I have no right to feel the way I do. Has anyone else experienced this?

  • Hi, I know exactly how you feel as I too have just been diagnosed with high grade DCIS. Just had 2nd set of biopsies to see how large the problem before the different surgeries are discussed. 

    You are just getting your head around the fact you have cancer & need treatment  / surgery & some bright spark says its OK at least its not cancer. Not helpful as you then feel a fraud for feeling so worried. It may be a non-invasive cancer, but it is still cancer & we have every right to feel worried. 

    In the grand scheme of things, if you are going to get cancer then this is the least traumatic version. Not a walk in the park & still scary & you need to find supportive people who neither play it down nor the woe is me kind. 

    Hoping everything goes smoothly for you xx

  • Hi Allsmiles & Holie 

    Sorry to hear about your diagnosis , if you were like me , it was quite a shock . 
    so I was diagnosed with high grade DCIS back in May . 
    I am now post op and awaiting radiotherapy to start . 
    The way you feel is completely normal and you will go through a lot of emotions and these are valid. 
    You will feel scared of the unknown , and waiting for results can be the hardest part . 
    I have gone through this and I’m coming out the other end , 

    You have got this . If you ever have any questions just let me know . 

    I found the hardest part was after all my biopsies and then waiting for my op , I found myself not able yo focus and took a couple of weeks off work ,  Then  had my op on the 24th August , I’m still off work now just because mentally it’s a lot to get your head round and you need that time . I went  for my appointment with my consultant on Monday and he gave me the “all clear , managed to get it all out. 
    which I'm thankful for .

    just waiting for my radiotherapy to start .

    It’s a journey you have to take , there is no getting around that .
    do be strong and take gradual steps to get to where you need to be x  

    It’s not a quick fix but I promise you will get there . 
    I’m glad I took some time off work , mentally I needed this . 

    Keep  in touch , I’m always here if you need me . 

  • Thanks for your kind words. It's comforting to know that the way I'm feeling is normal. I'm glad you've been given the all clear. I hope all goes well with your radiotherapy and that you're feeling better soon.

  • I think the 'not cancer' thing is designed to stop people from worrying as much, but it doesn't really have the desired effect. I hope all goes well for you too xx

  • Hi Allsmiles,

    I had a lumpectomy four months ago and lymph nodes removed, I  finished my radiotherapy a few weeks ago and am now taking each day as it comes. I know mine is slightly different from mine, but if this turns out to be the worse case scenario, yes It is a shock when you are told, but it is important you take a bit of time to let it register and sink in. The strides made in modern cancer medicine these days is amazing and they can do so much for you. However, there is so much you can do for yourself too.

    You have made the first big step by finding the Macmillan site, also do visit your nearest Macmillan centre, a list is on here, or ring them on 0808 808 0000, they are superbly helpful and give you lots of great info, do walks, talks, help with benefits, bills, open 10-4 Mon-Fri for coffee and chat and lots more. Please also get a good support structure in place, family, friends, good work colleagues, I’ve lived on my own for nigh on forty years, but realised you can’t do this on your own. I also go for a short walk every day (British weather permitting) and do a daily diary, this is mega helpful, as it gets everything off your chest and out of your system. It is important during the day to keep yourself occupied, hobbies, interests etc., it stops you from dwelling on what is going on. You may also find it beneficial to listen to a meditation podcast, they really help you to relax especially when you are trying to get to sleep. I use one called ‘Go Gently’ by Christine Elizabeth Smith, it does a lot for me. Whatever you do, do not visit Dr Google as there is so much conflicting information, your head will spin and it will stress you out, listen to your medical team and ask your breast cancer nurse as many questions as you want - also, you get great support on here.

    I know it’s hard sometimes, but try and keep as positive as you possibly can, have positive people around you and dump the negativity, above all, be kind to yourself - I promise you, you will get through this. You are never alone and can always come and chat to us shower in here.

    Keeping fingers and everything crossed for you.

    Take care and big hugs.xxx

  • Hi Allsmiles

    Sorry to hear about your recent diagnosis, I too had a high grade DCIS which had spread to my lymph nodes. I was told to stop my hrt immediately and also have my mirena coil removed. I won't lie coming of the hrt cold turkey was worrying and not very pleasant, physical side effects to begin with were awful but they only lasted a few weeks and then about 4 weeks after the emotional side effects hit in but my doctor told me that was normal. Luckily menopause symptoms are very few now and a lot milder than they were before hrt.

    Everything you are feeling is normal, it's a scary time, there's a lot to get your head around, I'm not surprised you are struggling to focus at work, be kind to yourself and if you decide to take time off work to focus on you that's ok, it's not always easy but you need to put yourself first.

    I really hope everything goes ok for you, stay strong and if you have any questions just ask away xx

  • Thanks, it's useful to hear of your experience of stopping hrt. I am apprehensive about what's to come regarding the menopause symptoms, but I'll just take one day at a time and see what happens. I took the day off work today which has been beneficial, as I haven't really had time to fully process my diagnosis since receiving it last week. 

    I hope everything is going okay for you too xx

  • Thank you for your reassuring words and advice. I think some of my stress was through waiting for phone calls for appointments and also missing phone calls because I was at work. I took a day off work today, had some rest and also some time to process everything. Luckily I also received a date for surgery which has put my mind at rest slightly. 

    I hope everything is okay for you and that you are recovering well following your radiotherapy xx