New member of a group that nobody wants to be in a position to join

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Hi, recently diagnosed with with ILC and awaiting treatment plan. Everything I’m reading re various treatments just sounds hellish and I’m struggling as all of this was picked up on general mammogram with no symptoms. I think surgery initially won’t be an option and am too scared to ask what stage it is. 

  • Hi Carolynb,

    Welcome to the forum.

    Everyone is afraid when they first learn they have cancer. It's a stressful time. 

    Once you have a treatment plan this will help you to process and work your way through it. Treatments have advanced greatly.

    I was diagnosed May this year, have had  a lumpectomy and sentinels nodes removed, chemotherapy and just finished radiotherapy. I am now on hormone suppressants and awaiting bone infusions.

    Whilst the chemo is not pleasant it is doable and time limited.. my worst side effects from chemo were fatigue and gastric upset. However if you need chemo your team will provide you with medications to combat these.

    I wish you well in your treatment. Please use this forum to chat and use the macmillan nurses and cancer care for support also xx

  • Hi CarolynB welcome to the forum. Like you I had invasive lobular breast cancer. Also like you mine was also picked up on mammogram almost years ago now. What gives you the impression surgery will not be an option? I had a lumpectomy with lymph node removal and the 20 sessions of radiotherapy. We are here for you as and when you need us to be and happy to answer any questions. Xxx

    gail

     
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  • Hi there, I appreciate your reply. You have been through a lot so hopefully you won’t need any more treatment. 
    Yes im at that initial shocked stage where I’m reeling. Thanks again 

  • Hi , thanks for your reply. It’s helpful to know you had the same diagnosis. Because it’s at chest wall I was told I might need hormone med first before surgery which is panicking me but awaiting a full consultation after he sees scan results. Thanks again 

  • Hi Carolynb,

    I had a lumpectomy some months ago and lymph nodes removed (mine was also found on a routine mammogram), I  finished my radiotherapy recently and have now been told I am clear. It is a shock when you are told and 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 there, 

    thank you for all those helpful tips. Yes I’m trying not to get sucked into Google and like you am getting out to walk to  calm the  panic. Congratulations on being clear Slight smile
    Will try Go Gently. 
    insight Timer app is good too. It’s great to have this forum as however kind people around me are this feels terribly lonely. One doesn’t want to burden family with the enormity of the emotional response. 
    thanks again x x

  • Hi , so sorry that you are in the club . The waiting and not knowing is awful . Once you have a plan , it becomes easier .

    i had ILC but it was contained in the breast . 

    Good luck x

  • Thank you, I appreciate your response. Hopefully there will be a plan today at my appointment so at least there will be more information and an idea of what’s to come. That’s good that your’s was contained. X

  • For lobular , they usually do an MRI . Mine didn’t show on mammogram Cry

  • That must have been difficult for you. Good that it was contained in that case. X