23 waiting for full breast cancer diagnosis during Covid-19

Hi all

I was wondering what other people's experiences during the breast cancer diagnosis process were like and how they coped during that time - especially anyone going through it all at the moment with the added stress of the Covid-19 pandemic, and anyone around my age (I am 23).

(Sorry for such a long post below! Didn't realise how much I wrote. But reading other posts and replies on here has really helped me feel less alone at the moment so I thought I'd try posting. Thanks in advance to anyone who bothers to read it/replies.)

For background -  I went to the GP after noticing soreness/hardness in my left breast then finding a small lump in my underarm, the GP urgently referred me to the breast clinic particularly as I have family history. At the clinic last week initially the consultant I saw seemed very dismissive but because of the lump in my underarm I was sent for an ultrasound/biopsy. I ended up having 6x biopsies and a mammogram too. I was sent back to see the consultant after the tests and he bascially said he was pretty certain it's breast cancer, and it's in at least the one lymph node in my underarm too.

He said they need the biopsy results to be sure but thought the chance it wasn't cancer was "very very small", and that I'd need to have a CT scan and skeletal survey the following week to see if it has spread. I've had those scans.

It felt very much like I was being told I have it, not like it was a maybe, but I feel confused and in a strange limbo where I don't know if I'm actually formally diagnosed yet, or anything about grade/stage, treatment etc.

The consultant said normally they might think about chemotherapy before surgery but because of Covid-19 they aren't doing this at the moment so it would likely be surgery first, and also that I would need a full mastectomy, where normally I might be able to have reconstruction at the same time but because of coronavirus the NHS isn't doing any reconstruction at the moment. Then probably chemotherapy after surgery.

The consultant let me have some time to sit and take it all in and then go back and ask him a few more questions, but I didn't really know what to ask at the time and he didn't really suggest anything. I have done loads of reading online since and now I have so much I want to know/ask about - e.g. fertility, surgery, how this will all work in amongst the Covid-19 lockdown, etc.

But also doing research and trying to think about questions to ask all feels pointless when for all I know it could have spread and be incurable, and I don't really know what the treatment plan will be yet. I don't know what I want to ask until I know how bad it is. I didn't speak to a breast cancer nurse, he gave me a card with contact details but like I said I don't know what to ask.

I'm hopefully seeing the consultant next week for results and will find out things like grade/stage, and what treatment I am going to have. 

Does anyone have any advice for how to cope in the meantime, when I have no idea how bad this is or what's going to happen to me, and suggestions of things that I might want to ask about when I see the consultant again? I feel like I've been told this then left without any support. I can't see family etc because of the lockdown.

I'm also struggling with the thought of likely having a mastectomy, without reconstruction being an option. Even though I would want to do whatever gives me the best chances of beating this, it feels scary that the Covid-19 pandemic means I don't get the option. I wish he hadn't told me that it was usually an option. Is anyone else in the same position?

Parents
  • Hi Alb20,

     

    I'm sorry you are going through this!

     

    I'm kind of in the same situation! I'm 30 years old and found a lump in ky breast about a month ago and as I was abroad, I went for a private ultrasound. I wasn't too worried as I had a lump in my breast 4 years ago and it turned out to he benign. However this time the radiologist categorised it as BiRad 4c (meaning there is 79% chance it's cancer). I obviously freaked out big time and flew back to the UK. I'm currently spending my compulsory 2 weeks quarantine while I'm being referred to a breast clinic for a biopsy - hopefully I will have an appointment by the time my quarantine is over!

     

    I know everyone says to not read anything on the internet, but I couldn't help myself, the lack of knowledge was extremely scary and was driving me crazy! Somehow I now feel extremely calm, kind of like I'm ready to go into battle. 
     

    Does anyone have any experience regarding the timeframe for receiving results after biopsy? Will they only tell me the results (in case of cancer) once they already have a treatment plan?

     

    Thanks for the answers and stay strong everyone. :)

  • Hi Huxi,

    Welcome to the forum that nobody really wants to join. I am so sorry to hear about your lump, but glad that you got it seen to quickly. It is normal to be seen at the breast clinic within 2 weeks from referral. You are likely to have an ultrasound and possibly a biopsy at your first appointment. It  can then take 1-2 weeks to get your results, although this can vary depending upon what is happening with the pandemic at the time.

    Your consultant will usually have met with his/her MDT (Multi disciplinary team) at their weekly meeting to discss your case before you are given your results. They have usually discussed your treatment plan before you get your results.

    I do hope that the ultrasound you had abroad is incorrect and that you get aother benign diagnosis. This is a scary time, but try to keep yourself busy in the meantime. This will help to pass the time you are waiting.

    Do please let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

Reply
  • Hi Huxi,

    Welcome to the forum that nobody really wants to join. I am so sorry to hear about your lump, but glad that you got it seen to quickly. It is normal to be seen at the breast clinic within 2 weeks from referral. You are likely to have an ultrasound and possibly a biopsy at your first appointment. It  can then take 1-2 weeks to get your results, although this can vary depending upon what is happening with the pandemic at the time.

    Your consultant will usually have met with his/her MDT (Multi disciplinary team) at their weekly meeting to discss your case before you are given your results. They have usually discussed your treatment plan before you get your results.

    I do hope that the ultrasound you had abroad is incorrect and that you get aother benign diagnosis. This is a scary time, but try to keep yourself busy in the meantime. This will help to pass the time you are waiting.

    Do please let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

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