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,

     

    So sorry to hear about your diagnosis. 

     

    I'm 27 and was diagnosed with breast cancer on 26 March 2020 after finding a lump in my right breast. Two weeks later (8th April) i was in surgery getting a mastectomy with no reconstruction due to the global pandemic. At the time i was extremely down about the thought of having to wait for the reconstruction as i just wanted it all over with in one operation but in hindsight I'm glad I've waited as it's given me more time to consider my options and get my head round things. 

     

    At first i was told they didn't think i would need chemo however a week after my surgery i was told that the cancer had spread to my lymph nodes and i would need 6 rounds of chemo over 18 weeks with radiotherapy starting after that.

    That's actually another reason im glad the reconstruction was delayed as my consultant says radiotherapy can mishape the new breast often resulting in another surgery to fix it. 

     

    As some of the other women have mentioned below, i am also getting hormone injections to stop my ovaries over the next 5 years which should stop and resume a normal cycle. I started getting the injections a week before my chemo started. I was unable to freeze any eggs or get any fertility treatment as the labs are currently closed but i don't know when they will resume again so i would discuss this with your oncologist once/if you get to that stage. 

     

    I've found forums like this particularly the McMillan page along with the support from the breast nurse very helpful, however i do understand how daunting the whole experience can be. 

     

    Please get in touch if you have any questions or just want to someone to chat to. 

     

    Sending lots of love xx

Reply
  • Hi,

     

    So sorry to hear about your diagnosis. 

     

    I'm 27 and was diagnosed with breast cancer on 26 March 2020 after finding a lump in my right breast. Two weeks later (8th April) i was in surgery getting a mastectomy with no reconstruction due to the global pandemic. At the time i was extremely down about the thought of having to wait for the reconstruction as i just wanted it all over with in one operation but in hindsight I'm glad I've waited as it's given me more time to consider my options and get my head round things. 

     

    At first i was told they didn't think i would need chemo however a week after my surgery i was told that the cancer had spread to my lymph nodes and i would need 6 rounds of chemo over 18 weeks with radiotherapy starting after that.

    That's actually another reason im glad the reconstruction was delayed as my consultant says radiotherapy can mishape the new breast often resulting in another surgery to fix it. 

     

    As some of the other women have mentioned below, i am also getting hormone injections to stop my ovaries over the next 5 years which should stop and resume a normal cycle. I started getting the injections a week before my chemo started. I was unable to freeze any eggs or get any fertility treatment as the labs are currently closed but i don't know when they will resume again so i would discuss this with your oncologist once/if you get to that stage. 

     

    I've found forums like this particularly the McMillan page along with the support from the breast nurse very helpful, however i do understand how daunting the whole experience can be. 

     

    Please get in touch if you have any questions or just want to someone to chat to. 

     

    Sending lots of love xx

Children
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