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23 waiting for full breast cancer diagnosis during Covid-19

alb20
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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?

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    Hi Alb20,

    Welcome to our forum. This is always a scary time, but it is even more scary at the moment with the COVID19 pandemic.

    I have had 2 bouts of breast cancer in the past 10 years and, know how frightening it was when I was told at my first appointment that the surgeon was almost certain that I had cancer too.  Sadly, this was confirmed the following week. I had a lumpectomy in 2010, followed by a double mastectomy the following year.I couldn't have reconstruction, due to previous non-cancer related surgery, but I cope well with my prostheses.

    It is disappointing not to be able to have reconstruction at the same time as your operation. Please don't panic at not having the option of reconstruction at the moment due to COVID19. You can always have a reconstruction at a later date when this pandemic is behind us. There are a number of people in the same position as you at the moment.

    As someone who has had a double mastectomy, I can assure you that there is nothing to it. You will be a bit tender for a couple of weeks, but will recover quickly so long as you do your exercises regularly.

    You will not have many questions to ask until you get your results and know what you are up against. At your age, here's hoping that you have caught it early. This is a particularly difficult time to be all alone to deal with this. Do you have any friends who you could discuss how you feel openly over the phone or What's App? It really does help to have support of friends or loved ones at this time.

    Now that you have found this forum, you need never feel lonely again, as we are always here for you. Please let us know how you get on next week.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    HI, im very sorry to hear  this, you are very young and it seems so unfair,i know..... i am supporting a loved one of 39 diagnosed with Her2 pos BC at the beginning of Dec, i can honestly say the day she got the diagnosis was the worst day of our lives, she has small children and her first thought was of course that she was going to die...i think everyone reacts like this.....the first weeks were a complete horror  and stress of one test after another, mrt, zintigram, cardiologist, oncologe, scans  etc...it was a horrible time but we got through it and 4 and a half months later shes doing really well and that initial anxiety has faded, its not gone completely, how could it?, but having a treatment plan and getting on with it does tend to reduce anxiety to where you can see things a little bit more positively and put it all into perspective.....im assuming you now have your diagnosis? i dont know if its a positive for BC but even if it is, please believe me  that everything is do-able, chemo is do-able, not great but you get through and survive!....if you have to have it try to remember that it is not the enemy but a friend who is there to get you well again!.......remember most importantly that BC is highly curable today and it is NOT a death sentence!!!......you are young, which can be a huge advantage to fighting any disease, at this time with the added worry of the corona virus it is not easy i know, but the caution you must take having treatment is no different than without the corona virus, you must adhere to the hygiene rules and the isolation, which you would need to do anyway......i hope you have support from friends and family and you can always talk to us here.....i know how much that helps...i wish you all the very best and believe me girl.....you CAN do this and come out the other end just fine.....let us know how you go on.....xxx

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  • Offline in reply to Jolamine

    HI, im very sorry to hear  this, you are very young and it seems so unfair,i know..... i am supporting a loved one of 39 diagnosed with Her2 pos BC at the beginning of Dec, i can honestly say the day she got the diagnosis was the worst day of our lives, she has small children and her first thought was of course that she was going to die...i think everyone reacts like this.....the first weeks were a complete horror  and stress of one test after another, mrt, zintigram, cardiologist, oncologe, scans  etc...it was a horrible time but we got through it and 4 and a half months later shes doing really well and that initial anxiety has faded, its not gone completely, how could it?, but having a treatment plan and getting on with it does tend to reduce anxiety to where you can see things a little bit more positively and put it all into perspective.....im assuming you now have your diagnosis? i dont know if its a positive for BC but even if it is, please believe me  that everything is do-able, chemo is do-able, not great but you get through and survive!....if you have to have it try to remember that it is not the enemy but a friend who is there to get you well again!.......remember most importantly that BC is highly curable today and it is NOT a death sentence!!!......you are young, which can be a huge advantage to fighting any disease, at this time with the added worry of the corona virus it is not easy i know, but the caution you must take having treatment is no different than without the corona virus, you must adhere to the hygiene rules and the isolation, which you would need to do anyway......i hope you have support from friends and family and you can always talk to us here.....i know how much that helps...i wish you all the very best and believe me girl.....you CAN do this and come out the other end just fine.....let us know how you go on.....xxx

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