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?

  • Hi J94

    I hope you're keeping well. Have you any news on your diagnosis? I'm really struggling to find relevant info for people in their 20s (or late 20s if I'm honest as I am 28!). I am so grateful for everyone's advice and support- but even my consultants often caveat their info and stats with 'well this stat typically holds for someone diagnosed in their 50s/60s.. we don't have precise data for your age'. 

     

    I've just moved out of Clapham to Sussex to be in the countryside for a year- near friends and family/ hopefully find it easier to 'shield'. I've been feeling so positive recently- I don't want to jinx it, but I have hardly noticed chemo... (apart from now being bald). I was warned by doctors and friends and family that it would be difficult, and of course it is no walk in the park, but I feel really quite well.

     

    Unfortunately today I've been told I have a dodgy BRAC gene so will need to have a double mastectomy as soon as I'm done with chemo and then perhaps (once I've had children?) a hysterectomy/ ovaries etc removed by the time I'm 40.  Once again I feel angry this is happening. It's silly but Covid is making me even more bitter about the whole thing. I just wish I could at least have some company or even face to face appointents with my expert consultants. It all feels so alien over the phone. Anyway, I hope you're keeping as well as can be. Keep in touch. Dee xx

  • 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

  • I am 58 and scared stiff as I have to wait for operation until safe to go in hospital. Don't want this inside my body x

  •  

    Hi Beeee,

    A very warm welcome to our forum. I am so sorry to hear that you are having to wait for your operation. Do you know what type of breast cancer you have or what grade it is and, are you having any other treatment meanwhile?

    I can understand that you just want to get the cancer removed as soon as possible and, you must be quite concerned about this delay. Have you been given any indication of how long you are likely to have to wait for surgery? If there is much of a delay, can you consider ging to another hospital?

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • I am 59 years of age and waiting to have mammogram and ultrasound because they found something in breast and am absolutely so scared has a lot of my family has passed with cancer x

  • Hi alb20,

    It sounds like you have been through a lot in such a short space of time. I'm guessing since your original post you've had some updates and I hope things are a bit clearer. 

    I'm 36 and was diagnosed with breast cancer 2 weeks ago. So far i've had ultrasounds / biopsy and MRI. I'm going back for another ultrasound next week as a second lump was found and they also want to put a clip in me and ultrasound under my arm. So far i've been told i'll have surgery in October / November. A lumpectomy has been discussed so far but this depends on the second lump as it could be a mastectomy. I knew in advance i'd want a reconstruction if this was the case but i haven't had time to discuss that yet. 

    It's a shame they are not offering reconstructions yet. As others have mentioned it may be temporary and it looks like you may be able to have one down the line at a later date. My mum had a mastectomy and chose not to have reconstruction, although she is older. But she has coped very well with a prosthesis. She also came out of hospital on the same day as her surgery and her recovery went quite well. 

    Fertility is something the breast nurse spoke to me about as they said anything related to this would need to take place before any treatment begins. I will be having chemo in about 3 weeks and the nurse said they can discuss fertility with me further at the hospital if i'd like. I have a 5 month old and didn't intent to have any more children but it can still be a difficult thing to process. It's good to have all the information so you can make the right choice for you. 

    I'd also found asking about the side effects of treatment to be helpful. I was given information about wigs / hats / beauty etc and where I can go for support / help in my area. As some others have mentioned I was asked about genetic testing so it may be worth if you haven't already having a discussion about this.

    I hope by now you have more information. I've found the forums here a great sourse of support and you can always call your breast nurse as well. 

    Good luck with everything.