Hello, I am 39 with no history of breast cancer or any health issues really, no family history, and I lead a very healthy lifestyle. I’d go as far as to say I’m the fittest, healthiest, and happiest I’ve ever been in my life.
After a work colleague who is a similar age to me was recently diagnosed with breast cancer, it prompted me to check (thank goodness!), and I found a lump. Off to the GP I went who confirmed they could also feel it, then I waited 4-5 weeks for my appointment at the breast clinic. I was only expecting to have an ultrasound because of my age, but after having the ultrasound I was then sent straight for a mammogram (awful), followed by a biopsy in the same day. I was then asked to wait again as I would be having a chat with the consultant, which seriously ramped up my anxiety. After an agonising 45 minute wait, I entered a room with two consultants and a Macmillan nurse. They told me that what they had found was very suspicious and that they were 80-90% sure it is cancer, they even showed it to me on the screen. They made me repeat this back to them to make sure I understood what they were saying, and asked me what I do for a living and wrote it down (I’m not sure why). They explained that they would be analysing the biopsy, and then bringing me back in in 2.5 weeks to discuss the results and a treatment plan. I was then handed over to the Macmillan nurse and given a card with her details.
So now I’m facing a two and a half week wait period where I literally don’t know anything, but have it in my head that I have basically got breast cancer. Being assigned the Macmillan nurse has made me feel like they already know. Has anyone else had this experience and how did it go for them? Is there any point in thinking I could be in the 10-20% category of it not being? And does anyone have any tips on how to cope with the agonising wait and ‘limbo’ period before they get their proper diagnosis/prognosis?
The only way I can describe it is I feel like I’m having an out of body experience. And I’m not sure how to deal with normal life, work etc. when I’ve got all this going on in the back of my mind. Any tips would be greatly appreciated as I am naturally a very anxious person.
I’m so sorry you are going through this and whatever happens, you’ve done the right thing.
The waiting and not knowing is the hardest part. None of us can help take that away for you, and I know that’s not what you’re asking. Just know we all care and are all here to offer support and kindness. Lean on us however you need to.
I too was told to expect a cancer diagnosis after the initial scans and biopsy and my world collapsed. The wait between knowing it properly is breast cancer and the treatment plan is dreadful, horrible and a cause of deep anxiety. It’s okay to feel how you feel.
You can call the Breast Cancer Now nurses helpline and have a chat esp if you find the idea of speaking with a McMillan nurse scary. From experience it’s the nurses be they BCN at the hospital etc or on the BCNow and McMillan helplines generally who will give you the moral support and encouragement to get through the next few days hence the consultants having one there. You do not have to talk with them but they are there if you need them.
As Jaygo said, you have still done the right thing being checked out. So proud of you for doing that as it takes raw courage to do.
Thank you for your kind words, it really means a lot. And it’s useful to know that other people are in/have been in the same situation as me. I’m finding it hard to concentrate on work, reading, tv shows, films, cooking (i’m not hungry), don’t want to exercise etc. All of my ‘go-to’ things that I normally enjoy aren’t doing anything for me. Suppose it’s pretty normal to feel that way, I just hope it doesn’t last and I eventually get some motivation back.
I had the same experience and unfortunately it was cancer. The consultant mentioned his concerns but at no point mentioned cancer and the doppy nurse stroked my arm as said she was sure I wasn’t expecting this to happen.
As 'this wasn’t discussed I fleetingly wondered whether she meant a complete stranger stroking my arm
I was told by the Breast Care Nurse at second screening ( called back after routine mammogram )that they were pretty sure it was cancer albeit mine was a different situation as I’m much older than you . My cancer was also very small and early but clearly visible - I had realised that something wasn’t right as I was one of the first to arrive at clinic and one of the last to leave having watched quite a few ladies walking away looking relieved clutching leaflets about cysts and other benign conditions.
She apologised in advance in case it turned out to be a very rare benign condition - apparently there are many of those but said they were pretty sure . Until all the results are in they really can’t tell you what is going to happen - they have to have those back in order to formally confirm whether it’s cancer or not and if so what type. One of my relatives said well it might not be and that messed with my head a bit - it was honestly easier to accept that it was cancer.
Waiting for results and treatment to start is awful - I ended up ringing in sick because I couldn’t concentrate my mind kept flitting off and that isn’t safe when you’re a Nurse . Other people have found that work is a good distraction . I did find that I could enjoy moments - indeed seemed to enjoy lovely things even more and every time my mind started wandering off I thought of something nice that had happened that day and reminded myself that there would be something nice to enjoy the next day . Try to take it like that just a day at a time . For me personally evenings were the hardest . If you have a good friend that you can trust not to tell everyone else or or make your crisis their drama then it will help to have someone to share with.
Until you have your results it’s best to resist the urge to Google as a lot of the information is out of date may make you more anxious and a lot of what you see may turn out to be completely irrelevant to your particular treatment pathway if and when you get it . You might find it helpful to talk to the Nurses on the helpline here open 9-4 weekdays and 9-1 Saturday may be able to give you a little more advice and information .0808 800 6000 is the number .
I’m so sorry you’re going through this. I think most of us who have been through the breast clinic will recognise that horrible feeling of suddenly being dropped into a world you never expected to be part of.
Firstly, try not to read too much into being given a Macmillan/breast care nurse. Given that they’ve told you they are highly suspicious that this is cancer, it makes sense that they’ve given you someone to contact and support you while you wait. It doesn’t mean they already have information from the biopsy that they haven’t told you.
Unfortunately, until the biopsy results come back, nobody can tell you for certain what it is and I know the waiting is agony ..
The other thing I would say is please try not to disappear down the Google rabbit hole during these next couple of weeks. Even if it does turn out to be breast cancer, you don’t yet know the type, grade, receptors, stage or treatment plan, and breast cancer isn’t one single disease. Googling without that information can take you to some absolutely terrifying places that may have no relevance whatsoever to you.
I remember that awful limbo feeling very well. You somehow carry on doing completely ordinary things while thinking, “How can everyone else just be getting on with their lives when this is happening to me?” The waiting and uncertainty really can be one of the hardest parts. Like you I was assigned a breast care nurse and I was pretty much prepped for a cancer diagnosis . I had my surgery exactly two years ago and finished active treatment last summer
For now, take it a day at a time and use your breast care nurse if you need her. You don’t have to suddenly become incredibly brave or positive either. Being frightened, crying, being distracted at work and feeling completely surreal about everything are all understandable reactions to what you’ve just been told.
And if it does turn out to be breast cancer, you will be given much more information and things often feel slightly more manageable once there is actually a plan in front of you. Right now you’re stuck in the horrible bit where you have all of the fear and almost none of the information.
You can also get in touch with the Breast Cancer Now nurses for some support x
Completely normal reaction. You are in shock and your fight flight brain has taken charge.
If you can manage to do some breath work (look up box breathing if you don’t already know the technique). You can do this literally anywhere. It will help you regulate your heart rate and oxygen which will help to lower the stress.
None of us have taken this advice, but we all know that Dr Google is very dangerous. If you can try and resist consulting it for now it will save you a lot of potentially damaging information that may not be applicable for you. I always say ‘work with what is between the noses’ your nose and that of the team working with you.
For the next couple of weeks, just practice self-kindness, delegate as much as you can at work and at home and allow yourself some space. There are no rules in this, no ‘shoulds’ ‘ought to’s’ ‘musts’. Just self-love. And cake. We’re big fans of cake on here!
I think you have been given some very sensible advice by everyone already. First of all, you did absolutely the right thing by getting yourself checked. Second, try not to overthink things. My experience was one where they told me at the breast clinic that they thought it was breast cancer. I found that helpful, even though there’s always that shred of hope that it’s something else. It meant that when I went to the results appointment I wasn’t shocked, and I had been able to read up in advance about the different grades and receptors, so I was able to understand what it all meant. It does sometimes seem like you are entering into a world of foreign language. Going in prepared to be told it’s breast cancer was the best mental adjustment I made. Next, don’t be surprised if you find some results not back, or some additional tests needed. That’s all very normal. Unfortunately the waiting game is the hardest bit.
You wouldn’t believe how much your replies and advice is comforting me right now - thank you so much for sharing your personal experiences. I do believe I will feel better mentally when I have a plan, and you’re so right about Google so I am going to try to stay away from that as much as possible.
The shock has worn off slightly now and I’m finding I am able to do small tasks here and there at work and at home. I’ve started a journal and I’ve made some plans with friends for the weekend. I’ll just take things a day at a time until I know more.
The wait is awful I agree. I was told to keep busy during the wait for my biopsy results, but I was barely sleeping and was desperate for my phone to ring. They told me to “keep busy” but I felt like I had an axe swinging over my head!
Whatever your diagnosis will be, know that you are not alone in your anxieties, and if you do end up needing Macmillan they are absolutely superstars. There are multiple organisations you can phone if you need to talk.
And I will Echo what other folks have said and don’t go down the search engine rabbit hole (and under no circumstances touch anything AI-related)! Every person is unique and information you find may not relate to you or it may be out of date!
I was in exactly the same position back in February after my first screening mammogram. I hadn’t felt anything. I was told it was cancer after an ultrasound and that the biopsy would give the information about a treatment plan.
It was the worst 2 weeks of my life waiting and I was in complete shock. Lots of tears and imagining the worst and I could barely eat or sleep. It was constantly on my mind. I tried to remember that it had been caught early and was very small. There’s no easy way to get through the wait.
I’m a problem solver and always research online but everyone is right about avoiding Google until you know what you’re dealing with. Everyone is completely unique.
I’m so glad you’ve reached out on here as there is so much support. The best advice I saw was to just keep with what you know at this moment and don’t race ahead with ‘what ifs’. As you said one step at a time. Sending hugs
It’s such a rollercoaster, one day I’m fine, and the next I’m a complete nervous wreck. The most random thoughts pop into my head (usually at night time). Obviously I’ve no idea yet what stage it or type it is, but for some reason I’ve been thinking it will be stage 1 or 2 at the most, then last night it suddenly dawned on me…what if they tell me it’s stage 4?? It hadn’t even crossed my mind until last night, and now it’s all I can think about. But I suppose whatever it is, I will just try and tackle it…what other choice has anyone got?
I also had a similar situation during the first appointment, and then waiting for 3 weeks before getting a confirmation of a tumour and a treatment plan. I was 43.
The waiting period did put me into a strange planet emotionally. Part of me wanted to talk about it a lot, but also I didn’t want to mention it to too many people. I was able to tell my parents, and a couple close friends, and that was really helpful.
Having the MacMillian nurse available was also good, that is why, I think, they put you in touch with one on day one, regardless of the test results.
Personnally, I did do a lot of reading on the MacMillian, CancerUK and BCN websites, to understand the disease and possible treatments. I also looked into my job and financial situation. It was quite overwhelming, but it gave me some control in some way. Also, when I got my results and treatment plan, all this research allowed me to ask a key question about my fertility, as chemotherapy was going to damage it.
The other thing I did during this period, is nice things outside work, like walks or nice meals. I also went skying in an indoor place as I wanted to do it, and it was July.
Although there are hurdles in this journey, we also discover a new side of ourselves, in terms of what we want, what we need, and a new level of courage and resilience.
I also recommend reaching out to the Someone like me scheme. They put me in touch with a wonderful woman to speak with for two years.
Thank you for sharing your experience, and I am sorry you have had to go through this as well.
I know exactly what you mean about wanting to talk about it but not wanting to tell anyone. It’s such a strange scenario! I’m lucky that I have a supportive partner and stepdaughter, who I can completely be myself around at home. I’ve explained to my boss what’s going on who has also been really lovely and supportive, and even sent a bunch of flowers to my home last night which cheered me up so much. I have a couple of plans with groups of friends this weekend and next, and I’m not sure how I’m going to feel around them because I don’t want to tell them the ‘news’ when I don’t know much myself…and I also don’t want to bring the vibes down!! So I’m just going to drive and make up an excuse as to why I’m not drinking, as if I drink alcohol I know things will start to spiral and I’ll become overly emotional. Right now it’s all about looking after myself, nourishment, and self-care.
In the more positive moments, I actually feel kind of like I am looking forward to discovering who I am after this whole experience is concluded, if that makes sense??
Yes re your last question that does make perfect sense - I’m several years post treatment and have so far been very lucky but something like this certainly makes you sort out your priorities and what you want out of life . I find I don’t get so stressed about little things now .
I don’t drink much alcohol anyway but when I was in the waiting stages I cut my caffeine intake down - rarely had coffees just a couple of cups of tea a day and that helped .
I hope you enjoy your weekend with your friends - I used to try to think of weekends and bank holidays "days off " if I could. It sounds daft but bear with me . I knew that on Sunday particularly there would be no letters / appointments / phone calls no plan released no change in plan and nobody there in case I was tempted to ring up myself . So I made Sundays a day off from cancer . I couldn’t stop thinking about it entirely but I was definitely more relaxed and in the moment . A little trick of the mind that might help you . Xx
Yes that is certainly helpful to think of it that way. I’m trying to make a small goal for each day whether that’s “do a food shop” or “have lunch out with friends” just so there’s something in each day to focus on outside of work.
I do have another question … I’m not sure if anybody has experienced feelings of denial? I sometimes sit here in complete denial and I am convinved they’ve got it wrong.
One thing that did happen to me on my second ultrasound when I was called back in is I noticed somebody else’s name at the top of the screen and when I pointed it out and asked if that should be my name, the nurse said “oops yes well spotted”. Could it be possible that all of my scans and x-rays are that of another person entirely??
I think I know the answer but all of these things have got me really spiralling today.
I wasn’t given any indication that it could be cancer during my assessment process, but the ‘good luck’ a nurse gave me was telling in retrospect. I had an MRI though and they started setting me up lying on my back - I was a little confused given what I’d read - then they asked me my DOB… they had been about to do someone else’s MRI!
Someone with the exact same name as me had been booked in at the same time slot, I saw her get called in right after I was done I still don’t know if I was actually supposed to go to that appointment or if they’d accidentally rung me instead of her. But stuff like that can help sew the seeds of doubt.
Nearly one year on I still just sometimes think - maybe it wasn’t even cancer?? even though they’ve literally removed it and tested it now. Having a BRCA2 diagnosis is even worse because I sent my genetics off to America for that… maybe it’s wrong?? But the reality is that they do check these things, particularly when it comes to cancer.
It’s okay for it to feel unreal though. This is a very surreal process, even if you don’t have cancer. Honestly, a bit of denial right now - while there’s nothing you can do to influence the results either way - may not be too bad
Arty1 
Bluey 
I tried to remember that it had been caught early and was very small. There’s no easy way to get through the wait.
I still don’t know if I was actually supposed to go to that appointment or if they’d accidentally rung me instead of her. But stuff like that can help sew the seeds of doubt.