Diagnosed on Monday, doesn’t feel real

I have been diagnosed with mixed ductal and lobular carcinoma. Unfortunately my lymph node also has cancer cells. I have to have an MRI and CT scans to see if it’s anywhere else. 2 week wait to find out the treatment plan. I don’t see how I’m going to cope with the wait. I think I’m still in shock, doesn’t feel real. Traumatic day yesterday telling my kids and family, I’m exhausted. How does anyone get through this? I’m so scared it’s spread 

Hi Sarahlou

I’m so sorry you have found yourself here - no one wants to have this diagnosis and you will probably find yourself stuck in an emotional tornado in the early days. It’s good that you have found this forum where you will find warm, supportive people with similar experiences. I too had two tumours, one ductal, one lobular, and heavy node involvement (2018) and my response was calm and totally in shock. There’s nothing wrong with that. Not everyone turns into a quivering wreck. What we all have in common is fear, a lot of it anticipatory which, when you think of it, is pointless. But who ever said we should be rational? I’m just going to offer you some thoughts and I hope they don’t come across as patronising.

  1. Stay away from Google. It is so tempting to look for quick answers but you have much to learn about breast cancer. One thing is that each case of breast cancer is unique. We may be at categorised as ductal, lobular, hormone-receptive, whatever, but behind those labels, there are genes, genetic mutations, DNA, blood counts (you’d be amazed at the list of things our blood will be tested for) so it’s unlikely you’ll encounter anyone with the exact same features as yours. But Google doesn’t know that and doesn’t care either. There are no filters, much of it is outdated, most of it is bloody scary - and this is not the time for any of that. So, in the dark hours when sleep eludes you, reach for Candy Crush or whatever - anything but Google.

  2. What’s been read can’t be unread. What’s been heard can’t be unheard. Already your head is taking you to scary thoughts about spread which, yes, is a possibility - but there are plenty of other alternatives. So why go for the worst? Work out how much you want to understand about your cancer, how much you need to understand, and decide what approach you want to take. Need to know is what I call playing ostrich (my approach lol). As a chronically anxious person, I knew my head would spin with what ifs so I decided to ask few questions and let the experts get on with it. However, some people take almost a forensic approach to their condition, insist on getting copies of all reports and educating themselves on their condition in order to feel more in control of their treatment. Neither approach is wrong and there is ground in between. You need to decide early on which suits you best because you can’t undo ‘damage’ caused by hearing something you didn’t want to hear. You can of course reframe your perspective but that takes time.

  3. I mentioned emotional turmoil. It is inevitable and actually healthy. This is frightening so expect to feel fear. Expect to cry. Expect insomnia. Expect all sorts of reactions. They probably won’t happen but every one of them is a normal and healthy response. Please don’t see them as weakness. We aren’t all made to be Cancer Warriors. We aren’t all keen to Wear Pink. Tears are normal, not weak, and it’s essential that you don’t bat away emotions because you don’t have time or you think you have to appear strong. This is a time for being kind to yourself in as many ways as you can find. It may be easy to organise some pampering but don’t forget to be kind to your emotional self too. Try not to laugh off a genuine emotion or label it as a pity party or whatever. Use the coming weeks (there is a LOT of waiting involved) to build up your resilience - meditation, yoga, mindfulness, running, whatever helps you. Headspace and Calm are NHS-endorsed apps with lots of ideas but they need regular practice if they are to be of benefit. It’s a sound investment.

  4. Accept and welcome support. You will need it. A mastectomy may be on the cards. The days after that, you’re pretty much useless in some ways and you’ll need help with the family, you may need to reassign domestic roles, you may need transport - that’s what friends are for. If they don’t offer, it’s probably because they don’t want to intrude - so ASK. It doesn’t come easily to some people.

  5. Find someone you can talk openly with. It may be your partner, a family member, a friend. You need someone you don’t need to hide things from, someone who won’t be overly emotional at the time but is a good listener. Bottling up your fears is not a great approach.

  6. Try not to anticipate. You mention you have node involvement and assume it’s bad but isn’t that what lymph nodes are for? To catch and contain harmful cells that would like to spread in your body? It my well be that you should be grateful for those nodes, not fearful that cells have moved beyond, rather than assuming it means the disease has spread. Try not to jump the gun. You are new to cancer and you will learn a lot, one thing being that there are so many myths and tropes that belong to the last century. Things have progressed in leaps and bounds.

  7. Last for now (sorry) - we are all here with a common experience, proof that, unpleasant though it can be, it’s all manageable. You may be a lucky one who sails through treatment with minimal side effects and maintains a ‘normal’ life as far as possible. You don’t know yet. You’ll be advised about all sorts of side effects - that doesn’t mean you will get them all. You may get none. Who knows? Just don’t compare yourself with anyone else. Someone may have carried on working during chemo. That doesn’t mean that you should or even can. Wait and see. Just don’t assume a prognosis - you are not a statistic, you’re an individual.

I wish you all the best for whatever lies ahead. It’s not an easy experience but it won;t be as terrifying as you anticipate.

Jan (who can never write in 100 words what can just as well be written in 1000!) x

Hi Sarahlou,

And I’m about halfway between you you and ChattersJ; I was diagnosed on the previous Monday (24th) and am awaiting results of biopsies on lump and lymph nodes. I know you will be going through turmoil right now - the inner howl that won’t even stop for a bit so you can re-group. I have met with much kindness and support on this forum and from my friends (I live alone) and it’s great you have your brilliant family alongside you. Even so, no-one knows how exactly it feels for you, and how turned-over you are right now. Yes, it is exhausting - I feel I’m going through the motions this week, like an automaton. I too think Jaybro’s advice is excellent (thanks, Jaybro!). At the moment it’s hard to believe we’ll ever feel anything other than wretched. That’s understandable. I’m holding on to what ChattersJ - and others - have said; once there’s a plan, our brains will back off a bit, our insides quieten down, and let us feel more settled. I’m sure this is something we too will find (even if it’s hard to believe right now) and will pass on to others in our turn.

All good wishes to you. x

I completely understand what you are going through as I was also diagnosed yesterday with mixed ductal and lobular. The biopsy is getting further tests now to see whether I am also HER+ as the first tests were inconclusive and then they will discuss with me plans. The wait is agonising, it’s very very stressful and I know exactly how you feel.

I find keeping busy and staying off google is the best way. I know it’s hard right now but it can only get better as the unknown makes our minds crazy!

Sending you lots of hugs!


Hi Sarahlou68,

My heart goes out to you & I (We), all feel your pain. You will get through this, you have no choice! 

We all act & cope differently in any given situation, but most of us, if not all of us on this forum have experienced what you are feeling right now. You will deal with it in your own way. You will probably get lots of advice & support from us all, most likely why you joined the forum. What we can give you is our experience of how we coped & dealt with this awful BC. 

When I was given my diagnosis the day before my 70th birthday 2 months ago, I took it all in my stride & thought, right, I have no choice, I have to get on with it & except that I have to trust the experts who are treating me. Everyone who I have met in the last few weeks at the 2 hospitals I have been attending have been so kind, I know that I am in good hands! 

Since diagnosis, of course I have had bad days, I allow myself to feel upset, it’s me this is happening to. My Husband, family & friends are all supportive but they don’t know how I feel. I do feel scared, I hate the waiting for results, but I know I am getting the very best treatment. 

I had surgery a week ago, (lumpectomy & Sentinel node excision & biopsy) My follow up appointment is next Wednesday for results & hopefully a treatment plan. The Consultant says either Radiotherapy Or Chemo, obviously hoping it’s Radiotherapy but if not, I have to deal with Chemo. 

This forum has been invaluable for me, it’s answered questions, put my mind at rest, given me support, helped me to feel positive & given me the platform to chat to others who understand. Please keep in touch with this group, come here whenever you want to chat. There is always someone who will listen. 

Take care, sending big hugs, Vivvymac xxxx