Diagnosed 3 weeks ago invasive lobular breast cancer

Hi all

Im Louise age 49 and recently diagnosed with BC the last 3 weeks have been a whirlwind to put it mildly . Diagnosed with invasive lobular breast cancer biopsy’s shown 18mm tumour then MRI shown more so now 37mm just been for preop appointment surgery booked for 5 weeks time Mastectomy ( after a lot of decision making ) and lymph nodes probably 4 honesty feel like screaming my heads in turmoil angry very numb upset and extremely frightened don’t actually think I’ve got my head around the diagnosis at all. ?

Hi Louise

I’m sorry you are having to join us but welcome to our forums and to a community of remarkable strangers, willing to share their experiences.

Yes, a cancer diagnosis turns your world upside down and removes your sense of safety and certainty, things you may never have thought about. All those emotions are normal and healthy responses. It’s good that anger features, as it’s one that’s often repressed because what or who can you feel angry at? I think I was numb and fearful. It’s only now, 3 years later, that I recognise that I feel angry at the injustice of it all. Why me? There’s no answer.

I had four different diagnoses over 4 weeks and my surgery resulted in a fifth. Do be ready for changes in diagnosis as a result of further tests and an awful lot of waiting. You mentioned feeling frightened, again a perfectly normal response but this is the 21st century, not the 1950s. Breast cancer has changed in so many ways, with a wide range of treatment options, considerable awareness of side effects and ways to mitigate their effects, and huge progress in success rates. Breast cancers which are caught early have an over 90% success rate, yet the words ‘breast cancer’ still instill horror. You will gradually find that there are very low points, sometimes extremely difficult times, but overall, it is manageable. It’s doable, even by a phobic with GAD like me! As for getting your head round it, I shouldn’t even try. Please don’t google!

If you can, share your feelings with someone you trust not to minimise your feelings. Is there a Maggie’s Centre you can access (it may be attached to a neighbouring hospital but it’s open to all_. Do you have a trustworthy friend? Do you have a partner who will support you throughout? You need to be thinking about a wide support network (not so easy in covid times). You need also to be taking particular care of your emotional wellbeing. Any time you invest now in developing your skills in meditation, mindfulness, yoga, running…whatever suits you and can help build the resilience you don’t realise you have and you really are going to need. You have five weeks in which to do this. Any good habits you can develop will then serve you well. There are NHS-endorsed apps like Calm and Headspace, there are innumerable videos on YouTube, many rubbish, but I’ve always depended on Progressive Hypnosis, which has improved my breathing technique and can also help with sleep.

I wish you all the best in what lies ahead. If you need to talk, I strongly recommend the Nurses’ helpline (number top right). They really are excellent and reassuring. Take care,

Jan x

Hi Lou

I absolutely sympathise with the shock and scary and confusing impact of diagnosis. I too was recently diagnosed with lobular primary at the end of February. Lots of stuff to get your head round and diagnosis details may change as you go forward as tests and surgery inform the next steps. I can say that although there’s lots of waiting around, things seem to happen quickly. I’m 4 weeks post mastectomy left breast now. And doing ok. I’ve got my first meeting with oncology next week for my treatment plan. I’m nervous but I’m trying to be practical and pragmatic and look forward to a good outcome at the end of it all rather than focusing on what may or may not happen. My advice for what it’s worth is to take one step at a time. Deal with each issue as it comes along and definitely don’t speculate on stuff that might never happen. Look after yourself, talk to family and friends but remember everyone is different and treatment is individualised. There’s so many support networks around in sensible places like this, you only have to reach out. I hope you soon find a settled place in your mind to carry you forward. Mindfulness works for me. Living in the now really can lower stress levels! But having said that there’s always a place for screaming in the rain!! I’m sure you’ll find a way that works for you. Be kind to yourself and take your time to come to terms with everything. Good luck.

Hi, having recently been diagnosed myself with a 13mm tumour and elected surgery for 23 June (5 weeks) , I know how your feeling and my advice would be to take each day as it comes and give yourself some relax time but try and keep a normal daily routine to keep yourself busy and occupied 

Hello Louise,

I’m in the same boat only much older - 77. Oestrogen positive lobular cancer 33mm in right breast and lymph nodes. I’ve asked for and am having a double mastectomy on 14th June, at the Marsden. Terrified.

The answer Jan sent just now is excellent isn’t it? I’m in France at the moment and I’m finding it nerve-wracking to be far from home and can’t wait to go back. 

The whole thing is a nightmare. But we’re lucky to have this website. 

Keep in touch won’t you?