Hi, I was diagnosed with lobular BC in may. Had lots of scans and Its not spread although just waiting for biopsy results of one slightly enlarged lymph. I understand its treatble and i feel so grateful but im already anxious it will return. Ive heard of cases of BC returning aggressively in bones etc. I know no one can say it will or won’t come back for sure but im desperate for positive stories about it not returning if anyone has any? Treatment plan is likely masectamy, radiotherapy, then tamoxifen for 10 years. Its hormone receptive which is a good thing. Will tamoxifen stop it coming back?? So grateful for any positivity please xx
Hi Stephie
First of all, I’m so sorry you’ve joined our ranks. It is a very frightening time and it won’t be a walk in the park (maybe not the best analogy right now) but it is all manageable, as the hundreds of us here prove. Personally, I think the emotional aspect of breast cancer is maybe half the experience so you need to be taking good care of your emotional health right now, even before treatment starts. Having no confidence in your team and their ability to treat you successfully won’t help you come to terms with what has happened. So trust them to come up with a treatment plan tailored to your specific needs and ask them questions. But please, don’t google.
The recovery rate for breast cancer is high now. Since you don’t seem to require chemotherapy, the risk of it having shifted elsewhere in your body may be lower than in the kind of cases you are thinking about, my own for example. For some uncharacteristic reason, I seem able to have stopped myself thinking about recurrence, though even that isn’t the end; it’s just more treatment you really didn’t plan on doing more than once! However, I made a huge mistake and I googled my NPI score, which I’d seen when my breast care nurse was giving me all the details I hadn’t wanted to know till treatment was over. The shock made me ill and it took her wise words to get me grounded again. In the interests of her privacy, I don’t think I should put them In the public forum but I will send you a private message if that’s ok. I hope you’ll find it makes you rethink.
Meantime, focus on your emotional wellbeing. Run, walk, garden, eat chocolate, meditate… whatever suits you. I have relied on Youtube videos throughout my treatment and they’ve worked brilliantly, considering what an anxious person I am. Ring the nurses here for reassurance - they are brilliant. And remember the high recovery rate for breast cancer now.
All the best
Jan x
Hi Stephie,
Next month will see the 5th anniversary of me being diagnosed with lobular. While I can’t say that thoughts of recurrence don’t enter my mind from time to time they do start to ease the further away you get from the experience. I no longer think every ache is recurrence but accept it’s likely just I am getting older .
The best piece of advice I was given and strongly believe is that our wonderful but cash-strapped NHS would not put us through the expensive treatments if they didn’t think we had a good chance of lots more years of life.
You are going through the worst bit now when your emotions are battered and it all seems overwhelming. But it does get better. Keep us posted with progress. Lots of lovely people here to support you.
Xx
Hi Stephie, nobody can ever guarantee you won’t get a recurrence. I had lobular cancer in 2008, and then unfortunately a recurrence last year and I had a mastectomy. There was no spread to my lymph nodes that side (I also had ductal cancer the other side with one lymph node affected, but that was just unfortunate). I have recovered really well from my mastectomy and my prosthesis is comfortable and nobody would know. I was even swimming in the sea within 3 weeks of my mastectomy last July! I am 67, and am now on letrozole for the foreseeable future, and I have had no problem with that at all. As far as anyone can possibly know, I am now cancer free and getting on with and enjoying life. Just want to reassure you that even a recurrence is not the end of the world, but hopefully that won’t happen to you. Being positive is really a good way to go! Trust all goes well for you. X
1 Like
Hi stephie82, sorry you find yourself here but glad you found us. Just wanted to say Hi It’s very daunting in the beginning but I can assure you there are many of us still here and doing well. I was stage 3 locally advanced including lymph nodes back in March 2017 and had chemo, surgery and radiotherapy. Now on Tamoxifen which gives me some minor side effects but I feel eating healthy, avoiding alcohol and exercising regularly have kept these to a minimum. I’ve had no recurrence despite being high risk. 
sending hugs. Xx