Lobular breast cancer diagnosis

Hello Lena, I’m sorry to hear about your Lobular breast cancer diagnosis. It’s good that you’ll have the surgery soon, though. I understand your worries about the surgery and outcomes, as I felt the same when I was diagnosed with Lobular in May 2023. I had to have a mastectomy and luckily no lymph nodes were affected. Try to focus on getting over the surgery, and take it a day at a time. This initial period soon after a diagnosis is really difficult and we have all been there. Things will improve. After the surgery I felt better and it was a relief to know they had removed the nasty cells. Doing the exercises every day also helped  me get over the SNLB.
They’ll look after you in hospital. Try to keep busy in the meantime and do something you really enjoy. Let me know how things go

Hi. Sorry to hear about your diagnosis. I  had a lumpectomy in Feb 24 as I had lobular breast cancer. Those first few weeks are tough, but I felt really pleased to have had the op to and to know I was taking back control. Waiting for results is hard but once you have a treatment plan then it feels so much easier to handle.

We’re all different but I felt really well after about 3 weeks post-op. In fact I felt a bit of a fraud being off work. I had radiotherapy next and that wiped me out. But again not for long.

I've been back in work over a year now and it hasn’t all been easy and I’ve had to learn to pace myself. But it’s all been manageable.

my advice would be to give yourself time. Lean on your medical team and let them do the worrying- you just need to follow their advice and look after yourself. Also don’t google. I worried myself sick some nights through diagnosing myself.

Good luck with the surgery and whatever treatment comes afterwards. And remember, you’re sill you, this is a chapter in your life- not the whole book! Xx

Hi - thanks so much for your message. Glad to hear that your surgery went well for you and also lucky your lymph nodes were not affected.  You sound like you coped really well. I think you are right saying take it a day at a time, and I keep telling myself this! Thanks again for your positive message - it really helps!  X

Hi - thanks so much for your reply. It’s good you got over your surgery fairly quickly. Waiting for the results will definitely be hard. When I was first diagnosed I was googling everything and it was making me more anxious, so feel this is a safer place to share experiences. Thanks again for your encouraging message. x

Hi Lena  just wishing you well after your operation and hope you have a speedy recovery.  When is your follow up oncology appointment.  I had lobular breast cancer stage 3, grade 2 with lumpectomy and sentinel node biopsy in 2012.  This was followed by chemo and radiotherapy and then tamoxifen.  I didn't find the op too bad and just made sure I did the exercises that they gave me.  Good luck, let us know how you got on.

Lee x

Hi Leelaloo, Thank you for your message asking about how things are.  I had my operation late yesterday afternoon, and sounds similar to your op. I think it went well, but they talked to me about it just after I came round - so I was drifting in and out a bit and didn’t take much in!! I’m feeling good this morning though and no pain so far. I think the worst bit now is waiting for my follow up appointment on the 13th August. They did mention I may need further surgery, they did say I will definitely need radiotherapy  - but I will have to be brave and see what they say. It’s so encouraging hearing about how things went for you and hope you are staying well. Are you on the medication permanently and are there any problems taking it? 
Thanks again for taking time to see how I am. Will just look at my exercises now! 
lena x

Hi Lena,  glad you are not in too much pain.  I was on tamoxifen and then Anastrazole for five years after treatment.  Everything is doable and you just need to take one day at a time.  Someone said to me 'try and keep to your normal routine'  which I did.  Some days were better than others but listen to your body and do what you can when you can.  If you are tired just try and let your body rest.  It is a hard journey but you will do it.  You sound like a strong woman and you have all of us here to support you.  Good luck and speedy recovery x Big hugs.

Lee x

Hi Lee - Thank you for your encouraging message. I really needed it today as I’m not having a great day! My wounds are not giving me any pain fortunately, but last night  I read a copy of my consultants letter to my GP which stated I would most probably need chemo radiotherapy and hormone tablets. It was a bit of a shock as she initially didn’t mention chemo and just said I would need radiotherapy - so I’m feeling a bit in shock. I won’t know more until my follow up appointment though. It’s so hard - you want it all to be ok and be over and done with - but it’s obviously going to take a long time.  You sound like you have been through a lot too but have got through it well - so this has really helped me. Like you say - I must try and keep to my normal routine. Thanks again and will let you know how my follow up goes. Best wishes to you - Lena xx

Hi Lena

I'm in the same boat as you. I had a lumpectomy 26th June and reincision today to get clear margins. I have to have chemo too....I was told at the very outset due to my age, the grade and size of the tumor...so I have gotten used to the fact I'm.having it. 

I feel better knowing as much as possible about it...being armed with facts helps my OCD haha. 

I hope you don't have to have it...but if you do it's potentially saving your life and stopping in coming back. Loads of people on here have loads.of tips and good news stories too. It might  ot be as bad as we expect...we always tend to think worst case scenario and all the side effects. Xx

ACharge80 Thank you so much for your message and I’m sorry you will have to go through Chemo too. I think I’m just in shock, as the consultant initially only mentioned radiotherapy. I’m sure they are careful how much information they give you in one go so as not to get too upset!! I’ve seen that chemo will most probably be offered though, so at least I am prepared when I go to my next follow up appointment. Like you say, I must try to think of it as something to stop the cancer coming back, but it’s so hard. This site is great to come to though to hear other peoples experiences and not feel alone. It’s such an awful time. Good luck with your upcoming treatment and let me know how you are. xx