I have been told I have lobular cancer, invasive I think, oestrogen receptor positive, HER2 “middle” and so am waiting for the result of more testing on the tissue sample. I read that this type of breast cancer has a poorer prognosis and that cancers which are HER2 positive are faster growing and more likely to spread. I can’t see anything ahead of me other than cancer cancer and more cancer.
Hi Macky
Welcome to the Breast Cancer Care discussion forums, you’ve come to the right place for some good, honest support from the many informed users of this site.
While you are waiting for replies, I have put for you below links to some of BCC’s publications you might find helpful. Also our helpline team are just a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2 (Due to the Bank Holiday the helpline is closed this coming Monday)
www2.breastcancercare.org.uk/publications/benign-breast-conditions/lobular-neoplasia-bcc126
Take care,
Jo, Moderator
Hi Macky sorry to read about your new diagnosis and how terrified you sound having this news , believe me when I say that we are all here to support you through this and we all know exactly how you are feeling at this moment in time. I’m still waiting for my surgery on Tuesday so I’m very anxious about what’s to come , I was diagnosed over 2 weeks ago now with invasive ductal and every day since then has seemed endless, this site has been such a comfort to me and the ladies in here are so supportive ,and caring, . One thing that I’m sure you are feeling is that although you have friends and family who love you and are supportive you feel very alone and on this site you just can’t because we are all on this journey with you, some of us have moved ahead with our treatment plans, some like me just waiting for surgery and you are still shocked at your diagnosis and waiting for your results. The thing is , don’t read up on too much because what you have to remember is that bc is very curable these days and whatever type you have they have the right treatment to sort it out , we all need different types of treatments depending on our diagnosis but ultimately whatever treatment plan that you are going to be given will be the right one to get rid of this and beat it so you can move on with your life. So try and take each day one at a time and try and think positive , as the days progress and you have your plan you will feel better ,but use the site to help and support you because we are all here for you to help you through this ,sending you lots of love Jayne xx
Hi Macky welcome to out horrible litle club.
I know you feel devastated by your news, we all do, so we know how you feel, every cancer is different so until you know just what you are dealing with looking up loads of info just freaks you out. The stats you read are too general, as there are so many different factors to consider, when all the info is in and you have your treatment plan you will know exactly what you are dealing with. If you want to know the prognosis your doctors can feed all your details into their computer and give you the stats based on your individual circumstances.
it is a lonely journey, but we are all here for each other to answer questions, and offer support on the bad days. I know you can just see cancer just now but it’s not what it used to be. Yes nothing will every be the same, and you will grieve for your life before, but the treatment is very doable. And you will come in contact with some truly amazing people who only want to help you.
I was diagnosed at the end of Jan and have already finished my treatment apart from hormone therapy. You will get there with lots of help.
keep posting and take care.
Keeks
Hi Macky
I was diagnosed with invasive lobular breast cancer last June. I think the statistics for lobular that are out on the web are quite out of date and the prognosis is much better these days. My initial HER2 test came back inconclusive so they then did the FISH test and it came back clear. I was strongly ER+ though. Having a hormone responsive cancer is good because it means that there are more treatment options available.
Until you have a full pathology you will not know the full treatment plan. You may also have an MRI scan to check the rest of your breast and the other side.
It is very hard to get your head round and I spent a long time not really believing it and wanted to go back and ask ‘are you sure?’.
I went on to have the BRCA gene test because of a family history of bc. Then I had a wide local excision (lumpectomy) in September and radiotherapy in October. Now on Tamoxifen.
Do ask anything else as all the ladies here are so wonderfully helpful and knowledgeable.
Take care.
Mary
Hi Macky
So sorry about your diagnosis. The fear and terror can be overwhelming, but they do fade in time. I know, I too have invasive lobular cancer, it second time cancer for me. And I have a heart which is too weak for surgery at the moment, though I am on tablets to try and strengthen the heart. So I do understand fear and terror. We all go through that stage. When your treatment starts hopefully you will begin to get a bit of a handle on things. Try and give yourself little treats, even if it is watching rubbish telly and eating chocolate! All of us here are in the same boat, and there is a lot of help and understanding here.
Love
Alexa
Hello again, thank you all for the the replies, information and support, it does help to read of others in similar situations doesn’t it. I’m still waiting for the result of the MR scan and the second HER2 test, I’m desperate for the results. It’s 4 weeks today since the referral from my GP and I don’t yet have a plan or a date for surgery, things are moving so slowly which worries me greatly - all I can think about is wasted time and it having more time to reach the lymph nodes if it isn’t there already. The delays are excruciating. Macky
Hi macky,this waiting & not knowing what the plan is really is the hardest part I agree & remember it well! Its hard not to think the worst but like a few ladies have said - there are lots of different treatment for each type of cancer - they will tailor it to you. If it is her2+ there is herceptin that they will use that locks onto the her2. And you are already on the tamoxifen for the er+? I was DX end of Jan with grade 3 invasive ductal - 6xchemo,herceptin for 1 year,3wks of rads & tamoxifen for 5-10yrs is my treatment pplan. Hope they can give you all the info you need next time - it is so much easier to work through the treatment once you know exactly what’s happening! Good luck xx
Hello everyone,
I’ve had the result of the MR scan - this was clear other than the one mass we know about.
FISH test was negative and so it’s HER2 negative, ER and PR positive. Started Tamoxifen last week.
This news made me feel a little better, and I’ve even managed to do some food shopping today - treated myself to flowers also, I reckon I deserve it considering all this stress!
Thank you Jayne and Jo. My wobbles have just returned in the last hour I don’t know why! I’m going to give myself a good talking to! I just need to stay calm until I meet with the consultant next and find out what the plan is, what the options are etc. I am pleased with the reults given to me today 
xx
Hi Macky
you will read just as many posative stories on here as negative ones. More. If it didn’t show up on an MRI they wouldn’t have wasted money on one. There are rare cases in everything but it’s not going to help you to focus on one negative story. Lets face it. Any one of us could be hit by a bus tomorrow.
please don’t play the blame game. I think many of us do it. I had a hysterectomy 9 years ago and fought like hell to keep my ovaries. Changed doctors and hospitals to keep them and have tortured myself with that decision. I have even been told ‘what did I expect being a smoker’
Even super fit healthy people get breast cancer. Old , young, cancer just doesn’t care who it hits. You can ask ‘why me’ but I’m afraid the answer is just ‘why not’ .
I give myself permission to wobble but put a time limit on it. Say 15 min then give myself a shake. Pick myself up and carry on. You will find your own way, in your own time, once all the tests are in and you have your treatment plan things will get easier. You can start to plan, every cancer is different. You have already recieved some good results with your scan and blood tests.
I hope you get your next appointment soon.
take care
Keeks