Frightened!

I had a WLE 2 weeks ago because I had abnormal cells but not breast cancer. This week my consultant informed me that pathology had found invasive lobular cancer and I would need a mastectomy. Today I had a MRI to see if it is in both breasts. I am so frightened of what the outcome will be. Any positive thoughts out there for me?

Hi,

I was you in November - dx with lobular. The tests are standard with lobular, not because it’s more aggressive but because it can be with you longer as it looks and feels more like breast tissue, so harder to notice. You might find that they give you a ct scan and a bone scan too, again normal for lobular. I had all of these and thankfully they were clear.

I’m sure (if you’re anything like me) youre in a total state and everything looks overwhelming and scary. This is natural and normal; waiting for results is the worst time.

On the plus side (!) once you do get your results and begin your treatment it will fly by and you’ll feel more in control. I’m recovering from my mx (mastectomy) and immediate reconstruction, having opted to have the chemi first (finished in April). It’s really fine. Obviously a sad thing to happen but fine.

Try not to second guess anything at the minute - it will drive you mad.
Don’t ‘google’ if you can help it - this will drive you mad too. If you need to use reputable sites such as Macmillan or cancer research

I could give you loads more info/advice - and will be more than happy to do so as needed. It WILL get better, I promise. Xx

Thank you so much for your advice. I really wish I hadn’t googled. I go from being totally calm and reasonable, to devastated and think there is no hope. I’m back to hospital on Friday for my nodes to be checked. My mom and sister both died from BC and even though I know that their cancers were different, it is so hard to be brave and positive. I hope your treatment is going well. Thank you again.

Hello Min,

Sending you big hugs during this horrible waiting time. I lost my mum and grandmother to BC and my aunt was diagnosed last year. I’m currently waiting for results to see if I carry the BRCA gene. It’s very difficult having watched loved ones go through it and realise what they went through and how devastating it can be.

However, there IS hope. Of course there is. Many breast cancers are treatable nowadays. I was only diagnosed 2 months ago and was a complete mess. I am now halfway through chemo and feeling much more positive as I have a plan of action and feel a bit more in control. Still have very wobbly moments! Which I think we are entitled to! But much, much better than at the beginning when waiting for results etc.

Once you get the scan results and know the full situation and the treatment plan things will seem better. At the moment it will be very overwhelming for you and everything is based on imagination and fears.

Sending big hugs.

x

lobular cancer is different from my tumor. I will only need rads and hormones. But no matter what sort of cancer we have we all go through the same agony and uncertainty in the weeks between knowing something is going wrong with our breasts and the diagnosis and treatment plan.

Its amazing that this thing quietly hiding in there and you did not know about it, and now here you are in the middle of tests and diagnosis and have no idea what is going to happen next.

People waiting for results go through so many different emotions, I dont think its personal choice, just some inbuilt fight or flight response. Some panic, some get angry,some hide under the covers and wait for it to go away, some go into a calm denail that there is a problem, and most of us rollercoast through the whole range.

But everybody here agrees, once you get the results and a treatment plan it is so much easier to handle. And now you have found this site you will have such good support. No matter how good freinds and family are, they are not around in the wee small hours when the gremlins set in.

Hi Min
So sorry to hear your story, we’ve all been there and can totally empathise. I too have lobular and was thoroughly investigated. Its a really crxp stage to be at and although I didnt believe it at the time when lots of people on here said it would get better, it does, once you know what you’re dealing with. Unfortinately the lobular thing can take a bit more investigating than other types - doesn’t mean its any worse. I was recommended a double mastectomy (with reconstruction) as I had it on both sides, but small. Was going down that road, but I had the sentinel node biopsy in between and had clear nodes, so decided the bilateral Mx was just a bit too drastic. But that’s just my way of thinking and not what most people would do.
But although lobular does ‘hide’ a bit, and can pop up in more than one place I think it is considered quite ‘treatable’, usually responds well to tamoxifen or aromatase inhibitors so it does have its up side.
I ended up having 2 WLE’s and radiotherapy, no chemo, and am back at work and doing just fine.
From a very personal position, I’m not convinced MRI’s are a great thing, as seems they show up a lot of false positives - which they did in my case and ended up with a right old runaround - a long story.
But try not to panic too much. I remember hearing all the terminology and feeling sheer panic because I knew nothing about BC. This is a great site and you;ll get lots of good support and advice.
Let us know how your tests results go.
S
X

hi min

i was diagnosed with same 29th june and went through everything you’ve been going through…

i was told i needed a mx to right breast, which i had done last week 2nd august…i also had immediate reconstruction too…i know this is going to sound really stupid but i gave my ‘lump’ a name (alfred) he was removed along with breast and lymph nodes and to be honest when i woke up i just felt as if i’d had a boob job! i’ve got a fantastic new boob and clevage is still the same…i did this for my own mental well being not for vanity, after exploring all the different avenues of prosthesis etc…if you want to chat drop me line and we can link up, good luck, god bless…

Hello Easybee, Thank you for your reply. I hope you are feeling well. Tomorrow I have to have my lymph nodes checked, so back to hosp again! I am so scared that it will be in there and I have the most awful backache. I keep telling myself that it is stress but…I’m supposed to see the plastic surgeon next week to arrange typr of reconstruction. Yours was so quick! Did you have much say about type of reconstruction?