Diagnosed yesterday [invasive lobular breast cancer]

[maggie59]

Good news Alison re the MRI. Fingers crossed for nodes.
Glad to hear you sounding positive, just think ladies instead of being on the recently diagnosed forum we should now be on the Treatment board!
Mx

[Alison_46]

Hi Ladies,
Happily my MRI showed it was only in the left breast, hooray!!
Mass is large though (45mm) so having lymph node samples taken tomorrow then plan is to have mastectomy and reconstruction together. Am seeing the plastic surgeon on Friday.
Looks like treatment will be surgery followed by radiotherapy then hormone tablets. Not sure if I will have chemo think that depends on lymph node results and pathology of the breast after removal.
So for now a few things in place, some days I can forget for a bit and on others it's there in my mind ALL the time.
I agree though when you have a plan it feels more manageable. I really have found it reassuring and helpful reading posts here and thank you all for caring.
Love and hugs to all
Alison xx

[deedee540]

Hi Alison.Hope your mri results were as you expected and no worse. I seem to be a week behind you as my mri is on Saturday.Hope i get the results back quickly and can then get on with the treatment plan

I am feeling very calm and normal at the moment but feel that i should nt be feeling that way.Does that make sense to anyone. It felt after all the weeks of not knowing and worrying that when i did get the diagnosis i felt better !!!!

Please let me know how you got on today and what your next step is

Love and hugs to all

Dee

[Annie25]

Good luck all you brave girls out there. Surprising to me how quickly one adjusts and moves on. Only a couple of weeks since my totally unexpected diagnosis but this weekend I pruned my wardrobe of skimpy bras / strappy tops pre my mastectomy this week. This forum helps enormously in feeling supported and informed- many thanks everyone.

[deedee540]

Hi and thank you for your replies.Unfortunately I tried to correct a spelling mistake and deleted my whole post.It said basically I was diagnosed on Friday November 14th 2014 with invasive lobular breast cancer and like Alison am waiting for an MIR scan then lump removal,radiotherapy and hormone tablets.Love and hugs to all x

[Alison_46]

Just wanted to say a big thank you lovely ladies, such touching words that mean so much from people who truly understand.
Marks & Spencer dinner on its way and a walnut whip for later! I know how to have a wild time! Lol
x

[maggie59]

Hi Alison
God luck with the treatment plan tomorrow.
So many of us in the same boat. I was looking through some of the threads of people starting treatments at the same time and I was moved by how supportive they are to each other and how firm and lasting friendships are formed through their journey together.
Hug from me too.
Mx

[Katherine62]

I'm sorry you're having a bad day. Remember how many people love you, and remember how knowledgable dedicated and committed your hosp team is to getting you well again. None of us can do this without our bad days but there WILL be brighter days ahead for all of us. I felt much calmer last night, even slept better for no good reason, it just happened.

Take courage my dear. We all understand.

big hug

jane XXX

[Weeannie1]

Hi Alison,

I'm so sorry that you're having a bad day. I can vividly remember being where you are now, bouncing between "I'm going to kick its butt" one minute to thinking I wouldn't make the end of the week the next. It's all very normal to think like that and you should not give yourself a hard time over it. Just go with what you're body tells you to do, and be selfish! Us ladies seem to worry more about others than we do ourselves, so please put yourself first for a while. Although these emotions don't disappear entirely, they do subside and you will settle into a new type of normality. It's almost a year to the day since I was diagnosed, and I can honestly say that cancer is not on my mind all the time as it was on diagnosis. I hope this is of some comfort to you and I wish you all the best for your forthcoming treatment. Sending big hugs. Ann x x x

[Alison_46]

Hi, I had my diagnosis confirmed last week, same as you invasive lobular. Had my mri last week and results & treatment plan tomorrow. Having a bad day today, feeling very emotional😥
Sending a virtual hug to all, one day at a time
X

[Weeannie1]

Hi deedee,

I was diagnosed with ILC last November. Lump showed up as 15mm on MRI, but was 37mm when removed. I had no node involvement, but still chose to undergo chemo and then finally 19 sessions of rads. I have also decided to go down the elective bilateral mastectomy route. ILC doesn't always show up on mammogram so I've decided that is the best choice for me. I coped really well with all my treatments and managed to work all through my chemo and rads, although I only work part time and I did have a reduced chemo regime (FEC75).
If I had my time over again, the only thing I would change would be I would choose mastectomy over lumpectomy at time of diagnosis. Bur, I continue to do well so really can't have any complaints.

I hope this info is of some use to you. Be kind to yourself over the coming weeks, and I wish you all the best for your coming treatment. Ann x x x

[deedee540]

Hi.I have just been diagnosed with invasive lobular breast cancer the same as you.it is small and in early stages.Waiting fr MIR next Saturday then operation on December 4th followed by radiotherapy and then 5 years of hormone tablets.just wondering how you are doing now and what treatment was like.any info would be appreciated.Dee xx

[Tracy1967]

Hi Rose, mine was classed as early stage breast cancer . I'm doing really well thank you , I'm so glad chemo is now a thing of the past for me. If there's anything I can help you with your welcome to send me a direct message.

Good luck with your MRI

Stay positive
Tracy XXX

[rose38]

Hi tracey , thanks so much for replying so quickly.

  sorry to hear you have it too but very greatful for all your advice . I understand a little more now . as im at  start of all this im not being told too much as will no more after MRI .[if is anywhere else]   dr has said surgery will be first thing,as have large lump under arm pit think they will take that out and maybe nodes too. i will just take a day at a time and take dr advice . hopefully your doing ok in your treatment now? can i ask was yours detected early? as mine has been there  a really long time ! so im convinced i have it somewhere else too, though trying not to dwell on that as il find out soon enough hopefullly .   dont know what id do without this great site and all you wonderful ladies.

   Thanks again for your support tracey.  best wishes .rose. xxx

[Tracy1967]

Hi Rose, I was diagnosed with invasive lobular cancer back in September 2013 and can advise you that ILC is much more common now than it was 10 years ago. The thing with lobular is that it's harder to detect than ductual as lobular presents more as a thickening than a lump and tends to grow flat like a spiders web. My cancer didn't show up on a mammogram or ultrasound until I persevered with the ultrasound lady and we managed to find the lump eventually once I guided her. My lump / thickening showed up as 14mm on both ultrasound and MRI but was actually 50mm multifocal at pathology after op. I requested a bilateral mastectomy with immediate implant and strattice reconstruction which was the best decision for me (especially after seeing my pathology results). I had a sentinel node biopsy ( 4 nodes removed) and they found micromets (small amount of cancer cells) in my 1st node but the other 3 were clear so I've just finished chemo (as a preventative / mop up job) and start radiotherapy hopefully some time near the end of April. I then have approx 10 years of tamoxifen as my ILC was 8/8 er+ (Estrogen positive) which is common with ILC. Also I was advised by my consultant that ILC is often grade 2 and doesn't usually change at pathology result.

Trust me when I say the diagnosis and waiting for pathology is the worst part. Once you have your treatment plan you're able to concentrate and deal with each section 1 at a time. Please note your treatment may vary from mine and really only your consultant / surgeon and oncologist will know what path is best for you.

One thing I will say is no one wants chemo but remember this is not the enemy, it's your alloy in fighting this terrible disease and will help you win your war if needed.

Wishing you good luck with your treatment. Stay positive, you will get through this horrible blip in your long life.

[poemsgalore]

Hi Rose, I posted a reply to your post in another thread. poemsgalore xx

[Lucy_BCC]

Hi Rose
Whilst you await replies here please feel,free to call our helpliners with your queries and concerns on 0808 800 6000, lines are open until 5pm (weekdays 9-5 and Sat 10-2)

Here's a link to information about invasive lobular breast cancer which may help along with further support ideas which you may wish to access:

http://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/primary-breast-canc...

Take care
Lucy BCC

[rose38]

Hi ladies ,got results yesterday ,i dont no that much at moment just im having mri scan next week wed and bk to clinic thur. Dr said will need surgery remove lump and maybe some nodes ,should have asked grade or stage ,but didnt he mentioned having hormone treatment if findings arent that bad but unsure about anything else till mri results. Am aware that this type is a little  than other uncommon than other bc ,can anyone with same cancer  ,fill me in onpossible treatment or experiances ,my bc nurse isnt in today so cannot ring her.

  thanks in advance.    rose38 xx