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Diagnosed yesterday [invasive lobular breast cancer]

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Sarah
I can reassure you from my experience post op is not too bad, I've taken my dressing off myself in the bath tonight(& I was terrified) but it was all fine!
Take each day as it comes, I've been a bit down today but keep reminding myself each hurdle is a little nearer getting rid of this disease.
You might need to lean on a few good friends post op but you'll probably find they're glad to finally be able to help in a practical way.
Stay strong Sarah & know that I'm thinking of you ( I too had a husband that left me after 16 years together and believe me there will be good times & memories to come)
A huge virtual hug
Xxxx😀

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi - glad those who have had op doing ok xxx I'm having a bad night - suddenly overwhelmed with it all - panicked about post op managing as by myself x feeling lonely and a bit lost - Thursday treatment plan day but feeling physically sick thinking about it - my 75 year old mum has decided to come with me and I know she means well but I am now worried about Her as well!!! - I'm sorry to be on a downer but know this is one of the few places I can ' be me ' and not be judged xxx sarah

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi All
Matty- I had nodes biopsy on 19th Nov mastectomy on 10th Dec. My consultant has joined the scars so I have only one. So far recovery going well, I only had a drain in for one day so home the next!😀
Keepmumsane- I have to wait for pathology on 5th Jan😁
Dee- glad chemo going well so far 😃
Sarah- thanks for the good wishes
As usual thinking of you all, take care & hugs to all
Xx😃

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi ladies,  also tucked up at home after sentinel nodes and mastectomy on friday.  Its much better once you start moving forward.  Once im healed I'll see the oncologist for the chemo plan.  

Pathology due 22nd. 

They walked me along the hall to theatre,  felt like the green mile! 

Not so bad though, home with drains for a couple of weeks,  but pain is minimal.

Xxx

Thinking of you all

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hiya all

Had the letter for post op checks tomorrow and Lymph nodes removed for testing on Tuesday.

Feel much better and more relaxed after a weekend away so am up for whatever now.

Mastectomy is after I have healed from lymph nodes

Does any one know how long that can be?

 

Just hope they are clear!

 

Matty

Re: Diagnosed yesterday [invasive lobular breast cancer]

You ladies have cheered me up everything you all have said I am going through also so feel normal ( well almost )
Just waiting for first chemo 22nd then on my way to getting rid of this thing once and for all
Keep posting ladies your all my inspiration and support
Love
Elaine

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Alison. So glad you are home and sound like you are doing well, Keep it up, x

 

I had my first FEC chemo on Wed 10th and it all went fine including the cold cap. As yet have had no side effects whatsoever so am just wondering when thay are going to start. It is like waiting for a bomb to go off. I know they can begin later but will keep on taking the anti sickness tabs and hope for the best.

 

Can't wait for surgery to come round to get this thing out of me.

 

Hugs to all xx

Dee

Re: Diagnosed yesterday [invasive lobular breast cancer]

Good oh Alison - home already - great.

Now just take care, no set backs allowed.Smiley Very Happy

 

The back of the letter today had a thing that I have to take in proof that I am resident UK citizen - as OH how come then I have an NHS number!

Any way off up norf tomorrow to visit 2 year old grand daughter - and her mummy and daddy.Her mum isn't to well, a baby  in January.

My one hope is that in between this, that and the other I will be able to visit the new baby.

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Alison - sooo happy that the op is out of the way for you and you are home already !!! You look after yourself on fhe road to recovery now !!! Well done!!!!! Lots of virtual hugs x sarah

Re: Diagnosed yesterday [invasive lobular breast cancer]

Evening ladies,
Glad to hear things moving forward for some of you, my MRI tip would be to take a CD! I have to admit I silently sobbed for the first 5 minutes as it dawned on me that the Cancer was real.
I'm safely tucked up indoors following mastectomy yesterday, don't feel half as bad as I thought I would and feel a great sense of relief that the mass is gone. I had drain taken out before I left hospital so other than some stiffness and discomfort am feeling pretty good.
Hugs to you all and good luck for those awaiting results,
Thinking of you all and sending hugs
😀xx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi matty and dee
Thx for support - MRI was thankfully ok - slight hiccup as when I was all set to go in the machine broke !!! I started giggling because this whole thing is surreal - I had to get off and they were rebooting the scanner but decided to take me round to another unit which looked a lot older but worked fine!!!! I actually feel a lot better now I've had the MRI - it's a long week for another wait but feel like at least they have a full picture now -
Matty - a relief to have the date and I know what u mean about emotions on the letters - I had a moment on the MRI letter and didn't expect to feel like that - was so overwhelmed by the letter I actually missed the fact there was a questionnaire attached!!! Felt a right numpty when I got there and they asked for it and I looked and was "oops missed that" - have had five other letters from the hospital and second page has always been about parking before!

Re: Diagnosed yesterday [invasive lobular breast cancer]

Finally have had a date - not for the big op - but for the Lymph nodes to be excised and tested.

So it's Monday morning for the post op tests, Monday Afternoon for the dye, and Tuesday afternoon for the op.

Was very emotional when I opened the letter, dread to think what I will be like when i have the date for the mastectomy. I thought I was doing well and coping as well

 

Jets my Lobular ancer was diagnosed in November as well, It seems nearly every week there is another test/appointment but also I move a further step towards a solution with every appointment and test.

 

In fact we are finding our way around the hospitals of the local NHS trust now. Don't need sat nav to get to them any more!!

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Jets. Sorry you have had to join but you will find lots of help here. I too have lobular cancer diagnosed in Nov. The MRI is nothing at all to worry about. You lie face down with a gown on and your boobs drop through 2 holes in the table. A dye is injected into your arm and they slide you into the machine wearing earplugs as quite noisy. IT takes 20 mins and is fine. Then comes another long wait of about 5 days for the result. That is the worst bit as you have already found out. Once you have a plan in place honestly you will feel much better.

Feel free to ask anything you like. Love and hugs Dee x

 

 

Re: Diagnosed yesterday [invasive lobular breast cancer]

MRI today - and a letter yesterday for an appointment (presumably to discuss results and care programme) next Thursday - Im starting to think my hospital schedule everything for Thursdays - next week will be my 5th week of waiting and third in the knowledge I do have cancer that needs treating. Occurs to me I dont know what to expect for MRI - do I need to get fully naked?! 😞
Christmas is approaching fast and I am really disorganised about it - planning to get a tree this Sunday with my girls to try to keep busy. But its double edged because this will be my first christmas without my husband - everything feels such a mess. I am unbelievably tired right now and know its the stress of waiting.
This forum is keeping me sane - thank you lovely ladies.

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Alison

Thanks for that. I hope all went well today.

was disappointed not to have a letter today so am ging to ring the BCnurse tomorrow to see what is going on.

It is this waiting that i really getting me down.

Had a bit of counselling today and the charity(Haven) offer 10 sessions - I have opted to have some counselling, some massage and some reflexology. Can choose as and when I have them.

Feel I now have somewhere to turn.

 

Cazz I spent the first couple of weeks crying but as the treatment plans etc have gone into place feel much better about it - just the waiting gets to me

 

Hope all goes well for you - have found help and strength from this forum, BUT only look at the bits that dirctly affect you 

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Cazz29 and welcome to the BCC forums
Along with the support and shared experiences you have here our helpliners are on hand with further practical and emotional support for you so please feel free to call. Lines are open 9-5 during the week and 10-2 Saturdays on 0808 800 6000

Here's a link to the BCC lobular breast cancer information and our support services where you will find lots of support ideas:

https://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/primary-breast-can...

https://www.breastcancercare.org.uk/breast-cancer-services

Take care
Lucy BCC

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi sarah, thank you.x
Hopefully the letter was just standard. Consultant did say i could opt for mastectomy without further biopsy if I didn't want further delay but there would be no point as it' "not what you need". I will ring the clinic again today where I had biopsies done to see if they have issued me with an appointment yet. They would have received the email from my Consultant as he was writing it when I was there last Thursday &, if urgent would have hoped they would have rung me with appt not written. Anyway at least I have the Tamoxifen so something is being done to treat me, for now. I hope your MRI goes well, stay positive! My sil is a nurse, who had bc herself at 35 years old, & she says it is remarkable how different positive-thinking people are when faced with any sort of illness in their diagnosis, treatment & recovery stages. The Mind is a very powerful thing, more so than most people realise. Good Luck, Cazz



Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi all
I'm up early to get breakfast before my trip to hospital!
Matty- when I was first diagnosed I was led to believe I could have immediate reconstruction, when I saw the plastic surgeon she suggested that I would get the best result if I used my one tissue and the problems with this and rads. I was devastated and spent the whole day in floods of tears BUT once I got my head round it all I know it's the right decision for me. I had clear nodes so infact at the moment I may not need chemo or rads, just mastectomy followed by hormone tablets. My tumour they think is quite large but have 3 different measurements from MRI, ultrasound and mammogram!
When you have all the results in front of you I'm sure your decision will be easier but wishing you well and sending a hug x
Sarah - thanks for the good wishes, I'm packed & ready to go! As always it's the waiting that's a pain not in until 1130😞 x
Cazz - even with lobular everyone is different, no two treatment plans seem the same! Hopefully you can question your consultant and get to the bottom of it, I'm thinking of you and wishing you well x
Dee - how's the chemo going? Hope all is well x
Keep strong ladies and don't let things get you too down, I shall be doing my damnedest to keep smiling today and will be thinking of you all and the battle we are fighting xxxx 😃💕

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Cazz - Cant help with you query but just wanted to say not to lose heart - I am waiting for an MRI tomorrow after diagnosis with lobular and am having a 'bad day' today following a restless night. Everyone says that the waiting is the hardest. I would be inclined to ring your breast nurse and find out when you might be getting the biopsy done - the letter might just be one of those hideous standard letters - try not to forget that it states mastectomy OR conserving surgery - your consultant has suggested that it will conserving and they are already treating with drugs to reduce the possibility of growth - this all sounds very positive. My consultant has told me I will need an operation but the MRI will define how much so I at your GP letter stage - I honestly dont know what I will do if they delay final treatment plan again - I understand how hard this feels. Sarah

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Alison
Just wanting to wish you well for the operation today - will be thinking of you.
Best wishes
Sarah

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi all, I have been diagnosed with a 5mm lobular cancer in my left breast, with another smaller one being benign. Following MRI I was due to be operated on this week but my Consultant says the scan showed another 2 areas that, although show on mammagram, weren't biopsied by the clinic. He wasn't happy with them & has asked for another biopsy to be done, but I am still waiting for an appointment. He assured me that they are very small & a mastectomy is not what I need, even if they are tested positive too. BUT yesterday I git a copy of his letter to my GP stating he needs the biopsy done to decide whether I need a mastectomy or conserving surgery!! All the way through I have been told how small the growth is, how removal could be done easily as lobular is easier to treat & that i may not even need radiotherapy, now I am possibly looking at major surgery. I can't understand how he can tell me one thing & my GP something else? I am on Tamoxifen already but am also worried how this extra delay will affect the cancer. Has anyone else had such a small growth & ended up having a mastectomy please? Was feeling good but reading some of these posts about lobular has made me worry more now.

Re: Diagnosed yesterday [invasive lobular breast cancer]

Thanks Linda and Sandie

I have decided to have the lymph nodes removed and tested first now and will base my decision on that.

 

It does put off the surgery for a bit (Christmas gets in the way!) but I have already begun hormone therapy.

 

Linda I found what you said very useful, I have found I am bombarded with info _ I suspect most are.

I dread waking up witout a boob so still think I will have the implant immediately, but would rather come out the other end with a clearer idea of the results.

 

Also I am finding people I talk to know some one who has had it but no one who actually has been through the process.

 

Once again thaks

 

Mattyx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Yikes matti, tough call, Im having my left breast removed on friday. My surgeon said he wanted me to wait until the treatments are all finished for a reconstruction.  His reasoning was reconstruction is a much bigger surgery and thus a longer healing time. He also said the reconstruction can be very delicate and the radiation, is no good for it.  

But as I havent been through any of it yet I can only go with what I've been told. 

Im looking at chemo as well, so I figure Im just going to get on with it. 

Hard choice, there are probably a few ladies on the surgical boards will know better.

What ever you choose will be right for you xxxx

Hugs

Sandie

 

Edit : and see a lady with actual experience posted at the same time. Thank you xxx 🙂 

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Matty, Hope you don't mind but I thought I'd share my experience of surgery and reconstruction not sure if it will help? I had mx and immediate implant reconstruction in March this year followed by chemo and rads. I was made aware that the implant could damage during rads but I went ahead anyway as I couldn't face waking up with only one breast and the thought of just not being me, even if I could only achieve this in my bra (I'm lob sided without it) . My oncologist changed the radiation therapy so I had it at a reduced rate, 25 sessions rather than 15 + boosters in the hope that it would lessen the likely hood of damage.So far so good , I finished about a month ago , it was slightly firmer to begin with but has since softened. I am aware that it could still change in time but if it does then it can be replaced. It's not an easy decision to make it is very personal to you ...not sure if I've helped any?
Alison , I hope your surgery goes well, I wish you a speedy recovery. Good luck to all you ladies having scans or receiving results this week...hugs Linda xxx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi - new member

Tried to get on forum at weekend as need a bit of input, internet wouldn't let me

 

I was diagnosed with lobuler cancer beginning of November. Found mine trying on a new swimming costume and found something wrong. It is the waiting - have this test - a week - have some results - a week.

Any way am already taking hormones Anastrozole(arimidex)

.

First they said nothing there - biopsy showed it was. Then MRI to find the size - very small 18mm - but a 'shadow' elsewhere on same breast. Another biopsy, results last Friday was positive again so have to have to have mastectomy. Probably not need chemo, probably not need radiotherapy - all depends on lymph glands.

That is where i need the input

I could have straight mastectomy, I could have immediate reconstruction but if lymph nodes show cancer will need radiotherapy that can effect scar tissue and the implant, could have lymph nodes removed and tested first.

Never have been good at making decisions

Consultant says he's willing to do reconstruction at same time if I want.

Because of Christmas holidays needed to know for sure today what I decide.

 

 opinions?

Matty

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Sarah
Just wanted to say hello, I was diagnosed on 6th November, having a left mastectomy on Wednesday. As everyone says the waiting is the worst part, once you have a plan it becomes a bit easier. Hoping your MRI goes well and please keep in touch.
Alison xx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Just a quick thanks for the very immediate support - Ive got my MRI date for next Thursday - like people say - its the constant waitig that has been so very stressful.  I managed to tell my lovely daughters & son and they have been fantastic.- I am kind of numb and slightly in denial at the moment. 

 

however, i do have a bit of a question on waiting times - I have to have the cancer operated on anyway - but they will be deciding whether this is a masectomy after Thursday - once the MRI results are known and the care planned for  - does anyone know if there are any guidelines on when the operation should take place?  I want the operation as soon as possible because I do know that time is of the essence here.  I just dont know whether it is likely to take place before Christmas or not....

My very best wishes to all of us that are going through this right now. 

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Jane, sorry you find yourself here but we will all try and answer your questions to the best of our knowledge. It is true that lobular breast cancer is harder to spot as it grows almost spider like rather than presenting as a lump. I found mine because my nipple started to point to the left slightly and my tumour ended up being 5cm ! I understand why you may want both breasts removed as lobular cancer can have a tendency to be bilateral..I have decided to have a second surgery to remove my right side following my first mx on the left now that I have finished treatment. You may find as I did that they like to do one at a time , this is because of recovery time and not compromising you in case of infection which could delay chemo if needed.
I have also read that 5 yr survival rates are slightly better for lobular patients but even out with ductal by the 10 yr maker, but as we all know this disease is unpredictable and these are just statistics. You mentioned about having a bilateral mx because you wouldn't have lymph nodes to mop up the cells? The node clearance would be on your dx cancer side only so the other side would still have nodes present.
As for chemo , I too read about it not being as effective but my oncologist wasn't aware of this. If you have positive lymph nodes then I would discuss it with your oncologist as it is likely to be offered and evidence of spread beyond the lymph nodes to other organs would be stage IV and therefore incurable...in my opinion throw everything at it before it gets that far, at least then you'll know you've done your best......hope I haven't rambled too much and been a little help to you ...sending you hugs ...Linda xx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Linda and everyone.

 

Struggling a bit at the moment.

 

I was Dxed with lobular at the beginning of November.... I had the surgery wle and node clearance with 3/15+. Am due to meet oncologist for first time this week.

I am very worried that the bc will come back in either breast.  When I was called back following my first mammogram the radiologist said that he was really pleased his team had caught it because it was so tiny. It wouldn't have been picked up at all twelve months earlier and really I should consider myself lucky that it had been spotted this time. 

Turned out at surgery it was 2 cm at its widest part ( globular don't grow round like others) and was already in my lymph nodes. No- one was quite so quick to tell me how lucky I was. 

 

Is it true that globular are more likely to come back? This, coupled with the fact they are so hard to spot, really makes me more determined to go for bilateral mx. Especially as my right breast would have no lymph nodes too filter any new cancer cells from leaking through.

 

I honestly feel I will never trust my breasts again.

 

Also, is it true that chemo is less likely to succeed with globular? Does that follow with any tiny bits that are floating about having got through the lymph? Are they globular breast cancer cells or just cancer cells?

 

I am really struggling with the idea of chemo, unless my scans show evidence of spread beyond the lymphs. It just seems counter-intuitive to me. 

 

All input very very welcome.

 

Love from Jane xx

 

 

 

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Sarah

 

I was diagnosed with Invasive Lobular Cancer on November 5th so not too long before you had your own diagnosis.  I had an MRI too before I got my treatment plan  and I found it was the waiting that was the hardest thing to deal with, then everything seems to move quite quickly.  You're dealing with so much at the moment, I think you're very brave and you're certainly not alone.

Sending a big hug, love L x

Re: Diagnosed yesterday [invasive lobular breast cancer]

Sarah, please don't feel alone. You'll find many shoulders to lean on here, I'm finished with active treatment now and starting the tamoxifen journey..its taken almost a year from me but the support on this forum has been invaluable.
If you have any questions please ask as I'm only to happy to help you and all the other lobular ladies on this thread if I can xxxxx Linda xxx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Sarah

Welcome to these forums. You have been through a tough few months but will get lots of help, support and friendship from the ladies here.

Whatever your question someone will help and whatever your mood people will understand.

Look forward to seeing your posts in the future.

Magpie x

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Sarah

 

Firstly, welcome to the forums, I am sure you will find it a great source of information and support. I'm sorry to read of your diagnosis, the first few days and weeks are always difficult when coming to terms with things and getting to grips with your treatment plans, etc.

 

As well as the support you will receive here you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

 

Also, do give the helpline a ring if you need any further support or information. They're on 0808 800 6000. Open 9-5 Monday to Friday and 10-2 Saturday.

 

Best wishes Sam, BCC Facilitator

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi - I'm new on here today - saw the thread name and thought that's me! Was diagnosed yesterday with invasive lobular breast cancer and have been told that need MRI before any treatment plan can be agreed etc - understand that this is normal with this type. I am in shock but have also been dealing with my husband leaving me at the start of November after 20 years of marriage - this was also out of the blue!!! The bizarre positive about the results yesterday was that it made me get his leaving me in perspective overnight! I thought it was the end of my world and it really wasn't! This is a real problem - I've glanced through the forum comments and wanted to wish people well whatever there stages. I feel very alone right now so have a feeling I am going to rely on this website x Sarah

Re: Diagnosed yesterday [invasive lobular breast cancer]

Just wanted to wish you all a good weekend, I've been up to london today to try & get into the Christmas spirit!! 🎄
I also visited a great shop for post surgery bra, lovely staff and now feel ready to face the 10th.
Am off to the clothes show tomorrow in Birmingham, trying to enjoy my last weekend with two breasts!!
Hugs to you all, keep 😃xx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi ladies

I have to keep reading your posts on this amazing site just to get the strength to cope with this lobular nightmare. Alison, I hope your results today went ok and thank you for your welcome to the club. I know so little as yet about my own cancer. Just the diagnosis on 12th November and breasts MRI with contrast on 25th, but I get that result on 3rd December. The more I read you all the more I learn about the detail of this horrendous thing. I had cysts in both breasts for years and thought this odd lumpy bit was just because the breasts were dropping! Then at the start of November it felt like a tomato although I couldn't make out the exact definition of it. So I'm still in shock and felt terrible over the weekend, when all the helplines seem to be closed. But you wonderful ladies are there, even at 4 am, and I don't feel so alone now. Thank you all so much for your posts and Deedee, you are in my thoughts. Love and hugs xxx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Great news Alison. So pleased for you. I am still waiting for the actual date of my first chemo session but have been out trying on wigs in readiness . They looked better than my normal hair !!

 

Hope all goes well on the 10th. I will be thinking of you.love and hugs Deex

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Dee
Well at last a bit of good news today as my nodes were clear! Hooray!
Mastectomy now booked for 10th December but have to wait till 5th Jan for results and decision re further treatment. Not sure if I will have chemo or not but hoping yours goes well this week. Keep on smiling, we have to put our faith in our consultants and trust that they know best. I know the waiting is the worst part and sending you a hug xx😄

Re: Diagnosed yesterday [invasive lobular breast cancer]

Thanks Alison

My cancer is too big 6cm to do surgery first so starting chemo this week too shrink it then mastectomy with recon after that. Had to go that way as surgeon feared some might still be left behind if he did mastectomy on Dec 4th as planned and then i would have needed more surgery. I am disappointed as wanted it out of my body as soon as posible.

Trying to keep positive. Hope all going well for you,

love and hugs Dee

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Dee, I have a couple of friends having chemo before mastectomy - the theory seems to be that they can monitor whether the chemo is working by checking whether the tumour shrinks.  I had my mastectomy first (no other option given) so now they have no way of knowing whether my chemo is actually killing any remaining cancer or not.  On the other hand....my tumour is already gone and the surgery is behind me which is a relief.  My limited google search suggested both ways have simular prognoses so I guess it doesn't matter too mcuh which way you go.  Good luck.

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi dee
Have posted in main thread but yes I just had breasts done in MRI
Please message me any other questions xx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi ladies,
Dee hope all is well with you, I get the results of my node biopsy on Monday & then hoping to get on with treatment asap!! Looks like reconstruction will have to wait 😞 so think will be mastectomy within the next two weeks.
Flower my heart goes out to you, it's such a crappy disease that we have no control of!!
Flossie, welcome to the lobular club, keep in touch and let us know how things are going.
Hugs to all, thinking of you xx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Flower, your right it is rubbish and my heart goes out to you and your family. I was diagnosed with lobular ,5cm, micromets in nodes,mx,chemo and rads which I ve just finished nearly a year on . I am having a sciatica type pain in my back which is being investigated next by mri..I am worried , even though all my previous scans where clear I know that lobular can lie undetected ...can I ask how your mets were discovered? Hope and hugs to all you lobular ladies xxxxx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Flower. I'm newly diagnosed, ILC, waiting for result of MRI done on 25th. I'm grateful for your post because everyone tells me how good outcomes are these days. I know otherwise and I feel bitter for you and your dear son. My little sister died of colon cancer at 38, leaving a 1yr old son and 3yr old daughter. Your story is shocking and I hear your anger. Someone has **bleep**ed up along the way, it seems to me. I hope you are getting

the very best of medical treatment as I still believe your luck could change. Please allow me to pray for you x

Re: Diagnosed yesterday [invasive lobular breast cancer]

it is rubbish. i am much further down the line. dont  know why i looked at this section tonight. i was diagnosed in jan2012 with ilc age 37 with a boy of 2.  half of one node positive. grade 2.  3.1cm. 7/8 er positive. all scan - ct, bone , ultrasound clear. great prognosis. i am now incurable with it in my leg, pelvis and spine. found out in april this year. i had chemo. mastectomy. tamoxifen and rads- the now 55 works. i think i am the unluckiest person. my boy is 5 and all i want from life is to see him to secondary school but i know i wont. enjoy life ladies. cancer is awful . unpredictable and relentless. x 

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Dee, just running out the door so will be brief but it may be to do with the location of the tumour and to ensure he gets clear margins. Hope this helps CC x

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi.just an update on my journey.Macmillan nurse came out today with results of my MRI which I had on Sat. Only one breast has cancer but the mass is much bigger than was thought so have to have a mastectomy instead of lumpectomy I was expecting.She also said consultant wants to talk to me tomorrow about having chemotherapy before surgery.I will go and talk to him but hope to still have my surgery on December 4th as originally planned. If the only reason for chemo first is to shrink the tumour and then have a lumpectomy I will say no thank you just take it all away now please. Can t think of any other reason he might want to do the chemotherapy first.Any suggestions would be appreciated.love and hugs Dee x

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Alison, did you have a full body into scan or just breasts.I had mine on Saturday and get results on Thursday. I had assumed it would be a full body to check if it had spread but was only on breasts. Wish it was time to find out if having just the lumpectomy or mastectomy. Macmillan nurse is coming out to me on Thursday with results. Hope you are ok.love and hugs to all on this journey.Dee xxx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi
Home safe & sound after node biopsy, wee a lovely blue colour and looking decidedly smurflike on my left breast!,
Dee, I don't think lumpectomy was ever an option it was always mastectomy. I too have picked up on the size often being larger on removal, not sure what that means for me xx

Re: Diagnosed yesterday [invasive lobular breast cancer]

Hi Alison. Pleased mri went according to plan. Were you planning a mastectomy or is it the size of the lump which is dictating this? It is planned for me to just have a lumpectomy,radiotherapy and hormone tablets for 5 years.

 

I hope you don t mind me asking. I have been told mine is only 1 cm but most mri results seem to come back larger than expected on reading most posts on lobular cancer. It does seem to be a bit of an unknown little blighter !!!

 

Keep on keeping positive

Love and hugs Dee