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Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

27 REPLIES 27
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Community Champion

Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Meemi,

First of all, welcome to the forum although sorry to hear you’re joining the club, so to speak. 

There are certainly many ladies here with a diagnosis of lobular bc, so you’re certainly not on your own, as you have seen.

The early days of diagnosis are difficult, we’ve all been there, so what you’re feeling is quite normal & as you say, it’s the waiting around that’s so difficult at this stage. It does get better when your treatment plan is in place. 

There’s loads of support here & do look at the ‘going through treatment’ board, especially the chemo threads, where you will be able to get support from others where you are now & further down the line.

ann x

 

 

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Roseberry

Just wondering how you are, your story sounds so much like mine. I have only just registered on the site today as I don't know anyone who has had lobular cancer. Like you I have an elderly parent (my dad), my mum passed away 5 months ago. I finally told him a few days before my mastectomy which was on 7th Dec.I am doing really well but again it,s all the waiting that gets to me. I have a meeting with the oncology team on 4th Jan to discuss my treatment plan which will be chemotherapy x 6 possibly starting end of January/ beginning of Feb. The worst part for me has been the anxiety, my gp prescribed propanalol but they made me feel worse so not taking anything at the moment. Let me know how you're getting on

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Well done !! Glad you have told your Mum and feel better -take it easy and let everyone look after you and spoil you .Jill.
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Told my mum last night which was such a relief. Glad I stuck to what I wanted to do. It was tough but doable.
I am writing from my hospital bed ... so pleased this bit is over
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Roseberry,my son was doing his exams when I was diagnosed so I kept him in the dark - it is very hard work keeping such a horrible secret and even harder pretending everything is ok to those closest to you .Christmas is the worst time to have to do this as it is a time when you can't just keep your head down ,you have to socialise with friends and family .You need to do what feels right for you in these circumstances and everyone is different in that respect .Sounds like you will feel better once you have told your Mum and she can give you a bit of moral support so your sister will just have to deal with it .
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Roseberry,
As ever, it’s you who are going through this & if you feel better telling your mum after Xmas, then do so. As you say, it would be hanging over you otherwise & you need to
concentrate on your recovery.
Also, how would your mum feel if she wasn’t told until later?
I told my elderly parents when I had seen the surgeon & knew all the details, of course it was a shock for them, but it was a relief to do so & they coped just fine. In fact my mother quite liked feeling like a ‘mum’ again & came with me to my radiotherapy appointments.
Do what You feel you need to.
ann x
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

The pretence thing, as described, is horrible. I started off thinking I didn’t want to tell anyone, but it is making me feel very lonely and isolated....as if I am the hole in a donut and the sugaryness of Christmas is all around me and I am the empty bit in the middle!

i had decided to tell my mum on the the day before surgery...the 26th...having let her have a lovely Christmas Day with me and my family on Christmas Day. The prep for this has been a welcome diversion.Received an email from my sister yesterday, suggesting I don’t tell her until after the surgery.

This has sent me into a spin....I am expecting I will be emotionally low post op, and don’t think I can cope with mums reaction when I feel vulnerable. Currently I feel relatively strong and healthy.

i can’t decide whether she , herself, can’t cope with mums distress and wishes it deferrred or what. It will be tough whenever. What do folks think? Very complex. I don’t want to divide the family at a time when I need calm.

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Yes it's a rather surreal experience ! Dealing with other people's reactions is a strange one .
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

I find as soon as I tell anyone and there havent been that many I am instantly reassuring them I will be fine. Its a strange thing, like I feel a sense of responsibilty to make them feel better!!

All of this is a very strange thing to deal with...

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

I told very few people Rosie and I found it very hard keeping up the pretence around people who didn't know exhausting .I also found telling people and their reactions very hard too .I was relieved when I got to the bottom of my " need to tell list " .It will get easier ,really not a great time of year to deal with this as everything is about celebrating and being happy - really not what you feel like joining in with or putting a dampener on other people festivities !!!
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Roseberry

I know exactly how you feel, telling people this time of year is crazy hard. Im trying really hard to tell my closest friends face to face which is how id want to hear if someone I knew wasnt well. Unfortunately I keep seeing them at social occasions and putting it off because I dont want to put a dampner on their festivities. The problem is the brave face thing is exhausting (in fact Im typing this in my office at work and getting really upset) keeping the big smile on is such hard work. I litterally get home and just want to shut all the doors and just sleep.

Its good you have got your Op date. It hard to know if thats daunting or positive, if you feel like me you just want the bloody cancer out and gone. My MRI is Monday and plan day next Friday!! 

Thinking about all you other ladies in the same boat and grateful to this forum and being able to say how I really feel xxx

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

First of, Welcome to the club Roseberry, even though we’d prefer not to join it!

Having this sort of thing around xmas always complicates it a bit & heightens feelings somewhat, but you seem clear about how you want to handle it.

You are so right about wanting to get the treatment plan, the early days of diagnosis are a shock & inevitably there is the limbo period when waiting to get the plan finalised. When it is, it does feel a lot better.

Do come back & chat whenever you want to, there’s loads of support here & if you want to, do go to the ‘going through treatment’ board when you start treatment. 

ann x

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Blimey, it was such a relief to read this thread. Had felt very alone before this. I was diagnosed with right sided lobular invasive cancer with some ductile carcinoma in situ at high grade on November 28th. I am also waiting for MRI results, and on the morning of the scan found a new lump in the other breast. I am having a mastectomy on December 27th - at the moment unilateral, but i am preparing myself that it may be bilateral if the second lump proves suspicious. 

The waiting seems interminable, and makes me feel like life’s pause button has been pressed and I’m finding it hard to focus.

Prior to diagnosis, I had invited all my family for Xmas dinner, and feel I can’t tell them ( though my children know) as it’s a sure fire way to put the damper on any festivities, so am trying to carry on as normal, and stick a jolly face on. 

I was planning to tell my mum on the 26th, so she only has 24 hrs before my surgery to fret. If I tell her now she will be very distressed. She is 85yrs and had breast cancer twice and a chest wall recurrence. She had bilateral mastectomies with a 10 yr interval. Hers was NOT lobular. 

Im sure this nightmare is worse because it’s christmas. I just want to get on with it and know the plan. 

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Jane

im so sorry to hear but glad you got the diagnosis at last...

so we are both Lobular!! What a strange word that is. 

Im having an MRI next week to confirm exactly where mine is and then likely Masectomy after Xmas. I’m going to go with the reconstruction straight away too. Have you had time to decide what type you will have, my surgeon gave me an actual text book on the subject...what jolly reading that made.

Do you know about chemo yet?

i will be thinking about you in between the recurring words that I can’t get out of my head which are “I’ve got cancer” it’s like a stuck record...lots of Love and keep me updated xxx

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Yes - it really helps to talk to people who have /are going through it too . Hard for anyone else to understand really .
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Thank you Jill, it is a good place, and the advice and hearing other people’s stories, it lifts that feeling of ‘ is It only ME that is going through this?”
Thank you again xx
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

It's totally normal to have those thoughts every little twinge you think " is that the cancer " - in reality it's very unusual for the cancer to have spread beyond the breast /lymphnodes when you are first diagnosed.Dont apologise for being down - this is a good place to "get it off your chest " forgive the pun !!
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Thank you Gill, it really is the waiting, I’m sure the Docs know what’s what and have assured me another week will not make any difference, in my mind , on down times, every ache and pain is this ‘ thing’ taking over my body, sorry to be 😩it just takes over your life 😭xx
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Jane , you really have had a long wait and had anxiety and uncertainty hanging over you for such a long time .Hopefully now something is actually happening you will start to feel a little bit better .It is normal to have tears /panic interspersed with feeling more positive ,gradually the good days outnumber the bad days.Good luck with your appointment tomorrow .
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi after 3 biopsies and 5weeks since the first, It was confirmed I had invasive lobular breast cancer, I am due to have a mastectomy next week and have decided to have reconstruction at the same time. Every day seems like a week, every week a year! Just want it over with now, has anyone else had so long to wait, it’s the panic that comes over you from nowhere, the tears the fear the unknown
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Rosie,

I'm on Tamoxifen and I've not had a period since I started taking it. I try to be philosophical about it as I was 51 at diagnosis so menopause was going to happen anyway. The hot flushes have been annoying at times but I'm used to them now and they are getting easier to cope with. 

Hope you are doing okay today.

Ruth xx

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Thank you ladies for your support it’s amazing how much it helps. 

I feel a bit stronger this morning, mind you I did take a Sominex last night and slept well. Thank you Peggy the protein thing makes sense in my head. I’m pre menopause so I presume the meds and treatment will kick me into menopause? I currently take the combined pill to help with peri menopause symptoms, I have to stop that now. Guess I’m about to put my poor husband through a whole heap of crazy!!! Xxx

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi, i take letrozole now as I was post menopausal after all the treatment, I was 51. I initially went with one lump but after the MRI it was found I had 2. The main thing is to look after yourself, I will be totally honest and I didn’t do anything different health wise but I know of a lot of ladies that do. You have to do what you feel is best for you. I didn’t have any reconstruction and recovered very quickly from the operation .. I was at a family party on the 27th Dec and felt fine ... I didn’t exactly party 😂 but I was there! Please ask any questions you like, even if you think they are silly or too private .. I honestly don’t mind. By the way, I was hospital phobic and needle phobic when I was first diagnosed and my anxiety went through the roof but I’m a lot calmer these days 😊
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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Rosie,

 

Sallyann is right and at this stage it seems like the tests are endless. Once you get your treatment plan you will start to feel more in control.

 

Lobular tumours don't always show up on mammograms which is why they are sending you for an MRI. That was certainly the case with me. They just want to be certain they know exactly where the tumour is located and the size before you have the surgery as this reduces the possibility of more surgery at a later date.

 

I was diagnosed in July 2015. Had a mastectomy and immediate implant reconstruction. I was terrified as I had never had surgery before but it was a whole lot easier to get over than I ever imagined. 

 

With regards to helping yourself, my BCN advised eating good quality protein likes eggs and fish in the run up and after surgery as this helps the body to repair itself. I had no problems recovering.

 

29 months after diagnosis I am back to normal and enjoy and value life more than I did before. You will too.

 

Stick around here as there are lots of lovely people who will give you support going through treatment.

 

Ruth xx

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Rosie

Sorry that you've found yourself here.....

My BC was the same as yours. I had lumpectomy, chemo and rads. Currently on letrozole. I finished my active treatment a year ago.

The worse part is the diagnosis and wondering what happens next. Once all the tests are done and you know your treatment plan, things will start to get easier. 

Please ask if you have any questions.

Best wishes

Sue xx

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Thank you so much Sally ann..your reply just made me cry...22 is plan day for me. We are so scared, I don’t need to tell you. It’s so nice to hear you’re back to life. If you don’t mind I just wondered are you on Tamoxifen? Is there anything I can do to help myself? Health wise I mean. Xxx

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Re: Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi Rosie, I was diagnosed with invasive lobular last October, had MRI scan, had mastectomy, chemo and rads. I know it’s frightening and like you, the words were all new to me. I am now through treatment (finished in July of this year) and back at work full time. Try not to be too scared, I understand it’s easy for me to say now as I was bloody petrified but you will get through this 😊 it will all seem as though everything is taking ages with tests etc but once the treatment starts you will begin to feel better that you are on the road to it all being over.. huge hugs to you .. I was on the countdown for my op in December last year .. 22nd Dec was op day for me xx
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Diagnosed this morning and it’s Lobular, invasive and hormone receptive!!!

Hi all

Even though I knew in my heart things weren’t good I don’t think that I truly really believed that I’d be joining this forum!!!

My tumour is Lobular (a new word I learnt today) it’s invasive (not liking that word) and hormone receptive. 

They haven’t been able to determine the size yet as I need and MRI. I had 1 lymph node biopsied which was clear but I’m guessing there are plenty of others!!!

The talk is of mastectomy. 

Can anyone share their Lobular stories with me so I might have some idea what to expect xxx