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
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
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.
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.
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 ?
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.
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
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 .
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
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 !!
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
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.
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 !!!
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.
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
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 .
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