I have just been diagnosed with mixed invasive lobular and ductal breast cancer and would really appreciate any thoughts from anyone who has been through this. I am having an MRI scan on Thursday to find the extent of it all, and the not knowing is absolutely awful. Reading posts on this site, it seems that most people end up having a mastectomy. I am only just coming to terms with the diagnosis and at this stage, I am really hoping that I won’t need one. Has anyone with mixed bc just had the lump removed and not the breast? I immediately stopped HRT, 5 days ago, and am waiting for the fallout from this. My short-term memory is rubbish. Any help would be truly appreciated.
hi anne,
i have Grade 3 multifocal invasive ductal plus an area of dcis.My surgeon said i have to have mastectomy due to the multifocal bit of the diagnosis.hope this helps.sharonxxx
I was diagnosed sept 09 with grade2 mixed lobular/ductal invasive cancer with lymphovascular invasion,I am e+ pr+ and her2+++.had 6 x tch chemo, sentinel lymph node surgery then mastectomy followed by radiotherapy and now herceptin and tamoxifen.I was 40years old at dx with 3 kids,mastectomy was needed as tumour was 4cmx5cm and spreading. I to do not know anyone else with this and have no info on it.Mastectomy not as bad as I feared it gave me peace of mind.
Hi. My ultrasound showed a 1cm ductal tumour initially, but after WLE it turned out to be 1.8cm, half lobular and half ductal, Grade 1 lobular, Grade 2 ductal, highly O+. The lobular bit didn’t show up on ultrasound as it was ‘hidden’. I had quite a chunk of breast removed (and that boob was smaller than the other in the first place - typical!). I now have a lovely pink rubbery thing to make up the difference! Clearance was only 1m but not possible to take any more as too close to chest wall. Lymph nodes were clear. I do worry about any further lobular stuff not showing up on scans, although my consultant said tamoxifen/arimidex has side effect of making breasts less dense so tumours are easier to spot.
All the best to you. Whatever you had in your breast it’s gone now so try not to worry!
It’s good to know that not everyone ends up having a mastectomy. Originally, they thought it was just one type, but the core biopsy found the mix of two. They said it was grade two - I assume both types. I found out yesterday it is hormone receptive but don’t know about the HER yet. I had the MRI scan this morning and I shall ring tomorrow for the results. I can’t wait until the clinic next week, whatever the news.
Yes me. Mixed invasive ductal and lobular. Its good to know I am not out there on my own. I am just coming to terms with the diagnosis, and understanding what is and is about to happen to me so can’t really offer any experience yet. Surgery lumpectomy and sentinel node biopsy is booked for 9th September. I am taking it one step at a time. Meantime my husband is awaiting a heart bypass operation and we are hoping that our project management skills will see us through who has to face what when, and wondering how best to support each other. Any information on whether any of you have joined the sentinel node clinical trial would be really helpful. My good wishes to all of you who are dealing with diagnosis or treatment.
Just found out that they cannot give me the results of the MRI until next Thursday, instead of today, Friday. More waiting!. Surgery is booked for 15th September but we still don’t know what they are going to have to do. Agonising!
Last night, I was getting pains in my chest. Having had the pre-med check and being told I am fit, I am beginning to wonder if all the x-rays, tests, etc have had an effect and am now worrying about the anaesthetic. It is probably just the stress of the last couple days - or a reaction to the dye they injected for the MRI scan!
Upseydaisy - it is helpful to have found someone else going through the same. My very best wishes for your surgery.
Hi everyone, this is my first post. I was dx in May with invasive ductal cancer. Hade SNB and WLE in June. Found 24mm Grade 2 tumour, no lymph nodes affected, ER+ PR+ HER- but no clear margin. Back for another op in July, again no clear margin!! As I am a generously proportioned lady it was decided I could afford to have another op in August but unfortunately again no clear margin. They have now discovered lobular cancer and it is decided that a mx will be needed. I really am very glad as I don’t want to keep what is left but I wish that it had not taken so long to get to this point. Everytime I returned for results hoping to be told I could move on to the next stage, probably rads, I was knocked back a step. My final (I hope) op is 8th Sept and I hope that they will not find anything has now travelled to my lymph glands given the time lapse.
I have now had an MRI to check other side which was clear thank goodness but was no fun lying on my lumpectomy scar which has been opened 3 times (I also had a bleed after one op and had to go back to surgery the same day!!). I did suggest at one point that a zip might have been a better idea.
Well I hope you all have a better time of it than me - I seem to always be the troublesome one but I have not lost my sense of humour and am sure at Christmas I shall be looking back at this summer and having a good laugh.
I have mixed lobular and ductal multifocal with 5 tumors found. Due to the multifocal and the size of one lump 35mm i was told I had to have mastectomy and axilliary clearance. I am now look at chemo followed by radiothrapy but first I am having a MRI to other breast in case the mammo missed anything, Also as I had 8 of the lymph nodes involved I am having a bone and CT scan. Also having a heart scan due to one of the chemo drugs I am going to have to take.
All the best for tomorrow Ann, waitinng for those results is horrible. Everyone tells you to be positive and but you want to think the worst so you won’t be disappointed. Its a real emotional roller coaster and I think its the first time I have ever felt real fear.
We are all thinking of you.
I am having the Mri after surgury as they only knew about the large lump before, the four other smaller ones did not show up on Mamo. Having my Ct scan today.
This is not going as well as it could. The MRI scan showed up a further two small ‘lesions’ in the same breast, which they think are probably cancerous, but cannot be certain. I have the choice of going for a mastectomy or having ultrasound scans and biopsies on them to be sure. I have gone for the latter option. I really don’t want a mastectomy if I can avoid it. The doctor said there is the possibility they may do the mastectomy and find that the other two were not cancer after all. I may be postponing the inevitable but I would rather be sure.
Now, they say the original lump is about 2.2cm, although I was told it was only 1.4cm originally, The doctor said neither measurement is accurate and it is not that it has grown in two weeks. Great!
Has anyone had more than one lump removed at the same time without having a mastectomy?
I know so many of you have had mastectomies but I can’t help wondering whether in the future people will look back and be appalled that we had to have such drastic surgery. I am so fed up with this, and I am just at the start of the journey.
Sorry that the news was not good. You must do not feels right for you, don’t let anyone push you. For me I knew that a mastectomy was right, I just wanted to be sure of getting rid of everything. i was offered chemo first to shrink the tumor with the hope of not having the mastectomuy. The BC nurse could not understand why I just wanted the surgury. In the end my gut feeling was right - as I ended up wiht 5 lumps in various parts of the breast and would have had to have a mastectomy any way.
a mastectomy is drastic but for some of us the choice is have one or face an uncertain future I also had skin removed as it had spread into the skin.In my case I saw a gp 4 years before with a lump but was told at the age of35 its not cancer relax,I did and now for the past 12 months have been undergoing drastic lifesaving I hope treatment, my treatment has been more drastic because of this delay
. I get my low days and feel scared but I know everything is being done with my best interests at heart.I was very numb at the beginning of my journey and did not want to know anything about cancer,then I got angry now I am starting to accept what has happened and look towards the future. I still get really scared and cry.Just take it one step at a time. When you make any decisions about treatment/ops etc give yourself time to think don’t be swayed by anyone else its you that has to live with the final outcome .
Goodluck
Hi Ann
I totally agree with the last two comments. You must do what you feel is right for you. Each diagnosis is totally different, no two are alike. My consultant is all for breast conserving surgery hence my three ops. Unfortunately they kept finding smaller cancerous areas and that was why they couldn’t get a clear margin. My first appt with the consultant resulted in the fine needle aspiration and I was told my lump was very small, could not get the needle in very easily. The same went for the wire being put in before my first op but the actual measurement was for 24mm. I can honestly say I am glad to be having a mastectomy, after 3 attempts at a clear margin and now knowing the lobular cancer is there and I don’t know exactly how much at this stage, I just want to have the op as soon as possible. Before my last op I asked for a mastectomy and was told that it was only for those who really needed it and I didn’t. I am a G cup so there was plenty to work with!!
Jane
You have been through it. I imagine I would feel like you do if I had too, but at this stage I am trying to hang on to what I have - and I am not generously proportioned like you are.
My surgery has been put back to the 23rd, so that they can biopsy the other two lesions. Found out today the cells are HER2 2+, so need a special test (FISH) to find out for certain whether they are positive or negative.
Hope your surgery goes well on the 8th.
This site is so helpful. All you ladies are very supportive and it really helps to chat with people in a similar position.
Hi Ann,
My op is over and I am home. Could have come home yesterday but the ward I go onto post surgery is so good I always tell everyone I am going back to my hotel. I opted for another day of peace and quiet as I had my own room and en suite bathroom. No dogs or kids and a wonderful book to read!!! I have quite a long wound but only need paracetamol to keep me comfortable. It looks like I still have a cleavage!! Drain out tomorrow - my worst nightmare, I hate them.
How are you and any more thoughts on what you want to do?
All the very best to you,
Jane
I am so glad you are doing ok. How long were you in - 2 nights? Your hospital sounds wonderful. Was it private?
Do you need the district nurse to come in each day?
I am having the second biopsies today and the results next Thursday. Surgery the Wednesday after that - 23rd. This seems to go on and on. I am going to try and probe the doctor today, to see if he can give me an educated guess - so I am a bit nervous, to say the least. Thought I was ok yesterday but didn’t sleep well.
Just had a phone call from the hospital to ask if I would prefer to have the biopsies done on Monday morning, instead of today, because the doctor who was present at the MRI scan is not there today and although another one would attempt to find the lesions, he may not!
Of course, I said I would go on Monday, but having worked myself up for this, it would have been nice to have more than 2 hours’ notice. Didn’t they know he wouldn’t be there earlier in the week?