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Invasive Lobular diagnosis- waiting for further tests

45 REPLIES 45

Re: Invasive Lobular diagnosis- waiting for further tests

Hi Millie I have finally messaged you back! Sorry for the delay. Hope you're doing ok xx

Re: Invasive Lobular diagnosis- waiting for further tests

so glad you are pleased with results, i think im just dreading surgery not knowing what i'll wake up with etc.....i havnt really had the meeting yet to discuss so maybe that will help...3-4 week wait now for surgery.....everyday is horrid.......well done you..!

Re: Invasive Lobular diagnosis- waiting for further tests

Hi Millie - yes i had immediate silicone implant. I had the choice of that, the one where they take some of your tumny or the one where they take some from your back. I was an ideal candidate they said for silicone implant as i'm only a B cup - i must admit i'm really pleased with how it looks! Am getting a nipple tattooed on in the future i think.

Re: Invasive Lobular diagnosis- waiting for further tests

thankyou

Alex

Can i ask did you have reconstruction...im petrified....

Nixon have messaged you backxx

Re: Invasive Lobular diagnosis- waiting for further tests

Hi Millie I'm sorry to hear this. I go back next week to find out if it's the other side too. Part of me like you, just feels like I want them to get rid of both of them regardless as I don't want to go through this again! Naive maybe. I am ok today thanks. Yet felt awful yesterday. I imagine we will go through these ups and downs. I just want to know now! And yes let's do this together! We can and we will! We MUST! Thinking of you xxx

Re: Invasive Lobular diagnosis- waiting for further tests

Millie67 - you are the same age as me. I'm now 7 weeks post mastectomy and feel totally fine. I had an implant at same time as mastectomy. Also had other areas as i've said in a previous post but told makes no difference to outcome etc if you have other areas. Main thing it's all been cut off and mentally feel so much better and i'm sure you will too. The thought is so much worse. I felt a feeling of freedom if that's the right word after my surgery. Good luck you'll be fine x

Re: Invasive Lobular diagnosis- waiting for further tests

hi ladies

i was told after mri last week that more was found and possible on other side...they have said mastectomy that side, will confirm other side that looks suspicious and more biopsies on other side this thursday

i am petrified of mastectomy but will push for both sides. i am praying that they can do reconstruction straight away, the thought of being flat i just cant handle. i am 50 next month and still want to feel like i can wear nice things etc....people on here seem so brave .......i am really not.....they cant use my nipples ..

i just want to be risk free...this has all happened in 2 weeks and i am sat here at work a bit of a mess.

i was first told lumpectomy and no chemo etc just radiation, now saying mastectomy no chemo, for which im grateful BUT from what ive read that can easily change too

hoping you are ok NIXON , lets get through this together xxxxx

Re: Invasive Lobular diagnosis- waiting for further tests

Thanks Alex for the info. I'll definitely bear that in mind. I feel like I just want a mastectomy asap to just get this started. I am concerned that all the waiting is going To make the whole situation worse and it will spread. I know I need to trust the medical staff though. My kids are very anxious. Thanks for your reply x

Re: Invasive Lobular diagnosis- waiting for further tests

Nixon3 - after my MRI they called me back to have an ultrasound due to seeing more areas of cancer?? on the MRI. When she did the ultrasound she found about 6 areas and wanted to do a biopsy of one of them. I asked the radiologist if she thought they were malignant and she said yes as they had the same characteristics as the main lump. I really didn't want her to biopsy one then have to wait another 2 weeks to be told what she thought it was in the first place but she said they have to prove a mastectomy was needed. I dug my heels in and said i just want a mastectomy - spoke at length with the surgeon and he agreed based on the multifocal nature and that i wanted one - the pathology came back with 9 areas of malignancy so my choice was the correct one.

Re: Invasive Lobular diagnosis- waiting for further tests

Thanks x

Re: Invasive Lobular diagnosis- waiting for further tests

Hi nixons.  Yes that does make sense.  What I learnt was the MRI picks up teeny tiny images, so everything has to be biopsied, by using USS as a guide.  Xxx

Re: Invasive Lobular diagnosis- waiting for further tests

Thanks Patricia. Useful information- I've been told it's likely I'll have another ultrasound after to view again anything that is likely to come up on the MRI. Does this make sense to you? Then Further biopsies. Xx

Re: Invasive Lobular diagnosis- waiting for further tests

Thanks Debbie. Useful info. It's my next hurdle if that makes sense! X

Re: Invasive Lobular diagnosis- waiting for further tests

That's interesting about tomothesis Patriciamay, i shall look into that, thank you x

Re: Invasive Lobular diagnosis- waiting for further tests

Hi! Re MRI - I'm sooper-dooper claustrophobic and thought there was no way on earth that I would manage it, but there was no escaping it! Take some music with you - I took Taylor Swift(!) - and they'll give you headphones (which they speak to you through as well). I shut my eyes as I went in and didn't open them until I came out. I tried to keep thinking happy thoughts (not easy especially under circumstances!). I got through it. It's true that MRIs throw up false positives (I had stuff lighting up all over the place which all turned out to be ok - but needed 2 more MRIs as a result.) Still, it did its job, and while I can think of nicer ways to spend half an hour, I did it, and now think I'm an MRI Queen!  And if I can do it, anyone can! Best wishes. Debbie x

Re: Invasive Lobular diagnosis- waiting for further tests

P.s,

 

i should have said I was relieved I had the MRI in the end although I had Agonised over  it and said I didn't want it, it has given me peace of mind.  Xxx

Re: Invasive Lobular diagnosis- waiting for further tests

Hi. Just a comment about MRI and diagnostic imaging.  I had a: 2d mammo, USS, MRI, CT and a tomothesis scan. According to the clinical director I spoke to he said all of these scans look at tissue in different ways.  Long story why I had so many scans.  I didn't want an MRI as there is evidence that there is increased outcome of "false positives" .  Had to have one in the end,  as they wanted to compare all the images.  My understanding is the  top latest gadget is a tomothesis scan.  

 

Just wanting to pass on what I learnt, and to say if I was going to go private I would want to research what was the best imaging tool For me taking into account breast density etc.

Re: Invasive Lobular diagnosis- waiting for further tests

Don't worry about MRI .Once you get settled and inmy case eased your arthritic frame into a comfortable position it's just a series of bangs and rattles. For some reason I recited every hymn I could remember , and although it seemed a long time , I was helped off the machine and l treated myself to fish and chips on the way home. 

You will be ok , the staff know how to help.

Re: Invasive Lobular diagnosis- waiting for further tests

I'm slightly concerned with my lump, it feels huge and more of a hump. I know I need the MRI but in my mind, and seeing what other people have said I think I'll end up losing my breast. 

 

Im not looking forward to the mri either it's all a bit scary.

Re: Invasive Lobular diagnosis- waiting for further tests

Good, glad you've got some support Nixon 😁 xx

Re: Invasive Lobular diagnosis- waiting for further tests

Yes I  do although she's on holiday! However I spoke to a colleague who was lovely and very helpful. Yes this forum and website is a godsend! Thanks again x

Re: Invasive Lobular diagnosis- waiting for further tests

You are definitely not a wimp Nixon, don't worry, u sound just like I did a few months back. It's such a rubbish, scary time but keep posting on here, ask everything so you kind of know what to expect. Also, I found my breast care nurse a good 'go to person', do you have one? Xx

Re: Invasive Lobular diagnosis- waiting for further tests

Yes mrsorangecat I will definitely do that- I can't even have a facial with cotton wool on my face! God I'm such a wimp. How the hell am I going to have a mastectomy??!! That's good to hear that you improved beforehand though. Thanks for your advice x

Re: Invasive Lobular diagnosis- waiting for further tests

Sorry Alex but that made me LOL!thats the sort of thing I can imagine doing!!

Re: Invasive Lobular diagnosis- waiting for further tests

Hi Nixons3, if you are feeling frightened about the MRI due to claustrophobia you could always see if your GP would prescribe you with a Diazepam or similar to take the edge off. My kind GP gave me a few on diagnosis as i was a quivering wreck with anxiety and I asked if I could take one prior to MRI, she said yes, however, by the time MRI day came round I was a lot better, more informed and i didn't need it. Take care, it will be ok. If I can get through it, including the mastectomy afterwards, you can. You find your inner strength xxx

Re: Invasive Lobular diagnosis- waiting for further tests

Nixons3....... when i had my MRI they told me to close my eyes and imagine i was on a beach in the carribean.... so i closed my eyes and imagined i was actually underground lol! That's why i screamed get me out. When i went back in i kept my eyes open so could see the light at the end and it was so much easier. Everyone is different but i certainly found it worse with my eyes shut.

Re: Invasive Lobular diagnosis- waiting for further tests

So sorry to hear this Millie. Wishing you the very best. My Dr has told me it's highly likely it will be mastectomy for me too. Positive thoughts xxx

Re: Invasive Lobular diagnosis- waiting for further tests

I feel the same as you over70. Best of luck! X

Re: Invasive Lobular diagnosis- waiting for further tests

That's interesting mrsorangecat about the cost of MRI for your annual review. It seems as if the private route, if you can, may be the best way for peace of mind? Thanks for replying x

Re: Invasive Lobular diagnosis- waiting for further tests

I'm claustrophobic so dreading the MRI! I know that's the least of my worries at the moment though! Hope that it is working out for you Alex xx

Re: Invasive Lobular diagnosis- waiting for further tests

Just heard that I am back to hospital for results on Tuesday. Fingers crossed!

Re: Invasive Lobular diagnosis- waiting for further tests

Over70 - my MRI showed a couple of small cysts in my non-cancerous breast and it's fine x

Re: Invasive Lobular diagnosis- waiting for further tests

Millie67 - try not to worry - it will be the absolute best thing if they found more areas. I had 10 areas altogether, mastectomy and now pathology shows all removed and no further treatment needed.

Re: Invasive Lobular diagnosis- waiting for further tests

What a quick response! 

I have already been told that a mastectomy will be my best option. Just hoping nothing found in other breast as I have had problems with cysts in that one before. 

Just want action really, to solve whatever problems I have. Good luck.

Re: Invasive Lobular diagnosis- waiting for further tests

i had MRI wed and results yesterday.........showed more and have been told Mastectomy.............feel sick

Re: Invasive Lobular diagnosis- waiting for further tests

Alex, that made me smile. I felt like that too in the MRI scanner, it's the noise it makes. If you were anywhere else and heard that noise you'd run like hell to get out of there! It's like loud pacman noises in parts. I imagined I was walking along a nice beach to mentally get me out of there 😂 it didn't help that I thought I'd wet myself after they injected the contrast dye!!! (I hadn't, it just felt like it 😋

 

I agree, MRi's, despite being noisy are fantastic. I'm a lobular girl too and mine didn't show up on mammogram or ultrasound (which is often the case) and it was 7.5cm! It showed up on MRI so i was extremely grateful to have MRI on other boob to check that side to. I felt reassured when they found nothing on the right as by that time I'd lost confidence in mammograms and ultrasound. What i am upset about is that for annual reviews they won't do MRI and just offer just mammogram/ultrasound, i guess due to cost. I think i may pay privately to have an MRI done at annual review just for my own peace of mind.

Re: Invasive Lobular diagnosis- waiting for further tests

I had an MRI too (and did shout get me out get me out - how embarrassing lol) but glad i had one because they did find other small areas aswell as the original lump - resulted in a mastectomy and pleased to say pathology results showed all removed (all 9 areas of it) and lymph nodes clear. MDT discussed my results and i don't need any further treatment other than daily Tamoxifen. MRI is a great diagnostic tool and it definitely saved me having to have more surgery by finding everything first go.

Re: Invasive Lobular diagnosis- waiting for further tests

Thanks everyone. Seem to have posted twice by mistake.
Good weekend everyone. I will be patient

Re: Invasive Lobular diagnosis- waiting for further tests

Had my MRI yesterday.They were a bit vague about how or when I could expect the results. 

Can anyone tell me how long they waited? I expect it depends on where you live. I thought if I haven't heard by Wednesday I will phone BCN or am I being unreasonable?

Re: Invasive Lobular diagnosis- waiting for further tests

Hi there over70 and all.  Just to say with regard to MRI's the standard is for all images to be reviewed by 2 consultant radiologists, this can sometimes hold things up by a couple of days, so don't panic if results are a bit longer.  I had to wait two weeks for mine, as all diagnostics have to go to the MDT meeting for discussion too at my hospital.  Must admit was really tough waiting, but on reflection I'm now glad they were so thorough.  X

Re: Invasive Lobular diagnosis- waiting for further tests

Thanks everyone for your replies. Best of luck Over70.

I know you're right and I definitely want to be thoroughly checked I think I'm just concerned that somehow it has spread to other places and not only my breast. I just want someone to give me all the answers immediately which I realise is ridiculous as there is a process! Thanks again. X

Re: Invasive Lobular diagnosis- waiting for further tests

Hi Over70. If my memory serves me correct, I think my MRI was on a Wednesday and I saw my consultant again for results the following Monday. It still seemed like a long time. I don't think it's unreasonable of you to check in after a week if you've not heard anything.

 

Ruth

Re: Invasive Lobular diagnosis- waiting for further tests

Had my MRI yesterday.They were a bit vague about how or when I could expect the results. 

Can anyone tell me how long they waited? I expect it depends on where you live. I thought if I haven't heard by Wednesday I will phone BCN or am I being unreasonable?

Re: Invasive Lobular diagnosis- waiting for further tests

Hi Nixons. Like Ann says they are just being thorough and I would not read too much into the fact that they are doing an MRI - it's not to check for any spread outside of the breast. Of course, when I was going through it you could not have convinced me of that! I do know what you are going through.

 

I'm a lobular girl as well and they sent me for an MRI because they could not see my tumour on the mammogram although it was very palpable and easy to find via ultrasound. I'm glad they did because they found another couple of tiny specs close to the original tumor that were impossible to see. So glad they did as it possibly saved me another round of surgery later. They will also check the other breast too just to be safe - mine was clear. It's really reassuring to know they have done all the checks they possibly can.

 

I'm just over a year out of treatment and feeling fine. It's a rubbish time you are going through right now but you will do it and once your treatment plan is in place the time starts to fly. 

 

Keep us posted as to how you get on. This is a fab place for support and info and we have quite a few laughs here as well believe it or not.

 

Ruth xx

Re: Invasive Lobular diagnosis- waiting for further tests

Hi Nixons,

Although it does not help with the anxiety, an MRI scan is normally done for lobular bc, as it is less easy to see on mammo. 

I had a query about lobular & had an MRI, like you I was very anxious about it, but it is to complete the diagnosis, so that you get the best treatment plan. They are only being thorough. 

This stage of going through investigations & waiting for results is stressful, we've all been there, but it does get better.

ann x

 

 

Invasive Lobular diagnosis- waiting for further tests

Hello

Yesterday I returned to get the results of mybiopsy and I've been told it's Invasive Lobular cancer. The dr said that they need to do an MRI and further tests to get the full picture and to see if it's spread. I'm so scared that it will be in other places. I feel I can cope with breast cancer(somehow!) but I'm terrified it will be in other places. I'm 41 next week with 3 young children who I can't stop worrying about. Thanks for reading x