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just been diagnosed lobular

12 REPLIES 12
Moijan
Member

Re: just been diagnosed lobular

 

 

Moijan
Member

Re: just been diagnosed lobular

Hi Jennie, glad to hear you are doing well!

Yes as the other ladies have discovered too, MRI is best for lobular. I was missed in 2000, and may have saved my breast had they found it then! But when I discovered my lump the next year, it still didnt show up on Mammos And it was 8x7 cms!

 

Lobular is a bit rarer than ductal bc, and apparently is more likely to return on the other side, so far mine has been clear tho. The oncs tend to lump us together with the ductals re treatment( tho Oestrogen pos/negs and Hertz pos/negs are further broken down).

 

Recently there was a very large conference in the USA looking purely at lobular cancer, which I think is a really good thing.


I include the link here in case any of you want to follow it up.

Hugs, Moijanxx

https://community.breastcancer.org/forum/71/topics/842736

 

 

jak60
Member

Re: just been diagnosed lobular

Hi,

I'm pleased to hear you are doing so well. I too have lobular and will get MRI results tomorrow. Did you consider TRAM if you needed a mastectomy?

Kind wishes,

J

jennieh21
Member

Re: just been diagnosed lobular

Hi, thank you all for your replies. I am sorry I didn't have notifications on for this post ! (I assume this is possible) MRI was clear so I've had my surgery - I was offered a therapeutic mammoplasty with a reduction and uplift on the 'good' side. This was 6 weeks ago and am now expecting to start rads and tamoxifen soon (although am still waiting for oncotype result).
It all seems like a speeding train at times and a little surreal but once the next stage of treatment starts, there will be an end in site.
Lobulars seem to be sneaky little things though!
Lots of love xx
Rj7777
Member

Re: just been diagnosed lobular

Hi Jennie mine did not show up on mammo or ultra and was only confirmed after two biopsies so it was a bit of a shock. It appears often stuff doesn't show on mammo which is worrying fortunately as I did have a lump (at 41 I'm too young for routine screening) thankfully it was pursued until they got a diagnosis. Hope this helps. Rebecca x
ann-m
Community Champion

Re: just been diagnosed lobular

hi jennie,
mri is usual for lobular, my initial biopsy showed a small area of lobular, therefore I had was referrred for an mri as this is better at detecting if there are any other areas of lobular bc, mine was clear, therefore treatment went ahead as planned. It is an anxious time, but the surgeon needs to confirm the treatment required. I'm fine now, btw.
ann x
VickiB7
Member

Re: just been diagnosed lobular

Hi Jennie, I hope you well after your lumpectomy. I have a similar story to you. I found a little lump that was checked on mammogram and ultrasound that turned out to be harmless. They did find a 9mm cancer elsewhere in my left breast. I only had my routine mammogram 9 months before and nothing showed up. I had a lumpectomy and 2 lymph nodes removed in Aug. Everything went well except there was cancer in one of the lymph nodes- but NOT from the tumour they removed. It was from a lobular cancer that was completely hidden and didn't show up on mammograms or ultrasound. I had a MRI that found it and because they knew where to find it they got it on the ultrasound to biopsy. I get it removed along a lymph node clearance on 22 November. Apparently it is very rare to have two different cancers in or breast. I am so grateful for the harmless little lump that found the first cancer that then found the hidden cancer. Vicki
Moijan
Member

Re: just been diagnosed lobular

Yes, do hope you have/had a great holidayxx I was diagnosed with lobular bc 16 years ago and mine didnt show on a mammo...it was 8x7 cms. I think they have become much more skilful at picking up and monitoring lob bc over the years...I recall having loads of ultrasounds during my early treatment. Now im told they can use mri's in a special way to see what lob bc is doing......I have currently have one every three months.

you are obviously in excellent hands.

 

love and best wishes,

 

Moijanxx

 

 

Lyndy Lou
Member

Re: just been diagnosed lobular

 
Mumoftwo
Member

Re: just been diagnosed lobular

I hope you manage to relax and enjoy your holiday. Michelle xx

jennieh21
Member

Re: just been diagnosed lobular

Thank you Michelle

I am still at that totally overwhelmed stage; thank you for your reassurance. I am sure that once I get MRI results and a confirmed plan in place it will be better. We go away on holiday Thursday so will enjoy that and then no doubt op will be scheduled for my return

xx

 

 

Mumoftwo
Member

Re: just been diagnosed lobular

Hi Jennie, I don't know how many people have other tumours found after an mri but I had one done due to my breasts being dense (my tumour didn't show up on a mammogram, was confirmed by ultrasound) and nothing else was found. I took it that it was done just to be sure there was nothing else there rather than because they thought there would be. I was diagnosed Feb 11th, had a lumpectomy then re-excision due to unclear margins, then 20 radiotherapy sessions (15 plus 5 boosters), no chemo. Radiotherapy finished in June and I've just come back from holiday in Italy with the events of the last few months just a memory now. Just to reassure you that things will be tough and seem overwhelming at first (I used to burst into tears at the drop of a hat in the early days) but once you start your treatment and feel more in control you will see the light at the end of this very dark tunnel.  My tumour was 20mm plus there was an area of dcis, grade 2, no lymph node involvement.  Good luck with your mri. Michelle xx

jennieh21
Member

just been diagnosed lobular

Hi

I'm so glad I ve found this forum!

I was recalled after a routine mammogram (luckily the schedule was messed up and it was only 15 months since my last one!) and following a biospy was told I have grade 2 lobular - it is tiny - only 10mm. However I have had to have an MRI of both breasts and should get the results tomorrow.

Does anyone have any experience of how common it is to have other occurrences 'hiding' that the MRI would pick up?

All being well (no receptor results yet), I will have lumpectomy followed by radiotherapy.

thank you

Jennie