Invasive lobular breast cancer

Hello Sue,  I can certainly understand your concerns.  I read this article as I don’t know that much about lobular BC other than it is sneaky and hard to detect.  The article is excellent and from MD Anderson which is one of the top notch cancer hospitals in the US.  Hope it is helpful.

www.google.com/url

Mmmmmmm just read it

don't really understand why oncotype testing isn’t useful for lobular?? How depressing. Something to ask the oncologist about this week definitely! 

I was reading an article about CEM contrast enhanced mamagram and it can detect lobular. My breast nurse told me yesterday that the hospital does do these, so going persue getting one rather than a MRI

densebreast-info.org/.../

Tomosytesis mamogram, that's the one I had too, as well as the normal one and the lobular didn't show on either.

I'm getting more and more stressed about what might be lurking in the rest of my bad boob and in the other one.

Have a look at the link on my previous comment about CEM, as our hospital does them I'm going to push for one rather than the MRI

Sue x

Saw my oncologist and a dietician - I’ll share a few things incase interesting…..

 they are going to do mammogram and an mri as annual follow up as they recognise that mammogram (both types normal and tox) don’t show lobular cancer

I did say I was worried that there could still be cancer there but he said with margins now clear I shouldn’t waste my time worrying about that

im going to have 3 weeks of radiotherapy not 1 as they want to do the whole area. As 1 of 4 nodes they took out are involved 

  I didn’t realise but there are some nodes before your sentinel nodes so he wants to zap the collarbone area to make sure nothings lurking there

there is a risk of lymphoedema with radio on axial but I think I’m prepared to take the risk 

he said exercise really important before throughout and after treatment if possible

Supplements not necessary except maybe calcium and vit d

alcohol in moderation (although dietician told me absolutely NO!)

sugar totally overly demonised. Just keep your bmi sensible

Keep up protein - for restore and repair function

2l liquid daily (avoid caffeine) 

the big help yourself things are healthy bmi, no smoking, no heavy drinking, positive attitude 

dexa scan - pointless as I’m going to be on the bone strengthening infusions anyway. He said it’s possible my bones would actually be stronger than normal assuming I stick at the infusions 

Ct scan - he said anyone in a Ct scan will find stuff to worry about as we are probably all full of cysts and blobs. Keep an eye out for any pains that get worse and last more than 2 weeks

oh and the oncotype is useful for lobular because it’s completely personalised it’s taken from your tumour and your genes

Predict new version - is ok - but he’d only look at the first number and not the added benefit of the treatments as he thinks it slightly under plays those. I think that’s what he meant!

That’s about it!

I had lobular and oncotype . I think they ask on the form completed and  submitted what type of breast cancer …

Thanks this is really useful. 

I've got my consultation and planning session next week then due to start 3 weeks Radiotherapy on the 15th... 12 weeks after my lumpectomy.

I didn't know about those additional nodes either so can expect something similar and know what to ask now.

When does yours start? 

Hi ange66! We really are on the same track! I think probably 1 or 2nd week September??

how you doing?

I just started letrozole - very early days! Weirdly out of nowhere seem to have a very light period. Pretty weird for someone who’s meant to be post menopausal!

Hello, I have been diagnosed with exactly the same breat cancer. Invasive lobular,  her2 neg and hormone positive. This was in December 2023.

I had surgery in February. Lumpectomy. It was a central wide opening lumpectomy. I also lost my areola ans nipple, but I can have a tattoo later on if I want to.

The operation was successful, tumor removed fully with clear margins,  but one of 2 lymph nodes had cancer cells, so I was advised to have adjuvant chemotherapy. The standard treatment, which is 3 EC and 3 Docetaxel cycles, every 3 weeks. Although, the EC is only used when there are no heart problems, I think.

I have now had 5 out of 6 cycles of chemo. I will be done on Friday 

I will have radiotherapy, and hormone blockers, and any reconstructive surgery I might want, but I am glad I am nearly done with chemo.

The surgery was not too bad. It can get a bit itchy when it is healing, but it is OK.

I hope your surgery goes well amd that you won't ned chemo. Fingers crossed.

All the best,

M xx