Invasive lobular cancer - anyone else had imaging issues?

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Hello

I have invasive lobular cancer - first biopsy was 30 June.

To date, I have had a few mammograms, ultrasounds, 2 biopsies and an MRI (without contrast.)

I was originally advised I would be having a lumpectomy.

I have been reading up on this type of cancer and am aware it advises Imaging remains a big problem for lobular tumors, both in the primary cancer setting as well as in the metastatic setting. It is clearly not picked up by traditional imaging approaches.

Due to the above, I now am having a mastectomy. This is because my cancer only appeared faintly on the ultrasound.

Has anyone else been in the same boat? Or are further down the road than me?

When I asked my consultant about my other breast, her response is we need you to notify us, it won’t likely be picked up on the imaging if I get the same type of cancer. I was shocked.

Would appreciate anyone to take the time to reply.

Thank you

pryderi over 3 years ago in reply to Sparkles133

Thank you Sparkles133. I was concerned about having chemo, as quite a lot of information online seemed to suggest that lobular BC doesn't respond well to chemo, and I thought that maybe I should get onto the hormone treatment ASAP (I'm ER and PR positive). My oncologist didn't really explain that, just said I was high risk (Stage 3) so chemo would be needed. I felt that, in that case, I had to try to make the BC cells more responsive to chemo, so I fast for 36 hours before and 24 hours after each infusion.

Thank you for the link. Have downloaded the MRI request letter. Will definitely push for those instead of mammograms.

Janemb over 3 years ago in reply to pryderi

Hi Pryderi

I had a mastectomy in November. I was diagnosed with Lobular in Oct after thinking I had pulled something in my right breast as presented disc like and elongated. After mamagram and ultra sound had biopsies which showed I had two tumours total of 7 cm.

I then had an MRI with contrast which showed lymph node involvement. Then had a biopsy on these I had 14 removed during surgery and found in 10.This is what also signals chemo as a single cell could have escaped and would get mopped up by this.

I had 6 chemo and 15 radiotherapy lost my hair but returning slowly.

I have my first mamagram on other breast next week and am speaking to onco nurse I did ask her about this not finding lobular and she said taking Letrozole makes your breast less dense but I am going to ask for ultra sound at the very least.

I guess it's all for saving money but not great for us is it . Take care and ask away any help I can be I will. Jane x

pryderi over 3 years ago in reply to Janemb

Thank you Janemb. I, too will have 6 chemo cycles (3xEC, 3xDocetaxel) and 15 sessions of radiotherapy. Now that I am on the chemo, I am glad. As you said, I want all those cancer cells mopped up, and with 8 nodes involved, it is quite likely that there's a load of them roaming round my body looking for somewhere to settle! I had the first doce last week and found it much tougher than the EC, but it's clearly doing a job. I imagine I will be put on letrozole as I know it supposed to be best for lobular. How are you finding it? Good to talk to someone in a similar situation.

Janemb over 3 years ago in reply to pryderi

Hi Pryderi

Thank you for reply. I was meant to have the same as you but after 1 dose of docetaxal I had to go back to FEC. as terrible side effects had ambulance out one night, couldn't walk with peripheral neuropathy which still jabs and lost skin on hands and feet with blisters on hands. I had rash all over my trunk and arms and excruciating bone pain in sternum. Oncologist said no more and had a 3/1/2 mix instead of 3/3. Hope you get better results from it. I then worried I hadn't had what I should but nurse said had my 6 so should be ok. I know some people stop it after a couple. I finished radiotherapy in June still getting stiffness in arm and across chest but massage and exercise helps. Good luck and keep in touch you will get there we are all going towards the same goals . The fear of return never goes but positive thinking helps big hug x

Carol2 over 3 years ago in reply to Janemb

i was diagnosed with suspected invasive lobular after a routine mammogram then ultrasound , still unclear. Went for MRI which they were unable to complete as I am a larger woman and machine was compressing my spine.
I had single mastectomy on Wednesday and doing well. Will not know if further treatment is needed until lymph node results are back.

I did ask for double mastectomy rather than live with the fear that the imaging may not pick this cancer up. Will continue to pursue this.

Sparkles133 over 3 years ago in reply to Carol2

Hello Carol,

We have similar stories.

I had a single mastectomy on 16 September. I have my results back and there were 2 cancer tumours - one had only been seen faintly on ultrasound, nothing seen on mammogram or MRI (without contrast as allergic.)

Fingers crossed for your results