Chemotherapy for lobular breast cancer

Hi,

I’m new to forums and am really wanting to meet and talk to other women who’re going through treatment for breast cancer.   I’ve recently had two ops and breast reconstruction.  Unfortunately I’ve had a surgical infection after my last op and am trying to heal as quickly as possible to move on to the next stage of treatment.   My tumour has been sent to California to see how aggressive it is and I should find out any day if I need to have chemo.

My diagnosis was for lobular breast cancer and I’m feeling confused as from what I’ve read chemotherapy is not very effective with lobular breast cancer and my consultant has agreed that this is the case.   I was wondering if anyone here knows any more about this?   Would chances of the breast cancer not recurring still be a little better if I have chemo?   I trust my consultant and believe that he would only suggest it if it was worth going through this but it does sound quite confusing.  

Hi Pippi0106,

Thank you for your post.

I am sorry you haven’t had any response yet. I am hoping my response will help our members to see your post and share their experience.

In the meantime, please remember that for any clinical questions our nurses are here and happy to talk things through.

I hope you will find the friendship and support you need.

Sending you our warmest wishes,

Zoe

Hi 

Sorry you are going through this and sending you positive thoughts. I was diagnosed with invasive lobular carcinoma in April and had a mastectomy in May. My tumour was 50mm and sent off for the oncotype Dx scoring to see whether chemotherapy would benefit me.   I had the results last week and i won’t benefit from chemotherapy.  I am having radiotherapy and a hormone drug. 

My understanding is that everyone is different and it depends on a number of factors such as ER and HER as to whether chemotherapy is beneficial. 

Good luck stay positive. 

I’m new to this forum but very interested to see your post. I was diagnosed with 5cm lobular breast cancer (ER positive, 1 positive lymph node) in March, had mastectomy in April and started chemo in May. 
I was offered a clinical trial which, had I been allocated to the ‘active’ group,  would have done tests on my cells to determine the benefit of chemo. I really wrestled with the decision to enter the trial and my consultant suggested that if I fell into the active group it was highly likely that i would be recommended not to have chemo. 

I find a lot of the stats relate more the ductal BC, so I think it is particularly hard to work out the treatment benefits for lobular. 

But for me personally I felt it important to take all the treatment possible. The standard recommendation ( I believe) is currently that people with my diagnosis receive chemo. The results of the clinical trial may show otherwise in time, but as I say, even it is only a marginal effect, I wanted to take it. I am 3 treatments in out of 6 and it’s been ok ( some tough days) and it’s not great to think that I may be going through this for no gain, but as I say, I think I might have regretted not having it! 

So in summary I think it’s a very personal decision as to what will be the right fit for you, and what will give you less worry overall. 

Also, have you watched the Victoria Derbyshire video diaries of her chemo etc treatment. I think she had lobular BC and I found the videos useful.  

Hi

Sorry to hear that you have breast cancer. I had mastectomy done in june. I’m grade 2 45mm  er8postive and pr8 Her2neg lymph nodes clear I had the Oncotype DX with a score of 12. 

Was told that tablets would give me more benifit and that I don’t need chemo. What was your grade and tumour size. 

Hi, Pippi, Inhave the same type. 

But decided to have chemo after ooncotype intermediste value…

let me know if you wan talk privately.

L

Hi

I was diagnosed with invasive lobular carcinoma in May this year 4.5cm. I was informed that chemo was not necessary but was advised at my age it would be beneficial. I was also told that it was not very effective at my type of cancer but would reduce it slightly.  I am so glad I did have it as after finishing my chemo I had an ultrasound and the mass can no longer be seen. They are amazed at how well I have responded to treatment. Anything that is left is microscopic. I am having a lumpectomy next week just to remove the tissue that is there and any remaining particles and then will have a week of radiotherapy.  If you have the chance of having chemo, I would say it is worth it. I wanted anything thrown at me so that I have the best chances of this not returning.