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Chemotherapy for lobular breast cancer

14 REPLIES 14
Lu_B
Member

Re: Chemotherapy for lobular breast cancer

Hi, Pippi, Inhave the same type. 

But decided to have chemo after ooncotype intermediste value...

let me know if you wan talk privately.

L

G2411
Member

Re: Chemotherapy for lobular breast cancer

Hi 

Did you get your test back from prosigna. Hope everything went well. 

G2411
Member

Re: Chemotherapy for lobular breast cancer

I had a mastectomy.  If you had the lump removed you will need radiotherapy and tablet's . 

Xx

If your are having the Oncotype Dx you will have to wait for results. 

G2411
Member

Re: Chemotherapy for lobular breast cancer

You can have the test with one lymph node it's the results of which tumour you have mine is er8postive and her2neg. It is free on nhs . Been told if you had to pay can cost between £2000-3099. Let me know how you go on. 

G2411
Member

Re: Chemotherapy for lobular breast cancer

The Oncotype Dx is free on nhs and will score you on age and results. Mine came in at 12 which is a low score ( 0-25). PREDICT  was 3%. People on sites say chemo doesn't have much effect on lobular carcinoma and works better on the ductal cancer. When I spoke to my consultant she said tablets would give me more benifit (Anastrozole) will have to take for 5 years also there is a bone tablet that protects your bones been told this is for 3 years. I asked what the Anastrozole would do and was told it clears anything that is left. She told me it dose the whole body. Let me know.  Just ask breastnurse /Consultant. 

G2411
Member

Re: Chemotherapy for lobular breast cancer

It is called the Oncotype  dx and it is free through NHS so I should imagined that if it's nhs you should be able to get it.  I will be on Anastrozole for 5 years. Which I was told will clear anything left . Let me know how you go. I have looked on other sites and alit of people have been getting this test. But speak to your consultant. 

louby_lou69
Member

Re: Chemotherapy for lobular breast cancer

Hi

I too have lobular breast cancer. Stage 2 55mm lump and triple positive.

Im having a lumpectomy on the 10th August and my dr wants me to start chemotherapy as soon as I'm healed. Im also going to be given Herceptin injections during this time because of the HER2.

I'll also have radiotherapy too at some point later on. She did tell me that lobular cancer isn't as responsive to chemo as ductal. I'm just presuming that the chemo will 'mop up' anything else that's left. 

I will ask her about the chemo test that's sent off though. Does every trust use this test? 

Lou x

basilsmum
Member

Re: Chemotherapy for lobular breast cancer

Hi G2411 

my situation is almost the same - grade 2, 45mm tumour, er/p positive and her2neg, nothing in the lymph nodes. I am still waiting for the prosigna result - was due yesterday but hadn’t arrived. I’ll let you know what they say! I do understand it is very personal and relates to the exact nature of the cancer we have. I have been told that the hormone treatment is the most effective and I’ll be getting that once the other treatment is sorted. Did your consult use the ‘predict’ tool?

G2411
Member

Re: Chemotherapy for lobular breast cancer

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. 

 

gardengirl200
Member

Re: Chemotherapy for lobular breast cancer

That is good news that your test results meant you could avoid chemotherapy. I wasn’t offered any such test, only the option of going on the clinical trial. I think perhaps I didn’t qualify for the test because I had one lymph positive. Good luck with the rest of your treatment. 

Pippi0106
Member

Re: Chemotherapy for lobular breast cancer

Hi gardengirl,

Thank you for your post and I'm glad to hear that the chemo has been ok so far, I hope the last few sessions go equally smoothly.   I had my test results back and they said that I won't benefit from chemo at the moment but need radiotherapy and hormone tablets.  I wasn't given the choice but just received my results with an answer phone message - I think if I had been told that the chemo would have given me increased chances of it not returning (how ever small the improvement) I would have definitely had it but am relieved that it is one less thing to have to go through at the moment as had envisioned that it would be awful and that I would feel ill all the time.  I haven't had any details of the next treatment yet and am just hoping that my surgical infection will heal in time to start the radiotherapy.   

Thank you for letting me know about the Victoria Derbyshire diaries, I had no idea that she had had breast cancer.  I know that so many people have this diagnosis but am finding it quite isolating and so good to be able to share experiences.

I wish you all the best with the rest of your treatment.

 

 

gardengirl200
Member

Re: Chemotherapy for lobular breast cancer

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.  

kc58
Member

Re: Chemotherapy for lobular breast cancer

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. 

ZoeK_BCN
Community Manager

Re: Chemotherapy for lobular breast cancer

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

Pippi0106
Member

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.