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Treatment for triple negative invasive lobular breast cancer

23 May 2022 09:25

Please can you let me know what treatments are available for triple negative invasive lobular cancer.  I have a 5 mm area found by chance on reexicsion of dcis identified on mammo by calcifications. This was an unexpected finding with. Nothing seen on mammo or ultrasound.  There are no clear margins.  There seems little standard treatment and very few trials world wide it i would appreciate feedback from you on this. Had breast mri Friday and surgeon appt tom.  Am terrified.  Can't sleep can't eat and can't think.  Tried every meditation and mindfulness appt going. Every ache is a met. 

Treatment for triple negative invasive lobular breast cancer

23 May 2022 15:58 in response to Flossyn

Hello and thanks for your post,

I am sorry to hear about your situation. I can understand that it must have been a complete shock and not what you were expecting at all.

You ask about treatment for triple negative cancer. We have some information on our website on how triple negative breast cancer is normally treated which you can see here

We do have a database that lists trials that we are aware of and have permission to put on our website but we are not involved in the recruitment of patients in to trials. Have a look at the trials here

If trials is something that you would like to consider then do chat to your oncologist. They may be aware of trials that we have not listed or ones that may be opening soon.

Waiting to find out more about what is happening and what it means for you is unsettling but hopefully when you have more information and you know what to expect it may become easier to deal with.

Breast Cancer Now have more information on Triple negative breast cancer here

Breast Cancer Now also have a service called 'Someone Like Me' where they can try and put you in touch with other patients with a similar cancer. Have a look here

Try if you can to take one step at a time until you know more. If you can take someone else to your appointment that can be helpful as there can be so much information to absorb.  Make a list of questions and concerns that you have so you can go through all your concerns.

At any stage you are more then welcome to ring and speak to the helpline nurses. We are here Monday to Friday 9am to 5pm, Freephone 0808 800 4040

All the Very Best,

Catherine

Treatment for triple negative invasive lobular breast cancer

24 May 2022 02:26 in response to CRUK Nurse Catherine

Hello. I can tell you about my own treatment, which I think is pretty standard for TNC, there seems to be some variations but I went straight into Chemo thereapy, 3 rounds of EC every 21 days, and then 12 rounds of Paclitaxel weekly, with Carboplatin every 21 days. I have now had my lump removed with a therapeutic mammoplasty operation and then going into Radiotherapy in a couple of months I believe.

I had a really good response to chemotherapy and they struggled to find my tumour  on any scans, my tumour was originally almost 4cm. 
 

Best of luck to you. I found the beginning the worst part, once treatment starts there is something to put energy into. Write down all your questions, if your surgeon can't answer them, then your breast cancer nurse or Ocologist will. Try not to Google too much about triple negative, treatments have moved on a lot and survival rates are much better these days, you have found your lump, which is good! and you are about to get the best treatment for it, it's going to be tough in parts and it's natural to be scared, but you CAN do this! Xxx