72.7K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Advice needed HER2+ IBC treatment options.

2 REPLIES 2
Nurse_BCN
Moderator

Re: Advice needed HER2+ IBC treatment options.

Hello LizFr

Thank you for your post. This sounds like a difficult time for you.

It’s understandable that you feel derailed after having your radiotherapy halted while waiting for your MRI results and would like to have an idea of possible treatment protocols you may be offered.

Any further treatment offered will depend on the results of your MRI scan.  This will also help inform your treatment team whether you require any further scans or investigations.

Although you work for the NHS, you mention you live in France, so it sounds like this is where you’re being treated. The best people to give you more information about what might be the best treatment in your situation are your treatment team, once they have all the information from your MRI.  However, treatments and healthcare services do vary in different countries when compared to what may be offered in the NHS.

You mention finding advocating for yourself in a very paternalistic system very hard. I wonder if you have a specialist nurse you can talk to, as they may be able to help advocate on your behalf. In similar situations, some people may also consider getting a second opinion.

You can also call our Helpline if you would like to talk this through more or have any further questions. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001)

Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message for us to call a UK number and we will call you back when we next open.

Best wishes

Teresa

Breast Care Nurse

Please read the Ask Our Nurses disclaimer  Full details on how we collect and use your data can be found in our Privacy Policy

This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.

Nurse_BCN
Moderator

Re: Advice needed HER2+ IBC treatment options.

Hi LizFr 

Thanks for posting your question.

We hope to be able to respond to you tomorrow.

In the meantime our Helpline is open from 9am tomorrow if you would like to talk things through. 

If you do phone our Helpline please let us know that you have asked a question on our forum so that we know your query has been answered. Thank you

With best wishes.

Lisa

Ask Our Nurses Service Co-ordinator

Please read the Ask Our Nurses disclaimer  Full details on how we collect and use your data can be found in our Privacy Policy

 

LizFr
Member

Advice needed HER2+ IBC treatment options.

I got my dx in July '21 and have had 6 x neoadjuvant perjeta, herceptin, paclitaxel with a PCR confirmed on PET scan in Dec '21. Lt MRM & ALND 4/1/22 and was due to start Radiotherapy on 9 March. Through all investigations I had an enlarged Rt ALN which I was repeatedly told was a covid vaccine reaction. Only biopsied at my request 3/52 ago. Results are positive node HER2+ and am awaiting results of MRI rt breast in the statistically unlikely event that it is of rt breast origin.  The oncologist has taken the view (understandably) that it is a mestastase and has halted the radiotherapy planned to left axilla and chest I am feeling suddenly so derailed. I am an English ENP, work in UK for the NHS but live in Northern France so I am a bit 'complicated'.  I cannot find what treatment protocol is appropriate for this situation, am finding advocating for myself in a very paternalistic system very hard. Can anyone offer any advice? Thank you for reading this long post. I didn't know how to make it any shorter.