ILC and Classical LCIS

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1

I was diagnosed with an Invasive Lobular Carcinoma (after a lumpectomy biopsy) the week my Mother was dying. As I was told I absolutely needed to be treated straight away (despite the awful circumstances) my sisters and I buried my Mum on Friday and then I had surgery the following Monday. Given this perceived need for urgent action I was shocked when at my last visit with my oncologist said he characterised my cancer as “small and slow growing”. Believe me, this was certainly not the way it was presented to me at the time!

Feeling somewhat gaslit, at the urging of a friend with a medical background I went and found my pathology reports online (MyGov) which I’d never been given before and I was totally shocked to find out not only did I have a Stage 2 Grade 2 cancer but I also have Classical Lobular Carcinoma In Situ. How could no one have told me this? Subsequently, I now feel total lack of trust in my care team.

This information has cemented my decision to dump my surgeon as I feel she should have told me this when she got the pathology results (I already had other issues with her). I’ve also called an out of cycle meeting with my oncologist tomorrow to see what this means for my risk factor going forward and ensure we are on the same page. Any ideas on how I raise/discuss this without becoming as emotional and angry as I feel?
All suggestions welcome!! :pray:

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Hi angelajane

Thanks for posting

It sounds as if you have had a very difficult and distressing time, and it’s understandable you’re feeling emotional and angry.

Losing trust in your care team is particularly difficult. Talking to a different member of the treatment team, as you have arranged, can be helpful. Thinking through exactly what you want to ask and writing down all your questions prior to your appointment may help to keep you focused. Taking a friend or family member to the appointment with you may also be helpful and your breast care nurse can offer additional help information and support.

Depending on the result of your meeting, you do have a right to make a complaint and may want to contact the Patient Advice and Liaison Service (PALS). You can find your nearest PALS office on the NHS website.

This is a confidential service for patients, their families, and carers. They can help resolve concerns related to health matters, explain, and handle complaints procedures and use feedback to help influence change. PALS work with staff, managers, and if relevant, external organisations to provide support and advice to people concerned about the care they are receiving.

Similar services are available in Wales, Scotland and Northern Ireland.

Going forward, some people find it helpful to have a second opinion. If you find that you continue to feel emotional and angry talking therapies can help you to explore your thoughts and feelings.

We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.

You are welcome to call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

The number is 0808 800 6000. If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.

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Best wishes

Val

Breast Care Nurse

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