Why does this not seem important?

[d84]

Hello,

I was recently told 5 months after getting my results following surgery my sentinel lymph nodes ,(3 out of 5 positive) that they were showing signs of extracapsular invasion. My consultant nor breast nurse didn’t feel like this was an important factor. I called the breast nurse again and she said again they don’t mention it because again, its not a big factor in terms of diagnosis…(?!)

It seems to be a common factor that LVI nor ECI is not mentioned at time of results.

I have 2 chemos to go we ave decided on clearance after chemo rather than radio to armpit then radio to chest wall and hormone therapy but now worried about overall prognosis. My surgeon has chosen ALNC to prevent recurrance as much as possible which im happy to proceed with.

How serious is extracapsular invasion? I just think we should be told every single detail of our diagnosis.

Thanks for any advice

[entropy]

It was mentioned that I didn’t have LVI during my post op meeting with the surgeon, and was clearly stated on my copy of the GP letter, so I did take not of it. Maybe if its positive, from their pov, the treatment is the same as for any positive lymph nodes - often chemo.
There is a human natural tendency, some misguided people have, to avoid focusing on negative aspects of risk, if it still results in the same treatment pathway as someone with lower risk. Some people would rather not think about an added risk factor they can’t do anything about, whereas others, like yourself, want to know everything. A Dr doesn’t know what type of person you are, so errs on caution, as some could feel traumatised by the warts and all.
I get your frustration, like you, I’d want to know everything straight up, having to find out and chase the detail is annoying, but that is often how it goes. People will always find it easier to break good news and gloss over negatives.

[d84]

Thank you Your message makes a lot of sense and maybe thats very much the case. It wasnt even stated on my letters.

It doesnt change the treatment plan but it was just a curiosity thing as it seems common that these findings are often not mentioned to patients or brushed aside

Anyway Im nearly finished chemo so hopefully thats got rid of any nasties still lurking about

Thanks again

[Nurse_BCN]

Hello d84,

Nearly everyone who has been treated for cancer worries about it coming back (recurrence) and you’re not alone in being anxious about this. The uncertainty and fear of breast cancer returning is very real and things can feel more uncertain when you hear details in your pathology report.

The aim of treatment for primary breast cancer is to remove all the cancer and reduce the risk of it coming back in the future. Treatment for primary breast cancer will be successful for most people, and the risk of recurrence (the cancer coming back) gets less as time goes on.

Each person’s risk of cancer coming back is different. It depends on a number of factors including the type, grade, size and stage of the cancer, as well as general health and fitness. Factors such as extracapsular spread (cancer cells found in the tissue around the lymph nodes) are noted but often do not change the recommended treatment plan. It is good that you are having an axillary node clearance after your final chemotherapy sessions as this reduces the risk of recurrence further. Radiotherapy to the chest wall and hormone therapies also play an important part in reducing the risk of recurrence.

As @entropy says, different people like different levels of information, you could ask her team to for a copy of your pathology report if you feel it would be helpful to read it in detail.

The best people to speak to about your prognosis and risk of recurrence are your treatment team as they will have all the information about your individual situation.

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.

Do call our helpline if you would like to talk this through or have any further questions about any of our services. The helpline team have time to listen, talk things through and signpost you to more 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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Mandy

Breast Care Nurse

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