Does the NHS / Drs ever change your starting Stage?

Thanks for getting in touch, and welcome to our online community. I see you have joined a few of our online forums, and I hope these have been helpful and informative. I'm sorry to read about your current non-small cell lung cancer diagnosis. Clinical abbreviations to describe a cancer stage and grade can cause anxiety and worry. We do have further information regarding how cancer is graded and staged.

My name is George, and I'm one of the Cancer Information Nurse Specialists on the Macmillan Support Line. Unfortunately, we do not have access to the NHS and personal medical records and can only give general information and support. 

T4 specifically refers to Tumour Size and must not be mistaken for stage. Lung cancer is often described as metastatic when it has moved out of the lung and into other body parts. A revision of the staging and diagnosis of cancer would not usually happen at this time. However, a good response from treatment may shrink the primary tumour and any other small tumours (Metastases) in the lymph nodes and body. We recommend having this discussion with your team, as they have access to all your medical records and test results.

In addition to the online community forums you have joined Roy Castle Lung Cancer Foundation has specialised support groups for people suffering lung cancer.

I hope you have found this information helpful. If you wish, you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

With best wishes

George

Macmillan Cancer Information Nurse Specialist 

(Our Ref: GHi/KM)

Thanks for the reply but a

George - Macmillan said:

T4 specifically refers to Tumour Size and must not be mistaken for stage

are you sure ? According to Cancer Research UK and my oncologist T4 refers to the following 

"T4 can mean different things.

The cancer is bigger than 7cm.

Or it is in more than one lobe of the lung.

Or it has spread into one or more of the following structures:

• the muscle below the lungs (the diaphragm)
• the area between the lungs in the middle of the chest (the mediastinum)
• the heart
• a major blood vessel
• the wind pipe (trachea)
• the nerve that controls the voice box
• the food pipe (oesophagus)
• a spinal bone
• the area where the main airway divides to go to each lung"

as a fyi N refers to node activty and <M categorsies the spread of the cancer to other areas

in my case I'm N3 and M1B

N3 means there is cancer in lymph nodes:

• on the opposite side of the chest from the affected lung or
• above the collar bone or
• at the top of the lung

M1b means that there is a single area of cancer outside the chest in an organ (such as the liver or brain) or a lymph node.

So my diagnosis is Adenosquamous NSCLC and is staged at T4 N3 M1B (using the TNM system) and my question was does your staging ever get updated on your NHS records as you go though treatment if you (as in my case) respond well to treatment. No probs if McMillan isn't familiar with how staging is managed though  - I can ask my oncologist in the next meeting :) 

Hi tallbee,

Thank you for getting back in touch with us. My name is Kelly and I’m one of the Cancer Information Nurse specialists on the Macmillan support line. 

I  understand that you have a further question about whether staging of cancer gets updated on your NHS records.

A cancer is always referred to by the stage it was given at diagnosis, even if it were to improve. However, new information about how the cancer has responded to treatment or changed over time would usually be updated in your medical notes.

The stage doesn’t change, even though the cancer might.

These are good questions, and your consultant would be the best person to speak to about this. As they are directly involved with your care, they will be able to give you tailored reassurances and advice about what to expect moving forward.

I hope this is helpful.  If you have further questions, please don’t hesitate to get back in touch.

Take care and best wishes,

Kelly

You can also speak with the Macmillan Support Line team of experts.  Phone free on 0808 808 0000 (7 days a week , 8am-8pm) or send us an email.

Ref: KA/AC