Should I have had a CT Scan?

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1

Hi,
I have TNBC diagnosed late Oct. Lumpectomy and only 1 Sentinel Node removed. Trace of cancer found in this one node.
I am awaiting 6 rounds of chemo followed by 15 sessions of radiotherapy,

My question is : As they have found cancer in my node, how do they know whether it may have spread elsewhere?

Others on the forum say that they were given CT scans and sometimes they have found that it has spread.

I have not been offered a CT scan. Will this perhaps be offered after treatment or should I ask now?

Many thanks

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Hello
I asked my hospital if I could be scanned to see if I have cancer elsewhere and they said they don’t do that unless there is a symptom that indicates possible spread. Their reasoning is that the scans are so sensitive that they pick up all sorts of tiny things that have to be investigated as possible cancer but then turn out to be nothing which, for the patient, is very stressful and frightening. I suspect cost plays a part in it too.
From what I’ve read every hospital has its own take on this so you should definitely ask if it’s an option if that is what you would like.
Incidentally, I was told that as I have had a double mastectomy I will no longer have mammograms as I have no breasts. I was told that I can get a 'chest wall examination ’ done which includes imaging of the chest wall where my breasts were. A lot of double mastectomy patients have this annually but it’s only available at our local private hospital and not on the NHS in my area. However, we do have a specialist lymphoedema clinic and I will be monitored every 3 months for the next 3 years.
Reading the posts on this forum it’s amazing how different the treatment is between hospitals and how much information is/isn’t given. For example, some people have talked about being given diet advice and skin care suggestions but my hospital has never mentioned this at all!
Sending you a big hug.

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I had one positive node and haven’t had any form of scan; I also didn’t have full axillary clearance as my surgeon and oncologist said that radiotherapy is just as effective as the surgery, with lower risk of lymphedema.

As for the lack of scans…I’ve been told they only do these if ‘clinically indicated’. In my case, they don’t seem to think it is, so I’ve not had any. I’ll confess though, it makes me a little nervous and I’ve decided I’m going to discuss it again at my next appointment with the oncologist. It does seem that different trusts have different approaches and some trusts offer scans as standard. I suppose I should take it as a good sign that they don’t think a scan is warranted but I still worry about not knowing if something has spread :frowning:

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I have a positive node and am being given axillary clearance in a few days. I had CT and MRI bone marrow scans as my breast cancer is bilateral and I could not shake the fear that my BC was actually secondary from elsewhere as my diagnosis kept escalating. Both clear which was reassuring. Sending love to all on this journey.

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Hi jacsm

Thanks for posting.

After treatment, CT scans may sometimes be used if there is reason to think the breast cancer has spread.

However, there is no national guidance on this, so practice does differ according to local protocols as others have said. This may depend on the individual situation and risk of spread, for example if there are multiple nodes involved, the cancer was large or there is evidence that breast cancer cells have spread via blood vessels (vascular invasion).

You can ask your treatment team about the risk of spread in your situation, their agreed protocol and whether they will offer you a CT scan.

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’re also 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, (Relay UK -prefix 18001).

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Best wishes

Catherine

Breast Care Nurse

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