Confused..

Hi JoMc41417b3bfd,

My name is Gail and I’m one of the cancer information nurse specialists on the Macmillan Support Line.

Thank you for getting in touch and for sharing what you’ve been going through. What you’ve described sounds incredibly worrying. Waiting on an urgent pathway while your symptoms are changing so fast can feel overwhelming,

Many people tell us that the uncertainty when waiting for tests, investigations or results is often the most difficult part. Not having clear answers can have a big emotional impact, especially when there’s already significant pain and noticeable changes. Hearing the dermatologist mention a Sister Mary Joseph’s nodule can understandably add to that fear. While this doesn’t mean it definitely is that the fact they couldn’t exclude it is why they’ve taken your symptoms seriously and placed you on an urgent referral.

It really is important that your GP knows about the changes you’ve described with the lesion doubling in size and your pain getting worse day by day. Please contact them as soon as possible to update them and ask if they can follow the referral up directly with the hospital. Letting them know how much things have changed can help the specialist team understand just how urgent this now feels.

If you were given the name of the dermatologist or consultant involved in your care, it may also help to phone the hospital switchboard and ask to be put through to their secretary. Try to explain what has changed over the last couple of weeks, especially the increase in size and the level of pain you’re in. Secretaries often play a key role in getting urgent information to the clinical team, and sharing these new symptoms with them can sometimes help move things forward more quickly.

It can be difficult for us to give very individual advice on written forums like this because we can’t ask you the detailed questions we normally would in a conversation. If you feel able, it may help to call our Support Line. We can talk through how the lesion has changed, what the pain feels like, and any other concerns you have. Although we don’t have access to your NHS records, we can still offer clinical guidance and help you understand how urgent this might be. Sometimes, depending on what you tell us, we can help guide you on the who to contact to explain the urgency of a review.

If your pain becomes very severe, or if the lesion changes rapidly again, please don’t wait. NHS 111 can assess the situation straight away, and A&E is always an option if things are getting worse or becoming unmanageable.

We understand that hearing something like “Sister Mary Joseph’s nodule” can be frightening, even though it is rare. Waiting without answers can be incredibly hard, and it’s completely understandable if this is affecting you emotionally as well as physically. If a biopsy has been taken or is planned soon, that should help bring some clarity but the changes you’ve described really do deserve an urgent assessment.

Please remember you don’t have to go through this on your own. If you want to talk any of this through, we’re here every day from 8am to 8pm on 0808 808 00 00. Sometimes a real-time conversation can help make things feel a little clearer and a little less overwhelming.

Take care, and I really hope you’re able to be seen very soon.

Ref:amcg/km