Diagnosed stage 4 but they want to wait 3 months for a PET scan

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I'm hoping someone can shed some light and/or give me the right questions to ask my doctor...

A brief overview:

2 years ago I had a stage 2c melanoma removed, WLE and lymph node biopsy. Lymph node and surrounding tissue clear. 

In Dec a routine CT showed a 3mm nodule in my lung. Assumed nothing and they rebooked another CT for start of Feb. 

Unfortunately the new CT has showed growth up to 5.5mm and I've been told they think it's metastatic melanoma.

Current situation:

I have a consultant appointment next week but they have told me over the phone that the plan is to wait another 3 months a do a PET scan to check how active it is and exactly where it is. I'm really confused by their decision and explanation as from reading here, people seen to start treatment almost right away. 

I'm also worried as 6 months from discovery I will still have no treatment in place and that is 6 months it's being allowed to spread and grow and potentially more METs to show up.

Does anyone have any experience of this or any insight into why they would refuse the PET scan right away? 

Thanks in advance 

  • Dear Yazzy, I do not have any medical qualifications or indeed knowledge, but as someone with advanced melanoma I do have some idea as to how worrying the waiting for results can be. Since you are going to be seeing the consultant next week, you should write down all your concerns as bullet points and then just say to them - I am worried about ...and go through your list. If you don't understand an answer then say so and Im sure they will explain more clearly.  There are many different treatments for advanced melanoma and the doctors need a lot of information to decide what's best for you, so try not to worry too much and I hope someone with more knowledge than me replies to your post soon. Or if you have a Specialist Nurse get in touch with them.  Good luck.

  • I have been told by Guys Hospital this week that I now have Stage 4 melanoma (spread from arm to lung). This followed on from a PETscan a few days after a three monthly routine appointment in January suggested a development. Given how quickly these things can change I can't think why there would be that delay.

  • Hi Yezzy, I agree that waiting 3 months seems a long time. I’d definitely ask your consultant about that. In my limited knowledge (no medical background either) melanoma has to be a certain size before it shows on a PET scan. I seem to remember that this is 7-8mm. I’m stage 4 with secondary in my lung. The CT provides a much clearer image of the lung. My consultant has shown me my scans side by side. Do ask the question though. It’s natural to worry as melanoma does grow quickly. I’ve just found some information that seems to support what I’ve just said. Hope that helps x