What am I to expect?

Hi Mark

I was originally diagnosed stage 3. Unfortunately I'm now stage 4 and not curable but am being treated which should keep it at bay.

I'm not sure how they will move forward with a fresh diagnosis at stage 4. 

At stage 3 I had my primary mole removed,followed by immunotherapy, which Unfortunately I did not tolerate,so had to stop. 

On subsequent scans discovered had spread to my lung and liver. Have started targeted combination treatment,which so far I am tolerating with just a few niggles of side effects. Find out on Thursday if the treatment is working.

I'm sorry I can't offer you more as all our treatment cancer etc is very different. 

I wish you well

Thank-you for responding. I'm so sorry to hear much of what you have said. I hope thursday you get good news. May I ask how long has it been?

Hi Mark

I'm so sorry to hear your diagnosis, it is a very stressful and worrying time and I hope you have people to help you through this stage. 

I was diagnosed stage 4 metastic melanoma last December. Nodules found in my thigh and my lung. I had to have an MRI scan and a PET Ct scan to find out that full diagnosis. It was 3 weeks from when they first found the cancer to getting all the scan results and the full diagnosis. I was started on Immunotherapy in January which has so far been working really well thankfully. I feel lucky that immunotherapy was an option as it is much more tolerable for most people than chemotherapy and the side effects I've had haven't affected me too much.

I hope you don't have to wait too long for all the answers you need and wish you well. 

Thanks for responding.  I live alone, no family, so this is really it. Can I ask was that NHS or private?

This forum is definitely helpful, you might find speaking to a Macmillan nurse helpful too. 

I'm on the NHS, I did do a lot of chasing up to get my scans booked in myself so may have took a bit longer for the full diagnosis if I hadn't done that.

Can't fault the care I've received though, I've definitely felt looked after. 

Thank-you so much for giving me something positive about the NHS and waiting times. Really needed that.

Hi Mark B23 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

That must have been such a shock for you to discover that you have been diagnosed straight away as stage 4. I hope you have a supportive cancer team around you to help you through this.

I can't help with any details of timing, etc as I'm not stage 4 but there are others in the group who are and I'm sure they'll be along soon to share their experiences with you.

When you feel up to it, it would be really helpful if you could put something about your diagnosis, eg when you were diagnosed, details of where the melanoma has spread to and treatment you've had so far into your profile. This really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Thanks.  I have now done so.

Hi Mark.  I’m sorry to hear you’ve been diagnosed with melanoma but welcome to the forum - it’s very supportive and helpful.  I’ve just had a read of your profile and from what you’ve written, I think your melanoma is currently stage 2 (your melanoma has been classed as a pt4b which means it’s thicker than 4mm and ulcerated). Do you now have to have further tests?

Take care x

Thanks for filling out your profile Mark B23 

Melanoma staging is tricky and is a two stage process. You can read more about it if you click here.

I agree with Tinkerbell that your diagnosis of pT4b means that you are currently Stage 2 not Stage 4. If you look at my link you'll see that the p stands for pathological stage, the T stands for tumour and 4 means that the Breslow thickness is more than 4mm thick. 

Then you need to scroll back up the page where you'll see that a Breslow thickness of 4mm or more puts you at Stage 2 as the thickness is more than 4mm. This of course presumes that you haven't had further tests and been told that it's spread to different areas of your body.

I hope this helps