Hi , just been diagnosed with grade 4 melanoma still waiting to get any treatment been told it’ll be three weeks .. so worried it’ll spread everywhere in that time , anyone else with the same what can I expect is going to happen !
Hi Cammie, please see my post about my Basal Cell Cancer, you must complain, chase and complain again, we cannot sit back and accept these waiting lists as the new norm. Kindest regards, Dave.
I'm sorry to hear about your diagnosis & I know how worrying it is when you have to wait for treatment. However, it takes a while for scans etc to be carried out before drug treatment commences for Stage 4 melanoma. They may also be waiting to receive the status of your BRAF gene test to see which drug treatment to commence (targeted or immunotherapy if you are BRAF positive or immunotherapy only if BRAF negative). I will send you a friend request - if you accept it we can chat by private message - you can tell me what led up to your Stage 4 diagnosis & I can then give you a better idea of what to expect in the coming weeks.
Sorry, I mistook your diagnosis as Stage 4 rather than a Stage 4 Breslow melanoma (T4, a tumour of more than 4mm thickness)? If this is the case, the next step of treatment would be a Wide Local Excision - a further surgery to remove a larger margin of tissue from the affected area. You would also be offered a Sentinel Lymph Node biopsy to see if melanoma has spread to the nearest lymph node. Both these procedures are done together & require a radiologist along with the Plastic Surgery team so it takes a little longer for an appointment. If this is what you are having done in 3 weeks time it's quicker than some hospitals which are taking up to 10 weeks. Also, these procedures are not treatment, they are primarily staging exercises to ensure the patient has been staged correctly - this is important as it is then used to decided what treatment plan is put into place. If there is no spread to the sentinel node, your correct Stage will be either Stage 2b or Stage 2c. At this point, adjuvant drug therapy will be given for a year to help stop any recurrence - the BRAF gene test will be used to see whether targeted or immunotherapy will be used. I hope this helps explain what will happen.
Hi thank you for your reply , the difficulty is I paid for private biopsy thinking it would save time so the appt in three weeks is initial nhs hopefully they’ll get on with treatment Asap as I fear it’s already spread
Perhaps contact the hospital and ask for a last minute cancellation if one comes up (if you are flexible enough). I have often been called to change my appointment because someone has cancelled. Hopefully you can get it brought forward.
I am in the exact same boat. I have mucosal melanoma secondary - stage 4 in both lungs. I had previously had it with successful surgeries to remove in the gynaecology area 3years ago, so it's clearly come back. Scared and worried its growing. Had to wait 3 weeks for them to review treatment options for immunotherapy that suit me as I also have auto immune hepatitis too to complicate things. Feel very alone and frustrated. My next appt is on 28th March so should get plan of action then.
How is this happening in a so called developed country? It's absolutely shocking. Please please complain to PALS, your MP, go to a no win no fee Lawyer, keep phoning the hospital, if we all just sit back passively it will never get any better.
