Although I'm a melanoma patient I'm afraid I have no personal experience of anorectal melanoma. I will contact some of my fellow melanoma patient friends and see what information/advice I can find. Meanwhile, if I can help in a general way please let me know.
thank you for responding , I have no idea where to go with this , what I’m feeling etc I I am being discussed at a MDT meeting Monday , that’s al, I know except it’s a very rare to get it in the area I have it , my fears are it’s spread and it’s terminal , I suppose this is the reaction of anyone with cancer ?
Thank you for taking time out to chat to me , can you explain your process it may help xxx
Have they told you any more information, such as the depth of the tumour and your BRAF status? If not, this will be discussed at your next appointment & will have a bearing on the treatment plan the MDT have decided upon.
If the tumour is more than 1mm deep you may be offered a Sentinel Lymph Node Biopsy (SLNB) where they inject dye to light up the nearest lymph nodes which are then removed & sent for biopsy to see if the melanoma has already spread. This is usually offered as an option - you don't have to accept it as they will outline the possible side effects it can cause. If you don't accept it they should offer an alternative of regular ultrasounds to check the nodal areas. Dependant on the size of the initial excision will also decide whether they need to remove extra tissue from the area to ensure a safe margin for cancer cells - this is called a Wide Local Excision (WLE) and is carried out on the majority of patients (belt & braces job).
The depth of the tumour and other information (if it's spread) will determine your Stage. Stages 1 & 2 are where it's stayed in place, Stage 3 is where it's spread to the nodes and Stage 4 is where it's spread internally to an organ or the bones/brain. Stage 4 patients are offered immunotherapy treatment and/or targeted treatment if they are BRAF positive. The situation has changed recently for Stage 3 patients. Up to now, a SLNB that has shown positive for lymph node involvement meant that a full clearance of nodes would be carried out from the area involved (CLND - complete lymph node dissection) and then regular check ups would commence. However the guidelines now are not to do a CLND if node involvement is evident but to give immunotherapy or targeted treatment (these drugs have just been passed by NICE). This is mainly to cut down on the side effects that a CLND can cause & to give patients a better chance of stopping a recurrence or further spread.
The BRAF gene is found in 50% of melanoma patients and it's called BRAF positive. Those who don't have the BRAF gene are called BRAF negative or wildcard. BRAF positive patients have the added option of targeted therapy which doesn't work on BRAF negative patients so that's a bonus. Unfortunately, BRAF positive means the cancer may be more aggressive but it doesn't appear to be in all BRAF positive patients. I'm BRAF positive yet it took 13 years for me to progress from Stage 1 to Stage 3 (I was in the unlucky 5% that this would happen to) and then I'm still here free of the disease 9 years at Stage 3. So melanoma is a very unpredicatable & sneaky cancer that you can never second guess I'm afraid.
Where are you being treated? I ask because, if you find yourself unhappy at any time with your care & treatment you always have the option to change your hospital. If your hospital isn't known as a centre of excellence for melanoma it's always something to bear in mind. I'm treated at St James, Leeds which is a centre of excellence - others include Christies, Manchester, the Marsden, London and there are others I can find out about if you should need the information. I have sent you a friend request. If you accept it I can send you more information.
Good luck and let us know how you get on after your next appointment,
I wonder if you can help me. I am 51 years old. I had a malignant melanoma which grew from a mole on my back and was removed in 2008. It was stage 2b due to size, shape and thickness. A CT scan showed no spread. The only follow up that I have had since has been three monthly skin and manually accessible lymph node checks with the consultant dermatologist. When I got to 10 years, the 3 monthly checks were reduced to 6th monthly.
As far as I know, nobody analysed my melanoma for gene mutations.
October/November just gone, I was ill for a few weeks with a cough, wheeze and fever which would not abate despite 2 rounds of antibiotics. An X-ray revealed a large shadow in my left lung. CT followed by PET scans confirmed cancer. A bronchoscopy revealed lung cells so the tumour was not melanoma as I thought it might be. It was a rare aggressive form of NCSLC called pleomorphic carcinoma, usually affecting older males who smoke. I am a non smoker. I had a pneumonectomy in mid December but cancer cells were found on my lung surface so I'm stage four and incurable.
Histology showed that my tumour was positive for a BRAF mutation which is very, very rare in NSCLC but does occur and as you know, is present in 50% of MMs.
So it seems that I have now had two cancers as a result of this mutation. I started my targeted therapy drugs today, they are Dabrefenib and Trametinib which are used it seems exclusively to treat BRAF positive mm and nsclc. I wondered if you took these or similar drugs as you mentioned in another post that you are BRAF positive? Or was this too early in the evolution of these targeted therapies? Or are they only used for stage 4 disease?
Also I wondered if you had any follow up from your previous melanoma before you became aware of the secondary lymph involvement, or was this too early in the evolution of the targeted gene therapies? I can't help wishing I had had some program of regular scans which might have detected my lung tumour earlier when it was still small and potentially curable by surgery.
Forgive me if I have made any wrong assumptions about your illness etc!
I'm so sorry to hear about your lung cancer diagnosis. I will answer some of your questions but I will also send you a friend request - if you accept it I can send you a private message with some more information that may be helpful.
My primary melanoma was diagnosed 23 years ago - it was Stage 1 and I only had check ups, no scans, for 5 years. I wasn't told if they had checked my BRAF status at this time. Fast forward to 10 years ago when I found a lump in my groin. Fortunately I had returned under the care of my previous dermatologist as she was researching familial melanoma & other family members were taking part in the research. A fine needle biopsy confirmed melanoma in the groin node & a full node clearance of my groin & pelvis also found a pelvic node with melanoma. This meant I was now Stage 3.
The BRAF status of my nodal melanomas was BRAF positive. I do have to point out that the BRAF status can change with each tumour so my primary, years before, may or may not have also been positive. This also means that your melanoma may not necessarily have been BRAF positive. If it had been, you wouldn't have received any adjuvant treatment anyway as it wasn't made available to Stage 3 patients until September 2018 - it has actually only been available to Stage 4 patients as treatment for about 4 years - in 2008 there were only drug trials available & I believe Dab & Tram weren't on trial until about 8 years ago. So the answers to your questions are - yes, if you are on DAB & Tram you are BRAF positive, however it doesn't necessarily mean your melanoma was BRAF positive as each tumour can have a different BRAF status. Neither had the treatments been trialled at the time of your melanoma diagnosis so were therefore not available in 2008.
I'm afraid regular, follow up scans when a patient is early stage & has no evidence of disease after a long period of time is not offered on the NHS. In fact, since my Stage 3 diagnosis 10 years ago, I have only had two follow up scans & they were in the first year. Consultants argue that the amount of radiation a patient receives at each scan is worse than the benefit of the scan results. The only regular scans given to patients are Stage 4 patients and Stage 3 patients who are receiving adjuvant drug therapy. It's very hard to accept that perhaps regular scans would have picked this up. The thing that is in your favour is that you are being treated with drugs that weren't available 18 months ago so, should your lung tumour have been detected before that, even with surgery there would have been no other treatment available at that time.
I hope I have helped a little. I will send you a friend request now. Good luck with the treatment - it is showing great promise for melanoma patients.
