Melanoma
Written for the first few weeks, in 19 steps. You do not need to read it all today.
You've Just Been Diagnosed With Melanoma and There Is a Clear Path Forward
You may have never had to think about any of this before, and now you are being handed words you have never heard and asked to make sense of them. That is completely normal. Almost nobody knows any of this until the day they are told.
This page starts from the beginning. It does not assume you know anything about cancer, about how the body works, or about medicine. Every word is explained as it comes up.
There is something worth saying straight away. Most melanoma is found early and treated with a single operation, after which many people need nothing else at all. And for melanoma that has gone further, the treatment available now is entirely different from what existed fifteen years ago. Almost nothing written before that change is a fair guide to today.
At Cancerify we replace fear with hope. With melanoma that means three things. Understanding what your pathology report actually says, getting the right operation, and knowing which questions matter.
If you only do one thing today, do Step 3. Find out your Breslow thickness and whether your melanoma is ulcerated. Those two numbers decide almost everything that follows.
Part 1Right Now
You were told days ago at most, and you may not have seen a specialist yet. This part is only about understanding what you have been told.
1Understanding Melanoma
Start here. This explains melanoma from scratch, in plain words.
Where you are right nowSomeone has used words you may never have heard, and nobody has explained them properly.
What to do nowNothing. Just read this once. You do not need to remember it.
Your body is built from tiny building blocks called cells. You have trillions of them, and they do different jobs depending on where they are.
In your skin there are cells called melanocytes. Their job is to make the pigment that gives your skin its colour and that darkens it in sunlight. They are also what moles are made of.
Melanoma happens when melanocytes start growing when they should not, and keep going.
Here is the thing that matters most about melanoma, and it is different from most cancers on this site.
Depth is almost everything. How far down into the skin the melanoma has grown, measured in fractions of a millimetre, predicts what happens next better than how wide it looked or how alarming it appeared.
That measurement is called Breslow thickness, and it is the single most important number in your file.
A melanoma that looked large and dark but is very thin is a more favourable situation than a small one that has grown deeper. That is why your pathology report matters far more than what the spot looked like.
Melanoma can also occur in places that surprise people. Under a nail, on the sole of the foot, in the eye, or on internal surfaces. Those are less common and are managed slightly differently.
2Three Things That Are Not True
If any of these have been on your mind this week, you can let them go.
Where you are right nowYou have probably been searching, and you have probably found things that frightened you badly.
What to do nowStop reading general articles about melanoma until you know your Breslow thickness. Almost none of them apply until then.
Most melanoma is caught early and treated with one operation. The majority of people diagnosed have thin melanoma, have it removed with a wider excision, and need no further treatment at all. If what you read this week was about advanced melanoma, that may not be your situation.
Treatment for melanoma changed completely, and most of what is online is older than that change. In the last fifteen years immunotherapy and targeted medicines transformed what is possible for melanoma that has moved beyond the skin. Anything written before that is not a fair guide, and a great deal of what surfaces in a search is.
You cannot catch melanoma and you cannot give it to anyone. It is not caused by a germ and does not pass between people.
One more thing. You did not necessarily cause this with sun. Sun exposure is a factor for many melanomas and not all. Melanoma occurs on skin that never sees sunlight, in people who always covered up, and in people with dark skin. Going back over every sunburn you ever had will not change anything now.
3Understanding More About the Melanoma You Have
Two numbers on your report decide almost everything.
Where you are right nowYou have had a mole or spot removed and a report exists. You may not have been walked through it.
What to do nowAsk for your Breslow thickness in millimetres, and ask whether your melanoma is ulcerated. Write both down.
Breslow thickness. How deep the melanoma has grown into the skin, measured in millimetres and often to one or two decimal places. It is the most important number in your file.
Thinner is better, and the thresholds matter. Very thin melanomas often need nothing beyond a wider removal. As thickness increases, the conversation moves on to checking the lymph nodes and then to treatment after surgery.
Ulceration. Whether the surface of the melanoma has broken down. This is assessed under a microscope and it is not about whether it looked broken to you. Ulceration changes the stage and it affects decisions about further treatment.
Those two together do most of the work.
You will also see these.
- Mitotic rate. How many cells were actively dividing.
- Margins. Whether healthy tissue surrounded the removed area. Melanoma is usually removed twice, first as a diagnostic biopsy and then as a wider excision, so early margins are often not final.
- Subtype. Superficial spreading, nodular, lentigo maligna, acral lentiginous and others. Less consequential than thickness for most decisions.
- Regression. Where part of the melanoma has been attacked by your own immune system. It can make thickness harder to measure.
Mutation testing comes later and only if needed. If melanoma has moved beyond the skin, the tumour is tested for a change in a gene called BRAF, and sometimes others. That result decides between two kinds of medicine. It is not needed for most thin melanomas, so if nobody has mentioned it, that may be because it does not apply to you.
4What Does Not Need Deciding Yet
This is the part that takes the pressure off.
Where you are right nowYou have had something removed and are waiting to hear what happens next.
What to do nowPut down anything you are trying to decide before you have your Breslow thickness.
Melanoma rarely requires a decision within days. Taking two or three weeks to get results, see a specialist and plan properly does not change your outcome.
Here is what is not being decided this week.
- Whether your lymph nodes will be checked. That depends on your thickness and ulceration.
- Whether you need any treatment after surgery. That is decided after the wider excision and any node check.
- Whether you need scans. For thin melanoma, often no scans are needed at all, and that reflects favourable findings rather than an oversight.
- Where you have your treatment. That can still change.
One thing is worth doing now if it applies to you. If you have not had your whole skin examined by a dermatologist, ask for that. People who have had one melanoma have a higher chance of another, and a full skin check is part of proper care rather than an extra.
Part 2This Week
This changes your outcome more than anything else you will do, and it happens before treatment starts.
5Who You Need to See
Who leads your care depends entirely on your thickness.
Where you are right nowSomeone has removed a mole and told you it was melanoma. You may not know who takes over from here.
What to do nowAsk who is taking over your care, and ask whether your thickness means you need a sentinel lymph node biopsy. That answer decides which specialist you need.
Most people find out from a dermatologist, a family doctor or a surgeon who removed the spot and sent it for testing.
Who leads from here depends on your situation.
- A dermatologist manages most thin melanoma, performs or arranges the wider excision, and does your ongoing skin checks. For many people this is the only specialist needed.
- A surgical oncologist or plastic surgeon performs wider excisions in difficult locations and does sentinel lymph node biopsy.
- A medical oncologist, a cancer doctor who handles medicines, becomes central if melanoma has reached the lymph nodes or beyond. This is where the biggest changes in melanoma treatment have happened.
Here is the part that matters. Melanoma is unusual in that the right specialist genuinely varies. Someone with a very thin melanoma being managed entirely by a dermatologist is receiving appropriate care. Someone with a thicker melanoma needs a surgical opinion about their lymph nodes, and if nodes are involved they need a medical oncologist who treats melanoma specifically.
The most common gap is the middle one. People with melanoma thick enough to warrant a sentinel lymph node biopsy sometimes never get referred for that conversation, because the person who removed it simply did the wider excision and discharged them.
If you have a new severe headache, confusion, a seizure, weakness on one side of your body, or sudden vision changes, do not wait for an appointment. Call emergency services or go to your nearest emergency department.
6Why Your Choice of Doctor Matters
Five reasons, and they are the reason this whole site exists.
Where you are right nowYou are about to be handed a doctor, or you have been given a name, and it feels like something you have no say in. You do have a say, and this is the point where it counts most.
What to do nowRead the five reasons below, then search for a melanoma specialist near you and compare them against whoever you have been referred to.
Reason 1. Reading the Pathology Correctly Decides Everything Else.
Melanoma is unusual in how much rests on one report, and how difficult that report is to produce.
Breslow thickness is measured in fractions of a millimetre under a microscope. Ulceration is a judgement about whether the surface has broken down. Distinguishing melanoma from an unusual but harmless mole is one of the genuinely difficult tasks in pathology, and specialists disagree more often here than in most cancers.
Studies of second opinion review in melanoma pathology have found meaningful rates of revision, in both directions. Some things called melanoma turn out not to be. Some thicknesses are revised, which changes whether a lymph node biopsy is recommended.
Because a tenth of a millimetre can change your plan, that matters.
Specialists send difficult cases to a dermatopathologist, meaning a pathologist who specializes in skin, as a matter of routine. It is a standard request and whoever gave you the diagnosis will know how to arrange it.
Reason 2. The Sentinel Node Conversation Gets Missed.
This is the most common gap in melanoma care and it is worth understanding.
Sentinel lymph node biopsy identifies the first one or two lymph nodes that fluid from the melanoma site would drain to, and removes only those for examination. Lymph nodes are small glands that filter fluid.
It tells you whether melanoma cells have travelled there, which changes your stage and often changes whether treatment after surgery is offered.
Beyond a certain Breslow thickness, and particularly with ulceration, it should be discussed with you. Not necessarily done, because there are reasons someone might choose not to, but discussed.
It has to happen at the time of the wider excision. Once the area has been operated on and healed, the drainage pathways are disrupted and the test becomes unreliable. There is a window and it closes.
That is why this gets missed. Someone has the wider excision done promptly by whoever removed the original spot, and the conversation about nodes never happens until afterwards, by which point the window for doing it properly has closed.
If your Breslow thickness is beyond a millimetre, or you have ulceration, ask about sentinel lymph node biopsy before your wider excision is booked.
Reason 3. Treatment After Surgery Is New Enough That Not Everyone Offers It.
For melanoma that has reached the lymph nodes, and now for some thicker melanomas that have not, treatment given after surgery reduces the chance of it returning.
That is called adjuvant treatment, and it is either immunotherapy, which helps your own immune system recognize melanoma cells, or targeted tablets if your melanoma carries a BRAF change.
This is genuinely recent. Fifteen years ago there was very little to offer after surgery. The medicines that changed that arrived in the last decade and the guidance has kept expanding to include more people.
A doctor who follows melanoma closely knows exactly who qualifies now. A doctor who sees melanoma occasionally may be working from guidance that has since moved.
If you have had lymph node involvement, or a thick melanoma, ask whether treatment after surgery applies to you and ask when that was last reviewed.
Reason 4. Four Things Specialists Do That Others May Not.
They test for BRAF when it matters. If melanoma has moved beyond the skin, testing for a BRAF change decides between two effective kinds of treatment. It should be done before choosing.
They do a full skin examination. Having had one melanoma raises the chance of another, and a complete check of your whole skin, including places you cannot see, is part of proper care.
They ask about your family. A small share of melanoma runs in families, and several melanomas in close relatives is worth mentioning. It can lead to screening for relatives.
They manage immunotherapy effects properly. These treatments work by activating your immune system, which can cause it to act against healthy tissue. Recognizing and treating that early is a specific skill, and it is covered in Step 15.
Reason 5. How We Pick the Doctors on This Site.
Every melanoma doctor on Cancerify is checked against a strict, published set of standards before we add them. We look at published research, work on clinical trials, professional recognition, leadership roles and awards.
Most of all, we look at whether that record is in melanoma specifically rather than spread thinly across dermatology or oncology generally. Those are not the same thing.
Doctors can never pay to appear here, and neither can hospitals. We are not connected to any hospital or practice, and no money changes hands.
We do this so you do not have to spend the hardest week of your life trying to work out who is who.
7Getting a Second Opinion
Two things worth checking, and one of them has a deadline.
Where you are right nowYou have a pathology report and possibly a plan for a wider excision.
What to do nowIf your Breslow thickness is beyond a millimetre or you have ulceration, get the sentinel node question answered before your wider excision is scheduled.
Almost everyone newly diagnosed with melanoma should get a second opinion. It simply means having a different doctor look at your case and tell you what they think.
It is not rude and nobody will be offended. Doctors arrange second opinions for their own family members.
With melanoma there are three specific things worth checking.
Your pathology. Ask for review by a dermatopathologist. Breslow thickness is measured in fractions of a millimetre and revision changes plans.
The sentinel node question, and this is the one with a deadline. It must be settled before the wider excision, because the test becomes unreliable afterwards.
Whether treatment after surgery applies to you, if you have thicker disease or involved nodes. Guidance has expanded and not everyone has kept pace.
When you arrange it, ask for these things to be sent on.
- Your pathology report, including Breslow thickness and ulceration status
- Your pathology slides, made available for review
- Photographs of the original lesion, if any exist
- Any scans on a disc
- The proposed plan in writing
8Getting Ready for Your Appointment
Five things that change what you walk out with.
Where you are right nowYou have a date in the diary and a head full of questions you will forget the moment you sit down.
What to do nowAsk someone to come with you, and write your questions tonight while you are thinking about them.
- Bring someone with you. Not just for support, though that helps, but for memory.
- Bring your pathology report, or check it was sent ahead. This is the document everything rests on.
- Bring photographs of the original spot if you or anyone took any. These are genuinely useful and people rarely think to keep them.
- Bring a note of your family history of melanoma or other skin cancers.
- Write your questions down and put the sentinel node question first if your thickness is beyond a millimetre.
9Questions to Ask
Take this list in with you.
Where you are right nowAbout to meet the person who will lead your care, with limited time to ask everything.
What to do nowScreenshot this list or print it and take it in with you.
- What is my Breslow thickness, and is my melanoma ulcerated?
- What stage does that make me?
- Should I have a sentinel lymph node biopsy, and does it need to happen at the same time as my wider excision?
- How much of a margin will the wider excision take?
- Do I need any scans?
- Should my pathology be reviewed by a dermatopathologist?
- Will I need any treatment after surgery, and when is that decided?
- Should my melanoma be tested for BRAF?
- Can I have a full skin examination, and how often should I have them?
- Should my family be checked?
Part 3At Your Appointments
Now you have a specialist. This part explains the words they will use and the order things happen in.
10Who Will Be Looking After You
Who leads depends on your thickness, and that is normal.
Where you are right nowYou have met, or are about to meet, several new people and it is not obvious who is responsible for what.
What to do nowAsk who is leading your care overall, and who does your ongoing skin checks.
- A dermatologist manages most thin melanoma and does your ongoing skin surveillance. For many people this is the main and only specialist.
- A dermatopathologist is a pathologist specializing in skin. They produce the report everything rests on. You will never meet them and their work decides your plan.
- A surgical oncologist or plastic surgeon performs wider excisions in difficult places and sentinel lymph node biopsies.
- A medical oncologist handles immunotherapy and targeted medicines, and becomes the central doctor if melanoma has reached lymph nodes or beyond.
- A specialist nurse is often the person you speak to most, and the first person to contact about any immunotherapy effects.
11Understanding Your Test Results
Two numbers do most of the work.
Where you are right nowYou are being given results, or waiting for them, and the words mean nothing to you.
What to do nowAsk your doctor to go through your report line by line, and write down your Breslow thickness.
- Breslow thickness. In millimetres. The most important number in your file, and the one that drives every decision.
- Ulceration. Whether the surface has broken down under the microscope. Changes the stage and influences treatment decisions.
- Mitotic rate. How many cells were actively dividing.
- Subtype. Superficial spreading, nodular, lentigo maligna, acral lentiginous and others.
- Margins. Whether clear tissue surrounded the removed area. Usually addressed by the wider excision.
- Regression. Where your immune system has attacked part of the melanoma. Can make thickness harder to measure.
- Sentinel lymph node result, if you have one. Whether melanoma cells were found in the first draining node.
- BRAF status, if tested. Decides between two kinds of medicine if treatment beyond surgery is needed.
- LDH. A blood test used in more advanced situations.
12What Happens Week by Week
For most people this is shorter than they expect.
Where you are right nowThings are moving, or not moving, and you have no idea whether that is normal.
What to do nowAsk what the next three steps are and roughly when each one happens. Write the answer down.
- Week one to two. Your pathology comes back with Breslow thickness and ulceration status. You are referred to a specialist.
- Week two to four. You see the specialist. This is when the sentinel node decision is made, and it must be made before the wider excision. Scans are arranged only if your thickness or node status warrants them.
- Week three to six. The wider excision, taking a margin of healthy skin around the original site. If a sentinel node biopsy is being done, it happens in the same operation.
- One to two weeks afterwards. Full pathology comes back including any node result. This is when your stage is confirmed and when it is decided whether you need any further treatment.
- After that. For most people, nothing further is needed beyond regular skin checks. For others, treatment after surgery is discussed.
For thin melanoma, the whole process can be over within about six weeks, with only surveillance afterwards. That is a common outcome.
13How They Decide Your Treatment
Thickness, ulceration and nodes. In that order.
Where you are right nowYour results are back and a plan is being put together.
What to do nowAsk what stage you are, and ask what would change if your node result comes back one way or the other.
Melanoma staging uses Breslow thickness, ulceration, whether lymph nodes are involved, and whether cells have travelled beyond them.
Unlike most cancers, the primary measurement is depth in millimetres rather than width in centimetres. That is worth remembering if you are comparing notes with someone who has a different cancer.
What your stage changes.
Thin melanoma without ulceration. Usually a wider excision and then regular skin checks. Often nothing else at all.
Thicker melanoma, or ulceration. A sentinel lymph node biopsy is usually discussed, done at the same time as the wider excision.
Involved lymph nodes. Treatment after surgery is usually offered, and this is where the biggest recent changes have been.
Melanoma that has travelled further. Systemic treatment leads, meaning medicine that travels through the whole body. This is the area transformed most by immunotherapy and targeted medicines.
14The Treatments You May Be Offered
For most people the first one is all that is needed.
Where you are right nowA plan is being discussed and unfamiliar names are coming at you quickly.
What to do nowAsk which apply to you, and ask what would make the answer no further treatment.
- Wide local excision. Removing a margin of healthy skin around where the melanoma was. The margin depends on your thickness. For most people with thin melanoma this is the entire treatment.
- Sentinel lymph node biopsy. Removing only the first draining node or two to check for melanoma cells. Done at the same time as the wider excision.
- Immunotherapy. Helps your own immune system, which is your body's defence force, recognize melanoma cells. Given after surgery to reduce the chance of return, or as the main treatment for melanoma that has travelled further. This class of medicine changed melanoma treatment more than anything else.
- Targeted tablets. For melanoma carrying a BRAF change. Taken at home and often work quickly.
- Radiation. Used in specific situations, including some cases after lymph node surgery and for melanoma that has reached the brain.
- Surgery to remove deposits elsewhere. In some situations melanoma that has travelled can still be removed surgically, which is not true of every cancer.
- Regular skin surveillance. For everyone. Not a treatment as such and genuinely part of your care.
Part 4Once Treatment Starts
Read this part when you get there. Not all of it applies yet.
15When to Call Straight Away
If you are on immunotherapy, this section is the most important on the page.
Where you are right nowYou may have had surgery only, or you may be starting treatment beyond it.
What to do nowPut your team's number in your phone right now, and if you are on immunotherapy, read the list below before you start.
Call emergency services immediately for these.
- A seizure, including a first one.
- Sudden weakness or numbness on one side, trouble speaking, or sudden vision changes.
Call your team straight away, at any hour, for these.
- A new severe headache, particularly one that is worse on waking or comes with vomiting.
- New confusion or unusual drowsiness.
- New severe back pain, especially with weakness, numbness or tingling in your legs.
- After surgery, a wound becoming red, hot, swollen or leaking fluid, or a temperature of 100.4°F (38°C) or higher.
- Swelling in the arm or leg on the side where lymph nodes were removed.
If you are on immunotherapy, this list matters particularly.
Immunotherapy works by activating your immune system. Sometimes that immune activity turns towards healthy tissue, which can affect the bowel, skin, lungs, liver, thyroid and other glands.
These are treatable, and the treatment is far simpler when started early than when left. Reporting them promptly is not making a fuss. It is exactly what your team wants.
- Diarrhoea, several loose stools a day more than usual, or any blood in your stool
- A rash that is spreading, or severe itching
- A new dry cough, or breathlessness
- Unusual and persistent tiredness, feeling faint, or dizziness on standing
- Yellowing of your skin or eyes
- Severe headache with vision changes
- Feeling much colder or hotter than usual, unexplained weight change, or a racing heart
Do not wait to see whether these settle. With immunotherapy that is the single most common mistake, and it is the one your team will most want you to avoid.
Carry the alert card your team gives you, and tell any doctor treating you for anything that you are on immunotherapy.
16Eating During Treatment
Straightforward, with one specific thing about immunotherapy.
Where you are right nowPeople are sending you diet advice, and most of it is wrong.
What to do nowAsk your team about supplements before taking any, particularly if you are on immunotherapy.
There is no food that cures melanoma and no diet that replaces treatment.
For most people with thin melanoma, nothing about eating needs to change. If your treatment is a wider excision and skin checks, this section barely applies to you.
Sugar does not feed cancer the way the internet says. Every cell uses sugar, including healthy ones, so cutting it out does not starve anything except you.
If you are on immunotherapy, tell your team about every supplement. This matters more here than on most pages. Anything that stimulates the immune system, including some herbal products sold for immunity, can interact with how immunotherapy behaves. Bring the actual bottles.
Report bowel changes rather than adjusting your diet around them. If you develop diarrhoea on immunotherapy, the instinct is to change what you eat and wait. Tell your team instead. It can be a sign the immune system is acting against your bowel, and it is very treatable early.
Vitamin D is worth asking about. People being treated for melanoma are often advised to avoid sun exposure, which affects vitamin D. Your team can check your level rather than you guessing at a supplement.
17Moving About and Exercise
Mostly straightforward, with two things to ask about.
Where you are right nowYou are recovering from a skin operation, or possibly from lymph node surgery.
What to do nowAsk when you can resume normal activity, and if lymph nodes were removed, ask what swelling signs to watch for.
For most people with thin melanoma, normal activity resumes within a week or two of the wider excision. Ask about the specific site, because a wound on a leg or shoulder needs more care than one on the back.
Two things worth asking about.
If lymph nodes were removed, from your armpit or groin, watch for swelling in the limb on that side. It is far easier to manage when caught early than once established. Ask before you leave what to watch for and who to contact.
Sun protection is now part of your ongoing care, and it affects how you exercise outdoors. That is not about avoiding going outside. It is about timing, clothing and sunscreen. Your dermatologist will give you specific advice, and it is worth following properly rather than approximately.
If you are on immunotherapy and feel unusually tired or faint on exertion, mention it rather than pushing through. That can be a sign a gland is being affected, and it is easily checked and easily treated.
Start smaller than you think. Resting on a bad day is not failing.
Part 5Alongside Everything Else
These two do not belong to any one stage. They come up throughout.
18Talking to People and Finding Support
Telling people, and finding the ones who actually help.
Where you are right nowPeople are asking, or you are avoiding telling them, and you may be getting a reaction that does not match your situation.
What to do nowDecide who needs to know this week and who can wait. Then ask your hospital what free counselling and support groups they have.
The two opposite reactions
Melanoma produces two unhelpful reactions, and you may get both from different people.
Some will minimise it. Skin cancer sounds minor to people who have not looked into it. They will say it is only skin cancer, or that they have had a mole removed too, and it will land badly because you know melanoma is not that.
Others will react as though it is far worse than your situation. People who have read old information, or who knew someone with advanced melanoma years ago, may respond in a way that frightens you.
Both are exhausting.
Two lines help.
If you have thin melanoma. "It was caught early. I need one more operation and then regular skin checks, and that is the treatment."
If it is more than that. "Melanoma treatment changed completely in the last decade. What was true fifteen years ago is not a guide to now."
You are also allowed to say nothing at all beyond that you are dealing with it.
Living with skin checks
For most people, the ongoing part of this is surveillance. Regular skin examinations, and watching your own skin between them.
That is a strange thing to live with. You are being asked to look closely at yourself while also being asked not to worry, which is a difficult combination.
Most people find the days before a check harder than anything else. That is extremely common.
Learning what to actually look for helps more than vigilance does. Ask your dermatologist to show you what a concerning change looks like on your own skin, and ask about photographing moles so you have something to compare against.
Telling family and friends
If several close relatives have had melanoma, that is worth mentioning to your doctor. A small share runs in families, and relatives may benefit from regular skin checks. That is a genuinely useful thing to come out of this.
More broadly, anyone in your family with fair skin or a lot of moles benefits from knowing what to look for. You are now the person in your family who knows.
Decide who else needs to know now and who can wait. If you work, you do not have to tell your employer your diagnosis, only what you need practically. Most people need a few days after a wider excision.
Why talking about it helps
A lot of people try to carry this quietly, particularly when others treat it as minor. That is understandable and it tends to make things harder.
Feeling frightened, angry, numb, or nothing at all is normal. So is being fine one hour and not fine the next.
Talking does not fix the cancer. What it does is stop the same thoughts going round on their own at three in the morning.
Talking to someone professional
Most cancer centres have a counsellor or psychologist who works only with people who have cancer, and in most places this is free. Very few people are told about it, so you usually have to ask.
You do not need to be in crisis to see one. Anxiety around skin checks is a perfectly good reason and it is very treatable.
Ask your specialist nurse, who will usually know who to contact.
If you find yourself feeling very low, hopeless, or not wanting to go on, tell your team. Say it plainly. They will take it seriously and they will not be shocked.
Support groups, and why they are different
Friends and family love you, and they cannot know what this is like, particularly when they think it is minor.
- Melanoma groups exist specifically, and they are worth seeking out because the experience is genuinely different from other cancers.
- There are groups for people on immunotherapy, where the practical knowledge about managing effects is genuinely useful.
- Ask your hospital first. A group attached to a treatment centre tends to be better informed.
- Online groups can be excellent, and they can also be frightening. With melanoma particularly, a lot of what circulates online is out of date. If a group leaves you feeling worse each time, leave it.
- Groups for family exist too.
You do not have to do any of this in the first week.
19Clinical Trials
Melanoma is where immunotherapy was proven first, and it is still moving.
Where you are right nowA plan exists, and nobody may have mentioned trials at all.
What to do nowAsk whether any trial is open for your situation, particularly if you have thicker disease or involved nodes.
A clinical trial is a study testing a treatment to see how well it works. It is not an experiment on you and it is not a last resort.
Melanoma occupies a particular place in cancer research. It is where immunotherapy was proven first, and those results went on to change treatment for lung cancer, kidney cancer, bladder cancer and many others. Everyone benefiting from immunotherapy anywhere in medicine is benefiting from people who joined melanoma trials.
Current trials test treatment given before surgery rather than after, new combinations for melanoma that has travelled, vaccines designed for individual tumours, and approaches for people whose melanoma has stopped responding to current treatment.
The before surgery approach is worth asking about specifically. Giving immunotherapy before an operation rather than after is an active area, and early results have been encouraging.
Two things are worth knowing. You can leave a trial at any point, and you never lose access to standard treatment by joining one.
The one decision worth getting right this week is who treats you.
Find a top Melanoma doctorStudies now recruiting
209 Melanoma trials are recruiting now, updated from the public registry.
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