Melanoma diagnosis

*Apologies for the long post, but I’ve actually found it quite cathartic to write this after a very long few months.

Over the past few months, both before and after my wife’s diagnosis of melanoma, I have continually scanned this forum for any crumb of comfort i could find. I found that although there were a number of forum posts about the diagnosis, it was rare to see "after diagnosis" updates - particularly positive updates where there was no spread to the lymph nodes, which is absolutely understandable as people thankfully get on with their lives. I therefore promised myself to put up a post once we were through the initial diagnosis and WLE/ SLNB for two reasons, 1) to emphasise the importance of getting a second opinion/escalating any moles or marks on your body that don’t look or feel right and 2) to provide reassurance to anyone in a similar situation who like me, has probably gone through some very dark times.

My wife initially noticed a flesh coloured lump on her arm around a year ago, several months after the birth of our first child. She went to the doctors who diagnosed it as a dermatofibroma. A few months passed and we noticed that it had started to turn black, we felt that it was worth another visit to the doctors. This time, my wife was provided an appointment with a dermatologist, who took less than a minute to diagnose it as a dermatofibroma again. We both felt relieved, but still had a nagging concern. 5 months on and the spot continued to change colour and looked as if it was getting bigger and i encouraged my wife to go to the doctor for a 3rd time and demand that it is removed. She was again referred to the dermatologist and this time, the dermatologist decided to remove it there and then.

We waited 5 weeks for the results and were continually reassured by friends and family that if it was bad news, we would be told sooner.  It tends to be the default position of loved ones to try and say something positive that reassures you, but unfortunately the time it takes for results has little to do with the outcome. My wife eventually got a call from hospital and was asked to come in for an appointment in 2 days time.  My wife pushed the nurse for a telephone diagnosis which she eventually confirmed was a positive test result for Superficial spreading Melanoma, 2.1mm Breslow, non-ulcerated, 1 mitosis. The bottom dropped out of our world. Initially we were angry, angry that she was misdiagnosed, angry that professionals had effectively allowed the melanoma to grow for 1 year and angry that 2 opportunities were missed to remove it when the prognosis may have been far better.  We felt let down by the system, her concerns had been dismissed twice and she wasn’t even provided with follow up appointments to check on the growth. However, we agreed to put the anger to one side and focus on the next steps.

We attended the scheduled appointment anyway and the diagnoses was confirmed and were told that she would have a follow up appointment to discuss the option of having a sentinel lymph node biopsy which would determine the staging. Prior to the Biopsy, she was staged as PT3a. If the SLNB was positive you move into stage 3, if negative she would be stage 2a. She decided to have the biopsy, which was scheduled for 3 weeks time.

You read a lot on this forum about “Dr Google”. I spent hours scouring the internet and was amazed by how much of the information was conflicting. It was so easy to land on an internet page that would have you planning your own funeral. However, if you delve deeper, you do find information that helps you, such as this forum. I read a lot about the correlation between Breslow depth and positive Lymph node biopsies aswell as other negative prognostic factors, intermediate tumours of between 2mm-4mm have a c.20% chance of a positive SLNB (the doctor uses this to assist in your decision making for having a Lymph Node biopsy as around 5-10% will have some form of adverse event to the SLNB itself) You read a lot of about survival rates, which can be daunting, however, they do not take into account the individual factors of each case, nor the rapid progress in treatment options (the progress being made really is something)

The surgery itself went as well as it could, my wife was in and out of hospital within a day. The effects of the anaesthetic wore off quickly and although they took a large margin for the WLE she didn’t have too much pain in the arm. There was a little bit of swelling in her armpit but this is to be expected. The surgeon is on top of the post-surgery effects and appointments were arranged fortnightly after the procedure to assess progress. The worst thing for my wife was the fact that she was unable to lift our 17 month year old son for a hug, when she most needed it.

She was scheduled a further appointment to check on the wounds and was told that she would get the results if available at this appointment. We were of course incredibly nervous when the day approached, due to a backlog we were unfortunately kept in the waiting room for over and hour where my wife had effectively already decided the results would show a spread to the lymph node. Disappointingly we were told the results were not available, but the next morning received a phone call from the doctor telling her that they were clear. The WLE was clear and there was no spread to the lymph node. She will now have 3 monthly clinical skin checks for the next 5 years.

We were incredibly received, but also alive to the fact that the battle is not completely over. She is at risk of the melanoma returning, so vigilance is key, especially in the first 2 years.

I guess the overarching message here is to know your body, if it doesn’t look or feel right, get it checked. If you’re not satisfied, get a second opinion. Melanoma is vey treatable the earlier it is found, I still beat myself up for not being more assertive in getting my wife to return to the doctors sooner as I think in my heart of hearts, I always questioned the initial diagnosis. Fortunately we still caught it in time, but the past 3 months have been fraught with fear and concern. We will be writing to my wifes GP and the dermatologist she was first referred to in the hope that they could learn from this misdiagnosis which will help someone else in the same position. Finally, I hope the post offers some reassurance to any lurkers reading the forum, looking for a crumb of comfort, scared about either their, or their loved ones diagnosis that the prognosis if it is caught relatively early is usually good and the initial excision will usually be the only treatment required. Just make sure that If in doubt, get it checked out.

 

 

  • Thank you for this post. I'm glad your wife's results showed no further spread. I've had a mole on my back for years and for the past few weeks the mole has been itching and looked cracked. No blood or anything anyways the doctors has done an urgent referral on Monday and now I have to wait for the appointment. I'm really scared that it will be melanoma. I'm a single parent to two boys I had to get the 6 year old to take a photo of it so that I could send it to the doctors. I'm sat here thinking that I remember this mole getting a bit bigger 6 years ago and I mentioned it to the doctor when I went for my post natal check and I was told it's fine. Now I wish I had pushed it then. I've been fine until these past few weeks when the itching started. The waiting is the hardest and difficult when you have children to look after too. 

  • You're doing the right thing by getting it checked. You're absolutely right, the hardest part is waiting as you're filled with so much uncertainty. If you're like me, you'll be prone to skipping straight to the worst case scenario, but remember, there are many, many steps inbetween. For now though,  focus on the positive. You are taking the right steps to remove the uncertainty and you are taking control of the situation, that is a brave and corageous thing to do.

    I wish you well with your results.

  • Hi,

    Thank you so much for taking the time to come on the forum and give a detailed, informative post about you & your wife's experience, both good and bad. It will be really helpful to those awaiting a referral to see what happens and that Dr Google isn't the best 'go to' information unless one has the time and understanding to filter through research papers and websites like this one and the British Association of Dermatologists. The thing I always try to point out is that melanoma is the most unpredicatable of cancers and that every melanoma patient's mole presents differently so not to get hung up on a Google image that may be similar to someone's mole.

    I'm so pleased that your wife has now received the care she should have received long ago and hopefully your GP and the dermatologist will take note of their failings. I wish you both, and your family, well in the future,

    Angie (Stage 3 melanoma patient since 2009)

  • Thanks AngieT. I must thank you too as your calm and measured responses to other posters really helped me when I was lurking in this forum. 

    On your point about unpredictability of melanoma, you are so right. Pre diagnosis we thought it looked like a dermatofibroma. When it became more sinister it had characteristics of nodular melanoma, however, it was diagnosed as a superficial spreading melanoma. You can Google pictures all day long but you wont truly know until you get the pathology report back. 

  • So, I thought It'd be worth updating the situation. At the iniitial diagnoses a skin check was undertaken and my wife had identified a couple of moles that she was concerned about. The skin specialist nurse said she wasnt concerned but took some photos so they could be monitored for change. The skin surgeon also subsequently had a look and said that he did not think that there was any cause for concern. Fast forward a few weeks and she has had the first of her 3 monthly checkups. She asked the nurse to have a look at the mole and compare to the photos that were previously taken, but the nurse cannot find the photos. The nurse has now decided to remove the mole for piece of mind, but we are now thrust straight back into that feeling of uncertainty whilst we await the results.

    I can feel myself becoming rather angry as it feels as if the whole process has been fraught with incompetence bordering on negligence. To be misdiagnosed twice initially and then for photos to be subsequently lost which would allow for skin change comparisons has caused untold stress and worry.  I maintain my position that we deal with my wife's health first and get angry later, but I do believe their needs to be a review of the standard of care here. Do I make the local NHS trust aware, or does this information assist then likes of NICE at all?

    I'll be sure to update this further in the next few weeks as and when we receive the results.

  • Hi,

    I'm so sorry that your wife is having to deal with this continued incompetence and it may be worth considering contacting PALS (Patient Advice & Liaison Service) at the hospital concerned. Your wife can also consider transferring her care to another hospital if you can get the GP to make a referral. Some hospitals are centres of excellence for melanoma care. We can't mention hospitals here in the forum but if you send me a private message, telling me which hospital your wife is under, I can tell you which is the nearest with a good reputation. If she decides to go down this route I would wait until after the biopsy and results as a new referral will delay this procedure.

    On a positive note, it's not common for a melanoma patient to get another primary melanoma so quickly (neither are linked to each other) - in fact, it's not common for them to get another melanoma at all, but it's always good to remove anything that could possibly be another primary (I've had 6 further moles removed since my diagnosis and all were benign). So hopefully this one will come back benign. It doesn't help you both with the stress and uncertainty but it's something to focus on.

    Good luck xx

     

     

  • Hi Angie, thanks for your response. I will drop you a message with the hospital details.

    I think we are calmer this time around as ultimately, they have removed it to be on the safe side and that is something we were disappointed they didn't do the first time around, so it appears as if some lessons have been learnt at least.  

    My wife also thinks she wouldn't have even considered this mole being anything but normal had it not been for the initial diagnoses. She is checking her body far more intently for anything which doesn't seem quite right and her threshold for she would consider normal has dropped considerably. I think the nurse is probably more likely to err on the side of caution as er now know my wife has some sort of predisposition to melanoma, so like yourself, I do not think this will be the last removal she has.

    Thanks

  • Thought I'd report back to close the circle somewhat. Thankfully the further mole removed was benign, my wife chased her clinical nurse having not heard anything for 4 weeks, she checked the file and gave the good news. Interestingly, no further check up has been scheduled, feel as if we are always doing the chasing so think we will make enquiries to transfer my wife's care.

  • Hi,

    I'm so pleased that this mole was benign but it really is bad that you are having to chase them up for everything. Before asking to transfer to another hospital, first ask her nurse if she is pencilled in for a date for her check up which should really be 3 months after her last one (although they tend to make it 3 months after the last intervention such as her surgery). Depending on the answer you get will add more fuel to your reason for transferring care.

    Angie

  • Thank you for the advice Angie, we will ask the question. I dont even want to know if and how long the nurse had been sitting on the results!