Caroline, I know exactly how you feel, especially with the time lapse between getting a GP appointment to refer you and the excisional biopsy of your melanoma. I personally have found the entire process very slow, so I understand your concerns. I too have a stage 1 Melanoma [1A] invasive. Original biopsy 11 October, 16 weeks after seeking help. My wide excisional procedure required is not until 3 January 2025. Like you, this worries me, well the entire situation worries me, with so many of us being diagnosed with cancer. I am pleased you have an appointment next week to discuss your treatment plan in more detail. Try to think about what you want to ask, I didn't do this, and am having to do this now. Have you seen your pathology report? Not sure if you were seen at a specific cancer hospital. Did they check your lymph nodes at your first consultation to begin the diagnosis journey? I asked to see my pathology report, and although I did not understand all of it, margins, numbers, clark level etc, what I did gleam from it, was a better understanding to ask more questions, invasive remarks, prompted questions I would not have thought of. I don't know about you, but I was so focused on the fact I had cancer and terrified of what I may be told, I couldn't think of questions to ask at the time, I was simply nodding and in shock. So please, before you go to see your consultant this week think about what you want to know, ask and IF it helps write them down. This is very frightening time which does not help us to be as clear headed as we would like. Keep me posted and all the very best to you. 

Thank you so much for your reply.  It does help to know that someone else is in the same situation.
 I actually had three suspicious looking moles, and of the three, the doctor was convinced that one was a basal cell carcinoma, as it was flesh coloured.  That was the one that turned out to be the melanoma.  So far, I’ve only seen a dermatologist, but on Thursday, I am seeing a plastic surgeon.  I live in N Wales, and my nearest major hospital is 40 miles away.  The consultant I am seeing on Thursday is in N W England, although he is holding a clinic in my local hospital in Wales.  I will have to travel 80 miles for the surgery though.
The specialist nurse who gave me the results this week did give me quite a thorough examination, including the lymph nodes.
i haven’t seen my pathology report, but it’s a good idea to request a copy.  At the moment, I almost don’t want to know, but there’s no hiding from the facts, and as you say, it gives you a good basis for asking for clarification.  
i will keep in touch to let you know how I get on.  Good luck with your procedure in January.  The waiting is almost unbearable, but it will be December tomorrow, which makes it feel closer.

Do keep me posted about your own treatment too.  All the very best for 3 January.

Hi SycamoreGold. I don’t mind you asking me questions at all. After all it is only by sharing information that we can understand each other’s condition.

I don’t mind you asking me questions at all. After all it is only by sharing information that we can understand each other’s condition.

I was initially given the results by the specialist nurse who performed the first excision. I haven’t seen me pathology report, although I have asked my Macmillan nurse lots of questions about it and have a reasonably clear understanding of what they removed. I also have a letter from the surgeon I saw at my hospital appointment 10 days ago explaining the diagnosis and the next steps.

I haven’t seen the pathology report,although I have asked my Macmillan nurse lots of questions about it and have a reasonably clear understanding of what they removed. I also have a letter from the surgeon I saw at my hospital appointment 10 days ago explaining the diagnosis and the next steps.

 To return to my Initial results, of course it was difficult to take it all in, but I was given lots of useful leaflets to read, contacts of the Macmillan nurse etc.  The specialist nurse explained to me that they offer a SLNB because it was a 1 B rather than a 1A.  My  understanding is that the staging is based upon depth and ulceration, both of which make the likelihood of spread more likely. Mine was 1.8 mm, which puts it into the 1B category. Your 1A must have been smaller than 1 mm in depth, which puts you at very low risk of it having spread to your lymph nodes. That is presumably why you haven’t been offered an SLNB, as the surgical risks and after effects probably outweigh the likelihood of finding a positive result.  Thinking back, the specialist nurse didn’t actually say that SLNB  was a foregone conclusion, and I did ask what would happen if I decided not to have one. She explained that I would continue to be monitored for five years with physical checkups. My reaction at that time, was that I would rather know whether or not it had spread. Either way I would be able to have the five-year physical checkups, but as I saw it, finding swollen lymph nodes on one of these, would mean that the disease had progressed and I was that much further down the line in starting treatment.  That decision has never wavered.  I don’t think I want to spend my time thinking what if? I’d rather know,  though I appreciate that any investigation can throw up a false negative.

The specialist nurse did check my lymph nodes and quickly scanned me for any further evidence of moles at that consultation. The lymph nodes were also checked when I saw the consultant at the local hospital, 10 days ago.

As I said earlier, although I am nervous, I am happy with my decision to go ahead with the SLNB. My indecision was based around the two procedures being offered to me. Maybe it was fear and panic that made me opt for the ICG procedure, but I do trust the surgeon when he says that they have been using this procedure successfully for some years. They believe that it is as accurate in detecting the correct sentinel lymph node, but there haven’t been enough scientific studies to prove this and only the gold standard ratio isotope treatment has been extensively studied to date.

My wider local decision will not involve any skin grafts or flaps, so I am reassured by that, as that would be another factor to consider in post surgery recovery.  I presume that your WLE will be done under local anaesthetic, like the initial excision. I didn’t find the initial excision uncomfortable at all, so hopefully yours will go ahead without being top unpleasant.   A bit like being at the dentist, the worst part was injecting me with local anaesthetic!

I know that you don’t particularly celebrate Christmas, but I hope that you manage to relax a little.

it will be good to hear how your procedure goes, and I will keep in touch in the New Year to let you know how I’m getting on.  

Hi Caroline, thank you for your message and explaining everything so well - I now understand much better and why you have opted for this procedure on the 30th. Our differences in the initial stages is that you had a specialist nurse remove your melanoma and I had my consultant remove/excise my melanoma, apart from that our journey is much the same. If I'm honest, I paid privately to have mine excised initially and the only reason for this, is due to being able to see my GP when I first presented with a spreading melanoma, even sending in an image of it, all the red flags showing of the ABCDEs of a melanoma still I could get an appointment. I waited nearly 10 weeks to get that GP appointment by which time it was obvious I had a Melanoma as I was on an urgent pathway to be seen at the hospital, I waited again just over 2 weeks to get seen there too. Yes, they suspected a Melanoma and I was told it would be another 4-6 weeks before I would get called to remove it. The backlog of patients waiting meant they were not able to offer a removal within 2-3 weeks as they normally would. I was frantic, I had just been told I had cancer, a melanoma, alone, no family to return to, and the thought of waiting in all to get it removed 18 weeks was terrifying. From October 4th when it was diagnosed at the hospital within 7 days [11 October] it was removed by my consultant. You seem to have had fairly good response times to be seen, although I'm sure you have experienced some wait which is excruciating in itself when your life is being threatened.  

Back to you: I like you have been offered support, MacMillan nurses to talk to you and explain things, do we really absorb it all, not sure we do, we are so afraid of the potential consequences our ability to take things in can be seriously affected. I can see WHY you opted for this SLNB procedure, absolutely, very sensible, I would have done exactly the same. As you say you could have not go through with it and have regular checks but, would you really relax knowing every three months you would have a hospital appointment looming to know whether or not it may have spread - NO you wouldn't, so I'm pleased you opted for this. This will be a definitive answer for you, instead of worrying and waiting for your next check-up. Similarly, when I saw my consultant for my follow-up and result of the removal of the melanoma, he offered me the same, in as much as, the Melanoma removed was very thin, Breslow thickness 0.6mm not ulcerated but was an invasive melanoma vertical stage of invasion, but had been completely removed and I could just come back every three months for two years and be checked or his ADVICE was to have a local wide excision of the same area, where then I would be followed up once a year, no SLNB was ever given as an option, I think if I had been given that as an option I would have gone with it. I will still probably cover this with him when I go for this next procedure. 

I never had any issues with the first removal nor with the injections to numb the area, which he said perhaps I have a high pain threshold as most people find the injections the most unpleasant part. Neither did I have any issues with the incision afterwards, no pain, throbbing, bleeding, nothing, I would not have known I had surgery. The incision was about 3.5 inches in length to remove the melanoma - I wonder what it will be this time round, but like you no need for a skin graft or flap. Your indecision between the two procedures, I get totally, you have done the sensible thing and we must, as hard as it is sometimes, as all kinds of thoughts go through our head out of fear, we must trust what our surgeons/consultants and nurses tell us. You are now on the path to prevent you from having all those regular check-ups not knowing from one to the next what will be discovered, your decision is both brave and pragmatic. I will be waiting to hear from you after your procedure but appreciate you may not feel too chatty for a few days afterwards, nevertheless I shall look forward to knowing how you got on. Take care 

Thought I’d wish you both a very Happy Christmas and a successful procedure. I met a lady in the hospital when I was having surgery and she had presented with a melanoma on her arm. The melanoma was removed but the pathology results must have shown that there was cancer in the tissues so she was invited back to have more removed As far as I remember, she also had a couple of lymph nodes removed from under her arm. We were both called back to hear our results on the same day and thankfully, neither of us had any further cancer found in the tissue or the nodes.

i was given all the facts about immunotherapy and offered the treatment even though there was no definite reason for having it other than the faint possibility that there could be some cancerous cells lurking about that hadn’t been detected. The other lady was not offered any treatment because she had a heart condition and also has type 2 diabetes. In her case, she will be observed regularly ie. Dermatology Nurse will check her body every few months to ensure that there are no more melanomas. Regular scans will be taken to ensure that nothing sinister is happening in her body. This will be done for 5 years as far as I recall.  In my case, I opted to have the immunotherapy. I was given Pembrolizumab every 6 weeks. I should be having my 3rd treatment on 27th December but because of the Christmas holidays, it will be 1 week later.  I’m perfectly fine and am so thankful to be healthy enough to tolerate it. Only side effects are a skin rash. I use an excellent cream and take a large anti histamine tablet before breakfast everyday. All in all, I am in excellent health. My plastic surgeon who removed my stage 3 melanoma told me that I am disease free. I fully intend to stay that way permanently!!

Best wishes and I hope and pray that you will both be blessed and have a good outcome. 

Thank you for that GrannyRose.  It’s always good to hear of someone else’s experience.  iit seems that although we  appear to have similar conditions, our journeys are all very different. I’m glad to hear that your immunotherapy treatment has been so successful.  It’s interesting that you were offered that, even though no cancerous cells were found after your surgery.
I too I’m trying to keep as healthy as possible, as I’m sure that helps. Physically I feel pretty good for my age (71), but mentally I’ve been all over the place these past few weeks. Now that I know I have an operation in a couple of weeks, my emotions are beginning to settle down a bit.

Best wishes to you for a very Happt Christmas.

Hi Caroline,

Theres no point in me advising to to stop distressing yourself. I think the whole experience is a ghastly shock. Sometimes I couldn’t remember the simplest things. Six months ago I was in the same place you’re in now. It’s beyond comprehension how the mind goes into overdrive but it’s the fact that we are no longer in control. We’re waiting to be seen by this one, that one and the other and we have no say in anything. It’s the fact that one day our lives were happily moving on and suddenly this diagnosis stops everything   Once you’ve accepted these facts, stay calm. Make up your mind that you are not going to allow this “thing” to dictate your life. I remember being very tearful and my husband put his arms around me and hugged me. I knew my situation was having a terrible affect on his mental state too. I went to bed and asked God to please lift this terrible burden from me as I couldn’t cope. I woke up the following morning and the whole nightmare had gone. Gone completely and never returned. I genuinely believe that God will always help us. I’m not saying that he’ll take the cancer away. All I’m saying is that I am free of the hell that had moved into my mind so I have my life back again.  Once you clear your mind, you’ll be able to cope with everything.  
Im sure you’re now wondering what sort of a mad woman I am and I wouldn’t blame you but I’m actually a 75 year old happily married lady who plans to live for years like my mother who was 83 when she died!!  Stay positive. God is there for any of us. You don’t even need to be a church goer. You simply need to speak to him and he will hear you. It’s so sad that people today no longer choose to believe. 
cheers Caroline. Please keep in touch. Stay positive and remember, onwards and upwards. X

Hi Caroline,

I usually come on & reply to melanoma posts asap but I've been away so am just catching up. I'm pleased that you have had a chat with SycamoreGold & GrannyRose & have been able to share your concerns & experience so far. I'm also glad that you don't have to wait too much longer for your WLE & SLNB after such a long, worrying wait. 

I just wanted to say good luck on the 30th & if I can help with any questions or advice please just ask. Please let us know how you get on,

Angie (Stage 3 melanoma patient since 2009)

Hi Grannyrose,

I'm so happy to hear you are doing well on the immunotherapy - long may it continue.

Angie

Good morning Annie,

I hope you enjoyed your few days away. It’s wonderful to be able to say to you that all is well. I know how very anxious I was when first diagnosed but that’s all in the past and the surgery is long over and behind me too. You are so very kind remaining on the forum and constantly offering advice and support to others     The encouragement is seeing that you are a survivor and that is a joy to see. Keep well, keep up the good work and have a wonderful and joyous Christmas. 
Best wishes,

Grannyrose. X

Thanks Angie.

 It was lovely to hear from you.  The more people that you know who are on a similar journey, the less isolated you feel.  I will certainly keep you posted on my progress.  Have a good Christmas.

Hi GrannyRose. Thank you for your inspiring post.  

 I am calming down, largely because I have a surgery date that is very close. It was the thought that I was going to be left in limbo for three or four months that was making me feel so panicky. In that situation, it’s hard not to foresee the worst scenario.  in a way, I think it’s a defence mechanism, because if you think the worst is going to happen, then there’s a chance it might be better when you anticipate.  For me, that’s worse than thinking everything is OK and receiving a terrible shock, which was what happened when I had my diagnosis.  I didn’t really know much about melanoma staging, treatments, prognoses etc.  Why would I? I’d never had to deal with anything like that before.  Having talked to the medical team, read as much information as I can about the diagnosis aNSW shared my concerns in this group, I feel so much better informed.

Now I feel more of a sense of acceptance.  Either it has spread to the lymph nodes, in which case it can be treated,  I will know that it’s there and something is bring done about it.  Of course, if it hasn’t spread, then that’s great news!  Either way, there’s nothing I can change, other than looking after my own health so that my immune system is as strong as possible. Unfortunately, stress does disrupt your sleeping patterns and I am aware that I’m not getting enough healthy rest, but I’m working on it.

I’m nervous about the surgery, but grateful that I’m being given the chance to have it.

i will definitely keep in touch with all of you through this forum.

Hi GrannyRose. Thank you for your inspiring post.  

 I am calming down, largely because I have a surgery date that is very close. It was the thought that I was going to be left in limbo for three or four months that was making me feel so panicky. In that situation, it’s hard not to foresee the worst scenario.  in a way, I think it’s a defence mechanism, because if you think the worst is going to happen, then there’s a chance it might be better when you anticipate.  For me, that’s worse than thinking everything is OK and receiving a terrible shock, which was what happened when I had my diagnosis.  I didn’t really know much about melanoma staging, treatments, prognoses etc.  Why would I? I’d never had to deal with anything like that before.  Having talked to the medical team, read as much information as I can about the diagnosis aNSW shared my concerns in this group, I feel so much better informed.

Now I feel more of a sense of acceptance.  Either it has spread to the lymph nodes, in which case it can be treated,  I will know that it’s there and something is bring done about it.  Of course, if it hasn’t spread, then that’s great news!  Either way, there’s nothing I can change, other than looking after my own health so that my immune system is as strong as possible. Unfortunately, stress does disrupt your sleeping patterns and I am aware that I’m not getting enough healthy rest, but I’m working on it.

I’m nervous about the surgery, but grateful that I’m being given the chance to have it.

i will definitely keep in touch with all of you through this forum.

Please try not to worry if you can. Stay as positive as you can. I was like you, constantly reading and educating myself on all eventualities. Understanding the situation does actually help. I also visit Melanoma.org.au .along with Melanomafocus.org which is full of tactual information and so well explained. 
Niw to give you something else to think about!!  I’ve read that it’s VITAL to have what’s called a HEALTHY GUT.  We are advices to eat high fibre foods, seeds, blueberries, avocados, NI WHITE BREAD OR RICE. Change to good quality foods and buy organic when possible. It makes good sense really. We are what we eat! I take probiotics in the form of drinks and yoghurt. 
I did masses of research about having immunotherapy treatment and found that there are certain medications that shouldn’t be taken when or before having treatment. Antibiotics are the first and Omeprazole ( protein inhibitors) I had been taking it for years as I suffered bad reflux.  Not taking Pepto Anuseed liquid which I only require occasional. Google antibiotics and immunotherapy as better explained online. Another one is BETA BLOCKERS.  My GP wasn’t aware of these drugs and their affect on the treatment. Lift your mind by educating yourself and making changes to your diet. We all need bacteria in our guts to keep the system working perfectly. 
start believing that you’ll be fine. Help your body to help the fight. Enjoy Christmas with your friends and family and put all of this out of your mind if you can. Dress up and look your best. Treat yourself to something that’ll make you happy. Embrace life and stay positive. 
All the very best. X

Great advice, GrannyRose.  I actually joined Zoe Nutrition 2 years ago, and have changed a lot of things about the way I eat.  Radically cut down on Ultra Processed Foods, loads more fibre, and I eat many more nuts, seeds and plant-based meals, although I still eat fish and meat, just not as often. Also lots of fermented foods to help the gut.  Hopefully that has put me in a good place health-wise, although Christmas is always difficult to navigate healthily!

Thanks also for the website references.  I'll definitely have a good look at those.

Caroline ️

Time has passed and I’m wondering how you are and how you coped with your surgery. My surgery was late June 2024 and today I saw a Lymphoedema physio   My upper leg retains fluid down to my knee but I find that walking has helped.   Anyway, we discussed a compression garment and in fact he was able to give me a pair of cropped pants. Such a laugh getting them on!!  Not easy but eventually managed to pour myself into them. Been on me for 3 or 4 hours now and find them extremely comfortable. Big plus is I look slimmer!!  
Forgive me, moving on too quickly!  How is your leg?  Please let me know and if I can offer any advice or help you only have to ask. 
look forward to hearing from you. R

Hi Grannyrose.  Lovely to hear from you.

Sorry to hear that you’re still having trouble with your leg even after all this time. I hope that the compression shorts work.  It can’t be much fun having Lymphoedema for so long.  

My surgery went very well. The scars on my right arm where the melanoma was and the SLNB scar  are both healing well.  They felt very tender for quite a few weeks but I’ve got a lot of mobility back in my arm now and have just started going back to Pilates classes.  I have found that over the weeks,  because of not moving as much, my shoulders and back have become quite stiff.

The left leg, where I had a dysplastic naevus Is another story altogether. Although this was also a WLE, it was nothing like as deep as the one on my arm. However, because it’s just above my knee and in such a stretchy place, the stitches gave way after two weeks. I ended up in the local minor injuries unit, where they patched it up with Steri-Strips, and since then I’ve been under the care of the local District Nurses, who immediately removed the strips and insisted that I let it heal itself.    Between us, we’ve tried all sorts of remedies, dressings and ointments, but it’s not healing much and it’s basically still an open wound.  

Still, the good news is that I saw the consultant 10 days ago, and there is no evidence of spread in either the melanoma site or the 3 lymph nodes they removed.  I know that I can’t afford to relax completely, and that I still have to be really vigilant , but I was so relieved to hear her saying those words.  Putting up with my leg is a minor inconvenience in comparison!

Thanks once again for getting in touch and the best of luck with your own treatment.

Caroline, that is absolute terrific news and I’m so happy for you, you must be a very happy lady. 
Be careful with the open wound as you do not want it to become infected   Is it beginning to show signs of healing over after it split?  I’d go back to the dressing clinic as they are there to support you. They may put something onto it to help it to heal.  Rather than cause it to open again,  I would try to put my leg up as often as possible. Did they not suggest using paper stitches or something like that?

please let me know how you get on. X

That's great news that it hasn't appeared to have spread. Examine your lymph nodes regularly and keep up with your check ups. Sorry that your wound is struggling to heal though. Hoping that will sort soon.

Thank you.  Yes, I’m seeing the district nurses twice a eweek.  Trouble is I see a different one every time I go, and they all have their own ideas on the best way forward. For the past week, they’ve been packing the wound with silver impregnated tape and covering with a dressing, which seems to be working a bit better.  I’m going to see them in a couple of hours so .

Caroline x

Thank you Lyns21.  We tend to think of the skin, but the lymph nodes are really important too.  I feel as though I’ve been very lucky this time, especially as I delayed a bit before seeing the doctor, not realising how dangerous a flesh coloured lump could be.  I now consider myself to have learnt probably the most important lesson of my life, and will definitely be more vigilant from now on.

Caroline xx 

Caroline7124 said:

packing

That sounds good to me. So glad that you’re being well cared for. Another week or two will make a big difference. It’s like a struggle now but before long, it’ll just be a memory   All the very best.