Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Stage 2 - what to do, and an argument with a medical secretary.

latchbrook
Posted by

Hi

Yes, mole mapping is something that intrigues me too as I've never been offered it. However, I know that is going to be having this done and she said she'd let me know what's involved afterwards. I've tagged her into my reply to you so that she can hopefully let us both know.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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latchbrook
Posted by

I didn't know that you'd had a problem with an operation on your colon  so I can understand why you'd want to know everything that's involved in having a WLE before going ahead with it.

I've always found that the best person to ask questions of is my skin cancer nurse specialist (SCNS). As you quite rightly say, you don't always see the same person twice but your SCNS can access your records and find the answers to any questions you might have. You should have been given a card with your nurse's contact details on. You'll probably find that you have to leave a message and she'll then get back to you when she's not in clinic.

Yes, I was surprised about the disabled classification and you can find out more information by clicking here. I think I should have said that you are classed as having a disability rather than classed as disabled, which means that you are protected from discrimination at work.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Tiptoes12
Posted by

Thank you for offering to do that.  I have been told by the doctor who checks my son that 70% of melanomas come from new moles and my son is gradually adding to his collection as time passes.

xx

Miranda2
Posted by

Hi ,

I have been away from the site for a few days only to find that Latchbrook has already written exactly what I had planned to write myself when I got the chance. 

What I would like to add is the following. What makes all of this almost surreal is that we are often diagnosed with a potentially deadly disease when we feel just fine and we are fully engaged with our families, our friends and our work and living life to the full. A diagnosis out of the blue suddenly plunges us into another world. We are no longer spending our days with dynamic, energetic people, but in the waiting rooms of hospitals. No longer planning business trips but surgeries! I used to feel as if everyone else was driving powerful cars on a smooth sunny motorway and I was in a parallel universe pushing a wheelbarrow uphill on a pot-holed road. Your whole world changes and it is very, very difficult to really believe that a small lesion could truly be so dangerous.

Concerning dates, I have never had a choice. I mentioned earlier that I had to have two WLE operations as the first was not sufficient to get the right safely margins. I know for sure that my second WLE operation meant that several wisdom teeth extraction operations were postponed (the parents must have been furious that those operations were postponed into the school year rather than taking place during the school holidays!). Even on the morning of my operation, I was all prepped, fasting as required and then told that the operation would be late afternoon as the surgeon had to deal with the unfortunate victims of a car accident. I can definitely confirm what Latchbrook says about the many different types of priority surgeons must manage to ensure their patients get the appropriate care. They are judged and measured on providing the care in a timely manner. If they consider that you are a priority, then you ARE a priority. Their schedules are driven not by patient preferences but by which patient requires the most urgent treatment. Again, a very different environment to a business environment where we always consider the customer is king and ensure his or her preferences are taken into account.

Please do put your own health first. Put this melanoma story firmly in the rear-view mirror. If you take risks and your health deteriorates you will not be able to work. And having a good pension will meaningless if you are not there to benefit from it.

I hope you will not be offended by this straight-talking but I do feel very concerned that you are putting your work commitments and your pension before your commitments to your self. You must be your own top priority right now. Doing everything you can to ensure the melanoma does not come back is your priority. Not an easy call to make.

I hope this helps to let you know that we know the heartache that goes hand in hand with all of this, the feeling of why me, the feeling of being overwhelmed by a situation we never sought nor expected. 

Take care

Miranda

latchbrook
Posted by

Hi

I'm glad to see that you've found all our experiences helpful and I wondered if you'd come to a decision about when and whether to have treatment for your melanoma yet?

Wishing you all the best with whatever you've decided to do

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

macshimi
Posted by

Yes, I have an appointment between xmas and new year

latchbrook
Posted by

Hi

I was just checking in to see how you were doing. Do you have the results back from your WLE yet?

Wishing you all the best

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

macshimi
Posted by

I haven’t heard anything back after the wide local excision, which my case is a “not wide but VERY deep local excision” all the way down to the muscle. 

I don’t know when I will hear, it took 2 months for the CT scan to report back that I have a suspect lymph node and thyroid.

Recovering at home and getting use to looking at a very ugly hole in my leg. Not allowed to walk any distance, or drive, and certainly cycling is a very distant option. I have to sit with my leg elevated which leads to extreme boredom.

 I see the surgeon at the end of the month.

Sailor2
Posted by

Hi macshimi,

The surgeon who you are seeing at the months end will have all the info you need, so think up all the questions you want to ask for that appointment.  Personally I make a list on my phone and go through them, making notes of the replies so as not to be confused later as there can be a great deal of information to digest.

Like you I had a rather ugly scar (reminiscient of a shark bite) following my WLE and to be honest its never going to win any prizes at the beauty contest.  That said, the swelling and scars improved dramatically over the first year with daily massage using vitamin E cream. Now after 30months it is dramatically improved.  I expect yours will too.

I hope your leg is well enough for you to resume walking & driving very soon and cycling not long after.

Take care

J

Don't wait for your ship to come in, swim out and find it!

latchbrook
Posted by

Hi

I'm glad to see that you've received a positive story from Sailor2 regarding how your leg will hopefully recover.

My WLE was on my upper arm and instead of a hole I had a very pronounced ridge. As the wound healed the ridge sank leaving me with a nice flat surface. Three years on it's hard to see the scar and it was very large as I had to have a 2cm removal of skin all around and below my melanoma.

I was given the results of my WLE and SLNB when I saw the plastic surgeon 2 weeks after the operations so hopefully your surgeon will have your results when you see him in a couple of weeks time.

Do pop back and let us know how you get on.

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?