Choroidal Nevus increasing in size

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Choroidal Nevus increasing in size

Postby Mithrandir63 » Sun Aug 20, 2017 5:36 pm

Hello,

I had an enhanced eye test on Friday that included follow-up Optomap and OCT imaging of a "small birth mark" under the retina of my left eye. My optician showed me the comparison of images taken on Friday with those from 4 and 2 years ago which show that the size of the nevus has noticeably increased (to me it looked like the biggest increase was between 4 and 2 years ago and the most recent one looked very similar to the 2 years ago image.

My optician gave me a choice between continuing to monitor it as it is not affecting my vision, or a referral to opthamology for a second opinion with possible sonography to determine the thickness etc. Since I have limited sight in my right eye due to a childhood accident, and since the noticeable change in the images was concerning to me I opted for the referral. My optician agreed that this was a good decision, and will be making a referral to the opthalmology department I already attend annually due to a condition affecting my cornea (although not due to attend again until March). It will be a different clinic within the department, hence the need for a new referral.

Needless to say I am pretty anxious about this, and am in for an anxious wait as my optician said that there will likely be a three month waiting time as the referral will be routine (it might be longer than this as I live in the UK and NHS waiting times aren't getting any better).

My optician's reaction to it gave me the impression that it is likely not something to be concerned about, however google being a gateway to all things anxiety inducing, I have found myself with a number of thoughts that make me think this may be more urgent than I initially believed.

I wonder if anyone knows how common it is for benign Choroidal Nevi to significantly increase in size over a 4 year period? I am 35 years old, and have come across information that Nevi can increase in size in those under 40 but tend to stabilise with age, and the size increase is usually very small. The size increase in the images is noticeable mainly because of how small in size my nevus is, but it also shifted from a small well defined dark mole shape to more of an asymetric shape. I know it is impossible to diagnose on a forum, but wondered if anyone has any experience or knowledge about this?
Mithrandir63
 
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Re: Choroidal Nevus increasing in size

Postby Catherine Poole » Tue Aug 22, 2017 7:54 am

To be sure, I would get to a specialist in this, even traveling to the city they may be in. Where are you? We can navigate you to a specialist.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Choroidal Nevus increasing in size

Postby Mithrandir63 » Tue Aug 22, 2017 9:13 am

Hi,

Thanks for your reply. I live in the Scottish Borders but regularly travel between Glasgow and Edinburgh. I have been attending a corneal specialist clinic in Glasgow since 2001 due to a condition causing bilateral thinning of the cornea in both eyes (they have not determined the cause and the condition has slowed so I am now only attending for annual monitoring).

I did come across some more information that posterior scleritis can "mimick" melanoma, and I did have a bout of this back in 2002.

If you know of a specialist nearby that would be great, I have been looking into this myself too.
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Re: Choroidal Nevus increasing in size

Postby Catherine Poole » Tue Aug 22, 2017 12:30 pm

You are in a beautiful part of the world where I don't know specialists. There are some in London most likely and you can look under our Global REsources for that list. Sounds like you are getting good care.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Choroidal Nevus increasing in size

Postby Mithrandir63 » Wed Aug 23, 2017 3:22 am

Thanks Catherine. Yes the hospital I have been re-referred to has the only specialist clinic in Scotland for ocular oncology. I know I will be in good hands eventually so I guess I will just have to keep pestering if it is taking too long to get an appointment.
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Re: Choroidal Nevus increasing in size

Postby marti » Thu Aug 24, 2017 9:09 am

Hi Mithrandir,

Personal I have no expertise in ocular melanoma, I am a fellow-patient (skin melanoma) and patient advocate for the Dutch Melanoma Society.

I shared my thoughts about your story on MIF with our Dutch chairman for the Ocular Melanoma group (Dick Plomp), who I asked about getting more testing done soon ( ultrasound, OCT, Fluorescein angiogram) before you can see the eye-oncology specialist three months from now.

As I thought he also advised to get an appointment with an ophthalmologist as soon as possible, it is our belief to react asap on changes of chorioideal naevi, and probably an ophthalmologist can determine if there is any suspicion for an chorioideal melanoma, and can advice you further.

Dick Plomp also has the email address of one of the Ocular melanoma specialists in the US, he has a contactadres in Scotland and there is a European board for Ocular melanoma as well. It looks like you should get an advice of an ophthalmologist.

Ofcourse we both hope its just a benign neavus, just in case....

Kind Regards,

Marti
Last edited by marti on Sat Aug 26, 2017 2:37 pm, edited 1 time in total.
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Re: Choroidal Nevus increasing in size

Postby Mithrandir63 » Fri Aug 25, 2017 4:44 am

Hi Marti,
Thanks very much for following up on this! My referral is to Opthalmology and it has been sent as a routine referral which is why there is a three months wait (ocular oncology follow up of suspected cancer has a 2 week referral to treatment time here).

If I want to be seen sooner I will need to pay for it privately which given my level of concern I would have no problem with but don't know who to contact about it. If you have someone with a contact in Scotland that would be amazing!

Is there a private message system on here for contact details?

Sean

Edit: Just called the opthalmology department to confirmbthey recieved the referral. They said it has been received but still to be vetted for level of urgency so I might actually be seen sooner. The person I spoke to suggested I call again in a week to get an idea about the actual waiting time.
Mithrandir63
 
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Re: Choroidal Nevus increasing in size

Postby marti » Fri Aug 25, 2017 1:32 pm

Hi Mithrandir,

Ok I understand your situation a bit better, hopefully you will receive a phone-call Monday morning to come in soon, but if not:

Yes we can send Personal messages - through MIF, and I will PM you. Will speak to the chairman of the ocular melanoma group tomorrow or Sunday, so will mail you these coming days,

Best regards

Marti
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Re: Choroidal Nevus increasing in size

Postby marti » Sat Aug 26, 2017 2:27 pm

Hi Mithrandir,

Have just send you a private message-through MIF.

Marti
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Re: Choroidal Nevus increasing in size

Postby marti » Sun Aug 27, 2017 12:30 am

Hi Mithrandir,

I received an answer from the Scottish contact:

Any suspicion should be seen in Scotland < 28 days.

The Scottish contact can help you, she needs to know where you live etc, you can contact her - as said in my PM, or PM me with your contactdetails, so I can send your info to her Privately.

Marti
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