Scared diagnosis is incorrect can I get a second opinion

Hi Rayner89xoxo 

I know we’ve chatted before and I’m sorry to read you’re having issues with your diagnosis. I wasn’t quite sure from your post exactly what’s happened here-am I correct in thinking you believe you might have vulvar melanoma but that hasn’t been identified from your current diagnosis? 

You can certainly ask for a second opinion from another specialist and I’ve put a link here from Macmillan about how to go about this.. 

Getting A Second Opinion

I haven’t gone through this process myself, but I can completely understand why you would want to do this and be clear in your own mind. I hope you can find the answers you need.

Sarah xx

Hi hope you're doing well. Yes that's right lovely 10 weeks of everything from symptoms to professionals to surgical decisions to possible causes leading to it. All screamed vulvar melanoma. Since I posted here too, I've checked some stuff out and asked in my fb group for it, regarding my brain condition that can be caused by a paraneoplastic syndrome, which is a side effect from malignancy lurking somewhere, it turns out many with this brain condition were unfortunately misdiagnosed too. That apparently paraneoplastic related caners require 'more intensive diagnostics' due to certain antibodies present I'm not too sure fully yet I'm researching ins and outs now, but the responses I've had have just made what I'm fearing all the more possible. Thank you for the link I'm clicking on it once I've posted this reply. I just can't believe it's not over this limbo period when I'd been counting down the days to my results regardless of good or bad results I just wanted the unknown waiting to be over. I didn't see this coming haha. Thanks again.

It’s difficult enough having any diagnosis, but to have these extra concerns must be unbearable. I don’t know of you other syndrome, but it’s very worrying that it can be a sign of malignancy elsewhere-no wonder you want another opinion.

I hope the information in the link is helpful and will allow you to get on with getting a second opinion. I believe it’s right that we advocate for ourselves with our own health and speak up if we think more needs to be investigated. Good luck with this and I hope you’ll let know how you get on.

Sarah xx

Thank you obviously I would love to sit and believe it to be true benign, but my gut won't accept it until those tests needed regarding PCD antibodies etc. Are done and answered for sure. To top it all off events from the past 12 months from my partner in crime my auntie who I lived with she suddenly died ending up with me and my 6yo having to leave our home behind start over elsewhere then my brain illness and symptoms starting months ago and now this, it's all bit by bit become too much and it's triggered my bipolar into action I've kept that under control for over 6 years but nope now it's here causing chaos haha. Life sure is testing me these days I'll keep plodding along though doing the needed. I'm waiting to see my psychiatrist to get at least one health dilemma sorted. Thank you and I hope your journey is going well for you I'll be sure to check in again soon. The link was helpful definitely I've since emailed my oncologist and his gynaecological nurse from its information it had, so thank you for the link xx

What a lot you have going on in your life right now-I’m sorry to see your auntie passed away-it’s hard enough to lose someone but having to uproot yourself and your child must have been very distressing. I hope you got some support around you now? 

I’m glad you found the link useful and you’ve emailed your oncologist/nurse. I think it’s very normal to seek a second opinion, and consultants do understand this. 

Sarah xx

Hi Sarah sorry for my late reply it's been full of appointments A&E trips back to school prepping since your message. Thank you yes it's been a lot in one year to say the least lol especially for my little boy I just want us to get back to his happy care free day trips life he's always known. But we will get there again hopefully sooner than later. I've sorted with his primary school to start giving him once a week counselling with family support team incase he gets upset or anything during school so I'm OK if he's OK. I'm awaiting my appointment with a psychiatrist regarding my fragile mind haa. All good things slowly surely. I've today just found something else possibly melanoma vibes that would make sense for what's happened these past 12 weeks. That was this morning so I'm going to ring the dermatologist Monday to try get seen ASAP. I've just had a MacMillan nurse chat on the phone that was helpful and answered today's most concerning questions so that's more positive steps. I'm just still so concerned about my health declining day by day unresolved along with not having much confidence in the medical care I've so far received, don't get me wrong not all of it, but more than what would be expected definitely more than enough to warrant me having doubts in their findings and that's without taking into account my symptoms and today's discovery. I need a spa break!! How are you I hope you're journey is going well for you xx

Hi Rayner89xoxo 

I seem to have missed your reply so I do apologise for not coming back to you.

How are things going? Did you manage to make progress with seeking a second opinion? I’m glad you have some support in place for your little boy and hope you’ll see that helping him. It must be very difficult to be going through all of this with a young child. 

I am doing ok, thank you for asking. Just finding the weather so miserable as I’m sure we all are!

Sarah xx