Confused and anxious

Hi Huzz26 and a very warm welcome to the online community

I'm sorry to read that you have recently been diagnosed with melanoma. I was diagnosed 4 years ago with an ulcerated melanoma that was 1.45mm thick so have a good idea how you're feeling right now.

It sounds like having decided to have surgery (wide local excision) and a SLNB you are now wondering if you should have opted for a CT scan. It's important that you're happy with any decision that you make so it might be an idea to ask to speak to your consultant again so that you can fully understand the logic behind having a CT scan first as opposed to only having one if cancer cells are found in the SLNB.

It's impossible to know if your GP surgery had correctly referred you under the two week referral system whether it would have changed where you are now so try not to worry about what might have been but just concentrate on where you are now.

I didn't have any young children to tell when I was diagnosed but you might find it helpful to have a look at this information from Macmillan on talking to children and teenagers. You'll see that it talks about the benefits of talking and how and when to approach the subject.

When you have a minute it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thankyou for replying to me. I just feel I have no control over anything anymore. 
The waiting is just so hard! said up to 6-8 weeks for surgery.

my husband and I have been thinking if going private would be a good move. I have no idea what the cost or what wait is for that matter. 

 I presume the specialist nurse is available to contact on week days which I will do tomorrow. she said to contact her if I have further questions, I’ve not spoken to the consultant nor do I have an appointment. 

I have read on here people have waited months. I just keep wondering why one consultant wanted ct scan and the rest disagreed, that is what has put doubt in my mind 

Hi Huzz26

I think you need to know why one consultant suggested a CT scan so that you feel that you've made the right decision. Understanding the reasoning behind it would also give you the opportunity to change your mind if you wanted to.

I'm sorry that I presumed that the person who had given you your diagnosis and talked to you after the MDT was your consultant.

After the appointment with my consultant when I was given the news that I had melanoma it was my SCNS that I spoke to a week later with all the questions I'd thought of since my appointment. 

My WLE and SLNB took place about 10 weeks after the original diagnosis. I did talk to my SCNS about the possibility of speeding things up by going privately but never took it any further so have no idea what the cost might be. 

As you said the SCNS are only available during the week and you'll probably have to leave a message and wait 24-48 hours for them to come back to you, although mine usually gets back to me the same day. Hopefully after talking through the reasoning behind why one consultant suggested a CT scan you'll be able to make an informed choice as to what you want to do.

Do let me know how it goes when you speak to the SCNS

x

Hi Huzz26,

I have found my specialist nurses really useful to contact when my mind has been put in a bit of a whirl due to be talked through 2 different causes of action, like you but not the same. They might not be able to tell you why he suggested a different order for the CT scan but might put your mind more at rest. I was wondering if it had never been an option before to have CT first but in these covid times with delays if it’s a current option they may use for people who are concerned about delays.Do they think under 39 yr olds people worry more ? Or do they give them quicker access to a scan? 

It’s hard to think of questions on the spot sometimes, and sometimes the confident me agrees with one course and then the pessimist me questions things afterwards. I always say to myself each decision is correct at the time you make it, and it’s important to focus on why you made it rather than what the decision was when looking at wether you should change your mind.

I have no medical qualifications and have not had a SLNB which can identify small cells before they would be big enough to form something that might later be seen on a CT scan. (My Melanoma was diagnosed through a needle biopsy after a CT scan picked up many enlarged lymph nodes in my pelvic and abdominal region). I have had many CT scans, every quarter for the past 6 years to look for changes. It didn’t sound like you were avoiding a CT scan because of a risk though, it sounded more like you were confident that it wouldn’t be needed. 

I was wondering if you have asked,

if you opted scan first wether that would delay your WLE and SLNB in any way? (I can’t see that being good)

if they found something scan first , would that effect your planned op ? (I’m thinking sometimes they may do an additional biopsy at the same time, and that can save time)

If they did scan last if they found something could action have been taken more quickly if you’d had the scan first? (If not it really doesn’t matter about having CT done first) 

I must admit my catch all question to medics is sometimes, if it was your decision what decision would you make and why? 

I hope I’ve not confused things, sometimes there no wrong or right just what’s the best fit,  we know what would fit us best so we are given a choice when there no wrong or right.

Thankyou for taking time to reply to me. 
I am not avoiding the CT scan but the usual route is the biopsy and surgery first followed by ct scan. Knowing majority of professionals thought this route gave me confidence but then there is that small amount of doubt as to why one person disagreed. 
I believe doing the SLNB and the WLE at the same time, only difference I can think is CT scan will pick up quicker if it’s spread massively - if shows nothing then would need to go through the SLNB and WLE afterwards and the small cancer cells then may be detected. I’m sure the nurse did tell me that there would be a delay in surgery if ct happened first. 
im going to write all questions down and give her a call tomorrow. 
It’s so overwhelming finding out it’s cancer and also all the further tests. I’ve read up lots about it so I think I have interpreted things correctly but who knows. 
I just want biopsy and surgery to happen ASAP and this is why thinking going private could be an option. I have waited nearly a year to get this far which is why I am worrying more. 

I definitely agree with the positive self and pessimistic self. Sounds very much like me. 

I hope you are doing ok with your ongoing treatment  

Good luck for tomorrow’s info gathering and decision. I hope that will put your mind at rest and that you can go forward with confidence. Waiting for things is a stress challenging time be kind to yourself. 

I haven’t gone private myself I nearly did when my first lymph node was removed but they couldn’t get surgery any quicker than on the nhs so there did not seem any point. 

I’m doing ok on my treatment thank you. I few blips along the way, hence I can identify with the doubt that sometimes creeps in.