Waiting time for SLNB WLE results

Hi Daisy_23 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that your husband was diagnosed with melanoma back in April and I think that the waiting for treatment and then results can be a very difficult time.

Having looked at your timescales I'd say they've been about average when compared with other people's experiences in this group. In fact, to get the results of the excision biopsy back in 2 weeks is very quick as most people wait for about 4 weeks.

It must be frustrating when you were told to expect the results of the WLE and SLNB in 2 weeks, but again I'd say that 2 weeks would have been very quick and 4 weeks is a more normal timescale.

I assume that what you mean when you say that "everything is on hold until we get this staging done" is that you are worried that cancer cells will be found in the sentinel lymph node and your husband will have to have further treatment. I'll keep everything crossed that this doesn't happen and your husband's stage doesn't change from 1b.

Although the consultant can't see your husband in three months time, he should be given if he hasn't already, a contact number for his SCNS (skin cancer nurse specialist). He'll be able to phone her to request to see the consultant if at any time between when he's had his WLE and SLNB results and his first follow-up in December, he finds anything that he's worried about. I've had to do this on a couple of occasions since being diagnosed 6 years ago and they always squeeze you in to see the consultant if you have any worries.

I hope that this might put you and your husband's mind at rest a little.

It would be great if you could pop something about your husband's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. 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.

Hi latchbrook and thank you for the reply. The waiting is terrible.  We are waiting to see if my husband has Stage 3 skin cancer, and I am absolutely shocked we are still going through this process since 6th April when time to treat in a cancer diagnosis is one of the main factors that will affect prognosis.  Early intervention is key but to take 5 months to establish the full extent of staging is not OK. Is this the new normal now we are expecting post covid? 

We will be taking it further in our own way whether its complaints, writing to the MP, anything to share our experience and would encourage others to share their collective experiences also to effect some change.

The SCN contact we have been given has been not helpful at all.  We have had issues with appointments not being made, misinformation, inaccurate information. Our GP information was wrong, someone else's information was in one of the clinic letters.  Getting through the door seems very hard, they constantly talk over you on the phone or finish your sentences so you need to rush what you are trying to say.  We were laughed at when we suggested would it take 6 weeks for results ("i dont know where that has come from but its 2 weeks here").......

Challenging communication and very much trying to minimise things rather than set a realistic expectation, is the theme we have experienced (whilst we have been very polite and kind, despite feeling stressed and irritable).   If we had that honest information, we would have been able to make informed treatment decisions such as paying for a private procedure.  It will be 4 weeks on Wednesday, hopefully if the average is 4 weeks for results we get something next week.

Hi Daisy. 
I’m sorry to hear how long things have taken in your husbands melanoma pathway. 

A similar situation happened to us so I’ll share it with you. My partner had his WLE & SLNB in 2017. Fortunately it was all clear. Last June his derm CNS detected a very small lump in his groin which she thought was suspicious. They did an ultrasound quite quickly to confirm it wasn’t just scar tissue. We were feeling reassured everything seemed to be moving fast & detected early. However he then waited 4 weeks for a PET scan (done end July) to confirm it was an ‘active’ lymph node. Once that was confirmed we were told we needed a biopsy to confirm it was actually metastatic melanoma. Waited 5 weeks for this. 
Biopsy was done mid-September, told 2 week wait for results. Despite chasing every week, we waited 7 weeks for the biopsy result (now in early November). Positive for melanoma (not a surprise!). Told surgery would be needed. In early Dec, got an appointment letter for the lymph node dissection for the last day in Feb (3 month wait). 
He had 2 normal brain scans during this time & Pet Scans showed there was just 1 active lymph node so we trusted everything was stable & this wait time was safe so just waited.
Immediately after the surgery he got severe headaches/vomiting & was bedbound for 2 days. Back to A&E & brain scan showed 4 metastatic deposits in his brain. Actually not surprising after waiting a total of 8 months for treatment. 
He had emergency neurosurgery & is doing well on immuno but it’s incurable as we all know. 

I wrote to the complaints department of the hospital (through PALS) the case was reviewed in a meeting and has officially been declared a ‘Serious Incident’. A full inquiry is going to be made & a report created of why everything took so long. Everyone is incredibly apologetic but unfortunately that doesn’t change what has happened to our lives.

If I had the chance, I would have gone private as soon as we waited more than 2 weeks for tests or results. Don’t be afraid to keep pushing hard for results and asking why they’re not available yet. Inform them you’ll be writing to PALS or higher powers. Obviously my story is the worst case scenario but cancer is fast and unpredictable & I wish so much I hadn’t been so complacent in our journey. 
I really hope you hear something back this week!

Hi daisy how long did it take for you to get wle and slnb results I've been waiting 8 weeks now I told scns a few weeks ago she said consultant was away so would sort out appointment within 2 weeks still not heard anything. I'm going to call on Monday as know my consultant is there on Mondays. I guess strikes has delayed appointments. Hope your husband results were OK.