SLNB - microscopic traces of melanoma - now need CT

Hi,

what a roller coaster you have been on.  I have coming up 3 years from initial diagnosis.  I was stage 2A.  I have a SLNB and mine was inconclusive which was super worrying as they could not tell me either way.  So they found something it may well have only been there any they have it all already the CT is what they use to monitor me.  I have a CT every 6 months currently and high res ultrasounds every 4 months.  I have no idea if I am BRAF positive I think that is a good thing :) I know it is super hard but try not to worry the CT is a strange thing they give me contrast and as they describe it - it gives you a hot flush metallic taste and you feel like you have wet yourself all at the same time HAHAHA i suppose may like menopause??  Try to stay positive and hopefully they have it all already in their lab and be microscopic that is good!!  Have the scheduled your CT???? Any questions you can PM me if you want :) 

Hi spiderdesmond

Thank you so much for your reply. desperately hoping that the CT shows nothing and that monitoring will be what is required plus the medication the oncologist recommends.

I am waiting to hear about my CT scan. the nurse said it could be 2-3 weeks though

Glad to hear you are getting regular monitoring

helen

Hi helen13 im sorry that your slnb was positive and that you are waiting ct scan. Chances are it will be clear so that will be reassuring. The fact that there are only microscopic cells suggest that they having been there very long or they would have formed a tumour and it shows your node has done a good job by trapping the cancer. Also the node has been removed so chances are youre now cancer free. Sometimes they suggest removing the rest of the nodes in the area to stop spread though not every hospital does that now. You may also be offered immunotherapy or watch and wait where you are just monitored closely. I hope you find the forum useful for gathering information and gaining support like i have.

Hi , I am BRAF positive and was diagnosed in July 2015 with melanoma that had spread to many lymph nodes in my abdominal and pelvic areas. (I’m currently no evidence of disease) The advantage for me being BRAF +ve was that my first treatment was for BRAF +ve people only and during the 9 months that I was on that the second treatment I went on Pembrolizumab became available on the NHS. So yes you’ve identified that it’s good in terms of treatment options. I haven’t ever thought about wether it’s more or less likely to spread when you are BRAF positive, it just is what it is. For me it was the Pembrolizumab that’s available for both types that I was a complete responder to back in 2016, but my experience of melanoma is in my profile which you can click on and read. As when I was in hospital there was a feeling I might have lymphoma I know it crossed my mind was a better or worse being diagnosed with melanoma than lymphoma, but it was just a quick whizz past of thoughts that wasn’t worth looking into for me as, it is what it is. 

You mention pain in your ribs and back and not knowing if it’s paranoia or a spread, I think lots of people can identify with that feeling, and you perhaps will never know until you get your scan results, but I think I agree with papermoon that it’s unlikely, and it’s much better to believe the best until your told otherwise, but that doesn’t mean that apprehension will go away completely but we can put it away to worry about it for another day or in my opinion we’d all suffer more from the anxiety than the melanoma itself, especially as we have so much waiting for results. 

I had surgery to remove a lymph node in March this year and I’m on Pembrolizumab again until March 2020, I have scans every 3 months I’ve recently had one last week and my results aren’t due until 11/9 so it’s a good thing to find out what works for you anxiety wise. I find this section a good read https://www.macmillan.org.uk/information-and-support/coping/your-emotions/dealing-with-your-emotions/what-you-can-do.html

One of the things it recommends is talking with close family and friends, or a support group, so I hope we can help with that either by just being here to listen, or giving our experience. I started a blog on here which I add to every 3 months or so just to get thoughts out of my head. My husband likes a mindfulness app, I did try a complimentary Indian head massage and foot massage once through a local cancer support group which was ok but I find it difficult to relax, I’d much rather go for a walk in the countryside, do walking Netball or play PokémonGo. Last week our netball group went on a Motown cruise together down the local river 2 hours of dancing on a boat while the local fishermen on the banks mostly got up and joined in as well, I love that group of friends, they don’t push me to talk about stuff if I don’t want to but are there individually if I do, but a great distraction for me. None of them knew me pre cancer, I started walking Netball back in 2017 when I was about to come off Pembrolizumab and wanted to get fitter than just local health walks. 

I hope you find your thing. 

Hi papermoon thank you so much for your helpful response. I am holding onto all the positive comments to try and get me through until I have my CT scan and get my results. My local hospital doesn't remove the rest of the nodes so have said the treatment will be Braf positive treatment and they may add in immunotherapy. 

Hope you are doing well

Helen 

Hi KTatHome

Thank you for your very helpful response and sorry that you have been going through all of that. Thank you for sharing your coping strategies - I will look into some of them and the link you have shared. 

In terms of the treatment I am assuming the oncologist will talk me through the options once I have my CT results. Its an awful lot of waiting which is the bit that I struggle with.

Thank you again

Helen

Hi , yes before treatment starts they need a scan to be a baseline so they can tell if the treatment is being successful. The oncologist can talk you through the scan results and what treatment options there are for you there will do this usually after an MDT (a multidisciplinary team meeting of oncologists, surgeons, radiographers and nurses who discuss a case and make recommendations for going forward for your treatment. For me they use a CT scan with contrast to look at my head, chest, abdominal and pelvic area. I have to arrive an hour earlier to drink two cups of ...actually don’t know what it’s called. I take a codeword book to have something to do while I’m waiting the scan takes between 10 and 20 mins and then there’s a 10 minute wait afterwards to take the cannula out. 

You mentioned treatment, I wasn’t sure if you’d be interested in the videos from the melanoma patient conference, there’s quite a few but 

https://youtu.be/iWADCmIAw2w Neo Adjuvent and Adjuvant therapy, Dr Simon Grummett, and also

 https://youtu.be/f1MxlEqTbnE Side effects and response to immunotherapy, Dr Pippa Corrie might be of interest. 

There are quite a few people on here who have ipilumamab and Nivolumab, Pembrolizumab, and Dabrafenib and Tramatenib, not many on enco+bini yet. 

Best wishes

Hello again

Just doing an update on where things are with me.

Went for my CT scan - which was fine. The waiting game not so fine! waited 2 weeks which really isn't  that long but clearly is when you are waiting for results. The good news is there was no evidence of any Melanoma spread, so with wider excision clear and the lymph node that showed microscopic melanoma cells gone - I am clear of any melanoma currently. I am BRAF positive so will be referred to an oncologist for treatment. 

The worrying news is that the radiologist on my CT noticed some nodules to both breasts - apparently the MDT are happy it is unrelated to the Melanoma - so now on the 2 week rule for referral to breast clinic. So the worrying continues. 

Full of mixed emotions today!

Helen

Mixed emotions indeed , you could look on it as lucky that you had the scan for the melanoma, as if the nodules turn out to be something to investigate this will have been done really early, giving you the best possible scenario. My CT scans show a nodule on one of my lungs, I’ve been told to think of it as part of me as it hasn’t changed at all in the last 4 years. I hope something similar applies to you but I know it’s difficult to not worry until you get that appointment, but I hope you can shelve that worry during your waiting period. 

Thank you KTatHome. Hoping the wait isn't too long