Testing Lymph Node

Hi , I’m sorry to hear of your husband and your worry at the moment. I wonder if all those survival rates are old data, before immunotherapy treatments became available. I know anything less than 100% is scary but Ive always found it looks a bit more positive when you have some real life experience of some people remaining clear after a spread to their nodes.

I’ve had the same type of needle biopsy that your husband has had and then in March they removed the positive for melanoma lymph node. I have been on Pembrolizumab an immunotherapy to help mop up any left over microscopic cells and this will continue until March 2020, with scans every 3 months. It just helps to take one step at a time. I know that week (or two weeks) waiting for results will seem like a long time. I’ve used the action for happiness thread when I’m needing to help my positive thoughts and remember the good things during the day rather than the anxious ones.

https://community.macmillan.org.uk/cancer_types/melanoma/f/melanoma-forum/186504/action-for-happiness---3-good-things

My profile if it helps can be read by clicking on my name you will see I’m currently clear and if you want any info about adjuvant treatment, I’m sure I can find some info/links for you (I like the videos that the melanoma patient conference do of the consultants taking about the treatments) or give you some of my personal experience if you let me know what aspect your interested in, I’m happy to answer what stuff I can, there’s quite a few people on here getting various treatments. Adjuvant treatment started about a year ago as standard NHS treatment. 

Thank you so much for you're reply. It's already reassured me massively, the problem with the waiting is you come up with all sorts of scenarios in your head but it could be absolutely none of them. I'm happy to hear you're currently clear. Thanks for the offer of links and info please could you provide me with info on the adjuvent treatment?

Hi , you might like this video from the melanoma patient conference Dr Simon Grumett on adjuvant treatment 

https://youtu.be/iWADCmIAw2w

And as background to the different drugs available you might like to watch Dr Pippa Corries talk at the melanoma patient conference 

https://youtu.be/f1MxlEqTbnE

I like these as they are talking to patients so it’s aimed at us and our level of understanding.

Pembrolizumab is the drug I’m on https://www.macmillan.org.uk/information-and-support/treating/targeted-biological-therapies/find-your-therapy/pembrolizumab.html

i Hope this is ok as a starter, and you can also discuss things with the Macmillan support line t9 get things clearer in your head. Remember when you see your team if you have further questions they are usually fine about you ringing them up to discuss things you forgot to ask or have become worried about.

Best wishes

Thank you, I'll look at them now. I know we don't have the results yet but I just feel the chances are extremely high that it's related and I'm a planner. My husband buries his head in the sand untihe has to deal with things but I prefer to know what our options are etc and known what questions I should ask/pay attention to so this will help me massively. Hopefully we'll get his results soon fingers crossed

Hi,

I'm after some advise, again! So my husband had his ultrasound and it showed almost certain metastatic involvement of a solitary lymph node, he had a biopsy (we are now awaiting the results) and has been referred to the Christies, who we now have an appointment with on Thursday.

Basically after numerous problems getting these appointments (the original referral had been marked as non urgent instead of urgent meaning we didn't get the ultrasound for 3 weeks instead of a week and we only got this as I chased it, we are now awaiting the results from the biopsy which we were told would take a week, well it's now been 2,  We had been told we should of had an appointment with the Christies by now but hadn't so we only have the appointment Thursday as I phoned to chase this up!)

My Husband is now saying that the pain in his other armpit (which hasn't been scanned) is the same as the one where we found the suspected lymph node and he has a new pain in his shoulder. 

I have tried to do so much research within these last 5 weeks but what I am struggling to understand is, is it possible for one lymph node (guessing it is the sentinel from his original melanoma as it is on the same arm) to not spread to surrounding lymph nodes but to spread across the body to another arm?

Any advise is greatly received as we are currently in limbo with no one to ask these questions to and I'm sure it will be the same on Thursday as that is just the appointment with the plastic surgeon who will be removing the node. 

Thanks x

Hi Ali0161,

If your surgeon is anything like mine, they will be able to give you a great deal of information regarding your usbands condition.

I would reccomend you take a list of questions that you want answered.  Take a note book to write down what is said. The list that follows is the one I used at my early treatment appointments, and often still use now as different issues and treatments come into play.  I hope it helps you get the right information.

Are there any problems I might notice that you need to know about right away?
Are there any problems I need to know about?

How do you know that I don't have other melanoma?
MRI CT PET scans to give indication of spread available? WHEN?

Blood tests to show spread?
test blood for levels of a substance called lactate dehydrogenase (LDH) before treatment. If the melanoma has spread to distant parts of the body, a high LDH level is a sign that the cancer may be harder to treat.

Do you think I have advanced cancer? Or is it IIB?

Will I have some radiation treatment ?
If so what are side effects etc

Which treatments do you recommend, and why?
What’s the goal of treatment?

To cure the cancer?
Help me live longer?
Relieve or prevent some of the symptoms of the cancer?

Are there other treatments?
What are the benefits of these treatments?
What are the risks?
How soon do I need to start treatment?
How long will I need treatment?
What medicines will I get? What are they for?
How should I expect to feel during treatment?
What side effects, if any, can I expect to have?
What can be done about the side effects?
Can I work during treatment?

What are the chances the treatment will work?

How would treatment affect my daily activities?

What treatment options do I have for relieving bone pain or other symptoms?

Are there clinical trials that may be right for me?

What will happen next?

How do I get help after hours or on weekends?

All the best for Thursday and I will look for an update from you.

Take care,

J

Hi , it sounds like you are panicking that melanoma has spread further, and that’s a very normal thought, and it’s a thought that I have been through but I’ve found it useful to shelve. When systemic treatment starts wether that’s targeted therapy of immunotherapy it’s going to work on the whole body, so that’s what I like to keep in mind. It’s easier for me to stay positive like that as I wasn’t able to have surgery to remove my melanoma when I was first diagnosed as too many nodes were affected. 

I am aware that if someone has melanoma on their chest or back there are more sentinel nodes that melanoma could spread to each arm or each groin potentially, you have mentioned your husband’s arm and in your profile that he has had a few melanomas removed. I think it’s great that your keeping tabs on appointments and making sure they happen and as quickly as possible. It’s terrible waiting for biopsy results it’s a very anxious time. It’s a really good idea to concentrate on preparing yourself for the appointments rather than worrying about what may or may not be happening, to focus on moving forward and what treatment will be offered. 

Sometimes when a worry overtakes you it is good to talk it out much better than keeping it in and it allows the mind to move on after a block it might have. It is possible that melanoma can spread, but it might not have, and if it does the system treatment can work everywhere is what I tell myself, I’m in a good place at the moment as I’m no evidence of disease at the moment.

I hope this helps a little

Thank you, this is really helpful as I have asked myself most of these questions recently but I know I wouldn't think to ask them as I would wait for them to tell me. I have written these down and I will provide an update on Thursday. 

It does, thank you!

I really am panicking and feel like it is making me sick. We have 2 young children and another on the way which isn't helping with my emotions, I found myself thinking what if he is only given months. It's all the unknown and waiting that creates these thoughts and he is a very laid back person who's just said thousands of people die every day to cancer, why wouldn't it be me?! Which really doesn't help with my overactive panicking baby brain.

He had one Melanoma removed on his arm which was stage 1b but he then had one removed from his tummy and one from his back, I can't remember the term they used for them but I remember feeling relieved that they weren't Melanoma. That would make more sense but his consultant couldn't find any sign of melanoma anywhere else which is why I just assumed it was from his original melanoma on his arm.

Not long to wait now and then I should hopefully have all of my questions answered, I'm probably putting more pressure on myself to find out all of this information and to research every eventuality as he doesn't do any of this as he doesn't want to know (so I've just been keeping the info to myself) he also doesn't think of the questions he wants to ask until weeks after so I want to make sure I'm there to ask those questions for him to help as much as I possibly can at this scary time for him.

So we had a really strange appointment today. We went in and the consultant seemed very relaxed about it all, said the biopsy came back picking up abnormal cells and none melanoma but they didn't get enough for it to be properly checked, he then felt the nodes that were swollen and again said he was happy it was nothing. I then mentioned the fact that the previous Dr had noted that it was almost certain metastatic cancer and he said he hadn't seen the report (this was the report which was sent to them from my husbands dermatologist) so he asked for a copy of the report which I luckily had as I'd taken a picture of it. He then went away and came back asking my husband a load of questions about his health after receiving the answers sent us for an xray and blood tests and has requested another ultrasound and FNA which will take another 2 weeks to get the appointment. We really don't know what to think about all of this, we went from being told it was metastatic to then being told she was wrong for saying that we should be fine to then reading the report and taking it seriously and sending us for more tests! So frustrating, we just need answers now!