Hi there,

I was first diagnosed Stage 1 melanoma 22 years ago. My melanoma was only 0.7mm deep so I wasn't offered the Sentinel Lymph Node Biopsy. Nine years ago the melanoma was found to have spread into the nodes into my groin & pelvis. We will never know if a SLNB would have stopped that happening, especially as the cancer had bypassed my sentinel node & gone straight to the inguinal & pelvic nodes. There is a lot of controversy as to whether a SLNB helps stop the spread of mm and many surgeons believe it's just a tool to help them stage the patient's cancer. 

Those patients who decide not to have a SLNB should be offered the alternative of regular ultrasounds of the nodal area to pick up any changes between appointments. This is quite a new thing so Dr Google won't show this & there isn't much evidence as to whether this is a viable option as it's not been working long enough to gather evidence.

The side effects (remember Dr Google gives worse case scenarios) aren't as bad as they appear. There is the possiblilty of a 'false negative' result - this is mainly where 2 or 3 nodes have been removed, only 1 has tested positive for mm, but in fact 2 or 3 are positive. This tends to occur in older patients or those who have a very deep and/or ulcerated melanoma. Another possible side effect is difficulty in movement of the area, usually an arm or leg. This doesn't happen often & usually gets better in time. The main possible side effect is lymphoedema (swelling of the limb or trunk because the lymph has to reroute it's path when some nodes are removed & instead it seeps into the tissue causing hardness, skin problems & swelling). The risk of this heightens depending on how many nodes are removed in the SLNB. One or two nodes (which is the norm) - there is a small chance of lymphoedema. I have mild lymphoedema because I had 23 nodes removed in a Complete Lymph Node Dissection but it's treatable & bearable and I had no other option at the time.

I hope this information helps. Only you can make the decision - think about how active you are & if it would cause complications in your everyday life should you have the procedure & suffer a side effect. Also think about whether you need the security of knowing that everything has been done that can be done to ensure (hopefully) any rogue cancer cells have been caught & removed.

Good luck & best wishes,

Angie

Thanks Angie for getting in touch me with Appreciate your message and advice. I'm also very sorry to hear that you had to go through further surgery with complications. 

I have an appointment on Wednesday to discuss further but very wary of the side effects as I am an active person and love to run. My mole was measured at 1.5mm. I would love to live in hope that it was caught early and no rogue cells travelled to the nodes. I wonder 22 years ago if you would have jumped at the chance of a SLNB. I will be monitored every 3 months but I'm not sure if I want to live with the uncertainty with never getting the lymph node removed. It's a very hard decision that nobody can make but myself. I just wish it wasn't optional and they told you one way or another. 

Thanks again x

Hi there. Thanks for getting in touch. Sorry to hear you are in the same position as me. It was a total shock to find out have melanoma and then to have to make such a huge decision as well. I was the same as you and thought there is no need for the lymph node biopsy as only an 'option' but living with the uncertainty might just be a bit too much as it will always be at the back of my mind. Nobody is telling me what to do and nobody can make my decision which is what I'm struggling with. I would just love if it was taken out of my hands. I keep thinking it's only stage 1 and it's now been removed but there is always that tiny percentage a rogue cell could have travelled. I still need to go back and get more skin removed but if I opt for the lymph node to be removed as well they would do both under General. I'm not 100% sure but the nurse thinks the biopsy will be in my arm due to where my mole was removed. I am on the waiting list but have a pre-op appt on Weds.

Have you had the blue dye test yet? I am more scared of the side effects from having the lymph node biopsy. I know the risks are very small.

Lynne 

Hi Lynne,

It is a tough decision, I read so much on the pros and cons. Luckily my surgeon was kinda pushy, he said it was my decision but he essentially made the decision for me to have it done. Probably not very professional but I'm kinda glad as it's taken the pressure off of me haha. 

I will go in to hospital at 8am on the day of the op and have the dye injected. I've been told this is the only part that will hurt. Then they wait a few hours and I have a scan, and they mark my skin where the lymph nodes are. Then I have the operation and they cut where the marks are and remove a few lymph nodes (as well as the wide excision)

I'm slightly concerned about the risks too, but I do believe they're rare and nothing is permanent. I also don't know how big the incision is. I'm more worried about the waiting for the results - I think the waiting is the worst part! 

Keep me updated on your thoughts about it/your decision. It's nice speaking to someone else going through the same thing (although I am sad you're having to go through it too, if that makes sense!). 

D x

I am the same and been reading up on the pros and cons and I'm still so confused as to what to do. I have been speaking with a nurse this week and asking loads of questions but essentially the decision is still up to me. I'm not sure if it's more harmful than good or it would just put my mind at rest. Your surgeon obviously has a strong opinion for you. Like you say it's not very professional but he has your best interests. I was told that I would need to go in the day before the operation to have the blue dye injected and then go back the next day for the operation. I'll find out more on Wednesday. That will be my final decision day. I really don't want to go through it and convinced that it's not spread however I'm not sure if that's taking a huge risk with my life. 

Do you have an appointment for your operation? I'm also a bit wary of getting the side effects which I know are slim but like yourself being young, you don't want to go through problems that were unnessary. 

It is nice to actually speak with someone going through our 'torture' because only those going through this can understand. Family can support you but they don't really understand. 

Lynne x

It is tough, although I'm booked in to have the lymph nodes removed, they said I'm still able to call and change my mind at any time. So that's playing on my mind a bit! Whatever you decide will be the right decision for you though, you're right when you said nobody else truly gets it unless they're in our situation! 

I'm in my final year of university so I've asked them to delay my operation until the Christmas holidays, so I can rest at my family home. I had an appointment come through for the start of January though which is in the middle of my exams, so that's even more stress! I hope I'm able to rearrange.. 

Please let me know what you decide on Wednesday, I'll be thinking of you!