Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

To have a Sentinel Lymph Gland Biopsy or not??

Gardener1
Posted by

My 22 year old daughter has bred diagnosed with stage 2 melanoma thickness 1.12. We have an appointment  next Wednesday to say whether she wants the biopsy. She is really scared of the potential for lymphadema and already has thicker legs And always has. The hospital keep telling us the biopsy doesn’t increase survival rates the example she gave was someone who just goes for the regular checkups and self monitors lymph glands because they don’t want to know or the person with a family who wants to plan for the future! She says she doesn’t know what she would chose. We feel so confused and helpless. Her Melanoma was on her calf so it would be Groin lymph glands which I’ve read can be subject to more Lymphadems than other areas

MoiraA
Posted by

Hi

I am really sorry to hear about your daughter.

I think the hospital has been a bit unfair to use two such extreme examples. It sounds like they are trying to push her towards having the SLNB. That makes me wonder why.

I know I am jumping ahead, but if the SLNB is positive, are they going to push for her to have a lymph node dissection, to clear all the lymph nodes in that area? Is that their standard treatment plan?

I won't mention more about the pros and cons of that now, because it is about the step after the one you are considering at the moment. Hopefully that scenario will never be discussed because there will be no need for that discussion.

So, if she proceeds and the SLNB is negative, it will be a relief and will confirm that there is a lower chance (but still not 0% chance) that the melanoma has spread.

If the SLNB is positive, what will they do with the information?

All the best

Moira

Gardener1
Posted by

Hi Moira1

Thank you so much for replying. We are so confused as her consultant does keep saying there is no evidence that proves that the biopsy extends survival rates and I have read that from various sources, the consultant also said that the biopsy can provide false positives which mean removal of glands for no good reason this was in response to me asking why removal of all the glands isn’t a good thing and she said cancer can spread in other ways. But it seems terrifying to leave it to just the regular 3 month month check up ton just watch and wait. One minute I’m thinking the biopsy is a good idea and the next not a good idea, but of course it’s not my decision at the moment my daughter is thinking not to have it particularly as she looked at scary photos of lymphodema

The consultant also said if my daughter did chose the biopsy and they found cancer cells they would remove all the glands and offer a PET scan

latchbrook
Posted by

Hi  and a warm welcome to the online community

I'm sorry to hear that your daughter has melanoma and I completely understand how confused and scared she must feel at the moment having myself been diagnosed with stage 2a melanoma (Breslow thickness 1.45 and ulcerated) on my upper arm at the end of November 2016.

I too had to make the decision about whether to have the SLNB or not. It was explained to me by my consultant that having a SLNB would not prolong my life but it would help the oncologist know if the melanoma had spread to the lymph nodes. I too was worried about the possibility of lymphoedema and talked the pros and cons through with the plastic surgeon who was going to do the operation if I decided to go ahead. 

In the end I decided to have it done, based partly on the reassurance of my chat with the plastic surgeon and partly because I can be a bit of a worrier and I didn't want to think a few years down the line "what if I'd had it done". However, there will be many people who decided not to have it done and are happy with their choice, it really does come down to personal choice.

I hoping your daughter might find this booklet Understanding melanoma - lymph node assessment and treatment useful to read. It goes through what the surgery involves and the pros and cons of having the procedure. She may, of course, already have been given written information by her skin cancer nurse specialist (SCNS). Has she had a chat with her yet? I found mine very helpful when I was trying to make the decision.

I'm more than happy to answer any questions about the procedure if you think it would help your daughter.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Katsil
Posted by

Your daughter shouldnt get lymphodema from slnb as they only take one or two nodes and the others will compensate. Its the clearance that can cause it. She cant be forced into the clearance if its positive it should be the patients choice not the hospital.


Kate

Xxx

If you want to know the way ahead ask those coming back. (African proverb)

MoiraA
Posted by

Hi again

Given that you are already into the debate, you may be interested in this article:

http://www.ascopost.com/issues/september-25-2017/is-complete-lymphadenectomy-still-standard-of-care-in-melanoma/

I think it explains very well why some oncologists are recommending lymph node dissections, while others are not.

All the best

Moira

Cattis
Posted by

Hello Gardener1

I am sorry to hear about your daughter's diagnosis. I too have only recently been diagnosed and am currently having to make the same decision as to whether or not to have a sentinel lymph node biopsy when my wide local excision is performed. It is hard to weigh the pros and cons and, like your daughter, my main concern is the risk of permanent lymphoedema. My SCNS explained the choice in a different way and this is what she said. It's really to with how your own headspace and how you deal with unknowns. If you like to know as much as possible about everything and would absolutely have to know whether the cancer had spread to your lymph nodes or not, then go for the op. If, on the other hand, you can deal with a level of uncertainty (and remembering that you're now going to be self checking every month and having 3-monthly check ups at the hospital) then you might think, 'You know what, this procedure involves risks and isnt going to increase my chances of survival so I'm just going to get on with my life and not worry about the future,' then for you the choice might be not to have it done. 


I haven't made up my mind as yet but think I'm tending towards not having the SLNB but I'll ask my specialist nurse tomorrow what would happen if I have it done and there's a positive result, I.e. the melanoma has spread to the sentinel node. I think she said that they would then recommend the removal of more lymph glands but again, the decision to have that further op would be up to me. 


Another thing she said is that if you're going to look for information on the internet, then look on sites like Macmillan and Cancer Research or other reputable sites. There are plenty of scary stories and images and they're not going to be helpful. And a few last words that I personally have always found keep me in a positive frame of mind - if there's a 10% chance that something bad is going to happen, that means there's a 90% chance that it won't. I wish the chances of winning the Lottery were that good!



Cattis
Posted by

P.S. I just found this, 'Melanoma: sentinel lymph node biopsy - yes or no?' and think it has helped clarify the things I should consider when making the final decision about the SLNB:

https://www.nice.org.uk/guidance/ng14/resources/sentinel-lymph-node-biopsy-yes-or-no-pdf-250598414

latchbrook
Posted by

Hi  

I think that's very interesting and useful. 

I've bookmarked it for future reference so thanks very much for finding it.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Tiptoes12
Posted by

Hi Gardener

I know you are getting some wonderful advice but I just thought that I should perhaps add a couple of things.  When I was given the diagnosis by my skin cancer nurse she gave me a grid chart with pros and cons on it.  Looking at it again it was produced by NICE.  She merely told me that using this chart I had to make up my mind for when I saw the surgeon in another hospital.  The only other thing she said in a slightly threatening manner was that I would not be accepted on any trails unless I had this done.  I felt at this stage there was no option.

What then surprised me was that when I got to the surgeon he looked me over and explained I would be having the 2 things done.  He then introduced me to the skin cancer nurse in his department.  I asked her about the grid chart and why he hadn't asked me what my decision was.  She had never heard of the grid chart and as she had said she would come and see me on the day of the operation I said I would bring the chart along.  Silly me to take anyone at their word, she never turned up so she never saw the chart.

Tiptoes12
Posted by

Gardener - they are trials and not trails of course.  I really should type with glasses on and not rely on touch typing!

Gardener1
Posted by

Hi Tiptoes12

Thank you for that, it has helped clarify things, it wasn’t something the hospital told us about. We have been told she will have regular 3 month checkups, I hope they are better than the diabetes team at the same hospital as my 6 monthly appointments are 12 monthly at best and it’s now up to 18 months


Gardener1
Posted by

Thank you for your replies Moira, it means a lot. 

Gardener1
Posted by

Latchbrook

Thank you very much for this booklet, all the information you lovely people have provided is really helpful

Erika

Gardener1
Posted by

Hi Cattis

I’m sorry you are also facing this. I read your reply to Charlie, in fact she’s read all the replies and it certainly made her feel less alone and more informed. She has now decided she is going to have the biopsy. 


I don’t know how to post to all you brilliant people who responded to my panicky pos, so I will just say thank you here, it has really helped. I wish all of you the very best wishes and good thoughts, 


One thing the consultant said was for Charlie to take 25mg Vit D3 daily as it supports the immune system I don’t know if you’ve also been told this but I thought Id mention it