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??

robn2910
Posted by

I had my slnb back in 2011. It came back with what proved to be a false negative and I ended up with an infection in my armpit, sepsis and further surgery and an open wound. I was unlucky but this is only an indicative process and there are risks so go in with eyes open. 

Proper lymph node checks each month and quarterly reviews at the hospital actually picked up the cancer in different nodes in my case, so the biopsy was an unnecessary painful experience for me.

Gardener1
Posted by

R thatshorriblr that you had to go through that. I’m really scared of false positives, my daughter has her last appointment prior to wide incision and lymph node biopsy it’s so scary

latchbrook
Posted by

Hi

I was wondering how your daughter got on with her WLE and SLNB. The last time you posted you said that she had decided to go ahead with the SLNB after initially having doubts but we haven't heard from you since.

Hope everything went okay

x

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

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Gardener1
Posted by

Hi Lachbrook

My daughter had the wide local incision and lymph node biopsy 3 weeks ago. Despite the thickness only being  1.12 theyfound some cancer cells in the lymph node they removed and itsbeen restated to a 3. She has an op next week to renove all lymph glands in her groin and is scared of lymphedema Thewound got infected and the infection only subsided after trips to the oncall doctor, our Gp, our local A and E and the hospital where she had the op and 3 lots of antibiotics,she is still having it dressed every couple of days  

Even as I write all that I still find it hard to believe it’s true, even though I spend much of my time wakingand sleeping thinking and worrying about it. 

Thank youfor asking about her that was kind 

DAAD
Posted by

Hi , I’ve just seen you post.  My hubby had all his lymph glands removed 3yrs ago  after his initial MM .He also had infection several times & was in hospital on intravenous antibiotics.

Just thought I’d comment on you concerns of lymphedema.i too was very worried but somehow you find strength & get through Hubby did have some after the op on his Leg. He wasn’t  incapacitated even though it was a little uncomfortable. But now it seems to mainly gone , but ask you consultant to explain about the operation & possible after effects.

I do hope the operation goes well . X 

Gardener1
Posted by

Thank you so much for your reply. My daughter is 22 so having the huge scar and dip in her leg is a big thing to cope with but when her nurse said it’s 50% chance of lymphadema and she made the mistake of googling and saw people with huge swollen legs. She is however very sensible and will follow all instructions. 

I don’t know about your husband but we got lots of info on pain control but nothing on possible infection I don’t think going to 4 different places as we were requested to do helped

latchbrook
Posted by

Hi

I'm very sorry to hear that your daughter's SLNB came back positive and I can understand why you must spend a lot of time worrying about it. However, treatments for melanoma have really advanced in the last few years and there are many stage 3 people in this group whom I'm sure would be willing to tell your daughter about their experiences if she wants to ask any questions or just generally chat.

Please come back and let us know how next week's operation goes and give her my best wishes.

x

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

What is a Community Champion?

DAAD
Posted by

Hi  I can imagine being so young it’s a hard thing to think about . Yes I googled too , worst thing to do, but understandable as you want to know what dealing with . 

Yes hubbys leg was fat but nothing like pictures showed and although scar is fairly lg. He did have pain but all competely contolable . We were given antibiotics so that  as soon as any sign of infection we were able to start treating straight away .

when we were on holiday a pair or swimming shorts covered the scar , but being a man he didn’t worry about it anyway but I can understand how she may be worried 

IF she does suffer with lymphoedema. Macmillan have a booklet to give you lots of info .we were also lucky enough to be given a specialist lymphoedema nurse who also able to give massage guidance. .but hopefully your daughter will ok and as you say sensible & looks after herself then things will work out positively for her . 

1 step at a time 

Good luck with everything x 

Gardener1
Posted by

Thank you. Her oncology nurse in the multi disciplinary team said she will refer her to the lymphodema specialists sooner rather than later rather than waiting to see if anything develops but her op is Thursday so I think we might ring her. 

Gardener1
Posted by

Thank you for your kind words. It makes a real difference having people to talk to. My daughter is dealing with it all by saying it’s crap but you just have to get on with things and carry on enjoying the same things you always enjoy. I try not to irritate her with have you put sunscreen on, have you taken your vitamin D? 

DAAD
Posted by

Hi,

great that you’ve good support team  around it helps a lot .my son always says , don’t worry till know anything to worry about . Don’t know where his sensible head comes from sometimes 

im sure your doing what every Mum does . it’s all part of job description  . I’m the same with hubby ! 

Hope all goes well on Thursday and for positive results . X 

latchbrook
Posted by

Hi

How did your daughter's operation to remove her lymph nodes go? I think she was having it a couple of weeks ago so hopefully she's beginning to feel a bit more comfortable now.

Give her my best wishes

x

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

What is a Community Champion?

Gardener1
Posted by

The op was on 30th August and she finally had the drain out today. The big ‘shark bite’ looking scar is almost healed on her leg and now waiting for the lymph glands  removal one heal it’s still quite painful and she feels the skin is quite numb though she is also getting tingling from the nerves. Everyone who sees her shakes their head and says you are too young for this, which doesn’t feel helpful. 

Her oncology nurse asked her whether she would like to be referred  to the specialist centre in our area and she suggested she consider the latest , I think she called it adjunct therapy. She said it should target any stray cells that might have escaped the lymph glands. I would be very glad if she has this as I think when they did the CT scans the other nurse said they didn’t find any other inflammation other than where they expected to see it which suggests to me that more than the one lymph gland removed for the sentinel biopsy might have shown up. 

My daughter wants life to get back to normal and is itching to get back to work as a primary teacher but I don’t think she should go back till at least both wounds fully healed. 

Sorry for the long reply, it feels like living in some sort of hidden parallel universe. 

latchbrook
Posted by

I'm glad to hear that your daughter's operation went well  and that everything seems to be healing nicely. Although I didn't have all my lymph nodes removed I did have a WLE and SLNB so I know what she means when she says that her skin feels numb. Mine did too and it probably took close to a year before all the sensation returned.

The oncology nurse was probably referring to adjuvant therapy which can be given to stage 3 melanoma patients as part of a trial. This page from Cancer Research UK gives more information. There are several people in this group who are stage 3 and are on these trials so your daughter could ask about their experiences once she knows more about which trial she could take part in.

Obviously the decision to have further treatment has to be your daughters but she might find it helpful to be able to ask questions on here. I can understand that she wants to get back to normal but her health and not work should be her priority.

Wishing you both all the best

x

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

What is a Community Champion?