Hi Lisa

Apologies for my slow response to your message. I've been in a bit of a slump most of this month for some reason, poor sleep not helping.

I wonder whether you've had your biopsy and blood results now - I do hope so. I know from my own experience the grinding anxiety of waiting for results like that, the feeling of having no control over something that could be lifechanging. And, as you say, the inability to plan anything at all.

How is your seroma following the surgery before Christmas? Did it get rid of the infection? Did the seroma return - I hope and pray it did not.

I had my 1/4ly skin inspection by the dermatology nurse last Monday. I've seen her at least 6 times since my surgery... she's been aware of my seroma (it's unavoidable!) and has been helpful in sending me to ultrasounds to check it's ok. But this time she told me she wanted to keep doing periodical ultrasounds in case the melanoma returns to the lymph nodes there. I was shocked - as far as I knew, all the nodes had been removed. She seemed very sure that this wasn't the case, that they can never find all of them and, because the seroma prevents her feeling into my groin to check, it remains a point of concern for her. This was complete news to me. I'd been under the illusion that, whatever else, those nodes were gone and the cancer couldn't come back there! More fool me!

Let me know how things are, Lisa. I so happy to have a connection with someone who - unfortunately - has shared the experience of having a seroma with all that that involves. It does make the world a little less lonely. That said, I do hope your seroma has gone!

Kate x

Hi Kate,

I am really sorry to hear you are having a tough time and then suffered the blow of news you were entirely unprepared for. We rely and take reassurance from what information medical professionals give, to find out it could be different knocks your confidence. I feel very frustrated for you.

I am glad that you have managed to see the same Nurse more than once, she is aware of your history and is actively taking control of your follow up care and treatment as opposed to giving you that information and sending you home without a plan going forward. Due to your Seroma preventing a physical check the periodic ultrasounds are another step in your monitoring although clearly not one you were expecting. I can only imagine your shock. 

 When my Seroma was at its worst I realised that there is little to no infomation for people who don’t fall into the normal reabsorption category. It affected my sleep, my mood and no one understood. Seeing your post although I felt so disappointed for you it gave me hope, I didnt feel alone.I wish ther was more I could do for you.

i received a letter last week to inform me that both results were negative at this stage. I feel incredibly fortunate to have received this news after such an anxious wait. I need the tests repeating in 3 months to look for signs of change and will either enter a phase of ‘watchful waiting’ or possible surgery. The news hasnt been without some confusion as the initial letter and conversation with the Dr said the larger mass is on my right side, the result letter states it is on my left!  I know it seems like a small detail but afetr a couple of attempts I have been unable to confirm which is correct. I have also been referred to Urology, this may be connected to the mass or have an entirely different cause.

I am still receiving care for my wound with the Nurse and they tell me it is healing well, I have only seen the same Nurse twice. I am feeling very nervous about what comes next other than the Seroma could finally be gone or it could return. I dont know if there is a timeframe so initially I will feel nervous about resuming the activities I used to enjoy. All of my above seems so trivial.

Poor sleep can be debilitating and the impact is underestimated, I hope & pray that it improves and you have more better days than bad.

I am thinking of you xx

Hi Doug,

I am so sorry to hear of your experiences and then developing a Seroma. I originally posted on here as I felt so distressed and alone and it makes me sad that you feel the same. There does seem to be a lack of support and care for Seroma sufferers. My experience was that I should just go away, be patient, it will go away as that is what happens for most people. We are now in May and you are still suffering. 
Before the complications with mine which required further surgery I did see a slight reduction and the pain decreased which enabled me to at least get out of the house and walk as it affected my mobility. By that time I had my Seroma for 12 weeks so it was a very slow process. I am not sure it would have ever gone completely which was upsetting.

It is awful to say but from my experience it is a case of waiting, there doesn't seem to be a 'fix' for a Seroma. I found the attitude towards me was dismissive with no empathy at all.

From your post you are an active person and I would still do what you are comfortable with as it is also a mental battle. I am sure you already know this with everything you have already been through. 
i hope that you are able to get some advice or clarification from the nurse if possible although I suspect it will be to be patient, give it time. I was unable to find any support for what I felt was debilitating and soul destroying for me t the time. That is when I found this thread and Kate was a God send for me. Knowing someone else understood the frustrations of living with a Seroma was such a relief.

Please feel free to keep in touch, I found it a lonely experience until I found this.

Hi Kate,

You have been in my thoughts lately and I am hoping that you are ok. 
Your news was a concern and I've worried for you x

Thanks for the reply LHG. It is comforting to learn of others' experiences. I appreciate it. 
Ironically, I was due to attend an emergency appointment at the Plastics Dressing Station last Wednesday. I had left 2 answerphone messages with my allocated specialist nurse and eventually on my 3rd phone call on the following Tuesday ( 3 working days after my 1st call) I spoke to a coordinator ( not my nurse) who made the appointment for them to carry out an aspiration next day. 
On Wednesday I awoke with cold onset symptoms ( my appointment was for 08.30 involving departing from home at 07.00 and I'd been told there could well be quite a wait before I was seen). I decided not to risk the visit given the hospital's stringent Covid precautions. I felt it was a wise decision but despite 6-7 calls up to 10am I couldn't get a response from the Dressing Clinic. I phoned the specialist nurse number several times but only ever got the answerphone so I eventually left a message explaining my "no show". I have not heard a word from them since. 
I have persevered with my twice daily massages, compression from cycling shorts and evening heat treatment. Yesterday and more so today the seroma appears to have split into 2 sections- a small head higher up on my groin plus a larger body but not quite as big as the original single seroma. In tandem with this, much of the numbness along my thigh down to my knee has started to disappear( I had been told that this numbness could be permanent but it finally seems to be easing ). 
I have now decided to pursue things on my own for the moment. That said all I have EVER wanted is a calm discussion about the  seroma. I was even worried that given my previous experiences of the Dressing Station culture it could have very much been " aspirate now and ask questions later ". To be honest I feel like I am being made to feel like a pest. Not good.

Hi Doug,

You seem to be as frustrated with the lack of information and dismissive attitude from the medical professionals as I was. I completely understand why you feel a pest as I felt very similar. I was made to feel like I was neurotic.

As my situation was resolved (although still a little lump) with surgery for the infection it does sound like you are having some success with the massage and it sounds positive that the numbness is decreasing. Hopefully this will continue and you will see and feel more improvement. 
I noticed that mine had changed, it was almost a lump with another on top, they even felt slightly different, one being quite firm and the other being soft. The Dr didn't seem concerned when he saw me as I was told it would go away, he didn't have a crystal ball so couldn't tell me when. Sadly mine didn't but...I believe many do resolve and other than waiting it isn't possible to know if you will be one of the very unfortunate people who are stuck with it.

Keep taking care of yourself and let's hope that you start to see & feel some more positive change.

Hi Angie

I had a groin dissection in October (2022) due to stage III skin cancer and had a drain in for 9 weeks.  It was taken out just a few days ago and what appears to be a huge seroma (fits in the palm of my hand) has developed.at  the top endof the scar, almost going up to my abdomen.It is now the New Year bank holiday weekend and I am extremely worried but having read your post above do feel slightly relieved as I have no other worrying sytems.  My lymphodaema specialist is also away until Janary.  Would you advise to continue with my compression stocking or leave it off to see if the seroma calms down?

Many thanks!

Kate

Hi Kate,

I'm sorry you are experiencing such a large seroma. Is your compression garment a stocking or tights? Tights are better because they support the top of the thigh and abdomen too. If it's a stocking, I recommend buying some lycra cycling shorts to give you extra support whilst waiting to contact your specialist cancer nurse rather than the lymphoedema nurse. Your SCN should get your consultant to look at it and decide if it needs draining or leaving to break down itself. I have sent you a friend request. If you accept it we can chat more by private message.

Angie

Hi Angie

Thanks so much for getting back to me, and for your advice.  The seroma has subsided a little now and seems much softer.   Thankfully my SCN has contacted me and hopefully I can go in to see her later this week.  She also suggested lycra cycling shorts so I'm on the case to order some from amazon!  It was a great help to read the various messages on this forum and to realise there are lots of others with the same issues.  I have only just joined up but not sure where to find your friends request?

Many thanks

Kate