Frustrated Sister.

[#1]

Hi :) My name is Kelly, I'm 27 and live in NSW. We discovered last week that my sister, who has just turned 40, has been diagnosed with malignant melanoma. I'm really struggling with finding good information though! What makes it hard is that there is no 'mole'. She has probably nodular melanoma, which has shown itself as a series of lumps, none of which have any colour to them - pink if anything. She's got over 40 lumps now, in 6 weeks since the first one came up (which she thought was a cyst). She's more recently started to have pain breathing so her doctor is concerned about it having spread to her lungs. She has a CT scan on Monday to find out more. But wow, trying to get an idea of stages (for her 23yo daughter who needs some rough idea of what is happening) or how advanced this is etc is really hard in this situation!! She was going to go to a regional clinic, but instead they have decided to send her straight to the melanoma unit in Sydney, and are getting as many tests done ahead of that appointment as they can - mostly because of the Christmas/New year period coming up and the delays that might be expected over that time. She also has a 12yo and an 18yo. I'm struggling - I'm a researcher and writer by trade so this is what I 'can' do, or so I thought. get the info and then censor it to pass on to my niece and sister who is also asking for it, thinking I could save them the hassle of trying to 'google' and seeing rare or particularly poor articles and so on. Has anyone experienced this type before? I feel like we've been thrown into this world that has no history to it, I can't find any information on what it means to have lumps from your head to your groin, with more popping up on a daily basis... I can't find out how advanced that might be, or whether this indicates spreading or it's different for this particular type, I don't know, it's just really hard to work it all out and it's sending me fairly mad...

[Terrafirma]

Hi Kelly, I'm not familiar with nodular melanoma and had to search for basic info on the internet as you've been doing. It does seem your sister's lumps fit the descriptions of nodular melanoma (not a medical opinion). Most of the basic info about nodular melanoma on the internet is probably copied from a very few sources so you may find the same info repeated on many sites. Good on your sister for going to her doctor when she became worried and not months down the track, and well done to her doctor for doing a biopsy! That was a wise step to take. It sounds like your sister is now on the "best practice" road for diagnosis and treatment of melanoma in Australia - a CT scan Monday, and being referred to the The Sydney Melanoma Unit, and urgency about tests, diagnosis etc. If I get melanoma (which wouldn't surprise me at all given my outdoors early and middle life) the Sydney Melanoma Unit is where I would want to be treated and I would suggest to my doctor "don't spare the horses" in getting me there please. It's good to hear about the speed with which your sister is being assessed. I didn't find any comments about whether forty lumps and increasing suggests metastasis, but I was only searching for about an hour so there may be info on that somewhere. If she has swollen lymph nodes anywhere that might indicate metastasis but it could be due to other reasons. Malignant melanoma can be one of the more troublesome cancers to treat particularly if it's metastasized so my suggestion is to be prepared for your sister to have a fairly challenging time ahead for a while at least, but only scans and tests will tell you how difficult, so it's play the waiting game for a little while - won't be long now and she'll be fully diagnosed. The news is sometimes a lot better than one imagines. Good luck to your sister and she will be so reassured to know that you are helping and supporting her :) Ed.

[Jules2]

Hiya I had amelanotic melanoma many years ago, with no known primary. There is some great things happening in melbourne at the moment as far as research and they are also doing a clinical trial. I am sorry that i dont have a link for that one but am sure it could be found via some sort of news item, perhaps on from news.com.au. cheers Julie

[samex]

Hi, My husband had 2 melanomas removed from his arma nd shoulder via a professor (can't remember his name unfortunately) at the Melanoma clinic about 7 years ago. they were very good and didn't muck around at all. He saw the Gp one day who sent a sample for pathology, had a phone call that afternoon to come back and he had already made an appointment within the next few days with the prof. He saw him and had them cut out the following week. It doesn't sound anything like your sister but they did act very quickly and effectively. I hope that you all do OK wiht this roller coaster. SAmex

[#5]

Thanks :) She had her CT scan today, we had the CD with the results sitting here when my mum came over, but she was too scared to even think about opening it up (she's a nurse with 40 years exp, so she'd be able to read the scans), there was no report with them yet though so she said that she wouldn't know what to look at, but I think it was more that she was too scared she'd see something so obvious that even I could pick it out. I don't blame her. She's going ahead with her regional appt on Thursday with an appt in Sydney on Monday next week. The professor who comes out here is from that clinic anyway, it's just like a satellite centre for treatment/care/appointments to save people travelling. She met the co-ordinator today who took one look at her and told her it was metastasis so to be prepared for that and that it'll be scary and hard and horrible but that's what she's there for - she was really good I think. My sister has proclaimed herself 'in a bubble' but she comes out of it when she needs to, and then goes back in. She's a straight shooter and so is this co-ordinator so the pairing is good, I think. She won't baby her, which my mother will do... Anyway my job I think will be as family mediator - between mum and my niece, and anyone else in the family who has the ability to create drama for her. It's probably the best use of me I think, to manage and control the others so that they don't make things harder with petty crap for my sister. It pales in comparison but there was drama all day out in the waiting room (not violent or anything just snipping and comments and people getting annoyed/upset/stressed out by other people) the day I was in labour with my first child, and it's like I can see that sort of thing happening here so I figure I'm the most laid back, calm, detached type of person here, so making sure none of that ever gets to her is my role.

[Terrafirma]

Hi Kelly, I'm sorry to hear that it sounds like your sister's melanoma probably has metastasized. Only a few days now, and the diagnosis and the way forward will be a lot clearer. Sounds like a wise strategy to act as a mediator for your sister in the family. There are certain to be other things you may be able to help her with too if it seems appropriate. The websites www.cancer.org, www.cancer.gov and www.breastcancer.org are very good sources of information about a wide variety of issues relating to cancer and its diangosis and treatment that you and your sister may find useful. (Although breastcancer.org is a breast cancer site much of the information there is relevant for many kinds of cancers, as are some of the discussions in its very populous forums). Good luck to your sister and best wishes to you and family. Next big stepping stone Thursday, unless your mother checks out the cd beforehand (if it's accessible). Ed

[#7]

Just a quick update - there have been two appointments and CT scan done now, and it's definitely stage IV, and it's in her pancreas, liver and lungs. The MRI will check the brain and is being done tomorrow. She also has to have a bone scan done because the melanoma unit suspects that it is in her lower spine as well. My mum is quite suspecious about the brain, because she's been doing and saying things here and there that are a bit odd, mum just stops and goes, hang on... so that's worrying. It feels like it's about as bad as it can be... She's getting a first round of chemo up here, she starts on Wednesday. If she'd gotten it in Sydney it would have been the end of January before they could fit her in - and considering we're only 7 weeks past the first time she noticed any lumps at all, another 5 or 6 weeks could prove seriously bad. I don't know the details but she's having a chemo that doesn't cause hair loss - but if it comes back confirmed that it's in the bones then she will have to have that type. She's still in her bubble though it's getting a bit extensive now... she was told stage IV, so she's invented stages 5 and 6. And even though they said to her where it is, she's not listening to anything at all beyond liver and will claim it isn't there if asked about lungs etc.

[Jules2]

Hi aylaah ... Good luck for tomorrow. You and your family have so much to take onboard at the moment. Your sister is most likely in a state of shock at the moment, hence staying in her bubble. Thinking of you all at this time. Julie

[Terrafirma]

Thanks for updating us Kelly. I'm really sorry to hear your sister has been confirmed as stage four and that the cancer has spread so widely. I wouldn't worry about your sister being in an expanding bubble - my guess is it's a good strategy for her while she slowly comes to terms with the magnitude of the diagnosis and how this will change her life, both in practical terms with the treatments and in terms of the fears and uncertainties she will feel about the future. Glad to hear she's got onto chemo quickly - as you say, much better than waiting till the end of January. I do hope the treatment goes well, and that if there are any promising trials at present being run in Australia, that they can put her onto one soon. Best wishes - Ed

[#10]

Just wanted to add a further update. Now the report is in from the CT and both MRI and bonescans are complete, things don't look good, to say the least. Along with the above mentioned things (liver, both lungs, pancreas), it's also showing in her uterus, peritoneum/peritoneal cavity, and now we have the MRI and bonescans back it is also in her brain (without any swelling/distortion and it isn't in ventricles) and her pelvic bones. Essentially as her doctor said, she's riddled with it. She had a large lump removed from her back which was for comfort so they didn't do a complete resection but the lump removed was over 1 inch in depth and around 1.5 inches in diameter, full of little black dots. It's been sent to pathology as standard. Anyway things look poorly for her 😞 She had her first round of chemo on Wednesday but will have to go onto a different type due to the MRI/bonescan results. She was looking and feeling quite horrible yesterday and the ms-contin which is part of her new pain care regime is taking its toll, she was fairly out of it all day.