Frustrated Sister.
Sun, 13/12/2009 - 02:52
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...
Sun, 13/12/2009 - 12:24
#2
Re: Frustrated Sister.
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
Mon, 14/12/2009 - 19:48
#3
Re: Frustrated Sister.
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
Tue, 15/12/2009 - 00:53
#4
Re: Frustrated Sister.
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.
Sun, 24/01/2010 - 21:34
#5
Re: Frustrated Sister.
Just wanted to say what a great sister you are, as it must be very hard for you too. How is your sister doing?
My friends mum was diagnosed with malignant melinoma 25 years ago that had metastasized. Basically she had it from her foot where the primary was and mets up her leg and all through the abdominal cavity, in liver, uterus and other places. She was given 6 months to live, had 5 kids and began a trial. That was 25 years ago, she has since even beaten Thyroid cancer too.....hang on to hope and good stories of survival like that. xxoo
Tue, 15/12/2009 - 02:35
#6
Re: Frustrated Sister.
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
Mon, 21/12/2009 - 22:24
#7
Re: Frustrated Sister.
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.
Mon, 21/12/2009 - 23:02
#8
Re: Frustrated Sister.
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
Tue, 22/12/2009 - 08:49
#9
Re: Frustrated Sister.
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
Sat, 26/12/2009 - 22:32
#10
Re: Frustrated Sister.
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.
Mon, 28/12/2009 - 11:53
#11
Re: Frustrated Sister.
Thanks for updating us again Kelly,
I'm so sorry to hear your sister has been plunged into this war zone. Let's hope the chemo at least stems the tide and if there's a promising trial or new treatment regime she can participate in then they get her onto it soon.
I'm hoping her Sydney appointment goes well and they have some good news regarding treatments they can offer her.
Best wishes - Ed
Wed, 30/12/2009 - 02:40
#12
Re: Frustrated Sister.
One last update.
We got a call tonight from the melanoma unit - official bone scan results are back and it's about as bad as you can get...
They have advised my mum (who is acting on her behalf as she works in health) to call family and friends so they can visit now - they expect she has only a couple of weeks left
Wed, 30/12/2009 - 03:14
#13
Re: Frustrated Sister.
Sending you support Kelly, and hoping your sister can be kept reasonably comfortable as she prepares for her journey to the next world and says her goodbyes.
You may find this link useful at some time
http://www.facebook.com/group.php?gid=10259772108
I guess one can still hope and pray that your sister's prognosis turns out to be way too pessimistic.
Best wishes - Ed
Wed, 30/12/2009 - 20:45
#14
Re: Frustrated Sister.
Aylaah,
Sending strength to you, your sister and your extended family at this very challenging, difficult, scary time.
Kind regards,
Jill
Sat, 02/01/2010 - 14:28
#15
Re: Frustrated Sister.
Thinking of you and sending massive amounts of cyber hugs.
Alana
Sun, 03/01/2010 - 22:44
#16
Re: Frustrated Sister.
I'm very sorry about your sisters prognosis. My heart goes out to you and all your family.
Sat, 09/01/2010 - 23:06
#17
Re: Frustrated Sister.
thanks, everyone.
She's off to Sydney again next week for radiotherapy, to try to shrink some of the ones in her lower back, because of the pain she's having. They can't seem to get it under control at this point so they are hoping this will work at least a little.
She's also started having breakthrough pain in her shoulder, which isn't good.
She's on hydromorphone (don't know the brand name) through a pump, as well as something else for breakthrough pain. Not really sure what will happen after next week... officially she has chemo the week after but it'll probably depend on her own choices once she sees how she tolerates the radiotherapy.
Sun, 10/01/2010 - 20:14
#18
Re: Frustrated Sister.
Hi aylaah,
Your sister is lucky to have a sister who is obviously so caring.
Please accept multiple cyber hugs for you and your family.
Samex
Tue, 19/01/2010 - 12:48
#19
Re: Frustrated Sister.
Hi Aylaah,
I hope the radiotherapy goes really well for your sister, and her medical team are getting her pain under control.
Thinking of you and your sister and family this week.
Best wishes - Ed
Tue, 19/01/2010 - 14:22
#20
Re: Frustrated Sister.
Hi Aylaah.
All we can say is we feel your pain.Just know there are lots of people out there that are sending their love and prayers to you and all your family and friends at this time.
Take care of yourself
Gail.
Sun, 24/01/2010 - 01:16
#21
Re: Frustrated Sister.
Thanks for the wishes
My sister was informed yesterday that she won't see another Christmas. this is something 'we' all knew, but no one had really sat down and discussed her condition with her.
She asked how long she was looking at, but they just said it could be a week, it could be a month... we don't know. She was too sick to have her 2nd round of chemo last week as planned. She has a bowel obstruction but x-rays suggest it's a tumour issue (possible in her abdominal cavity and not the bowel itself) so they aren't operating or anything.
Other than that, very little news. She came home from radiotherapy and managed to be at home for about 24 hours, and then it was into one of the base hospitals due to the obstruction. They have said she might be OK to go home on Monday.
There's been a lot of family drama at the moment, generally revolving around her mother in law and husband which has made things really difficult, particularly for her 23yo daughter and my mother.
Mum has been a nurse for almost 40 years, so everyone expects her to be their medical liaison and not have any feelings, but no one is considering the fact that she's losing a daughter, which is really hard to watch. That, and boundary issues with the mother in law, mostly.
My brother also said to her the other day while planning to come up this weekend that she needs to 'concentrate on the living'... idiot - all because my mother is exhausted and didn't expect to be able to spend time with his 6 & 8yo's this weekend due to the hospital thing and her being so tired (they are quite ummm energetic). He's 43 going on 10 sometimes (I'm so much younger because I'm the second marriage baby, hahaha).
I just feel like we'll all have time, we'll have time in a month, or two, or whatever. We don't need to push for attention right now!!!!!
Anyway sorry about the vent, just needed to get it out there.
Sun, 24/01/2010 - 07:56
#22
Re: Frustrated Sister.
Just want u to know Im thinking of u at this hard time,and remember theres always one in the family who is selfish and still only thinks about me,me,me,ignore him ,hes not worth wasting ur precios time and energy on ,
take care and cyber huggs to u all
Julie x
Sun, 24/01/2010 - 08:38
#23
Re: Frustrated Sister.
Hi Aylaah
Go right ahead and vent, and do not apologise. It is what this site is for, amongst other things. It is really tough for your family just at present. Don't forget the Cancer Helpline 131120 it is there for everyone affected by cancer not just those who have it. There is also some fantastic material around about helping children, ask them about it.
It is also that dreadful uncertainty. A friend of mine died last year from cancer - she was given three weeks and lived another four months. She commented to me how she felt such a fraud as she had got the family together, said all the goodbyes, put things in order and was still there four months later. So yes it is a bit like "how long is a piece of string?" and again a demonstration that we are all unique individuals.
So take care and look after yourself as well as your family will need you.
Regards
Sailor
And when the day arrives I'll become the sky and I'll become the sea and the sea will come to kiss me for I am going home. Nothing can stop me now. Trent Reznor
Sun, 24/01/2010 - 11:32
#24
Re: Frustrated Sister.
Hi Aylaah,
My heart goes out to you, your sister and the extended family.
You have all had to deal with so much in such a short period of time, it is an unenviable situation.
I admire your strength and courage and your love and care for your sister, her family and your Mum.
Time is precious, remember to take some time to nurture yourself whilst you are nurturing everyone else.
Wishing you strength and courage,
Jill
Sun, 24/01/2010 - 13:29
#25
Re: Frustrated Sister.
Hi Aylaah,
Please take heart from all of us here.
Never apologise for venting - we all do it . We all need it.
The not knowing how long must be agonising but I guess it menas that you deal with what you see as important.
Beautiful quote Sailor.
Samex
Sun, 24/01/2010 - 14:47
#26
Re: Frustrated Sister.
Aylahh
I have struggled to know the right words to say to you ... i an just say my heart goes out to you all and i hope that your sister can be kept comfortable in her time left.
As samex has said, that is a beautiful quote sailor ... thank you
Julie xo
Sun, 24/01/2010 - 15:19
#27
Re: Frustrated Sister.
Like Julie, the right words don't come easy. Our thoughts and prayers are with you and wishing you all the love and light in the world to help this journey become a little easier to bear.
Teach xxx
Wed, 27/01/2010 - 22:20
#28
Re: Frustrated Sister.
Thinking of you Aylaah,
Cherish each moment.
Alana
Sun, 07/02/2010 - 15:47
#29
Re: Frustrated Sister.
I wanted to come in and give you an update.
On friday morning my sister passed away, aged 40. She was conscious right up until the end, she spoke to her husband, rolled over and went.
Her funeral is on Tuesday.
Thanks for the support over the last couple of months.
Tue, 09/02/2010 - 08:48
#30
Re: Frustrated Sister.
Aylaah,
Thinking of you and the family today.
With kind regards,
Jill.
Sun, 07/02/2010 - 16:15
#31
Re: Frustrated Sister.
Hi Aylaah
My condolences to you and family.
hugss
Julie xo
Sun, 07/02/2010 - 19:11
#32
Re: Frustrated Sister.
There aren't any words Aylaah. I just hope that you gained some solace from this site.
S
Mon, 08/02/2010 - 01:33
#33
Re: Frustrated Sister.
Dear Aylaah,
My sincere condolences to you and your family.
Sending you love and strength, courage and peace at this very sad time.
Jill.
Mon, 08/02/2010 - 05:45
#34
Re: Frustrated Sister.
Dear Aylaah,
So sorry for your loss,my heart,thoughts and prayers to you and your family
Julie x
Mon, 08/02/2010 - 07:20
#35
Re: Frustrated Sister.
Hi Aylaah
Our condolences on the passing of your sister. Our thoughts are with your family for Tuesday.
Take care of yourself.
Jo xxx
Mon, 08/02/2010 - 08:51
#36
Re: Frustrated Sister.
Dear Aylaah
My deepest condolences to you and your family. Having recently lost a loved one I know there is really nothing anyone can say to take away the pain but I do hope you find comfort and take solace from the people around you who care.
Sangeeta
Mon, 08/02/2010 - 23:49
#37
Re: Frustrated Sister.
Hi Aylaah,
so sorry to hear your sad news. Please continue to access this site whenever you need to. we will be here with cyber hugs at the ready. through your pain, remember the good times.
thinking of you and your family.
Alana
xxx
Tue, 09/02/2010 - 03:40
#38
Re: Frustrated Sister.
Hi Kelly,
I'm sad to hear of your sister's passing.
It seems such a brief time since you first posted.
I will be thinking of you and your family today.
Best wishes - Ed.
Tue, 09/02/2010 - 10:57
#39
Re: Frustrated Sister.
Hi Kelly, I am so sorry to hear that your sister has passed away. Life can be so cruel sometimes.Sending love and best wishes to you and your family and thinking of you and hope you get through today OK.
Gail xx
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.