UK Skin Cancer and Melanoma Patients

[goonermike]

Rainman,

So sorry for your lose - my thoughts are with your family

xxx

[vanessa89]

Hi, I had 3 moles removed about 3 weekes ago...the results came back and i have been referred to a Dematalogist, my appointment is on 3rd april....just because iv been referred does it mean i have cancer? or can it mean its harmless.......im just abit confuessed atm as my Doctor used big words i didnt understand and tbh i was too shocked to take anything in as i thought the results would come back Ok.

Im 21, I had 3 moles removed but it was only one that came back with the 'bad results' the one that came back bad appeared from no where roughly a year ago....it wasnt even a freckle beforehand...i just woke up one day and it was there....it wasnt very big just average size i would say

so as you can tell im very confussed and would be rele grateful if anyone could give me some advice on what to apect on my appoitmnet with the dermatolagist

Thank you xx

[rainman]

Just to say thank you for all your kind messages of condolence

[Lucy]

Oh, I am so very sorry to hear this. I often thought about you and wondered how Pauline was doing.

I'm so sorry.

[rainman]

The meeting with Poulam Patel went well yesterday. He spent over an hour altogether discussing Paulines case. As usual he was his kind,patient,considerate self.

He explained that Pauline's Melanoma was a highly aggresive type, and very metastatic ie. it seeded itself very easily around the body. Approx. 20% of Melanomas are like this. He also gave the results on the radical resection carried out on her left armpit, since we hadn't been informed of the outcome. They removed 14 lymph nodes of which 8 were positive for Melanoma.

He pointed out that if the Melanoma appears in the lymph nodes, and it doesn't matter how many or few are involved, then there is a high probability that it will have got into the blood stream and lodged elswhere in the body.

So there you have it, she really didn't stand much of a chance

[gilly]

Thanks rainman for posting this - it must be very hard for you - it does help all of us here, though, to get this feedback. To have a bit of realism is difficult, but we all need to know that this is an illness that frequently kills, and all who are stage 3 or beyond are as likely to have the same outcome as you have had to suffer, as not. I hope you have plenty of support in your terrible ordeal - and I know that Pauline is in a much better place.

[rainman]

Just as afurther update, and I forgot to mention this. We did talk about the ipilimumab trial that they are carrying out at Nottingham City-I think if I'm right it's the drug that unlocks the immune system. Ironically Pauline would have been elligible for this as she had 8 nodes positive.

Apparently it can attack other parts of the body as well as the tumour cells, and is effective in 20-30% of patients, but he estimated that it wouldn't increase the survival rate in patients with metastatic melanoma by any more than the median survival rate of 9 months.

As another aside, sorry to keep on,there was a question mark (and it is a big one, taking into account Paulines
condition) as to whether Pauline had ovarian cancer. The spread of the mtasteses in her abdomen was highly indicative of ovarian cancer along with the ascites and the invasion into the pelvis and spine. The survival rate for advanced ovarian cancer is 3-4 months-which is bang on the money really.

Sorry this post may upset some people but being realistic about this can help sometimes, I feel that sometimes this forum is a bit too gung-ho about MM.

[ally]

Thats a lot of information you gained from Prof. Patel Rainman - he is lovely isn't he. All the time in the world for the victims families and will tell you anything you need to know and to discuss the "why's and wherefores". It certainly helped my husband and I greatly.
As you are obviously in the catchment area of Nottingham - if you have time - pop over to Shirland (Nr Alfreton) Gold Club on Saturday if you have chance - Wayne and I will be there from 10am onwards with info. for the golfers on MM and hoping to raise funds for Poulams research lab. (We will also be holding this years Katies Midnight Walk from there : http://www.katiesmidnightwalk.com/index.htm). Bob Bolton who lost his son Matt also raises vast sums of money for him (http://www.facebook.com/posted.php?id=17610449828)- very worthy causes to channel our grief, distress and anger into.

[ally]

Sorry - meant to say Shirland GOLF Club - Not Gold Club - DOH!!!!

[Lucy]

Dear Rainman,

it's really useful to hear what you found out about Pauline's cancer and the possibilities there were, particularly regarding OC. How unlucky, if she had both going on at the same time - too much for most people's immune system to fight, I'd imagine.

What I've heard about ipilimumab is pretty good, but the response rate you mentioned (20-30%) sounds quite high, compared to what I have read - maybe this includes partial responses rather than complete (when the cancer just reduces a bit, or becomes stable for a while, rather than goes away completely)
I don't know - but what I feel surer and surer about is that some of these melanomas are vicious, and once they have begun to travel, there's almost literally nothing that can stop them.

They are working on a few new treatments such as Braf targetted gene therapy, which can hold it back for a while - but it's still in erly stages of development and it isn't holding out for very long in a lot of patients.

What I'm trying, badly, to say, is that there is probably nothing you could actually have done to save Pauline - and the same goes for her doctors.
Kate's melanoma was on her head, which is a prime bad place as it's s active in terms of vascular and neural activity - tends to have a worse outcome - and though it was misdiagnosed for a year, before it went mad and she got a diagnosis, I now feel grateful for this.

That might sound very strange, but given its location and aggressiveness, it was never going to be stoppable. I'm therefore glad she had that extra year of thinking she was well, rather than having an early diagnosis followed by aggressive treatments which in the end wouldnt have worked.

Hope this helps a little bit - I also hope you are doing alright, as much as you can be at the moment, because it's obviously a horrible time for you.

again I am so sorry. Melanoma is a bastard.
Love
Lucy

[rainman]

Thanks for that Lucy.

I think the treatment for Malignant Melanoma is at a stage where breast cancer was some 50 years ago. They wont conquer it in all its forms,but maybe more and more patients will survive longer and remain in remission longer.

[Lucy]

Yes I think the plan is to turn it into a chronic, rather than terminal, illness. It's just a shame it wasn't in time to save Pauline or Kate.

Best wishes to you Rainman, take it easy.