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September 11, 2013 at 12:10 am #21569MarianAParticipant
Hi, it’s nearly 1 am here in the UK and reading through posts relating people’s experiences of treatment in the States I’m struck by how proactive and upbeat American doctors are. My son has had surgery to remove two brain mets and was told “that’s it, you won’t get any more surgery if any further brain mets develop”. Reading some posts, it’s clear that American doctors are willing to do whatever it takes and with the will of their patients offer any treatment option. There are so many new developments in the pipeline for melanoma, surely it is worth trying to combat this horrible disease and keep patients going in the hope that their solution is just around the corner? I have to believe in this approach, I can’t contemplate losing my son, my only child. Tonight I feel particularly desperate and low. It’s not always easy for English people to bare their feelings, stiff upper lip and all that, but this forum makes me feel part of a family and we’re all trying to deal with a particularly clever and deadly form of cancer. What’s so cruel is that my son is a soldier and his service in Iraq and Afghanistan most likely put him in this terrible position. We just don’t seem to be catching any breaks. Thanks for listening.September 11, 2013 at 3:21 am #62472benpParticipant Hi MarianA,
I’m sorry to hear about your son. Have you tried visiting another medical team? I know it sometimes seems like you don’t have much choice, though this is rarely the case. I have had 3 brain surgeries so far. I am in Australian, and have a really great neurosurgeon who hasn’t hesitated to operate when scans have showed new lesions. I know others here who would not have done the same, and that would have made all the difference.
Hopefully he won’t need another though!
Ben.September 11, 2013 at 3:56 am #62473tamieParticipant
I was sorry to read you post.
We are relatevly new to this issue. My husband was first diagnosed with positive Braf 3 months ago,
and we are trying to cope with the side effect of the Zelboraf – which is not easy. Not to mention the ocnstant fear started with the doctors announcment on surrvival rate and the length we can take the emdication. But after the first shcok I realized that this is not true. There are many changes and developments in this area with new options and drugs all the time. No one can say what will be, they can only say what is the mean respond of others. But precentage, success rate and prognosis – are for the articles, and p[atients are human being, and each body and each person is diffeent.
So, I ahve learned that we need to read, be updated, never accept no or depressed prediction as the only “true” and take charge of our life, check for other opinions and beleive.
I believe in human strength and spirit.
After the shock of hearring Xelboraf can be good only for a year – I read posts of people who are taking it for 40 months e5tc.
so be strong, be connected, hope for the best and follow his response and let’s all hope he will be ok
TammieSeptember 11, 2013 at 10:11 am #62474AndyTParticipant
I’m not sure if it helps, but I have had the same feeling here in Europe, guess it’s not just UK. Many doctors here unfortunately just don’t seem to understand the importance of their approach and attitude. Speaking about percentages and statistics does not really help patients. Nor senteneces like “prepare yourself”. For what? Doctors should never in anyway undermine the hope and the will to battle in patients, but rather encourage them, explain other options and be supportive. Somehow I also got the impression that US approach it such, which is much more stimulating. My therapist told me – you are either alive or dead, there is no other option. (By the way, as a caregiver, visiting a therapist was the best thing I did in this ordeal. It helps me so I can help my dear fighter. It is really hard to cope with this disease on your own). You should never lose your hope, no matter what the statistcs say. None of them is 100% and why would you be a statistic. I’ve also spoken to our oncologists and told them they should never undermine our hope, no matter what the situation.I think it helped.
MarianA, you are in a tough situation, but be strong, as you said the amount of resarch on melanoma right now is amazing, the old stats simply cannot hold anymore. I am sure you are doing an incredible job for you son, hang in there, keep you spirit high! We all break down once in a while, but that is just a necessary step for us to get even stronger and dedicated to beat this beast. Be strong:)September 11, 2013 at 8:12 pm #62475PatWParticipant
Marian, I am so sorry to hear that your son is going through this. I can only imagine how your poor heart is breaking.
Ben is right… even in the States we have a lot of doctors, even oncologists and radiation oncologists, who see a diagnosis of “Stage IV” melanoma and mentally give up. Even if they don’t share their pessimism with the patient, it affects their treatment recommendations and decisions. That is why many of us always tell melanoma patients to get to a clinic that specializes in treating melanoma as soon as possible.
As you said, there are so many new treatments available for melanoma, so many clinical trials, and so many new treatments in the pipeline that no general oncologist could possible keep up with it all. Not on top of treating lung cancer and colon cancer and breast cancer and everything else. In addition, at a melanoma specialty clinic your son would be treated by a team of specialists who all know a lot about melanoma– dermatologists, medical oncologists, radiation oncologists, neurosurgeons, and support staff. These people confer with each other about every case to share ideas and opinions. And here in the States, most clinical trials are conducted at melanoma specialty clinics– not always, but mostly.
I don’t know of any melanoma specialty clinics in England or Europe but I’m sure there must be some. I suggest that you son go to one as soon as possible.
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