After having an SCC removed in late November from my right collar bone area, and another removed from my Adams apple area in early December 2011, I've now been informed that they were both cancerous.
On seeing my Oncologist,I was told that my cancer is not curable and it will significantly shorten my life span. He said I was looking at having around 2/3 years left,and much much less than that if it spreads to a vital organ.
This Consultant says he doesn't think there will be any great advantage in giving me more chemo now,but to wait until any more nodules pop up and they can then do what is necessary then.
My family are urging me to get a second opinion - it's not from a lack of trust angle re. the diagnosis , more just a question of treatment timing to give me the best chance.
Anyone with any experience or input re. same would be very appreciated.

Brendan,
Well, yes, I think you should definitely get a second opinion! Try to get to the best doc if at all possible. I would assume there are some other cancer cells lurking around, why not chemo now to try to get them? Lots of people go on chemo and get more time that way; they live with cancer. I guess they scanned to see if your lungs were clear.
Anne

Brendan:
I agree with Anne, 100%. GET ANOTHER OPINION from another doctor. There have been others on this Forum that have done just that, and they're still with us. Keep in touch.
Hugs from julieann

You NEED a second opinion. Chemo is not curative for SCC. There are better ways to deal with this. Any doctor that is speculating on how much time you have left is guessing. Combine that with a chemo approach to a situation that chemo is not the first tool in the bag for, and I'd want someone else to manage my situation, Ideally a team of people including a radiation doc, and a head and neck surgeon. When they all weigh in on your situation, you will have a better plan, and be working towards complete eradication of this.

Hi Brendan,

If at all possible, please seek a second opinion from a facility that specializes in the treatment of cancer. Preferably, one that has a top-notch oral cancer team.

In the US, patients seek out Comprehensive Cancer Centers for treatment and for second opinions to verify that treatment is appropriate, to get the diagnosis confirmed, to have access to advanced treatment options, etc.

Words cannot express what a huge difference it made that we sought a second opinion from a CCC.

Hi I totally agree with all the above opinions... Why allow it to move ??? To a vital organ??? Seriously. Fight it! get a second opinion, while its still possible... Enroll in clinical trial... Read back on the survivor forum, there is someone who posted recently who was a write off (according to them) this person had lung mets! 3 almost 4 years later - and 2 clinical trials - later they are expecting to be declared NED,.. Please see someone else! Good luck and hugs!!

Please make SURE you carefully take in what all the others have said - I totally agree. If you need to read, and re-read, and re-read Brian Hill's response. You DEFINITELY need someone else to manage your case. Hugs

Donna

Brandon,
Just had to write again because I cannot get it out of mind how your oncologist talked to you. While at first I might be depressed if someone said that to me, later I would be angry!
I don't know what your options are there for medical care, but you really need someone who is proactive and considered among the best. Your doctor, whose attitude is, let's see what else pops up and then do something, is NOT the kind any of us need.
Please make some inquiries as soon as possible. And let us know!
Anne

Ditto!!!!!!!!! Seriously this dr does not have your best interests at heart find someone else. Someone able to think outside the boy and fight for and with you! Hugs!

Many thanks for all your input - I am humbled by your attention. I had extra MRI and CT scans immediately before this prognosis (they were clear, as were my original ones in June) and regularly see the Max/Fac surgeon who performed my operations.
I'm now making swift progress in getting myself referred to the specialist Christie cancer hospital in Manchester for a second opinion.
My 'hope' came crashing down on 23rd December, but I have to explore every avenue.

Hi, Brendan - glad to hear you will be getting a second opinion soon. It sounds as it your persistence is still in good working order. As a rugby player, you know hope to keep fighting - best wishes for a better new year!

Glad to hear you are going with a specialty facility. Please, hang on to hope. There doesn't seem to be enough metastases to believe you have a fatal recurrence.

I understand the appeal of thinking about the worst case scenario. It prepares us for terrible news and anything less dire is a cause for happiness and relief. Do not buy into a personal doomsday prediction made by your doctor. No one can tell you how much time you have left on your life clock.

Best wishes with your second opinion. I hope it calms your fears and gives you a plan of action that is curative rather than palliative.

Take care!

Sandy

Do push for yourself... Seriously, go to see the second specialist!ngood luck, and much love to you never give up hope!

You should have second opinion, I did as my local hospital gave me a poor prognosis and really scared me! I went to London charring cross and had the best treatment and am now clear and fingers crossed will stay that way! Never give up any hope and explore all avenues each hospital has different ways of treating us. I have heard Christy,s in Manchester is a reAlly good hospital.
Keep the faith Brendan pma really does work!

Hugs and stuff

Jayne

Brendan,
I'm sorry you're in such an predicament. I wish you all the luck there is in this world as you get a second opinion at the cancer center in Manchester. Until then, I wish long and plentiful moments of peace. I look forward to hearing some hopeful news from you soon.

With great care,
Kerri

Good good, Brendan. We're all with you in this fight.

My husband had a recurrence 6 weeks out of treatment. We got opinions after that from his original doctor at Mayo, Emory in Atlanta, and then Johns Hopkins in Baltimore. I think the more educated we can get, the better. They all agree that there are many more tools in the toolbox. He is in a clinical trial right now and feeling well. We were told that as long as he remains strong and can tolerate treatment, he is the perfect candidate for living many more years. They don't say how long, because they just really don't know.

Anyhow, don't give up. There are lots of options we were told!

Robin

What do the initials NED mean? Thanks

No Evidence of Disease

Here is a list of common abbreviations you will see on the forum.

Abbreviation List