General Discussion

george1960

Hello want to pick your wonderful brains

Will make it brief after having skin cancer on the bum and then having 28
sessions of radiotherapyy and 5fu and mitzo chemotherapy. Didn't work out so was sent for surgery had APR lots taken away middle of the year. Complained to the consultant about feeling uncomfortable again so arranged MRI. When I saw the surgeon he said there was a tumour and concern in 2 different area and no more surgery was possible, I said what about chemo and he said It was tried before so he arranged for me to see oncologist so I asked a question on time he said 12 to 18 months. I am a fighter and will fight to the very end but was saddened by the lack of options no referral and optimism etc. I will ask the oncologist next Tuesday loads of questions .
After the surgery I received a letter from the surgeon saying that all the cancer was taken away I'm confused.com
I just wanted to pick your brains and is the normal of a very qualified person dealing with life and death decision.

Thanks for reading xx hope you day is beautiful.

Tiffany

Hi @george1960

Sorry to hear that you have a cancer diagnosis. Can I ask what your exact diagnosis is? I assume you have a malignant melanoma?

To be honest I am not sure if any of us will be able to help you out with this apart from giving you lots of good wishes for your appointment on Tuesday. It is such a confusing time but until you actually meet your oncologist and find out what is going on I am afraid you are going to have to sit tight. You are entitled to a second opinion so if you are unhappy you should go to one of the top cancer centres in the country for your type of cancer....possibly The Royal Marsden in London or The Christie in Manchester.

The other thing that I need to mention is that this charity and forum is to help people with bowel cancer therefore I am not sure if we can be of much help to you.

Have you tried looking at www.melanomauk.org.uk - You may find more specific and targeted information for your type of cancer.

Sorry I can't be of much help but wish you well and hope you get answers very soon.

Tiffany :x::x:

Lizalou

Hi @george1960 @Tiffany

George. ....I think I have interpreted your post in a different way....have you been so unlucky that the bowel cancer has metastasized into your skin? I seem to remember this happening to someone else but it must be very unusual.

(I was curious be caused my husband has just had an operation for malignant melanoma and I did lots of research )

I am sorry that I can't help with your problems but agree that you need lots of answers (difficult when you don't know what to ask). And a 2nd opinion would be sensible if this is really an unusual complication.

Best wishes :x::x:

george1960
Quote from @Tiffany:
Hi @george1960

Sorry to hear that you have a cancer diagnosis. Can I ask what your exact diagnosis is? I assume you have a malignant melanoma?

To be honest I am not sure if any of us will be able to help you out with this apart from giving you lots of good wishes for your appointment on Tuesday. It is such a confusing time but until you actually meet your oncologist and find out what is going on I am afraid you are going to have to sit tight. You are entitled to a second opinion so if you are unhappy you should go to one of the top cancer centres in the country for your type of cancer....possibly The Royal Marsden in London or The Christie in Manchester.

The other thing that I need to mention is that this charity and forum is to help people with bowel cancer therefore I am not sure if we can be of much help to you.

Have you tried looking at www.melanomauk.org.uk - You may find more specific and targeted information for your type of cancer.

Sorry I can't be of much help but wish you well and hope you get answers very soon.

Tiffany

Hi Tiffany it was skin cancer on the bowel then had a Apr resection large parts of my bowel removed. And it's bowel cancer again.

Hans

@george1960 Hi there and sorry to hear all that you have been going through. The uncertainty is what is worse. Your case will have been discussed by the team and options worked out. Some of these top doctors are not known for their tact etc. So I would certainly get it all carefully spelt out by the onc - you are entitled to a second opinion and I would request it from the onc. Make sure to take plenty of notes so you are then able to talk to your GP.
All the best and good fortune with this shocking matter =
Hans

Sasa

Hi @george1960

Just a thought, but I knew someone with oesophageal cancer, who had his stomachs removed, and afterwards the surgeon was keen to let him know that all the cancerous parts had been removed and that the surgery had therefore been a total success. This he took to mean that he had been cured, which wasn’t actually what he had said, and sadly he died a year later.

I can’t help wondering if this is a common confusion, and that a successful surgical procedure does not necessarily mean a cure.... 🤔

This could perhaps be what has happened here?

All the very best to you,

Sarah :x:

Tiffany

@george1960
@Lizalou

Yes perhaps I have misinterpreted this and I hate to have to ask again but was this bowel cancer that has spread to your skin? or skin cancer that has gone into your bowel? or two primary cancers?

Usually if you have a primary cancer such as bowel and it has metastasised to your skin it would be treated as bowel cancer and therefore you are in the right place.

I am going to tag in our nurses to see if they can shed more light on this @Charlotte Nurse Advisor

Lots of love, Tiffany :x:

george1960

Thanks everyone sorry Tiffany should have said it was bowel cancer.
I am aware that in life there are only two certainties your born you die and everything else in-between you fight for, I was asking people what would they do I suppose that's why I said I'm a fighter.
Trying CBD Oil from the Netherlands rather than drugs that a choice. When I go and see oncologist I will mention I am taking the oil in case it has any effect on what treatment he may offer
I will fight that's a certainty.

:x::x::x:

Tiffany

@george1960

I love fighting talk. You definitely fight and you get a second opinion. I believe that you have to explore all avenues and push boundaries when it comes to this. Even if you get knocked back at least you have tried and know you've done everything.

My hubby was told incurable and inoperable but after three years of chemo and a complete lifestyle change he's now cancer free. Miracles can happen :x::x:

Bear G

Hi @george1960
I can see why feel confused, I think we all feel the same!

Can I address two things that I hope will help:

Firstly, after my initial (successful) chemo I asked my oncologist about prognosis and he said “12 to 18 months”, 6 months later I asked again and he said “12-18 months”, this carried on until the fifth anniversary of my diagnosis when he said “you’re doing so well, let’s try for another 5 years”!
He wasn’t ‘wrong’ in his previous estimates, but they were just that - estimates! I used them as targets to exceed rather than a definitive time.

Secondly, as mentioned earlier, sometimes different doctors can use different terms that can therefore cause confusion. This is definitely something to take up with your oncologist on Tuesday and ask for proper clarification.

Hope you get some clear answers very soon.

Big hugs
Bear
:x::x:

george1960

@Bear G @Tiffany thank you I suppose I needed the clarification, bear g as always the font and Tiffany big 💓.
:x::x:

Charlotte Nurse Advisor

Dear @george1960 and to others who have replied to this thread.

I hope you don't mind but thought I would just jump in here to try to explain the slight differences between your diagnosis and a diagnosis of bowel cancer.

It appears from what you are saying that you have been diagnosed with a cancer of the anal canal. As part of the lining of the anal canal is made up of skin cells and the cancer is arising from those skin cells it is treated slightly differently to bowel cancer (where the cancer arises from the lining of the bowel wall).
Often first line treatment of anal canal cancer is radiotherapy and chemotherapy but sometimes surgery is needed if the treatment has not been completely effective.
Although often the chemotherapy drugs are the same as for bowel cancer different ones can be used.

I have also posted this in General Discussion 'Paclitaxel and Carboplatin'

Kindest regards,

Charlotte