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17 April 2019
My Name is George I 78 years old. 5 years ago I had a Malignant Melanoma removed from my back. I was then on 3 & 6 monthly checks nothing was found.
In October of last year I felt a lump very near to the last Melanoma, after a Biopsy it was found to be again Malignant & was removed.
I am now told I am cancer free BUT have a 50-50 chance of it returning & if it did it would likely be a stage 4.
I am being offered two options.
To be monitored every 3 months with a scan every 6 months with no side effects. But also advised the having a scan every 6 months is not good at radiation from the multiple scans builds up in your body & that could lead to problems?
Immunotherapy Nivolumab (OPDVO) an infusion every two weeks for a year with side effects ranging from not a lot to things you really don’t want.
Could you give me any pointers / advise please? At the moment I am leaning 60-40 to have the Immunotherapy.
Good morning George (SBBC)
Thanks for getting in touch with us and welcome to our Online Community.
It’s often difficult to know what to do when doctors give you options. The difficulty is that you must feel confident that it’s the right one for you.
Whilst we can’t advise you what to do as this is a choice only you can make, we can go through the two options with you. This can often help you to clarify things in your mind as well as help you to think about further questions you may want to ask your consultant before making that final decision. Our information about making treatment decisions and talking to your healthcare team can be helpful to look at.
Often it can help to write down the pros and cons of each treatment. Then having a look to see how what one suits you better.
“To be monitored every 3 months with a scan every 6 months with no side effects. But also advised the having a scan every 6 months is not good at radiation from the multiple scans builds up in your body & that could lead to problems?”
The potential benefit is that you’re being monitored as long as you’re well then, no treatment is being given. You’re right there are no side effects. But some people find this option difficult to handle psychologically, as they feel that they are constantly living from one scan to another. Some people find the active surveillance difficult as they worry about the uncertainty. Others however are happy that they are putting off having treatment for as long as possible and that their quality of life is being maintained.
There will also be an option to start treatment later. No one can predict how long you may gave without needing further treatment, but you could potentially defer the side effects for many months.
People do worry about radiation from scans as they are being given regularly, but doctors must weigh up the benefits versus the risks. Our radiographer Kate answered a question about CT scans and risks last year which explains this in more detail. You can read her answer here.
It would be worthwhile asking your specialist how many scans you will be expecting to have if you have option 2, if this is the main reason for not choosing this treatment.
“Immunotherapy Nivolumab (OPDVO) an infusion every two weeks for a year with side effects ranging from not a lot to things you really don’t want.”
Nivolumab (OPDIVO) is a targeted drug that can be used to treat melanoma. Whilst the potential benefit could be that it slows down disease progression and may increase your survival.
The cons are there is no guarantee that this will happen.
It does have side effects, some of which can be serious. However, the side effects can vary from person to person. Most side effects can be managed effectively by your health care team.
Some people feel that they cope better psychologically when they are having treatment as they are being seen every 2 weeks and being reviewed by a doctor. Others don’t want to go to the hospital every 2 weeks for a year if this can be deferred or avoided.
When you have a decision to make some people find it can be helpful to talk to others who have a similar choice to make. Although the choice is theirs, sometimes it can help to hear what their thoughts were when making their decision. If you think that would be helpful to do you can join our supportive melanoma group and talk to others who know what it’s like.
You can also give our Support Line a call on 0808-808-0000 and talk to one of our nurses. We are open 8am till 8pm every day.
There are other ways that we can support you too.
Best wishes and take care
Ellen-Macmillan Online Digital Nurse Specialist.
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