Gone or not?

Hi again SueJam ....... post treatment you have to make some choices........... then once made....... you let them become a mindset and the 'what if's? get put up on a high shelf so you are not looking at them all the time.

Remission is the first stepping stone that opens up the future......... can cancer return - well yes or we can develop another type of cancer.

I have talked with many on the community who have had to deal with this........ but they moved on as they did the first time round and are determined that their life is not defined by the fear of recurrence.

As you know I have an incurable cancer and although I am 8 years in remission.... it could kick off at any time. But honestly I am not living my life looking over my shoulder 24/7........... I fought hard to get where I am so my mind is 100% focused on enjoying life with my family and friends.

Macmillan (Local Macmillan Support in your area) and Maggie's Centres (Maggie's Centre) run some good post treatment courses so have a look at these. I did the Maggie's Where now? course and it was excellent as you got an opportunity to work through all the questions you have buzzing round your head.

((hugs))

Hi Sue

What Mike says is so right. There is always the chance of a recurrence of cancer but don't waste your life dwelling on it. If you do you are living in fear and not enjoying the present and all the great things that life brings you. I have taken the mind set of not letting it worry me and leaving it up to my surgeon who I see every 2 months after my most recent op. I am planning for the future and recently celebrated my 70th. birthday with a bit of a shindig to celebrate life and the fact that I have been given 3 chances at it. I am not putting my life on hold as I am feeling very well now and intend to keep moving forward. I am going on a holiday with my husband to Tasmania for 3 weeks  next week (I live in Australia). I have to manage my eating a bit differently now so we are having self catering accommodation. In my case I have had to adapt to a new normal but that doesn't mean it can't still be good.

Make some plans so you are looking forward to something and hold onto the fact that you are in remission and that might go on for ever and as Mike says put the worry mindset up on a high shelf. It still comes down from time to time unfortunately but move on and put it back where it belongs. You have been given good news so now is the time to get back to what you enjoy doing. Nobody knows what the future might bring and worrying does not change a thing so that is time wasted. The further in time you get away from your treatment the easier it gets.

Have a good life. Wishing you all the best.

Lyn

Hi Mike, thanks for the reply - good advice. It was just a shock, in my mind I am now cancer free whereas remission means its still there but no needed any treatment at this time, bit like conditions that flare up now and then e.g. Rheumatoid Arthritis, I never thought of my cancer in that way - so to think I actually still have cancer is a real shock! So just now I cannot put that on a shelf, I want to know what can be done - my mind is spinning! Will a full mastectomy resolve it then?! I cant sleep thinking of it! Been through all the surgery etc for nothing then as its still there! No one told me that would be the case, feel lied to and very let down to be honest. Not sure what to do now .........  

On the back of that person saying 'glad to hear your cancer is in remission'……. whoever that person was?……. was it a medical professional or someone else?…….. have you talked that all through with your consultant or CNS?….. as they are the ones who know you and your case best.

But let’s face it…… is there a 100% certainty  when it comes to cancer?

I obviously have a completely different mindset knowing that my cancer is incurable so I have to live with this uninvited guest.

Don’t sit on this and let it fester…… look to talk with the people who know your case best ((hugs))

Suejam, sorry you've been shocked.  I thought I'd add some things to try and clear any concerns. 

Firstly no you're not naive, doctors don't always spell everything out for us. Protection I guess, of whom I don't know.

So a diagnosis of cancer is never an easy one to live with. In most cases of cancer the path is similar, we have tests/scans/bloods/biopsies taken etc in order to obtain a definite diagnosis.  This done the doctors need to check for any spread of the disease as this informs both the "stage" of the disease plus the treatment offered. Sometimes a tumour is removed, no other signs of disease are present in either organs within the body now in any localised lymph glands(the body's drainage system).

If no spread is found at this point the doctor may say to you that you're cancer free and need no further treatment.  He/she cannot say with 100 percent certainty that the cancer won't return if you ask them. They may not offer this last statement voluntarily to you unless you ask them. 

So I'm presuming you are in this category ? 

Being "in remission" is not the phrase given in this situation, it's usually given to people with various blood cancers who after treatment may have their cancer markers reduced so they have no symptoms but the disease isn't gone. All cancers are different, they occur in different cell types within our bodies and  their growth patterns are too. So outcomes vary.  

People with stage 4 disease ( such as melanoma) in some cancers  can be stable for years and not currently at risk of dying imminently.  

So maybe your friend who used the word "remission" has had experience of knowing someone for whom that word is appropriate.  Please don't worry too much but contact your oncologist or surgeon for a definitive answer.  Take care x

Hi again Suejam, just an update on the language of cancer-- the word 'terminal' in all my previous post needs to be replaced with the word 'incurable'.

My bad I'm afraid, the word 'terminal' is unfriendly and not fit for purpose anymore and is not relevant when talking about people with stage 4 cancer.  The treatments are so improved that people are "living with" cancer for much longer than before in many cases. 

Wishing you some peace of mind x