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You Are Never Cancer Free

Posted 9/10/2018

I see messages and comments from people who have had cancer all the time and so many say they are cancer free. I never Now fighting bone cancerNow fighting bone cancerthought that way as I think it lulls you into a false state of security.

Once you have had cancer, you are never free. You may be in remission or symptom free but I say, once cancer has devastated it way into your body, it is still there, waiting. You may be lucky it never returns, but I think you are just one of the very luck ones.

A lot of people sadly do not know they have cancer back until they have symptoms, and then those are often dismissed. Too many people find out they have cancer back when it is too late.

I can remember asking my doctor when I was recovering from my treatment how I would know if cancer had returned. He just kinda shrugged and said when you have symptoms. I was even more surprised to find out that apart from a yearly mammogram basically I would not have any other scans.

All this makes me scared for others because I was extremely lucky my cancer was found. It was also a shock to learn my initial bone scan was nearly cancelled as my specialist was certain it was not cancer.

Once I had the final diagnosis of my bone cancer, being told I had a 1cm and 2cm cancer growth on my spine, it also dawned on me that I was supposed to be on treatment to prevent the cancer from returning.

The treatment was still devastating to the fact I am living with chronic fatigue and an incredible amount of hair loss. They don't ven prepare you for side effects like this. You just get the list of possible side effects. It is a LOT more common than they make out.

I had been on Tamoxifen from my breast cancer stage, and was put onto an injection of Zoladex every month, which is bloody painful. I do not like needles, at all, in any form. Cancer I learnt was all about needles! Shortly afterwards I had my Tamoxifen replaced by Letrozole. I was dreading this change as Letrozole had a very bad side effect, bone pain. Turned out I was one of the lucky ones, I was actually better on Letrozole than the Tamoxifen. I was less tired, though I still had chronic fatigue, but I had no other side effects that I could note.

I always accepted that I would get cancer back. I knew also that the longer you go between your initial diagnosis and it returning usually gives you better survival odds. I was hoping for longer than two years. The scary part was my bone cancer was still growing even though I was on medications that I thought would stop it.

When had it returned? No one knows. Basically I feel as if the last two years I had still been recovering from my breast cancer, I had already developed the bone cancer. Maybe if I had been given a scan or something when all my treatment had finished, maybe something might have been seen. Now I will never know. Has it been found in time? How long is a piece of string?

When I was told I had the bone cancer, I had no real reaction. My surgeon calls me the unconventional witch! I had already accepted in myself I would get it back. It was no surprise. That came later when I found out just how much bone cancer I had.

I really do think this thing about telling people they are cancer free is wrong. I really do think that it should be explained, in a lot more detail, that the current cancer has been treated, but you should always be aware the cancer can return, anywhere!

Breast Care Leaflet - Secondary Breast Cancer In The BoneBreast Care Leaflet - Secondary Breast Cancer In The BoneI also think anyone who has finished their initial treatment should be given a full body scan to ensure that there is nothing else happening in the body. It had been 10 months since my last breast cancer scan when I went back to work. I can remember feeling lost. I had NEVER felt assured everything was ok and clear. I was left with a permanent doubt in my head. I think that is why I was always waiting for it to return. At the time I was having these scans for this bone cancer, I was going to be discharged from the hospital and further treatment ongoing with my doctor.

People who have had cancer need better after treatment. I felt as if I was cured, that’s it, all ok, next please. They need a lot more reassurance. They need better ongoing care. They need a lot more information about the return of the cancer but more importantly, they need more and regular FULL BODY SCANS!

Unfortunately, with the current economic climate in the UK, the poor NHS can not afford this. I do not know how this is managed in other countries but it is clear to me, the earlier its found, the better your chances. My breast cancer was 5.5cm when it was removed. I had no symptoms. I had no lump. Even the specialists could not feel a lump. Was my prior tiredness a symptom? No one once mentioned cancer.

So I expected to get cancer back, though I have had a very positive attitude and on the whole I still do. It is something totally out of our control. We did not ask for this. No one deserves this . We just have to live with it. We are not brave, we do what we have to. We are fighters, survivors, warriors. We fight it because we want to live.

I will also state at this point I think cancer is POT LUCK! When I see a child with it, a young lady, early 20s, healthy, into fitness, organic food, having a double mastectomy, see the Rolling Stones running around having done everything "bad" in their lives (and probably still doing!), I really do think it is totally random. It is in everybody. It is just waiting to be switched on. Why? Because one day you were in that one place at one time that it just happened.

Yes there is also a lot of anger in me. How easily I could have been walking around right now with bone cancer, and no diagnosis, no symptoms, and it eating away at my life. I was VERY lucky it was found. I was lucky that I was at the hospital prepping for a hernia operation when I was seen by a surgeon that wanted to be sure, even though another specialist later was sure it wasn’t cancer.

Cancer is a killer, but it is also a silent killer. Once you have cancer, you have it for life. It never goes away. It all depends how long it is dormant for. Those tiny, miniscule cancer demons are still running rampage round your body and all it takes is one to survive the treatment, one to hide away, waiting to begin it all again. So many people have symptoms of something but never feel the need to go get things checked out.

And the future? My son is 27. He has a 1 in 2 chance of developing cancer. There is still no cure for cancer and the treatments are still devastating and destructive to the body. Until there is a cure, a real cure, cancer will remain one of the biggest killers today.

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