Remission

[Taichipat]

What I don't understand is why my oncology nurse told me they don't use that word anymore as it gives a false impression. Maybe this was referring to me. But it is certainly used all the time on this site.

[Hidden]

I was told that the word isn't used by oncologists any longer other than for some cases of childhood disease.

[deb2711 in reply to Hidden]

They wouldn't use it for me either

[Whippit]

I don't think I've heard the term 'remission' either. I was always told I had an incurable cancer and whatever treatment I received was 'palliative'. Scan after first line they were very excited and said I'd had a good response and there was no sign of disease and scan after second treatment showed I had 'partial response' to chemotherapy.

I'm still alive and kicking whatever they call it. !!!! xx Annie

[TrishLey]

My oncologist doesn't use the word remission either. I use it though for the times I am not in treatment and my CA 125 is normal. I always know that I have incurable cancer though.

[SandyL]

It makes my blood boil when medical folks don't use the word 'remission', because in essence they give the impression that a cure isn't possible and throws a wet blanket over our 'already' shattered senses of helplessness and hopelessness.

It is my belief that holding onto HOPE makes one strive in a very subliminal way (through the mind, spirit and body) to beat off those cancer cells. There are many things we don't understand in this world. Maybe it is curative in itself to believe with passion and intention that one can and will beat the disease (in my humble opinion).

Back in April 1999, I HOPED, then later, believed that I could be one of those women who would enjoy a long term relationship with NED (no evidence of disease). Maybe I was looking through rose coloured spectacles? If that was the case, so be it, because it seemed to work for me as my remission continues into its' 16th year.

I think it is very sad that 'some' Doctors eliminate all HOPE at a time when it's needed the most.

Sandy.

[Jackie0 in reply to SandyL]

Love your response Sandy ,bless you and long may you remain healthy.you give positivity and hope to us all xx

Much love JO

[Tricia12 in reply to SandyL]

Great way of coping with a very difficult time in our lives!

Thanks - I'm hoping for some remission after this line of chemo.

Pat

[Hidden in reply to SandyL]

HI Sandy I love your answer you are totally correct. I was diagnosed in 2006 after beingh borderline 2005. My first recurrence was in 2009 but not diagnosed until 2010. My gyna didnt believe that rising 125 was enough to warrant ct scan. So I am lucky my gp kept chipping away and then the gynae team said I had osteoarthritis. Still in pain and my gp referred me to a rheumatolgist who said yes I was stiff but lucky for me he sent me for mri. This showed the cancer was back and I can tell you that I got a fit of the mads with the gynae team, the consultant chose his registrar to give me the confirmation but then action very fast and I was in treatment. Bear in mind that at this stage I had lost a stone in weight. I am glad your remission is into its 16th year. I have had more chemo again since then and currently on Avastin. I have a fab oncologist who has a level playing pitch, the gynae consultant and myself have long parted. My onc says there is always hope, he has a patient who was so ill she had to stop treatment many years ago with breast cancer and she is still here. So positivity does play a role in this somewhat, but then you factor in those who have also been positive but have been very unlucky.

I am happy to be alive fairly well and living as best I can, that is all I can do. Its all anyone can do at the end of the day,

[Be-Positive in reply to SandyL]

Really love this reply and it helps know people are out there living on for a very long time after OC, I have found that the oncologists set you up for the worst and do say quite harsh realities to us.

[Boot1947]

I actually have a letter from my oncologist saying that I am in remission and fit to travel. Perhaps it varies from hospital to hospital. I don't think it means the same as 'cured' though, just that I have no symptoms at the moment.

[baxbird]

I felt quite deflated when talking to my oncologist post chemo, good ct results, when she didn't use the word remission at all in the conversation. I was so hoping that I would hear it as that's the word I'd come to expect as proof almost that you were doing really well in your treatment. It's been bandied about for years, friends and family all want to hear that you have been declared "in remission" , that's thier way of knowing that you are OK, cos as far the general public ( ie those not in the Cancer world ) know, if you not in remission what are you? Even explaining that you are fine, chemo free etc, doesn't cut it, everyone wants the best for you and as far as they are concerned the word remission is the proof....we need a new descriptor that comes to be the accepted norm!

Sorry rambled on and yes to be honest I would still like to hear the word put in a sentence with my name.......even though I know I'm doing good!

Dawn

[thesilent1]

Hi, my oncologist didn't use the word remission to me either, what she said was the chemo has done its job and there is no evidence of disease. In my book, if there is no evidence of disease then you are in remission. I admit at the very first mtg with her, she told me they could not cure me but like Sandy, I hold on to hope.

When I met with her in Sept for the results of CT scan carried out in August due to raised bloods, she said she had hoped that I would have got 18 months progression free from the first chemo. Perhaps this is their new term. What do we say though, I am now in a progression free period? I prefer remission myself, makes it easier for others to understand. Ann

[Taichipat]

Hi all, looks like I started something but its in my nature (right little stirrer). All your comments are appreciated.

[LesleyGreengran]

Some people seem to call it conditional remission. In the US at least. As in they can't totally get rid of it though I guess there will be some very rare exceptions. My nephew had leukaemia when he was 12 and it's totally gone - he's 24 now (though the treatment has left him with health problems). But they say that with late OVCA it's about management rather than getting rid of it. I was stage 3/4 so that has been true for me. I was told after my first surgery and chemo (by doc) that treatment would be palliative and I don't think that's a helpful term as it's associated (by me at least) with end of life care. The nurses say chronic disease management instead which I think is more accurate and more applicable to me as when I'm well I'm fine and my life is more or less as it was before in terms of my daily routine and stuff like holidays.

[SandyL]

I have Arthritis. That is a chronic disease I can't get rid of, but I do everything possible to reduce pain and keep moving (I walk 5 miles every day @ 4-5 mph). Having said that, I have always treated cancer as an unwanted visitor. It isn't "MY" cancer, because (IT) is not welcome in my body.

Yes, I've also known many women over the years who had a positive attitude, yet the cancer returned. I console myself with the knowledge that there are things I'll never understand - and I accept that, I have to or I'd drive myself bonkers!

Over the years, I've been a support (by phone and e-mail) to many women dx with OC - and I've chatted to these women to offer support and suggestions. I don't have all the answers, but when I'm asked what it is that I do to stay in remission, I always preface my answer with, "We are all different. My solutions may not be your solutions. We have to search for our own". My feeling is that we come into this world alone and we leave it alone, so all the bits in between represent our own unique life-journey.

I know I've gone off at a tangent from the original "remission" question, but I think you'll agree, it's all connected at many levels. I hope my thoughts help some of you who feel you are "blowing in the wind" - not knowing what to think, how to react or deal with the reality of this disease. The fight never stops - and much of it happens in the mind. Thanks for listening!

Sandy.

[chrissy88 in reply to SandyL]

Well put sandy. Thank u. Xxx

[blue100]

I was told from the start I was not curable and that the word remission isn't used with ovarian cancer. I think he was talking about late stage diagnosis though and I think this is dependent on stage & grade etc. It is a dampener though. However I have heard stories of women with long periods of so called "remission", so there is always hope.

All the best

[Lily-Anne]

The dictionary says

Medicine/Medical.

a temporary or permanent decrease or subsidence of manifestations of a disease.

a period during which such a decrease or subsidence occurs:

So guess that covers it lol

My consultant hasn't used the word remission for me, but we have talked about it, he said that tends to be during periods of treatment when there is a lull in progression, or NED but expected it will return at some point. Seems strange it's being 'phased' out guess they'll be a new word soon

LA

[daisies]

HI. It was only when I read your post, that I realised it was never said to me either. the Doc says positive outcome; tumours responding to treatment; NED on scans etc... but remission or cured is never used.

Hope all OK with you.