Does anyone know...

[MarionL]

roughly how many women have a 'complete response' to their first line treatment? My mum has been told that they won't operate but will continue with chemo which seems to be working at the moment - she feels better than she has for years, but this I assume means she won't have a 'complete response' therefore I guess what I'm asking is how many other people have their oc 'managed' - sorry if this is a stupid question - I just can't get my head around what being 'managed' actually means.

[Hidden]

Hi Marion,

It sounds as if you need to talk this through with someone. It would be something to talk to the Ovacome nurses, or your Mum's Specialist nurse about.

I don't know the answer, but if the tumours are shrinking with chemo it might be that it can make them just about vanish.

Best wishes,

Isadora.

[RuthPOvacome]

Hi Marion

I would be very happy to discuss htis with you if you would like ot give the Ovacome number a ring on 09453710554. I am here until 5pm today.It is good that your mother has responded well to the chemotherapy

Best Wishes

Ruth

[SandyL]

Dear Marion,

I was diagnosed with OC over 13 years ago - and I had (and continue to have) what was referred to as 'complete response'. Back then the stats were something like this ... that 80% of women would get into remission after first, line treatment, BUT that 80% would reoccur. Those stats may be different now with treatment advances, but that's what they were then.

I have met many, many women in this journey and too many have passed away, BUT I do know several women who were diagnosed with Stage 4 disease, as I was, and are still alive and kicking. One lady I know is a 15 year survivor without recurrence.

Times have definitely changed with the general attitude of women diagnosed with OC. So many of those who post here, seem to have accepted that even though they are disease free after first line treatment, they seem to accept that it will come back.

I've been a member of the ACOR group for women with OC, and I can remember announcing with great excitement that I had reached my first year in remission anniversary. I was so proud and happy! Another member posted to me that it wasn't a case of "IF" I would reoccur, but WHEN! Well, that statement kind-of knocked the stuffing out of me ... for a bit. Her statement made me even more determined that I would make it. I was very naive back then, and I thought to myself, if I can get rid of the flu, then I can get rid of cancer.

So, what I THINK I'm trying to say is, try and think above the expectations of others. You are in charge of you ... and remember, the mind is a powerful tool in your battle to beat cancer.

Sorry to have rambled a bit ... It bothers me that the message being sent out by Doctors and nurses, seems somewhat less positive, expectations seem to be dumbed down somewhat - and that's unsettling.

Good luck Marion ... I hope your Mum continues to do well on chemo, but do encourage her to follow a good diet to help with her healing.

Sandy Lightfoot.

[wendydee in reply to SandyL]

Hi Sandy. I am of the same mind. I always say (to myself and others) that I am now well at the moment. Someone said to me once that we should think in the moment ~ "Right here, Right now, I am fine."

By the way, what is ACOR?

Love Wendy xx

[sunny1 in reply to SandyL]

Your post has just really helped me today Sandy so I thank you so much. I went for a referral at the Marsden on Fri and heard the words 'prolonging your life' and a lot of what was said after that was a bit of a blur. They arent going to give me anymore chemo at the mo as Im fit and well (I never did have any symptoms-only a lump that alerted me). So as long as Im well, then they dont want to upset the apple cart. However Ive been struggling today and yesterday with the feeling of doom, this could have been exacerbated by having a surgical menopause 7 weeks ago, so Im a bit more emotional at the mo. Sometimes wouldnt it be nice to have not known what was wrong with us, but then I guess we cant be treated or treat ourselves either. Ive ordered the book 'How your mind can heal your body' meant to be inspiring and fabulous-which is just what I need right now.

This place is a godsend right now, Ive been so great with my positivity but hearing those words 'prolonging' has given me a real taste of my own mortality and I really dont like that as much as I need to be a realist (and I am), I'd like to err on the side of Im here right here right now and Im well. Damn consultants......

Kate x

[SandyL]

Hi Wendy,

The Ovarian Cancer Problems discussion group is very much this one, but most of the members (I'm guessing) are American. There have also been lots of Brits on there too over the years - and Canadians. It's been my 'support group' over the years - just like this one is. It's good to learn from many angles - different places and different faces.

It isn't a very active list right now, but when it is, it's great. Lots of information from the subscribers about the different chemo agents - and clinical trials.

If you'd like to join, this is what you do. Go to the website below, then follow the directions following it.

acor.org/

Click on MAILING LISTS

CLICK ON THE LETTER "O"

Click on "OVARIAN"

Click on "Subscribe"

Then choose Digest

Follow all the other prompts to subscribe.

I hope this helps you.

Sandy.

[wendydee in reply to SandyL]

Thanks Sandy

I will have a look at that.

All the best

Love Wendy xx

[SandyL]

Dear Kate,

When I was first diagnosed, the oncologist said, "Sandy, were not trying to SAVE you life, we're trying to extend it!" .... And I said ....

"I don't care what you have to do, I want it fixing! ... Please fix it!"

He had a look on his face that implied I was an absolute nutcase to think that I could be fixed. As time passed, I did so well with the treatments, that one day a very nice oncology nurse, put her and on my stomach which had reduced from looking 9 months pregnant to being almost normal, and said, "Sandy, I think you're going to make it!" I really needed to hear that!

Even with all my fighting talk, the words of that oncologist kept ringing in my head ... AND ... in the end, I think sparked a 'fight' in me I never knew existed. I realized I was in the fight of my life ... one I had to win if I was going to see my sons get married and to be alive to see any grandchildren come into this world.

I've seen all 4 sons get married and so far, 5 grandchildren. Life doesn't get better than that ... (happy sigh

The words coming from the mouths of doctors can put a nail in the coffin. As I said before, the hardest part of the whole deal is fighting against the expectations of others. And it isn't just the doctors ... it's those well-meaning friends and relatives who have that look in their eyes that says your a "Gonner". Fighting against those foregone conclusions is very difficult, but half of the battle is beating that. So it's not just a battle of beating cancer it's the other battle that no-ne but you can see.

Take good care ...

Sandy.

[wendydee in reply to SandyL]

Well said, Sandy. You're a gal after my own heart. I always think, "right here, right now, I'm fine" I also tend not to use the word remission with my (non-cancer-experienced) friends. I just say "I had cancer" --all in the past, but not specified what the outcome may be.

Keep on fighting, against the expectations of others as well as the ##**# disease.

By the way, I was told that NHS consultants have now got to go on courses to learn how to talk to patients, and quite a few of the onc ones have not yet been

Interesting question, though .... operating to save lives or learning how to tell people about what they found!

Love Wendy xx

[SandyL]

Wendy,

Your "right here, right now, I'm fine" is a great set of words to describe how you feel besides giving the receiver of those words a "comfortable" feeling.

I love this group ... you're a great comfort (you, Isadora and many others) to women newly diagnosed. You fill the gap offering compassion and knowledge, where perhaps (in some cases), the doctors didn't. That lack of good communication makes so many give up before they've got started.

Take care ...

Sandy.

[Hidden]

'Living with cancer not dieing from it' is another good expression for this battle we are all fighting. It sums up the way we should all be feeling, once you give in you are a lost cause. Keep positive and keep fighting.

Viv