Stage???: I've never been told and I've never... - My Ovacome

My Ovacome

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Stage???

Suzanne333 profile image
13 Replies

I've never been told and I've never asked which stage my cancer is. I'm assuming it's stage 3 as it's spread to the Omentum and it's advanced

I bury my head in the sand a bit and don't like asking too many questions.

When I saw the doctor before my last chemo, he said ovarian cancer isn't curable but they want to get it so it can be treated like a chronic illness. Controllable.

I just get so scared sometimes even though outwardly people see nothing but positivity.

Xxx

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Suzanne333 profile image
Suzanne333
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13 Replies
Katmal-UK profile image
Katmal-UK

Hi Suzanne. I was never told the stage or grade of my cancer, never asked or wanted to know, just knew I had advanced cancer and because of the spread, like you I assumed it was stage 3. Well after seven years my work place wanted me to speak with occupational health because I wanted to take part in another clinical trial and I think they were getting hacked off at me having to keep taking time off to do so. Despite emails from me and a note from my GP saying my staging was not to be mentioned the first line of the report read 'Diagnosed with Stage 3 OC in 2007'! my husband said but you've always said you have stage 3....... he didnt get that I was upset/angry, call it what you will lol. Anyway Im over that now but I like you get scared for the future then think well Ive lasted 9 years despite 2 recurrences, heres to the next 9! (and the next :)) . all we can do is keep fighting xxxKathy xx

Suzanne333 profile image
Suzanne333 in reply to Katmal-UK

Hi.

It is so scary isn't it. You're doing brilliantly though. You really are.

It's just such a roller coaster. The Unknown, the unexpected.

I do find being on here is a huge help and comfort.

Keep fighting. Xxxxx

Yoshbosh profile image
Yoshbosh

Hi Suzanne

It scares the living daylights out of me if I think too hard about it! I try to focus on the achievements for now and what I can do for myself to stay healthy in the future once chemo ends.

I also focus on the fact that I know 4 people 'in real life' who have had OC, and all 4 are alive and kicking MANY years later (30-40 years later in 3 cases and almost 20 years in the other). They've been disease free ever since, despite one of them being given 2 weeks to live at the time of diagnosis.

There's hope for us all.

xxx

Suzanne333 profile image
Suzanne333 in reply to Yoshbosh

Hi.

Thank you for your reply. It made me feel better. I do hear very positive stories too and must focus on them. Treatment is improving all the time too.

We are all in this together. Got to keep positive as much as we can and just keep living. Xxx

Caroles1 profile image
Caroles1

Hi Suzanne,

We are all in the same boat Hun and it is so lovely to hear sucess stories.I hide my head in the sand all the time and try not to think about what may not happen as it ruins all the good times,

Hoping you feel a bit better

Carole xxx

Flamingobeef18 profile image
Flamingobeef18

Hi Suzanne

Although I have a health background right from the beginning, like you, I did not want to know the details of my OC. At diagnosis I was frantic that I must not be told anything without my husband being there. He was my safety net. This was the way I coped and kept things together when I was truely scared to death.

Over time that terror has subsided and bits of information have slipped out so I do know more than I did. I even ask an occasional question and generally feel much calmer about things. I understand what your consultant says about the transition from an acute, life threatening situation to a chronic illness. That is where I am now and this has become my "new normal".

However this has all taken time. For me initially burying my head in the sand was the right thing to do. Knowing everything would have been too overwhelming. I still have times when I get frightened but I think that is completely normal and allowed given what we have to deal with.

For me talking through things with my Clinical Psychologist really helped. I could open up to her without worrying about upsetting her. There was nothing she could do to change what has happened but she could fundamentally change how I thought about them. This helped me and my family enormously.

You can only deal with things in the way that suits you. There is no right way of doing it. Remember you are still in the middle of a tough treatment regime. Be kind to yourself.

Love Juliax

Suzanne333 profile image
Suzanne333 in reply to Flamingobeef18

Hi Julia.

Thank you for your reply.

It is scary and tough to deal with. I have good days where I feel happy and very optimistic and days where I feel terrified of the future.

I guess we all just have to live the best we can and try not to think of the whats ifs.

Like you I have an incredibly supportive partner. He really is my rock.

This site is great for sharing not just information but our feelings and fears. A sell as our positive news too.

I wish you all the best. Xxx

hgeroka16 profile image
hgeroka16

Hi, I was told right away that I have stage 3b OC, and I have the clear cell type which already spread in my peritoneum, I was never told that OC can't be cured though, this is my first time learning about this, does it really not go away? 😱

Suzanne333 profile image
Suzanne333 in reply to hgeroka16

Hi.

I'm not sure. That's what' he said though. He said some cancers can be cured eg. Testicular but not ovarian. Perhaps we just go into remission for one year or twenty. I hate the thought that we go through all this treatment and then just wait for a recurrence.

I've head many stories though of women getting over the cancer and are still cancer free twenty or more years later. That's what I hold onto.

Xx

Yoshbosh profile image
Yoshbosh in reply to hgeroka16

Hgeroka - try not to worry about it. You will read lots of things on here and other medical/support websites which will either be scary or reassuring. Lots of medical professionals have different opinions about OC.

However, for you, the only doctor who's opinion matters, is the one in charge of your care.

grammeejill profile image
grammeejill

I know what you mean about not wanting to know too much. I am 10 months post debunking and hysterectomy and just asked this week for the labs. I guess I feel ready to face how much cancer they found. And my Dr mentioned he word cure to me. My cancer PPC 3b was caught before it spread too much and the tumors were tiny so he feels we can beat it. Hope so! 6 months post chemo and all OK so far!

Carole666 profile image
Carole666

Hi Suzanne

I'm the opposite and need to know the ins and outs of everything.

Mr Google is my friend.

I stress over the unknown but seem able to cope with the facts.

But we are all very different and have our own ways of dealing with this crappy illness that has Come our way.

😘

LesleyGreengran profile image
LesleyGreengran

Mine was about where you are when I was diagnosed. Yes mines been a chronic disease that sometimes needs treatment. O was diagnosed on 2010 so I'm nearly 6 years with it now.

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