6 month check post op with the lovely prof - My Ovacome

My Ovacome

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6 month check post op with the lovely prof

Zena41 profile image
45 Replies

Hi all hope your all ok me lovely teal sisters.

So I visited prof at her clinic she walked past me twice did not recognise me 😁

She looked at my scan said we knew it was coming back but she is not concerned at all they are tiny cells and it’s a slow growing cancer

She said to do surgery now and chemo would be silly.

Carry on taking letrozole and my ca125 is 29 lowest it’s ever been.

She said and if it develops into tumour in five years then we operate but for now she is not worried. And to see her in 6 months.

For me it was so hard to take as news and I’m struggling how to look at this and a lot of what ifs...?

Can I ask you ladies how would you take the news?

Thanking you all

Xx

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Zena41 profile image
Zena41
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45 Replies
Katmal-UK profile image
Katmal-UK

Hi Zena I'd take it as good news. Life is full of what ifs. Who knows, u could get hit by a bus tomorrow., win the lottery? Nobody is guaranteed tomorrow so if I were you I would enjoy the here and now, not worry about those what if's. Worry will simply ruin your today. Who is to say a tumour will ever develop. Deal with it when it happens, IF it happens. Goodness I sound preachy, I don't mean to and I probably sometimes need to follow my own advice lol. Hope you are ok. Kathy xx

Zena41 profile image
Zena41 in reply to Katmal-UK

You always make me feel better. Thank you I girls mean so much to me xx

BeeWild profile image
BeeWild

Hi sweetie, well if your lovely professor isn’t worried and wants to wait and watch I would get on with living your life and enjoying your gorgeous girl! If you’re worried at all by increased symptoms etc before the 6 months then seek some reassurance again but I would take it as good news to get on and not have to have treatment yet!

It’s easier said than done I know but a good saying I was given is that thoughts are just that they’re not facts so the fact is she’s happy to leave things 6 months and she’s the expert, go with that and enjoy all that living and partying lol 😂

Zena41 profile image
Zena41 in reply to BeeWild

Yes let’s have that cocktail my bury sis xx

BeeWild profile image
BeeWild in reply to Zena41

Definitely we really do need to get together xx

Very good news Zena. Providing that you are having checks and have someone to ring if you need to ask advice or request appointment xx

Zena41 profile image
Zena41 in reply to

Yes christies want me to have scan in ten wks.

But prof said I can have in 3 or 6 months 😳

CJR99 profile image
CJR99

Zena,

I think this is really positive news and I'm so pleased for you. Your Ibiza trip will be even brighter and sunnier.

Sending you lots of good wishes,Clare xx

Zena41 profile image
Zena41 in reply to CJR99

Still not booked it 😳. It’s in 3 weeks. X

Zena41 profile image
Zena41 in reply to CJR99

How are u .....? anymore of the white isle booked ?

CJR99 profile image
CJR99 in reply to Zena41

I wish!We were hoping to go late September but,I’m back on the surgery waiting list😢Just had pre-op so praying I won’t have to wait long...thinking of you xx

Zena41 profile image
Zena41 in reply to CJR99

Ok so get it booked for next spring! Something to look forward too. What are u having done in surgery?

CJR99 profile image
CJR99 in reply to Zena41

I like your style Zena,think that's a good move!

It's so hard to plan stuff isn't it? I'm trying to get on with life but, have found it very tough to be honest.That's something we can all sympathise with is is not?!

Had several MRI's due to a significant return in symptoms and I'm waiting for a laparoscopy. Gynae/Onc is 95% sure nothing sinister structurally. Could well be a return of Endometriosis but, nothing certain until they get in for a look.

I'm due to go on to a hormone inhibitor also. I do appreciate I am very fortunate to be disease free. I'm just praying there are no nasties lurking xx

Zena41 profile image
Zena41 in reply to CJR99

I’m praying it’s nothing serious. But least they are onto it.

I’m on hormones letrozole I’m ok and they are working.

Yes I would love to see ibiza in spring. I’m thinking may next year too 😂💃

Are u low grade. ?

Yes it’s hard to get on with things and plan I feel manic sometimes squeezing it all in

Xx

CJR99 profile image
CJR99 in reply to Zena41

Hi Zena,

If we are both there in Spring I’m so buying you a 🍸 cocktail!

I’m so pleased the letrozole is working for you,long may it continue.

I was low grade stage 1a which I know is very lucky indeed but,I was also full of Endometriosis as many of us are and when symptoms return it’s so hard to tell the two diseases apart.

My new gynae/onc has been good but,I respect I’m down the list priority wise and that’s tough sometimes.I did get the scans really fast which was good but,the surgery wait could be sometime.

Hopefully there’s nothing lurking...i’m staying positive😊

Sending you lots of good thoughts,Clare xx

Zena41 profile image
Zena41 in reply to CJR99

Your on!!! 🤣👌🌞🍍🍹

Plz inbox me how ur scan goes I will be thinking of u x

CJR99 profile image
CJR99 in reply to Zena41

Thank you lovely lady and you tooxx😘

Nancy222 profile image
Nancy222

Hi Zena,

This is good news! I would have skipped all the way home :)

You're being monitored. Life is good.

XXOO

Zena41 profile image
Zena41 in reply to Nancy222

Think the word residual disease has upset me after being told remission 3 months ago.

I know that I’m luckier than lots xx

Nancy222 profile image
Nancy222 in reply to Zena41

I would think that the key -- and I did read your subsequent post about residual -- anyway, the key is whether these cells grow. This diagnosis is like a gift to you. Don't let this rain on your parade. XXOO

I understand your concern. We all want to be told we're NED. Take good care of yourself.

Zena41 profile image
Zena41 in reply to Nancy222

Thank u xx

Zena41 profile image
Zena41

It says this at the bottom of report

Zena41 profile image
Zena41

Suggesting small volume of disease so I googled as I do not understand I know I shouldn’t but I hope this is true.

Minimal residual disease (MRD) is the name given to small numbers of leukaemic cells (cancer cells from the bone marrow) that remain in the person during treatment, or after treatment when the patient is in remission (no symptoms or signs of disease).

Petrolhead profile image
Petrolhead

Hi Zena

Sounding good and still being closely monitored. What ifs are hard to deal with. On the way to the ferry last year a car 3 in front of us in the motorway 3rd lane suddenly swerved into the crash barrier and I thought it was it. Luckily we all managed to stop in the fast lane without a pile up. You just never know so I am keeping my eye out for that number 9 bus waiting to get me.

You can’t help thinking but hopefully it will lessen as time goes on.

Best wishes

Fay

Kryssy profile image
Kryssy

I would kill for that news. Stop worrying and enjoy life. Take care lovely one xxxx

Maus123 profile image
Maus123

That's ok'ish news. Especially if you have a slow growing tumour kind. Mine is low grade serous OC i.e. also slow to progress. I was on watch and wait for over two years (with a ca125 around 100, and scan results that suggested "stable disease" at one point, "possibly some calcified lymph nodes", "small deposit on bowel" and "nothing to see here" at other times) before a rapid rise in my ca125 indicated that now there might be some accelerated disease activity, and we went for surgery.

Nerves of steel, Zena, nerves of steel ;) .

All the best. Maus.

Zena41 profile image
Zena41 in reply to Maus123

How was surgery 2 nd time around??

Maus123 profile image
Maus123 in reply to Zena41

Easier to recover from than the first one, although it was essentially the same laparotomy cut. Guess because this time, only lymph nodes were actually resected.. everything else just fondled and ogled and checked for possible tumours. ;)

January-2016-UK profile image
January-2016-UK

You've had lots of good advice here. It certainly sounds good news to me. I'm guessing that a surgeon would suggest to wait longer until there's definitely visible operable disease whereas an oncologist may want to start chemo earlier which may explain the differing time scales. I'm only guessing remember but there's only two weeks difference between 10 weeks and three months anyway.

Enjoy life!

gmc920 profile image
gmc920

I would take that as good news 😊🎉 xx Gina

Yoshbosh profile image
Yoshbosh

Oh bless you, Zena. I understand completely why you are bothered by the news, but as the other ladies have said, you’ll be closely watched, and if the Prof isn’t bothered at the moment, take that as a good sign. Our doctors know what they are dealing with, and they know what they are looking at. If you carry on feeling fine, then go with that, and if you begin to feel ill in anyway, you know who you can contact. Take care of yourself, Vicki xxx

ZenaJ profile image
ZenaJ

I'd take it as good news that she didn't think there was anything to worry about. She should know what she's talking about and if she's not worried that must be good.

I understand your concerns but there are so many what if's every day. See what happens in the next 6 months. Your CA125 is really good.

I'm sure you'll get lots of positive thoughts from all us ladies we always try to look on the bright side.

You take care, hugs, Zenaj xxx

Zena41 profile image
Zena41

Thank you all you are sooo right!!! And Krissy my love I would love u too walk in my shoes too but with me and a bottle of gin ....😂🙌

You all know what I’m going through and my hubby doesn’t talk much.

Thank u all kisses 😘

Jessica-DianeB profile image
Jessica-DianeB

Maus, it sounds positive, because she’s seeing you in 6 months, however I know it’s hard. I longed for NED, wouldn’t have accepted anything less in my mind. Until I recurred then I was grateful for ‘stable’

Things on the move again now so wondering what term of phrase I’m expecting.

Small steps, lots of mindfulness, which only needs to be allowing your mind to stay in the moment, today, how your are today and keep going like that until the mindfulness becomes your subconscious. Enjoy a break, I know I’d be celebration 🎉 xxx

Zena41 profile image
Zena41

Hi Hun. Yes i hate the phrases they use as they don’t mean 1 thing but 2 meanings. I pray you get stable or disappeared for the next one...😂🙌 xx

Lily-Anne profile image
Lily-Anne

I would be very happy she seems such the optimist. When I was told months she told me years. That was 18 months ago so I prefer her psychic powers to the other crystal ball 🔮 subscribers

Here’s to the next few months of tucking cancer away in a box 📦 and leaving it there until it absolutely has to come out and be scrutinised

Have some fun 🎡🥂

LA xx

Zena41 profile image
Zena41 in reply to Lily-Anne

Haha I luv this. Amen!!🙌

Hi Zena, to put it simply good news now enjoy life take care Lorraine xx🎆🎈🎇✨💙💙

ShropshireJo profile image
ShropshireJo

Hi Zena. I really understand how hard it is to accept this kind of news when deep down all we want is to be told we’re cured and can go back to the way things were pre OC. It’s the uncertainty that I find hard (even though I know intellectually that life is uncertain for everyone). When I had my first recurrence two years ago, I thought I’d not be around more than a few months but it was eighteen months after finishing second line before I needed third line in June. Looking back, I didn’t fully embrace life in those 18 months, it felt like being in limbo so once this chemo is finished, hopefully in October, I aim to make the most of each day, not sure how yet. Hope you find a way to let the anxiety go. Very best wishes Jo 🌺🌼🌸🌻🌹

I think "not recognising" is a professional tactic they develop. Mine does it too and I've been seeing her for nearly 8 years. I think it's a way of concentrating and they certainly need to be able to do that with the waiting rooms they have.

I think many of us have faced the horrible sort of transition from it looking great, then perhaps not so great. I do think it's not helped by them not being upfront with the stats from the start.

But, as all the wise women have already said, what she says is pretty upbeat and life is full of what ifs. Just think about the Genoa bridge.

We can't let cancer take over our lives and you've got a good one to get on with living.....so get on with it and enjoy!!

Preachy mode me too today x

Maxjor profile image
Maxjor

I would also take it as good news Zena. The wait, and the worry for the next 6 months would be a waste so my suggestion is to give yourself a time to think about worrying--maybe one week or so before your next tests--but to try to push it out of your mind before then so you can enjoy all there is to enjoy with your life, your holiday(s), etc. I would trust your oncologist and she sounds like she knows what she's doing. And my onc said don't forget you have an immune system that may also try to get rid of the little seeds and that also helped when I was told that. Slow growing, if at all (and maybe not!), sounds like a time to enjoy. Thinking of you! oxoxo Judy

Zena41 profile image
Zena41 in reply to Maxjor

Wow I didn’t know that ? Ps I’ve just had spinach with tea xx

Zena41 profile image
Zena41

Thank u ladies. I’m thinking again....😂

At the back of my head do I ask for chemo to get the stray cells ? Even tho it’s never worked for me.

But the dr said it may in the future, well that confuses the hell out of me......? How......?!!

I will see what they say in ten weeks at christies xx

harpist_UK profile image
harpist_UK in reply to Zena41

Hi Zena - I'm coming in to this a bit late, but I'd say don't do chemo if it's not necessary. I'm sure a lot of us learn to live well with stray cells and invisible microscopic cells that it may not be possible to clear. Treatment gaps are great and to be filled with real life and normality as well as a big load of things that give you pleasure. My aim was to forget about the cancer - initially that might be for 10 minutes, but gradually I got to whole days of not thinking about it, and that gives the greatest buzz. When we're on the treatment treadmill we can forget to be the people we really are. So go out and enjoy! Maybe a 'living with the impact of cancer' course at Penny Brohn UK in Bristol would help - they are great pennybrohn.org.uk/ Good luck!

Zena41 profile image
Zena41 in reply to harpist_UK

Thank you I will look into this xx

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