22 months from end of 1st chemo course

[Kayp]

Oncologist yesterday , ca125 8 abdo and internal nothing found, will have ct scan for next appt then may be on 6 month appts!! Clear so far wow!

[Alikay]

That's fantastic. Long may it continue for you.

Ali x

[Kayp in reply to Alikay]

Thanks I think there should be positives on here else it's sometimes a bit grim reading but so informative

[Hidden in reply to Kayp]

Just posted in a thread a quote from an Irish Poet Seamus Heaney, "Even if the hopes you started out with are dashed, hope has to be maintained". I have it up on my fridge and sent it to my oncologist lately with a thank you card for helping me get to this point. I retired recently and I thought at one stage I wouldnt see this happening. Went back to work on reduced hours last year and stayed the course until my 65th Birthday. This is a positive for me.

[Hidden]

Fantastic news xx

[Hidden]

Great news, enjoy the summer and treat yourself. Forget about the ct scan, I tend to think it shows what its shows and we cant change it.

[Hertsmum]

That is great news so pleased for you, enjoy the summer! have you always had your ca125 taken every checkup I'm just interested as my oncologist recommends not having it but goes on how I am feeling. It is supposed to reduce anxiety but then you worry about not getting it checked too! !

Madeline x

[Kayp in reply to Hertsmum]

I have had ca125 on occasions in the last 21 months but only at my request, the nice guidelines say no ca125 or scan necessary as will not change outcome but go on symptoms only , but my curiosity gets the better of me now and again!

[greenpink in reply to Hertsmum]

That is interesting about the CA125 checkups. I have had a CA125 taken at every checkup and I even asked my GP to do one in between the last 6 months (i.e. at 3 months). I feel absolutely fine, walking, swimming and fit. Yet my CA125 is now 21 up from 9 last December, rising gradually. CT Scan this week has showed a recurrence, though small and I will have a PET scan next week to see if there's any smaller cancer cells, which won't show on on the CT. I have to start chemo in 3 weeks time ( I finished my first lot of treatment in November 2012) . I have no symptoms and could do a 5 mile walk today. If I waited until I had symptoms it could be several months further on.

Sorry to say this, but I wouldn't know at this point that I had a recurrence, without the gradual increase in my CA125 level and because of that my Oncologist ordering a CT scan, which showed changes

[Kayp in reply to greenpink]

Thanks for that, as you say I too feel well, except every twinge is psychologically "it" ! Had ct today so now awaiting results again.

[Hertsmum in reply to greenpink]

Sorry to hear you have a recurrence but it's good that you had quite a long remission. I must admit it seems to be a grey area the ca125 monitoring. My oncologist carried out a study comparing women who received chemo straight away with women who waited until they had symptoms and found that the end result was the same. But I know that many others do not believe in 'watch and wait' and recommend treatment as soon as ca125 and scans indicate recurrence, as yours has. It is really quite hard to know what to believe! I hate thought of more chemo - only finished 1st line last November - but don't want to miss any windows either. I hope your chemo goes well. Madeline x

[Kayp in reply to Hertsmum]

I too am sorry about your recurrence, and I agree so confusing to know which way to go ca125 levels or not, ct scans or not , immediate 2nd line or watch and wait for symptoms? I don't know how I will decide if ct scan of today shows anything! I know con oncologists each have their own agenda but which agenda is the right one for me! Just go with your gut feeling I say and good luck with the treatment x

[greenpink in reply to Kayp]

Thanks Kayp. Yes, I must admit I was shocked by the possible course of treatment my Oncologist says I might need, i.e. chemo and surgery, but I realise I need to think what I want in all of this, I feel a bit powerless when they take control and say this or that must happen and quickly. I need to ask more questions next time about why the urgency to start treatment and why she is thinking about surgery too, at this stage. And which agenda is right for me!

Anyway, enough about me! I am pleased for you, your CA125 level and that you feel well. Let us know, and enjoy your summer.

[greenpink in reply to Hertsmum]

Thanks for your reply. I am interested to hear about your Oncologist's study and the outcomes. I am thinking now that the decision to recommend chemo straight away must be based on individual circumstances: my CA125 was 3000 on diagnosis (May 2012) and classified Stage 4, although it seems it has not ever spread outside abdomen. CA125 has always been a good indicator for me. I was frightened by what the Oncologist told me this week, normally she chooses her words very carefully, but I waited 2 hours on Thursday and obviously had a long clinic, many women. She said that I might have to have surgery as well as chemo. Maybe need 4 chemos before aggressive surgery, which would take away part of my bladder and rectum. There would be no chemos post surgery this time round. Or I may only need 6 chemo sessions, with no surgery. I am aiming for the latter. I feel distressed at the word aggressive and the possible removal of other parts. I have a cyst measuring 2 cm by 1cm between my bladder and rectum, with fluid containing some cancer cells, where my uterus was before. The PET scan may show other smaller bits I suppose. Hope not! I don't think she expected me to have such a long period of remission between treatment. And I am pleased to have done so well. Onc has indicated this week, that I could be in for years of treatment now and then, so I hope to be able to stay just ahead of this disease, with hopefully new treatments developed.

I am wondering if other women have had surgery affecting their bladder and rectum. I will post this query up.

All the best to all

[Lily-Anne]

I've been reading lots of research concerning the CA125 and it is madly informative, especially the trials at the moment.

Great news on the levels. What was it on diagnosis?

LA xx

[Kayp]

Only 76 or78 so not a good indicator for me

[Rachael_H in reply to Kayp]

Congratulations, my levels were similar at diagnosis and I'm still going strong and into my 6th year all clear. Xx

[Kayp in reply to Rachael_H]

That's so good to hear!

[Marianna]

Well done. Long may it last.

I had similar and 5 years clear so far.

have a great summer. X

[thesilent1]

Brilliant! Ann x

[Travy]

That's wonderful news. Hope the CT scan is all good. Relax and enjoy the summer!