Silly question I know but here goes.

Say, for example a person had widespread tumours of the abdomen which I had and there was a good response in that no tumours were visible at CT. The doctor suggested that there was no evidence of disease and the patient was given a 4 monthly appointment to revisit the hospital. Does that mean that the cancer has gone away and has not caused any longlasting damage to the peritoneum and other organs? Does this mean too that the ascites and the tumours have not sparked the body into producing any scar tissue (which I have extensively anyway)? Basically, I'd like to know if a complete response to treatment means that the abdomen is in exactly the same position it was before the disease turned up. An explanation would mean a lot to me.

[Hidden]

The whole scenario doesn't apply to me by the way as I had a partial response. My disease is the resistant type.

[iamstillme]

Hi Tina . As far as i would take this it would mean there is no cancer present , as for the rest i am not sure . Why not phone the ovacome nurse

Ally

[Hidden]

Hi Tina,

I am sorry I don't know the answer to this,I would think that if they are so small or that they have gone, then they shouldn't cause a problem at the moment, but it doesn't mean that they will never cause a problem....for instance there are some that have tumours that are dormant ie. they haven't gone...nor are growing either...so are doing nothing... they then monitor them to see if they activate..I have nodules that were there on my first scan (when I was first diagnosed) but they haven't grown or shrunk..but are still there..when I had a recurrence it was in a different place..but the nodules might or might not grow therefore they just wait and watch..I hope this makes sense? but I don't think after having had cancer that we are the same...the treatment in itself does some damage to our insides so we can't possibly be the same..my tumour has gone now and I am in remission.. But every time I see my oncologist he reminds me that I am not cured..so I guess that is the answer to this. Love x G x

[Jorja in reply to Hidden]

Hi Gwyn,

I am in the same situation as you, my reoccurence was in a different too place and I was told after my 2nd lot of chemo that it hadn't grown but it hadn't shrunk so now watch and wait, this was back in June 2010 and I have had nothing done since then just 3 monthly check ups and blood tests, my CA125 is around the 60 to 70 mark most of the time, I often wonder whether I should be having scans to check if it has grown but my Onc says wait until I get symptoms, as I am now going into my 5th year I am just a bit apprehensive about things, I do get discomfort in my tummy but is quite managable, my Onc also says she can't cure the cancer only monitor it, she says she is happy with my status right now, do you have scans or are you just wait and see for symptoms too. xx Jorja

[Hidden in reply to Jorja]

Hi Jorja,

No scan... No blood test...Just examining my tummy...my recurrence wasn't in my tummy anyway... Hence my oncologist missing it for over a year..I don't feel examination only is enough..but this is all I get... and about three or four minutes of my oncologists time (my husband times him) you are doing better than me as you do get a blood test...and my oncologist ignored my symptoms for over a year... and then he said it don't usually turn up there...I hope this helps best wishe x G x

[Cadbury]

Dear Tina

I do not think that it is possible answer to this question with any accuracy. I have often wondered if any of us return to the person we were after being bombarded with chemotherapy. Oncologists maintain that the body repairs itself after chemotherapy but most oncologists have never been on the receiving end of this treatment so do not know what it feels like or fully appreciate how problems with the bowel or loss of sensation in the feet can linger.

I have also come to realise that oncology is not an exact science. Oncologists prescribe the relevant doses of chemotherapy drugs and hope that it works. Patients respond differently so there is an element of educated guess-work going on. With adjuvant chemotherapy, the treatment may not even be necessary, but without a crystal ball an oncologist will recommend a course of chemotherapy just to be on the safe side. Also, women are given 6 cycles of treatment as a standard recommendation. There are no studies that evaluate the response with 4 or 5 cycles which may be sufficient in some women with Stage 1C, given that every patient has an individual response.

OVCA is a sneaky disease. Every woman undergoes close monitoring for 5 years after treatment because of the possibility of recurrence. It means waiting and watching to see whether or not a complete response to treatment is in fact the case. A pin-point cancer will not show up on a scan but may make itself known in the course of time, either months or years later. There is no set pattern and it is very hard to predict.

I hope that this goes some way to answering your questions.

Best wishes

Isabelle

[Whippit]

Dear Tina

No question is a silly question. It's an interesting one. I have experienced exactly what you describe with the tumours having spread widely and deeply into the back of the abdomen in the Lymphs so that they couldn't be removed by surgery. The prognosis after my operation wasn't too good and the surgeon suggested I might not even think about returning to work as time might be limited.

After just one infusion of carbo-platin only my CA125 count plummeted to 22 to which the prescribing oncologist commented that her patients never ceased to surprise her. After 5 more infusions of carbo-platin alone my count was down to 7 and has only risen by one point in the following 9 months. I go for another test next month to see how everything is going on. Isabelle makes an interesting point about standard procedures and I understand there is some research going on to query whether some patients would do just as well with less chemotherapy. I happened to have only one chemotherapy by complete chance - there was an admin error so no places for me to have Taxol as well. I'd welcome more research to ensure we're not subjected to more chemicals than necessary.

The CT scan at the end of the chemotherapy showed no sign of the tumours but some scar tissue so I'd imagine in your scenario it is likely that scar tissue will remain and the abdomen doesn't return to it's pre-cancer state. Having said that a tumour has to be larger than 1 cm to show on a scan machine. My outcome doesn't mean that I have been cured. I have Stage 3C so it's just a matter of managing it and seeing where and when it crops up next time. As Isabelle says there's no way of predicting how it will go.

The one bit of advice I do recall is the oncologist telling me that the cancer may well grow back in a completely different form and that radiotherapy, which wasn't suitable last time, might be an option if the cancer presents as a solid mass rather than as little florets.

I hope this is helpful. As Gwyn says it changes us forever but I still think that some of those changes are not necessarily a bad or negative thing.

Take care. xx Annie

[shen]

hi

ive just read all ur mess... u ladies really surpprise me... u all know so much.. i have brried my head in the sand for so long...i have learned so much from u all... instead of seeing my oncologist saying good morning.... and listening to him... im going to start askin so many many questions... i need to know things.. not just be told ....hes lovely man and so busy.. but i want to live and to more to help me live

thank u so much

shenx

[Hidden]

Hi all... thanks for your replies. I'm really grateful. Sometimes my oncologist says things and I can't actually visualise what she says. I'm not sure if I deliberately mishear or misprocess the information she gives me. Maybe it's a way for me, deep down, to evade it all. I know that she said I had a partial response. My disease is low grade but I'm stage 4 with mets to the lung and more significant clusters on my liver. The growths were found like measles throughout the abdomen. I was told that they're probably still there but mostly switched off although there is evidence of slow growth now. So I imagine they're like skin plaques which are obvious by sight but they're not inflamed. I haven't seen an abdomen in my state so I wouldn't really know.There are dense adhesions everywhere and there are even growths on them too. How can that be I wonder because I always thought that adhesions had no blood supply to them and they were like chewing gum to look at. I think Isabelle is right when she says that it's not an exact science. My oncologist too said that she was adopting a watch and wait approach and that there may be a time when the cancer changes form. I was given a poor prognosis at the start of the treatment but it's a year next month since I finished it. It's hard isn't it but I'm glad I have wonderful people like we have on here. Thank you all so much for replying. xx