We have asked repeatedly for this to be done but are being refused. My wife was diagnosed with suspected ovarian cancer (poorly differentiated, might be clear cell) in January. Post 6 carbo/taxol sessions she is now to go on to weekly taxol. They say the risks are too high of not getting all of it with surgery....surely getting some of it would be better than none? They also aren't happy about using avastin, not yet anyway.
Anyone on here with experience of this? We are really worried we are missing an opportunity. It doesn't make sense to keep having chemo while there is still stuff in there that could be removed. It is now showing in a couple of places in her bones which is a worry, this has happened since January.
I have read a few people's experiences here and they all seem to show surgery. They have not said "no, never", just "no, not now". It doesn't make sense. Looking at other types of cancer surgery seems to be the front line defence followed by chemo.
We're getting a second opinion but they seem to be overly conservative claiming that because there may be micro-sites that they wouldn't get they want to leave it all for the chemo.
Although in the majority of cases surgery form a major part of the treatment either before chemo, midway or at the end but I do know a few friends were surgery has never been an option for some reason. I also know with Sandra when she had a recurrence or progression, I asked if further surgery was an option and in her case they always said no, this was on the grounds that if there were too many sites it would be impossible to remove them all safely so chemo was always the best plan of attack. It does,nt make sense to me either as part removal of a tumour seems logical rather than find it invades an organ at some point in the future. We must trust their judgement as we are all have differing individual conditions. Good luck in the treatment. Rgds Paul
Hi JLondon,
Welcome to the club no one wants to join, I am sorry I can't help you with your question, you could give the Ovacome helpline a ring and speak to Ruth Payne tel 0845 371 0554 (office hours only) she will ask you the relevant questions and will advise you on the best way forward.
Best wishes love x G x
Hi Paul, thanks for the reply, it does seem strange.
She is an otherwise fit (seems silly to say it) 33 year old. She has already had both ovaries removed a few years back.
They have said that there are a number of sites but that now surgery isn't a good idea. i don't get why now, when later surely means things would have got worse? It doesn't add up and it is hard to trust them when things have been so wrong this far.
Misdiagnosed late last year she was told she just had a stomach ache (NB same place and people that removed her ovaries for benign tumours). Then Xmas we find out this has spread and is stage 3, no idea what though, and now potentially stage 4.
I don't know what to do but I'm rapidly losing confidence.
I am so sorry that you are going through this at such a young age. It may be helpful to call Ruth, the Ovacome Nurse whose contact details are elswhere on the page.She is extremely knowledgeable as well as being very kind and nice.
As somebody who had a second surgery to investigate pain I honestly think that unless a procedure is likely to be more successful than other treatments it is best avoided. There used to be a theory that opening up an abdomen, moving things around, exposing inner organs to
oxygen and the poor patient to the trauma and all those drugs facilitated spread, but I am not sure if that is considered the case any more.
Definitely press for an urgent second opinion and keep nagging I know what it is like to not feel confident with your care and my heart truly goes out to you both.
How long ago were her ovaries removed and was this done for bening cysyt ?
Take care
Charlie xx
one in 2010, one 2011, both due to benign tumours. then we went for IVF in October and things snowballed from there.
My wife Angie was in a similar position. On diagnosis the plan was, 3x chemo-surgery-3x chemo. At the half way point a ct scan showed a mixed response to the chemo. The oncologists preferred course of action was not to do the surgery as planned but to amend the chemo in the hope of shrinking the cancer. The aim is to do the surgery at the optimal time for a successful procedure. Angie was struggling really badly with the symptoms even after 3x chemo. Her main tumour was 20cm at this time and had not shrunk at all. We were told that if they did surgery at that point, the chances of getting most of the cancer were limited. We chatted with the surgeon and he told us the same thing. However, because of Angie's situation they very reluctantly agreed to do the surgery simply to make her more comfortable. The result, as they suspected, was substantial cancer being left behind.
It's tough trying to understand why the oncologists take the decisions they do, but consider carefully before going against their advice. You don't say how your wife responded to the 1st line chemo but, if they think that further chemo will reduce the tumours more it is because they want to give themselves the best chance of optimally de-bulking. The outlook for those women who have sub-optimal de-bulking is poorer, so I would guess that this is their primary consideration.
The situation seems a tragic one. I agree with the others that you should ask if you could have a second opinion, even if it's just to have another person explain the rationale behind the advice not to do surgery and why Avastin is not appropriate. I posted a blog recently listing the criteria for giving Avastin and it might be helpful to look that up. It was posted on 13 May and is called, 'Avastin - Bevacizumab NICE Approved Criteria'.
Debulking is indeed the general route to dealing with Ovarian Cancer and it is the histology after this procedure that usually informs the grade and stage of ovarian cancer.
Definitely talk to your oncology team again, ask for a second opinion, and talk to Ruth the online nurse at Ovacome. These three things might well help explain what is going on.
I wish you and your wife all the best with this quest.
x Annie
Thanks you all so much. Regarding response to the first chemo, it seemed to stabilise things although towards the end the CT showed things had got a little worse and the MRI confirmed that. I think the oncologist seemed please that things had gone the way they had, we had a very brutal first consultation in January.
I called Ruth and we had quite a long chat, she was very good helping get the facts and ideas in line. Also why they might be doing what they are doing. I think we are doing all we can, which to be honest will never seem to be enough but it's really all we can do.
I think part of the problem is it is a bit like flying. You have to hand over your faith and control to someone who actually knows how to do it. I'm not very good at that.
We have a couple more opinions on the way, one from Imperial, hopefully LOC and also Sloan-Kettering. This may seem OTT but they really don't know what it is here so we have to keep trying.
Going to go away this weekend to have some time together, will be the first break in a very long time. Thanks again for all your support, I will keep you posted on how things go and will go find that avastin post.
I can add little to the above,but do keep fighting for information and answers - I get the strong sense that all oncologists must play a balancing game - risks v benefits, likelihood of failure v success and they all agree that nobody is the same. To me, probably doing all that is possible still bears options for doing more - two second opinions isn't OTT at all in these circumstances; she is unfairly young and the medical community bears some collective responsibility in cases such as this for the delay and misdiagnosis, which is acknowledged as an issue with OC, but they still are not doing enough to act. Even if your fight must evolve from targeting recovery to targeting lengthening her life and thus doing all that is possible to SLOW and RETARD the cancer, you still can do with all the information you can get. My heartfelt hope for you both, keep battling, and yes please do update again when you know more. Whatever happens this forum will be a support for you.
I can't add any help with the surgery question but I think I may give to your wife and you some hope.
I also have clear cell carcinoma, stage IV. It's known to be platinum resistant so it's not a surprise first line chemo has failed - with me was the same thing.
My second line chemo is Caelyx and Avastin and last results, in January, showed tumours shrinking. I'll make a pet scan next 10th, so I can update you about the results after 7 rounds of this chemo.
A coincidence is that my cancer has also appeared during a fertility treatment. And I'm sure about that because I have made ultrasounds before the treatment and my ovaries were ok.
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