TOTALLY PERPLEXED

[Jackie0]

After appointment with my oncologist today, I feel totally perplexed and at a loss.

My debulking went well, however if would appear that the cancer has spread to my lungs. He could not confirm that it was he fact ovarian cancer on the lung, but could only assume.

I am currently on Carboplatin only, he said I would be better with Paclitaxel and then maybe Avastin. I chose one only to start as I did not feel well enough for the two.

We have agreed to review after my third chemo and scan, and then maybe extend the chemo.

However what I don't get is that on the one hand he says that everyone's cancer is different, but then still prescribes the chemo in a bog standard uniform fashion , one approach for all.

Additionally, when I told him how pleased I was about my greatly reduced CA 125 to 19, he said that this test was unreliable, as some of the ovarian cancer cells do not produce the identified proteins.

This blood test to me has always been an indicator for hope, take this away and what is there??. It seems to me that too little is known about the actual cancers, and too much left to chance.

In fighting cancer we have to have hope, without this the fight may be futile.Sometimes the consultants need to recognise this.

Sorry to be a misery, any thoughts would be greatly appreciated as always xxxx

[daisies]

Hello. It sounds as if you have lost faith in your oncologist, but OC is such a strange cancer, and to make it worse the CA125 levels we are so concerned with, are indeed, only an indication that OC is there and only in some women. In my case, we (oncologist & myself) don't take too much notice and it is CT scans & ultrasounds that show changes in me. Have learnt to accept this and I trust my body to let me know when something is happening. In relation to the drugs..... I am on carboplatin, taxol & avastin together and while not 'nice' it is the recommended regime for me. That combination of drugs is used for a myriad of cancers and also the various forms of OC.

However, having said all that, is there a liaison nurse or cancer support group in the hospital or in the area you live. Sometimes it can help to talk to someone who is not closely involved to allow us put things in perspective.

I do agree with you that too little is known about this disease and how it spreads and acts in each of us. Mindeis still 'contained' in the abdominal area and while initially there was some concern about my lungs, it seems it was just the pressure of ascites caused a build up of fluid in one lung.

If you are happier with one drug only, go with that.

best wishes to you, from an equally perplexed woman.

Daisies

[Lily-Anne]

First of all I was sorry to read your post as you are obviously feeling quite upset, and I totally understand why, as the CA125 although never above 35 for me(to date) a lower reading does make me feel better. One of the things you have mentioned has been my soap box, why a uniform treatment for a cancer that acts uniquely in everyone, I find that worrying. There isn't enough research although there has been a fair amount of investigation in Sweden with some very positive results.

I do hope that whatever your treatment choice, it is a success for you. Please keep us updated. Sending a virtual hug.

LA xx

[cancer48]

Dear Jackie0 I wish I could find some words of wisdom for you as you and so many of the ladies on here have for me ,firstly I send my love and from the one who sacked their oncologist and cancer hospital straight after my last chemo in June ,I understand how you feel .It gets my goat when they say the CA125 is not always reliable WE know but it's all we have got !!!!.I lost faith in the medical profession not long after I was diagnosed in December so I question every thing now ,please look after your self and make sure that you're oncologist is looking after you ,if not kick their bums !!!!!!xxxAnn

[ScardyCat40]

I completely agree with everything you have said. In my case chemotherapy is not a particularly effective treatment because I have the low grade disease. I have had carboplatin twice and each time I have not completed the course because my CA125 levels have flattened out or have started to rise. My last CA125 3 months ago was 160 but at the moment I am not having any treatment and I am feeling fine. I have a CT scan next week then I will see the consultant the week after. Technically I am on watch and wait because last CT showed some small areas they are very small my consultant showed me my CT scans. This was both fascinating and disturbing at the same time. I also agree that consultants don't often think about the impact that their words have on us but I also think it is ok to pull them up on it. With regards to treatment options they are limited but the goal is to move towards more individualised treatment plans and might want to ask about drug trials. I was hoping to get onto a trial for a new treatment for low grade cancer but I did not meet the criteria and since then a lot of my symptoms have settled down.

[sharonforce]

Sorry to hear what you are going through. Although my CA125 never gets really high it is always a good marker for me. I have absolutely no symptoms from my cancer each time it has recurred so a rising CA125 is my first indicator, then confirmed with a scan. I asked for a referral to a cancer specialist hospital (after two years) when I was concerned that I wasn't being offered all the options available for treatment by my oncologist at my local hospital. If you are not happy, do ask for a referral for a second opinion. They might say exactly the same as your current oncologist which would then reassure you. Or they might be able to offer you more information or alternative treatment choices. In my case I thought I live just under a 100 miles away from one of the best cancer hospitals in the UK, and I am able to travel, why would I go to a local hospital that, with the best will in the world, are unable to offer alternative treatments or trial drugs.

Never give up hope and sending you very best wishes.

Sharon x

[Madz]

So sorry that you feel so perplexed and upset, unfortunately medicine is not an exact science and in my experience oncologists try to do the best that they can with the tools they have and are allowed to have by NICE et al. They are also only human and some are better than others at communication just like the rest of us, I'm lucky my onc is fab and I feel like I have some control but options are limited and there are choices to be made. I have lung mets and have done right from the start I had carb/paclitaxel a year off and am having them again plus avastin, my ca125 does not rise much (65) at peak but my onc says gives a trend and we review it every so often to see if it is going up, for me 20 would be high, if you have lost faith in your onc you can change them depending on the size of your trust or if it is a smaller centre ask for a second opinion. NIce have recommended pathways for most things and cancer treatment does not escape that so you can go online and check options for all sorts for what the NHS is "allowed" to do and that varies outside of England so the UK is not equal either! Truly hope that you gain more confidence in your onc or change and that you start to feel better soon, I'm working full time so my lungs aren't slowing me down yet and I rely on my ct scans to tell me what's occurring and how I feel OC is subtle and insidious so unfortunately we don't have much to help us out, take care and keep asking questions - CNS, ovacome helpline, Macmillan centres etc may give you some more help too. Big hugs lovely xxxxxx

[thesilent1]

Hi Jackie. It is confusing, isn't it. I suppoise one of the problems is that there hasn't really been any new treatments in the last 20 years, we are so far behind breast cancer in this regard. CA125 is a n indicator for me too but I am aware that for some, their CA125 level has never gone out of the normal range. Mine was. 1608 at diagnosis last year and I was always anxious to learn the new result each time I went for treatment and was so pleased when it kept falling, eventually ending up in the normal range. This gave me tremendous comfort, confirming for me that the treatment I was going through, with all its side effects, was worth it. We definitely need hope. I remember either reading or hearting somewhere that ideally they would like to be able to treat each specific form of ovarian cancer in a way tailor made for each type. I suppose that will be some time off as they are still doing lots box research.

In the meantime Jackie, hang onto hope. We need to in my opinion. Lots of live. As nn xo

[Jackie0]

Thankyou all for your words of support.Its a new day today, the sun is shining and I don't feel too bad.Yesterday was a bad karma day,have told myself not to be off put by proffessionals and to keep my positivity.

I love you all and salute your courage and inspirational support.What a great band of sisters,wished we all lived close,what get togethers we could have

Last but not least Thankyou to Ovacome for this wonderful website which has given me the support and hope and wonderful camaraderie xxxx

[babsclunn]

Dear Jackie really sorry hear your news I went on avastin after three sessions of carbo/taxol and did clear my lung I had debulking five week ago going back on avastin as soon as wound decides heal properly I know what u mean about the ca125 reading as I always ask them results hope they manage sort it out for u soon x

[Hidden]

The thinking over hear is that ca 125 is a reliable indicator when diagnosing at first and during treatment. You can unfortunately get a false negative for recurrences. I do so they also go by ct scans. The Avastin is a targeted therapy and I have been on it for almost twelve months now. I had initially Gemzar with it from Oct to Feb but now on Avastin alone. I am due a scan in October and see the onocologist then and he will decide if we just watch and wait or act. I have to say, I have complete faith in him because on first recurrence, he and his team were so good and caring. I thought because it came back that I was a gonner and so did they. But luckily mine is confined to the one area in the tummy. Last ct scan showed tummy lymph nodes up a fraction but that can happen if you are fighting an infection so its wait and see. I would be more inclined to go with the result of a ct scan. If you are worried, do find a nurse to talk to. Also if there is a cancer support group in the area you live in, go along there. The nurses in your onocology unit should be able to help you. If you arent happy with your oncologist, I am sure there is a way of getting a second opinion. It is a hard one and life isnt easy for sure.