Watch & wait ??

[meboo]

Following Avastin tagged on to first line last year mum has had a slow increase in CA125. Between Sept & now it's gone up from 8 to 70. She has no symptoms. Today she has been told scan then 2nd line chemo. I asked if they would consider the scan before deciding to watch & wait, or to proceed with chemo. Reg saw her & said definitely to proceed to chemo. I was expecting a watch & wait until the numbers increased significantly or she was symptomatic. Any thoughts ? Thank you !

[TrishLey]

Its a hard one. I personally don't like watch and wait. I tried it, I don't think it worked for me as I then waited a wee bit too long. So I set myself back at least 8 weeks with treatments. Hope this helps give you some sot of insight. There are load of ladoes on watch and wait that are pefectly happy.

xxx

Trish

[Katmal-UK]

Hi. Im like Trish I dont even like the idea of watch and wait and have never actually dont it. Ive started chemo as soon as my CA125 has started to climb and a scan shows disease progression. I believe if you catch it when its smaller theres better chance of getting rid of it - just my personal view but my way of coping . I wish your mum all the very best xx

[meboo]

Thank you both. It is really helpful to canvas opinion. I know that with this disease no-one knows 'the answer'. I also appreciate your response even tho I don't often post. I visit the site often and have obtained a huge knowledge through your experiences which I try to use to support mum. I am conscious that I can't offer first hand opinion as I am not in the situation of having the diagnosis.

[Hidden]

Hi Meboo.

I find this a highly debatable dilemma. When I had my first recurrence, I knew it was back because I had a swollen lymph node in my groin. I was also almost at the limit I'd been told it would probably return. My onc was of the view we should watch and wait - his reasoning being that there are only so many weapons in the armoury to fight this disease, so let's not use them all up too soon. This sounded reasonable enough but I couldn't help thinking - it's in my lymph system, which gives it a nice avenue to travel & lodge itself in other places. This it did - on my liver & in my breast. My onc went on hol & I saw his partner who told me about the avastin trial & was I interested. Indeed I was and now many months later I'm back in remission and still on the avastin trial. I know my good fortune won't last forever, so when the OC visits me again, it seems to me that it has a few more sites (liver, breast) that it may be able to launch itself from.

Keep supporting your Mum. Best wishes - Pauline

[meboo in reply to Hidden]

Thanks Pauline. Mum had Avastin as part of first line, and for her is got rid of the remnants that chemo had not managed and we do wonder if her remission would have been longer if she remained on Avastin. Best wishes to you.

[vmichel]

Hi Meboo,

Watch and wait was not an option for me neither (and when I look back at the time my CA125 started rising again, ie one month after being NED..., I'm not a watch and wait person, my level of stress was incredibly high - which does not help with this ... disease). I'm high-grade and it's evolving quite rapidly (I now have nodes from neck to groin). I was also told I would have a scan and start chemo once they got the results (my CA125 is pretty accurate, and probably your onc found your mum's is also...). However, from what I can see in France, they only start chemo when spots display on scans.

All the best to you and your mum - Véronique

[meboo in reply to vmichel]

This is a very late reply Veronique, as I am reviewing all the responses in the light of Mum's latest scan. I think Mum is similar to you - she is high grade (we assume serous) and her CA125 is a good indicator. The scan has shown 4 visible tumours, and so we are satisfied it is time to restart chemo.

[thesilent1]

Hi, I suppose it depends on a lot of factors really. Mine came back 8 months after comp!etion of 1st line treatment. I was devasted at the thought of having to go through chemo again so soon. However my oncologist assured me that the tumours were small, 3 of them in pelvic lymph nodes, and I could go on watch and wait. She explained it would be better for me if they could get me to a year post chemo and there was no evidence to suggest any benefit to rushing into chemo straight away. I therefore embarked on watch and wait. That was in August 2014.

My tumours continued to progress but slowly and it is only noiw, some 18 months later that I am heading for chemo. Have scan on Tuesday and I expect to be called after that.

I'm not going to lie to you, it was difficult at first knowing that this disease was active again but I was scanned every 3 months and each time I saw oncologist I was reminded to contact the CNS if I developed symptoms. I soon settled down and lived my life. I put the fact that I had active cancer on a high shelf and just got on with things. It was tough at times, you do have a tendency to wonder if every wee twinge was something to worry about. I told my oncologist I was worried in case I wouldn't recognise that it was getting worse. She assured me I would and gently reminded me what to look out for.

I am a great believer though in being guided by the experts. We are only expert in how we feel with this disease, they have years of experience in the treatment of it.

Ann xo

[meboo in reply to thesilent1]

Thank you Ann. It was actually seeing your story that had given me hope that Mum might get longer before she had to return to chemo. It is clear that watch and wait has worked for you. This disease does seem to be one of swings and roundabouts! Mum managed to go 13 months post first line before her CA125 started to rise, but it seem that her tumours have grown fairly quickly since then. She starts chemo in a couple of weeks, which will also be 18 months since her last treatment so it seems that you both went a similar time but via different routes! I hope your chemo is successful and without too many effects on your life x

[thesilent1 in reply to meboo]

Thank yoiu. You'll be pleased to know that with that kind of space between chemo treatments, her chances of a better outcome are higher. Which is good. I knew by how I was feeling and symptoms i was having that it was time tgo start again. I am staying positive and constantly remind myself that I AM NOT A STATISTIC! You stay strong for your mum and remember to take care a d be kind to yourself too. This is hard on the whole family, not just the patient. Let us know how she gets on. Ann xo

[gailhay]

I wanted to go on the watch and wait as I had seen a friend do this and she had a year of being physically well before becoming symptomatic and then starting treatment. Her ca125 came down from 3000 to 19 after 2 treatments so for her I think it has been good. Sadly mine has return 8 months after finishing avastin with a central chest node that they don't want to watch and wait on as it is near to my heart so am going on to 2nd line now. You hope that you are the one that it doesn't recur in but sadly - like many of us - I'm not that lucky 😩

[meboo in reply to gailhay]

Mum also had avastin & CA125 started to rise just one month after finishing it ! However that was 12 months after last chemo so I think that's a good thing. She's now 18 months since last chemo

[Hidden in reply to meboo]

Well that is a good time from last chemo to be honest. I know you would prefer not to have your Mum have treatment yet. My recurrence was not diagnosed for at least six months after I had symptoms but my 125s were normal and they wouldnt do a scan on that basis. Six months on, I had lost weight, still in pain and my dependable gp sent me to a rheumatologist. This guy gave me injections and sent me for mri. Mri showed cancer back so then the hospital moved things. I was so sick the oncologist was extremely worried, it was the gynae and team who had fobbed me off. So it is really better to have treatment when you are well enough to have it.

[trix70]

Hi, I did watch and wait and went into a trial, although my Ca125 was rising fast and over 500. At the time it was over a year I think since I had had my last chemo. Unfortunately I did not ask about my ca results whilst in the trial and they left me too long I think, by the time I started chemo my ca was over 8, 000, it had spread in the liver and I was having symptoms. Started carbo/Caylex for 6 months, did not work, even though it was then 2 years since I had chemo. Now on weekly taxol which is working.

I would say, see what the scan shows but don't leave it too long like me, too much spread but I blame the trial team for that. Good luck.

[IrishMollyO]

Hi Meeboo

I know that a lot of women and their medical teams are happy with watch and wait policy but for me personally it is beyond stressful. I would even call it cruel . It would appear to me that it is all in the hands of the doctors who I am sure would not find it acceptable themselves. If however you are given a choice and it is explained properly then that is fine. I'm sure your mums registrar has a good reason for going ahead with chemo so you should ask for an explanation again. Again this is all my personal opinion and not meant to influence anyone in their decisions . The big question for me is we are told to wait as long as possible to treat for recurrence but how do they know it makes no difference to the outcome. Maybe I am missing something but I would like a logical scientific explanation . I wish your mum all the best in her treatment . She is lucky to have a caring daughter looking out for her.

XXX

[Hidden]

I heard a gynae oncologist say last year at a meeting that there is no proof of better prognosis between starting treatment early or leaving it until later. Perhaps he was trying to cover his tracks I dont know. I do believe in my oncologist and if he said watch and wait, I would go with him, if he says, we start now while you are well and able to take treatment that is fine too, You could always ring the Ovacome Nurse to discuss this or get a second opinion

[Whippit]

Dear Meboo

I was quite surprised to read your Mum's team have prejudged scan results and are putting her on 2nd line chemotherapy based on a raised CA125 and no symptoms. I've always been told by my team that they make decisions on a combination of factors and my team at the Marsden say that diagnostic imagining is most important. For that reason I'm having both a CT and an MRI scan next month to ensure they get as much information as possible before recommending the next stage of treatment.

I realise I'm very different to others about 'watch and wait'. It just goes to show how different we all are and how our care needs to be tailored to what is going to help us thrive best.

I even think of 'watch and wait' as 'forget about hospital appointments and enjoy yourself'. I was in remission for 12 months after my first line of chemotherapy. That was average for my stage and presentation. I didn't start treatment for another 12 months and I loved the break from hospitals and the freedom of being able to plan things and do things when I wanted.

After 2nd line I had just 8 months' remission, but another 10 months before I restarted treatment. My 3rd, and the last line I had there was no remission. I was in some pain within a month of stopping chemotherapy though the scans showed there had been a lot of shrinkage of tumours during treatment and my CA125 plummeted to within the normal range. That was back in November.

I still haven't restarted chemotherapy. I've had a wonderful 3 months' break. My hair has grown back, and I've done some fun stuff like a holiday in Rome and organised a multi-sector cancer event in Cardiff.

I expect I may be offered another line of chemo when I go for my next appointment in March. I don't fear taking the advice to hold off treatment because there's no scientific double-blind to prove that a single patient holding off is any worse than going straight back on treatment. For me, it is good for my head and my happiness so I'm happy with that.

I think all we can do is listen carefully to the options our team give us, take their advice and make choices that we feel are the best course of action for each one of us though this thread just goes to show that there are many different ways of thinking about treatment plans.

I hope the next consultation goes well. If you're not sure about the advice you've been given you could ask for a second opinion, or at least ask why your mum's team appear to be making decisions in advance of the scan results. Could it be the presentation of her cancer or the type?

Take care. Let us know how things go. Sending loads of love xx Annie

[meboo in reply to Whippit]

Thank you Annie for your carefully considered reply. I have now provided an update and you will see that the scan has supported the need for treatment, as the return is in 4 different places with a reasonable pace of growth. I do think if her tumours were tiny and slow growing she could have coped with the watch and wait. We did have a frank discussion with the Consultant and we feel that if she had asked to wait for chemo, he would have supported her decision, but we all felt it was appropriate to go back on chemo.

This brings me on to another point, which is that, if it wasn't for this site and the ladies & families who post here, we would have had no idea that watch and wait was an option, and therefore we would not have raised it with the team. I am truly grateful to everyone who shares their story and offers opinions.

[lethaw62]

Hey Meboo,

I just went through 5 months of avastin with a wait and see attitude on scans. Well, after 5 months on avastin alone my cancer has advanced and my Dr told me it might be time to just treat the symptoms. I told him no! No more waiting, I did have a set back with my heart, so I understand his trepidation, but come on I'm only 53, in relitivaly good health and I'm still breathing.

My first go round with this disease I went into hospice quick, my Dr told me "most people don't last 3 months" everyone but my sister and me gave up. I kept saying I'm not sick from the chemo. My sister pulled me out of hospice and to the er and luckily I had an open wound that decided to bleed and while they were treating that they found the H pylori virus. After a month in hospital and a month of rehab, I was back on my chemo and then remission. Unfortunately the cancer has come back I switched Dr's because of lack of care and now I feel my Dr is appeasing me. I cares but I think he's not a fighter.

So, after a novel I'm back at my main point, wait and see is the worst.

[meboo in reply to lethaw62]

We have a wonderfully supportive GP who really does believe in his patients. Obviously he is not naive and does not suggest health is mind over matter, but he does know his patients really well and when my Mum had a recent set back (not directly cancer related) and we were all told to prepare for the worst, he actually stuck his neck out and told us as a family that she would get better because she was not ready to leave us. Well, all the consultants who purely looked at the medical facts were wrong, and our GP who knew her as a person was right! I know it's hard, but try and find yourself a Dr who will fight your corner and have faith in you. Good luck

[meboo]

Thank you all for your responses. We do trust her team but the reg seemed surprised that her bloods were back so it seemed to be a spur of the moment decision. Hopefully (!) I will not be able to update you for a while, because all being well, she is waiting for a non urgent scan before seeing the team again end March/beginning of April. I'll let you know what the outcome is then, but will have your comments in mind. It was also interesting to read the link put up by Overcome yesterday. The official

Answer seems to be that there is no official answer !

[meboo]

To all who responded, I have just provided another update