Was wondering if any of you had decided on a watch and waitwith their cancer and if so , how did you cope with it mentally and what was the outcome?
I am very reluctant to start chemo so soon after finishing my last lot (4months) but I'm also very scared of what the cancer could do if left to it's own devices.
At the moment I am very well and have no obvious symptoms but I'm worried that by waiting for symptoms and becoming unwell I'll be less able to cope with chemo.
It's such a difficult decision to make and I desperately need some guidance/advice.
Please help!!!
Lisa xx
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Hi Lisa,appreciate how you feel. I too am basically on watch and wait.
No chemo for 11 months now. Have three monthly oncologist meetings. At the last one, because I was feeling well, the doctor was reluctant even to have me scanned, obviously concerned regarding the possible side effects.
I have stage 4 OC with legions on my lungs which remain pretty much stable.
Bottom line I think is that if you feel well then why put yourself through unnecessat chemo .Obviousky the CA125 test is also a good indicator together with your health.
I totally understNd you worrying as I do, often feeling that the clock is ticking!,
But good health has to be embraced and enjoyed as much as we can
Hi there .. I have asked about that and I asked my oncologist to write to The Christie which she did as a preliminary to referral. Since then, I know of someone who was knocked back. Added to this, CA125 isn't a marker although I'm not sure it needs to be as there are areas on the liver surface to measure and in the lungs too.
Are you on the MEK? I was wondering how you're doing.
I'm low grade, had radical hysterectomy Feb. 2104. -staged 3b.
I've only been under The Christie for 2/3 months being transferred from previous hospital.. I was on watch and wait there. Having updated and having had new CT scan, etc. I've now been put on Letrozole and being monitored every two months. Early days yet. However, when I first was seen by the Consultant he mentioned the MEK trial as a possibility for me, being low grade but, as I say, they have put me on Letrozole.
I would chase up your oncologist re.referral to The Christie for the MEK trial. I don't know what the requirements are in order to get on the trial. Perhaps you can look it up!
Hi Gwen .. Thanks for the info. I asked about hormone therapy but I was told it isn't the policy at my hospital because women don't comply.
I asked whether my tumour was hormone receptor and was told that there was no need for testing as only uterine responds to hormone therapy. (I've never read this.)
When I asked about getting a scan, I was told that I could have one but treatment won't start until I have ascites in any event. I sort of understand but then think, wouldn't it be better to stop the growth or at least delay it, in the first place?
I've been left very confused to be honest. I was referred to the hospice and it'll be two years since that referral next January. I've had no scan since November 2013 and I can't see the point of going to the hospital if it weren't that they promised me a final push of chemo when I'm very sick.
I don't know any late stage patient on here who is having planned non-intervention.
I'm going to have a real think about what you say. I go back in January so I'll mention it then. I read the criteria and it says that there should be measurable disease which I have. It says that CA125 alone is not enough but it doesn't say what happens when the level is always normal even at diagnosis when I was very ill. This is something I'll bring up I think.
I've read your update. I must admit I'm confused about certain points, possibly because I'm not a medic of any type!
Why does your onc. need to send a "preliminary" to The Christie, why didn't she just make the referral? You are entitled to a 2nd opinion wherever and whatever.
I asked my GP to make a referral to The Christie which she did immediately and I was seen within a matter of weeks. Regarding hormone therapy - I don't think I've been put on Letrozole for kicks!! If you look at cancerresearch.uk.org site, at hormone treatments it states "a small study has shown Letrozole can stop the growth of OvC for some time where there are oestrogen receptors". Mine has been tested and is strongly oestrogen receptive/progesterone negative. The site talks about other hormone treatments amongst other various treatments. Further, I don't understand why you have been told that its not policy because "women don't comply" - what does this mean? You're not "women" you are an individual!! Also Tina I know you say your last chemo was only 4 months ago, why have you been told that they won't treat you further until you have ascites. Have you run out of chemo treatments or are you resistent? If you haven't had a scan for nigh on 2 years how do they know what's going on in your tummy! Looking at the criteria for the MEK trial (which I haven't done) you say you need "measureable disease" - you sure have this - the CA125 is not relevant, as you say it was always normal even at diagnosis! Finally, Tina I also don't understand why you are having "planned non-intervention"!
It would be interesting to read what other members on the site have to say!!
Hi Gwen .. I had treatment in 2011 and had a partial response. At diagnosis, a sample was taken for analysis by laparoscopy. I didn't have a hysterectomy as I'd already had one but I was told that even if I hadn't, the surgeon wouldn't have done it as he said the disease was too widespread and he didn't want to battle with the extensive adhesions.
The disease started to spread though slowly but a large tumour at the front above the naval was pushing into a hernia and showing through my clothes.
The tumour became necrotic though not because of the hernia, and I was seriously ill at my local hospital. The surgeons took me to theatre in the early hours on a Sunday and hubbie was told I was critical. I was told I would more than likely have a stoma, but I didn't know I might not have made it.
A few days later, the surgeon said I had advanced, progressive disease. When I asked if I'd start on treatment, he shook his head and said it was very much calcified. He was referring me to The Women's for treatment.
What I didn't realise was that when they grow and calcify, they are dead in places. They are essentially tightly packed, creeping psanomma bodies at the surface of which, there is active disease. Add this to widespread calcification, and you'll get the picture.
The disease is now low grade with high grade features. In other words, faster growing in places and more invasive. He trouble is, if the faster growing disease is targeted with, say, carboplatin and Taxol this time, the slow growing disease will probably not respond and I'll be platinum resistant. Low grade has fewer treatment options than high grade and carboplatin and Taxol are the main drugs. It'd be interested to know if any low grade friends have had Gemzar, Caelyx or some other drug. I've never heard that they have or been effective with low grade disease.
So, basically, the carboplatin is being kept to use to stop ascites when it returns. I've put weight on recently and I know it's some fluid. I think it drains but slowly. I'm not sure.
The whole thing leads me confused. When I had the necrotic tumour removed, it was send for analysis with some other tissue and the same was done by The Women's when I got there. I thought the receptors were being checked for response but it wasn't done.
I'm going to print out your response and mine here to show my doctor when I go if that's ok.
Thanks so much for your detailed reply and for caring. I really appreciate that. Xxx
Thanks for the full picture. I too have areas of calcification but didn't really know what they were - so thank you.
By all means show your doctor my response; I hope you can get a bit more action! Whilst I know there are going to be limitations to what medics can/can't do for us, you do have to be your own advocate which is why I try and learn through the experiences of other ladies on this/other sites for OvC and by looking at research. Please let me know what your doctor says. Remember you can ask for a 2nd opinion which may confirm what your doctor says or otherwise!!
I too have done the watch and wait and went into a trial at the same time.
I have mixed feeling on this due to my experience.
I have done the reading and talked it through at length with my then oncologist, and the results show survival is the same overall if you do watch and wait, or go straight to chemo, and quality of life is better without it.
When I had my first reoccurrance in 2013, volume of tumours was low and my ca125 was 1045 and they started chemo carbo/taxol and I had the perfect result, all gone and ca back to normal in 3 chemos.
This time nearly two years later my ca was rising by at least 500 per month , and I know it was much higher than last time, and the scan revealed , some in the abdomen and now at least one on the liver. I was told no chemo but I could go into a blind trial of immunotherapy or be seen in 3 months. So I chose the trial and started in Dec 2014. I don't know if I got the drug but if I did it did not work and my first scan in the trial on March 9th revealed more tumours in the liver.
As I was not showing any symptoms they left me for another 3 months, by then I was symptomatic and I practically had to ask to start chemo ASAP as I was suffering.
I had not asked my ca 125 after I started trusting them to watch it, so was horrified when I found out it was nearly 10, 000, and by the time I started chemo it was over 13,000 !!!
I now think they should have pulled me from the trial after the scan on March 9th, 3 months earlier, it was obvious that the trial drug was not working if indeed I was on it, maybe the liver ones would not have spread as much as they have, I know the thinking is that if a drug is going to work it will work on lots of tumours as well as just a couple.
In the USA they don't seem to do as must watch and wait.
Sorry this is a long blog , just my thoughts, all I would say is think about where your cancers are, , how much, watch your ca like a hawk if it's a good marker for you, get it done by your GP if the oncologist won't do it.
Just be vigilant and proactive, if you don't feel right get back to them straight away. My fault for going with the flow and not asking questions.
Once you accept that you feel good and are on the watch and wait it's ok, it's just that I went too far.
Thanks for your thoughts Trix. I do think that some cases of high grade and low grade are different in the way doctors intervene. I don't think I'd be happy Watching and Waiting if I were high grade.
I have a new growth at the front which is becoming noticeable. It seems to have replaced the old one which was removed when it became necrotic a while ago. Some of my low grade is not so slow growing now but if I have chemo too soon, I'll be left with platinum resistance of the slower growing ones. That's how it was explained to me by the Registrar. Since low grade has few treatment options, that's not what's wanted. Xxx
Hi Trix .. I think Warch and Wait used to be called Watchful Waiting. Is there a difference between having a break of chemo (which I can understand) and then waiting for blood markers and/or symptoms and the other way of doing it and waiting for just symptoms?
It seems to me that W and W is being interpreted differently across doctors and hospitals.
Someone on here said that the theory you mention (meaning it makes no difference) is based on only a small study.
I hope you get some answers soon to put your mind at rest.
The symptoms were stomach cramps like childbirth, extremely painfully and you needed the toilet fast ! Then you would sit for ages just going and going and going, the oncologist said when the cancer sits on top of the colon it does not like it and this is what happens.
Also a bad pain under my right shoulder blade and excessive belching with it, took all known remedies but could not stop it for 48 hours,
Ovarian is a very windy cancer I read and mine certainly is.
That's when I rang my nurse and said I needed to start chemo ASAP, and not in three weeks as the oncologist had planned.
My other symptoms which just might be mine, I sweat at night, all around my neck and chest, and the bottom of my feet burn. I have had this each time.
I know the idea of watch and wait is not everyone's way of doing things.
I've been quite happy to watch and wait because it doesn't worry me. For nearly five years I had no symptoms between treatment and the oncologist who has been monitoring my CA125 and scans has been is happy with the status quo. I think if I were unhappy with the situation or couldn't function on watch and wait it would be better to restart chemotherapy.
I've done my best to be realistic and I've tried to adjust to living with a condition that will one day kill me. To my mind quality of life is paramount and as there's no double-blind I'll never know whether my decision to watch and wait will adversely affect the length of my life.
I think it's best to listen to your oncologist and do what you feel is best for you and not worry too much about the long-term consequences.
It is a hard choice but I was on watch and wait for a while. The tumours started growing and CA125 rising slowly back at the beginning of the year. CA125 went to 300 by May and avastin, which I was on as maintenance, was stopped. Then the Ca125 went to 500 but then down to 450 and up to 500 again over a few months. A scan showed the tumours growing, but slowly. The oncologist said he thought waiting would be better but that I could start chemo if I preferred. I asked for an extra CA125 test between doctor appointments to keep an eye on it. Eventually a further scan showed the tumours were growing and the CA125 rising. It was 1230 when I started chemo last week. It's been the right choice for me, especially as the CA125 stayed steady for 3/4 months over the summer. But I have a tumour next to my sternum so it's visible when it starts increasing in size. It must be harder to be reassured that it's ok to wait when everything is hidden away.
I just wish I knew what kept it at bay for longer then expected.
Just another note on my post and the watch wait. I am high grade serous fast growing, the tumours in my liver grew fast when in the trial the oncologist said, that's why I don't understand why they didn't take me out of it at least three months earlier after the scan, and the watch and wait arrangement.
Just had 6 sessions of carbo / Caylex, started a 12, 300, now back to 11,032 so that did not do much and had risen by 3829 in 4 weeks yes 3829 in four weeks. Help !!!
Again it was obvious looking at my ca results that it had stopped working halfway though but still had to go on.
its no wonder that I look back and think I went too far and am now being more pro active. Waiting for a reply on wether I should take a beta blocker when on chemo, I should have asked at my last meeting. In America lots are on it, it can extend survival
I don't have any blood pressure problems.
So watch and wait is all about, the type, how fast it's growing, where it is etc, that's just me, no expert, just on a learning curve.
Thank you everyone for your replies , it certainly needs a lot of thought.
Professor Hani Gabra, who I believe to be an expert in this field, told me yesterday that unless I had symptons he would leave chemo until I had reached the six month mark from my last chemo. He explained that giving chemo too soon can cause platinum resistance and also the cancer is likely to come back quicker next time.
He said there was proven research that there was no benefit in throwing chemo at the cancer the minute it appears.
Altho this makes sense in a way, it's hard to live with the knowledge that this is going on inside you and the dear of what it could be doing/where it could be going.
If I want to be treated by prof Gabra then I have to watch and wait, if not it's back to my original Onc and take the chance that what he says won't happen.
Good luck, I see what he means, it was over six months before my ca started to rise and two years almost to the day since my last chemo but it still did not work and I ended up carbo resistant.
I've read your update. I must admit I'm confused about certain points, possibly because I'm not a medic of any type!
Why does your onc. need to send a "preliminary" to The Christie, why didn't she just make the referral? You are entitled to a 2nd opinion wherever and whatever.
I asked my GP to make a referral to The Christie which she did immediately and I was seen within a matter of weeks. Regarding hormone therapy - I don't think I've been put on Letrozole for kicks!! If you look at cancerresearch.uk.org site, at hormone treatments it states "a small study has shown Letrozole can stop the growth of OvC for some time where there are oestrogen receptors". Mine has been tested and is strongly oestrogen receptive/progesterone negative. The site talks about other hormone treatments amongst other various treatments. Further, I don't understand why you have been told that its not policy because "women don't comply" - what does this mean? You're not "women" you are an individual!! Also Tina I know you say your last chemo was only 4 months ago, why have you been told that they won't treat you further until you have ascites. Have you run out of chemo treatments or are you resistent? If you haven't had a scan for nigh on 2 years how do they know what's going on in your tummy! Looking at the criteria for the MEK trial (which I haven't done) you say you need "measureable disease" - you sure have this - the CA125 is not relevant, as you say it was always normal even at diagnosis! Finally, Tina I also don't understand why you are having "planned non-intervention"!
It would be interesting to read what other members on the site have to say!!
Hi Lisa, I'm sorry I'm only resdpondfing now. My Cancer came back 8 months following completion of chemo. I was devastated. My oncologist advised me it was small and I could go on watch and wait, that was end of August 2014. I have been on it ever since. The tumours seem to be growing slowly. It was on my mind a lot at the start but I took the decision to get on with my life.
I get a CT scan ever 3 months, it never worries me coming up to the scan but I will admit I get a bit anxious prior to my review. So far so good though. I've been to Spain, Italy, London and am off to Krakow in December. My next scan is on 16 Dec.
You need to decide whats right for you but I would be inclined to take the advice of my clinician.
Hello Ann. I know it's a month since you posted this message but I wondered how you were doing. My Mum had 6 of 6 Caelyx on 21 July 2015. She did the watch and wait for three months then had a scan. Her CA125 had gone down from around 250 to around 159 and her tumours had actually shrunk a bit and hadn't attached themselves to any organs. (I think that's what she said!). So in Oct her onc said to leave it another three months. It's a very tense time and Mum is very anxious. I should think she'll be called back to see her onc some time in Jan. It's very interesting to read these posts and I still can't get my head round the platinum resistant thing. But it does sound as though it's not good to have more treatment too soon. My Mum had a recurrence back in Jan 2015. The news three months before that, at the first three months scan (Oct) after final carbo/taxol/ debulking, etc, was that the surgeon was very pleased, thought she'd got all the cancer out, CA125 was 'back to normal'. Mum thrilled then in Jan devastated with recurrence. She started the Caelyx soon after that and I think she would definitely go for chemo again. But I feel as though I should research it a bit more having read some of these posts. Hope you are doing OK. Jane x
I'm fine thank you. I enjoyed my trip to Krakow and had scan on my return. I attended on 29th for results. I have 5 tumours. Three of them have remained pretty much the same, not much change. One has got bigger by about 3-4mm. The other one has got smaller, not much but still smaller. I have opted to remain on watch and wait for another 3 months. Of course should I develop symptoms, I am to contact the oncology team straight away and then I will commence chemo.
There are a number of different chemo options available and perhaps you could accompany your mum to her next appointment and then take the opportunity to ask the oncologist about the various options available. I know it greatly helps me to have someone with me. Its usually my husband but on one occasion it was my eldest daughter and i must say i was very glad she was there that day.
Whilst we all live with this disease and have been through treatment we are not medical specialists. One thing I did learn at the start of my journey was that this disease is complex. There are so many differences in each of us therefore what works for one does not necessarily work for another. Just like simple pain relief can work for one persons headache but not anothers!
The oncologist is the specialist at the end of the day. I will always be guided by my oncologist, perhaps its because I worked in the NHS and know just how much these specialists actually care. Theirs is a difficult job to do but never forget they chose this specialty so in my mind they are passionate about their work (well my team are anyway).
It does take some time to get over the anxiety, if we really ever get over it! I have found the longer I have been on watch and wait the easier it has become, that and an element of acceptance that all this will be my life from now on.
Give your mums nurse specialist a call and explain to her that your mum is anxious. Hopefully she'll be able to bring her appointment forward. Is your mum being scanned regularly? I didn't get any scans once I was all clear but as soon as CA125 went up I was scanned and have been scanned every 3months since. I'm sure you are worried about your mum, I know my daughters worry about me, its only natural. Ask her if you can go with her to next appointment. It will help put yourind at ease too if you can ask questions.
Hello Ann. I'm pleased you enjoyed your trip to Krakow. Mum went to Snowdonia for a week with the gardening club and had a fab time and lots of sunshine. She also had two separate coach trips to seaside resorts and had sunshine on both occasions. She hasn't really had a proper holiday since her second husband died in 2004. She was due to go to Paris with a friend with whom she sings in the choir, back in 2012 but her friend's husband was diagnosed with Oesophagus cancer so they had to cancel. It was so sad and so they never went. The friend's husband made a complete recovery which was amazing as he was so ill. So that was good! Then of course Mum was diagnosed with OC at end 2013 so it's been a bit of a roller coaster ride.
You sound as though you're at a similar stage to Mum. She was on watch and wait and had a CT scan in Oct. Tumours had shrunk slightly and CA125 down from 250 to 159 (or thereabouts). So on watch and wait again for another three months. Now she has had an appointment through for 26 Jan. I'm not sure if I can go with her because I live over 200 miles away and I have two children and my husband is also going into hospital that day for a check up on some pre-cancerous skin damage to his forehead caused by sun damage! It would be good if my sister could go but she's just started a new job in a different school. But Mum's friend should be OK to take her and she's been through breast cancer twice so understands. (The friend she should have gone to Paris with!). I get really tense and nervous when I'm with Mum at onc appts. I don't feel as though I help much!!
I know what you mean about the disease being so different for everyone. Everyone is unique and treatment is personal to them - their own chemo cocktail!!
Mum is due to have a blood test before her appt on 26th so I guess they'll only do a scan if the CA125 has risen. She feels well though so I can only think that's a good thing. I just forget she has cancer sometimes because she does look really well. I go down most months to see her and I worry that I might see a drastic change in her but she always looks great!
There is a nurse at the onc dept at Mum's hospital and I'm sure at one point when I was there, she told me to ring or email any time. Well, I did email her a couple of times and I asked her to keep it between the two of use and not mention to Mum as she hates me interfering. Well on both occasions the nurse not only didn't reply to my emails but told Mum about them and Mum sent sharp emails to me saying not to get in touch with the nurse. So, I'm confused about that and wondering if I got the wrong nurse!! I feel there should be someone for relatives to talk to as I sometimes find myself going out of my mind with worry.
There have been some really positive messages on this site and they give me such hope.
Well take care Ann and keep me up to date with how things are going for you.
Hi. I'm new to this forum and currently on 'watchful waiting' too after optimal debulking in October 2015, age 46 (low grade serous OC in ovaries and borderline in various other places). Recent CT scan was clear. CA125 is still high (hovering around 140), but a ways down from the original pre-op 4500.
Was originally told chemo would be needed but the current advice is to wait and do blood tests every month as well as CT scans every 3 months. If the tumor marker increases beyond 200 or the scans show anything suspicious, we may have to take action e.g. chemo or surgery. Low grade serous OC is apparently somewhat resistant to standard treatment so have to weigh carefully when and what to do.
I'm glad on one hand because it means I can work and live a fairly normal life for now but terrified of missing a trick i.e. tumor marker indicating some residual or recurring disease and excessive waiting possibly reducing the chance to cure/eliminate it in time before it does serious damage to the remaining organs (what will it latch onto next now that most of the usual suspects have been removed?).
But I think there are no guarantees in this business and for better or worse I trust my consultant, so will wait and measure, for now, and be happy to just keep an eye on that little bugger of an illness as long as it seems to behave itself.
Hope you will find a bit of a 'happy place' but if you can't shake that nagging feeling that your medical team is not doing everything they can to keep you in reasonably good health, you could always consider switching hospital or push for treatment anyway. I went with my consultant's advice but believe he'd allow for chemo if I insisted on having it.
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Hi my name is Sandy and I am new here........
Complete Hysterectomy and debulking
Confused and frustrated
The end of chemo
The merciless wait...
