Reoccurrance stage 3c ovarian please help - My Ovacome

My Ovacome

15,788 members18,349 posts

Reoccurrance stage 3c ovarian please help

kaza1 profile image

Hello my cancer has come back after 18 months it is too small to show on a scan but my ca125 has slowly been increasing its now 58. The consultant said I can start chemo now if I'm worried or wait a while what do you think ladies. I feel ok health wise

28 Replies

Hi I was in same situation 12 months ago, but I have an excellent oncologist who said I could start chemo then or we could wait and watch, my ca125 was at this time 115 and you could only just see the reoccurrences! She advised me to wait with 3 monthly checks as she said the longer you can leave between chemo the better! I was/am very hit and healthy, still am. So after 12 months of going back every 3 months for scans, bloods etc and thinking chemo this time, we are now getting to the point of actually looking as if it really will be chemo this time! I had an extra 12 months chemo free and a lovely holiday to boot! They also said if at any time I between appointments I felt worse to phone up and come in! Hope this helps... After all, who of us actually want chemo! ps my last ca125 count was 162, only going up in the last 3 months, just waiting for results of last weeks blood test and scan..

hi Kaz. I think its a personal choice. I have stage 3 oc and have had two recurrences with a low CA125 but areas of cancer could be seen on the scan. Both times I was told I could wait and see or take treatment straight away. Both times I took treatment straight away as its my way of coping, feeling more in control of whats happen. No im not a 'control freak' more a 'take the bull by the horns' sort of person lol. Do what you feel is right for you. would you be ok waiting or would this effect your emotional well being? (as if it wasnt affected enough!). Just to add though, my second remission was 18 months, Im now in my third which has now been 24 months, 8 years in total in October since my operation and original diagnosis . I wish you well whatever decision you make . Kathy xx

Hi Kaz, it really is your decision. I'm 3c PPC, and had my first recurrence after just four months, back in May. I feel okay, with some pain, but easily controlled, and I wasn't keen to go down the chemo route, again. My oncologist suggested hormonal treatment, and that's what I'm trying, now. Blood test next week, to see if my CA125 is falling. It went up to 270, from 5, and a scan showed some thickening, so the cancer is back, but still small.

For me, as long as my quality of life is good, I'd rather stay off the chemo, but of course, I might change my mind, if and when it gets worse.

Good luck x

Hi KazA1

I'm in the same camp as Bougheycat. I've had two relapses and each time I've waited until the oncologist says it's time to restart. I didn't have the length of remission Kathy has enjoyed between treatments so it has been a way to prolong my chemo-free time. My first relapse was after a year but I had another year without chemotherapy before starting my second line, and after that I had 8 months progression free and an additional 10 months before restarting chemotherapy. I am now 4 1/2 year since diagnosis and generally I'm lucky to have been well and haven't been too badly affected by the treatment.

I agree with the others. It's whatever you and your oncologist agree is best for you. That way you will feel confident with the choice you make.

I hope all goes well. Let us know how you get on. xx love Annie

Hi KazA1,

My situation was much the same 18 months since initial chemo and Ca125 going up slowly. Relapsed early May. My oncologist made the decision that chemo needed to start. I did ask about watch and wait and he advised against it. In truth I was glad as I had ascites 1st time round and was aware that fluid was building up.

So looking at what have said it really does come down to what you and your oncologist think is best, either way good luck in what ever decision you make

Krisx

I'm waiting for the 'right' time to start chemo too. Last appointment I saw a different doctor, a registrar, who said it was up to me. He said I could start anytime now if I was worried, but that the outcome was unlikely to be any different if I waited. I have a few nodes and tumours, about 2cm, my CA 125 is just over 300 but is only going up slowly. I'm having a Ct scan on the 24th and have just booked a weeks holiday for the second week on September and expect to start after that. For my second chemo I was keen to get started but this time I want to have as long a gap as I can as I'm feeling so well. It really is up to you. If you are worrying and losing sleep and being on chemo soon would help with that then go for it. Also if you are having symptoms like ascites it might be better to start but otherwise wait and have as good a time as you can while getting yourself fit and ready. I'm stocking up on charity shop books and second hand box sets and seeing as many friends and family as I can before I slow down for 4-5 months.

Hi - have been reading everyone's replies to your question with interest! I'm in exactly the same boat - my last ca125 was 52. I had a ct scan which has shown a small recurrence back of liver - have also had a PET scan which hasn't revealed any hot spots thank goodness! I'm seeing my oncologist 18th August but where I'm being treated ( in Birmingham ) they don't seem to advocate the watch and wait option. I think the plan is to have 3 cycles of chemo and then be treated with cyber knife. I'm also feeling well other than annoying backache! Tbh I don't think my mental health could cope with watch and wait so getting on with it is the best option for me. I think what everyone says is absolutely right - it's a personal decision and whichever you feel is right. Just think it's so interesting how options vary from place to place!

Lots of love and luck with whatever you choose xo xo

Hello. So sorry to here that you've had a recurrence. Like everyone else who has replied this also happened to me after 6 months of first line chemo for 3c. I hadn't seen it coming as I felt so well and had no symptoms but my immediate reaction was born out of fear and distress - when do we start blasting it with chemo? Her advice was not to rush things, that there was no long term benefit to immediate intervention and to wait until I was actually symptomatic. I know that every case is different but I am so glad that I heeded her advice as I had a wonderful 18 months feeling as fit as a fiddle (maybe not so much towards months 17/18), my husband and I both took early retirement and we decided just to enjoy the time and did a fair amount of travelling, seeing far away friends and family, and just doing things we'd always planned to do. This time also gave me 'head space' to get a lot of things sorted out both practically and emotionally. I knew when the time was right for me to start treatment again and I felt strangely in control having made the decision myself and having been there once before. I would discuss again with your oncologist if in your case there would be real benefits from getting on with it now or if the outcome would be the same if you waited. Good luck whatever you decide.

Beth

Hi 12 months ago this week, I had blood test results which prompted a CT scan. This revealedy cancer, stage 3b high grade serous was back some 8 months free completion of chemo. I was devastated. My onc explained that as they were still small she would advise wait and watch, she felt there was no point in making me feel I'll with chemo when I currently felt so well. My next scan is due Sept. I always get anxious waiting for the results but one year on and I have now been 1 year and 8 months since 1st line chemo finished. I'm still feeling fine and hope to continue this way for another while. I have been abroad twice this year and am enjoying life. All the best, whatever you decide to do. Ann xo

HI. I had 2 periods of about 18 months between each recurrence but a good bit less this time. If you trust your Onc's advice - listen to him. It has always been recommended that I go back on treatment as soon as the symptoms appear.....unfortunately, usually within a few weeks. Such is life.

Take it easy and be 'happy' with whatever decision you make.

Love & kind regards,

Daisies

Thanks all for your replys it really has helped me. My oncologist basically said if I. Am worrying then start the chemo now if I can be more relaxed about it wait awhile but he will see me every six weeks

My instinct is to wait a while and enjoy myself. My family and friends think I'm mad to wait and should get on with treatment

Every time I say I'm going to wait awhile I feel embarrassed as people think I'm burying my head in the sand but I'm not so it's nice to chat to people who understand

Thank you

Hello. It's really interesting to read all these replies. I've been chatting on Ovacome for a while. My Mum was diagnosed Dec 13. 3c Ov Cancer. Debulking, carbo/taxol during 2014. Good result in Oct 14. Jan 15 - recurrence. :-( I just wanted to compare stories of the recurrences. My Mum was told she had a small amount of cancer near her pancreas (rang alarm bells) and lymph nodes/glands? She decided to start chemo right away and has had 6 Caelyx. Her CA125 has hovered around the 200 mark and gone down slightly each time. I thought this was quite positive but at Mum's last Onc appt the nurse said she would have expected it to have gone down a bit more. This made me feel a bit panicky! Mum had a CT scan yesterday and will have to wait around 10 days for the results. I know she is in a right state. She lives over 200 miles away in Birmingham and I'm going down for a week soon. She's on wait and see at the moment and her next appt with the Onc is booked for 20 Oct depending on results of scan. I was wondering how similar your stories were and where your cancer reappeared. Mum is feeling quite well overall.

Sorry I know this is meant to be a reply. I think I should have typed a new post!!

Thanks. Jane

Flower19 profile image
Flower19 in reply to JanePW50

Jane hope things went well with your mums scan , I am in the same position with my dear mum I have looked but could not find update best wishes xx

JanePW50 profile image
JanePW50 in reply to Flower19

Hello Flower. Well 17 August would have been 10 days and still no news. Mum seems to think that the nurse at the oncology unit said that if Mum doesn't hear anything then the next appt will be 20 Oct. Since then she's had a DVT in her leg - that's another story!!! I've been down with her all week and her knee has been hurting so I suggested she goes to the Dr. I went with her and he examined her knee and couldn't find anything seriously wrong. Mum mentioned she was waiting for CT scan results and this new, young doctor who Mum hadn't met before brought up a screen of notes on the pc relating to the CT scan but said he couldn't interpret them and that Mum would have to get in touch with the oncology department. I wish we hadn't gone as Mum has been panicking and thinking he saw something bad. So, it's difficult to know what to do. Is no news good news? Do I ring oncology bearing in mind Mum hates me interfering!! Was Mum supposed to ring for the results? So, bit of a stressful time.

Thanks so much for coming back to me. Where are you at with your Mum at the moment?

Best wishes. Jane x

Flower19 profile image
Flower19 in reply to JanePW50

It's very difficult waiting for news from tests , the stress is unbearable at times my mind goes into overdrive , my mum is having the deblunking surgery on Thursday , they told us there is a patch on the diaphragm which we did not know before an with it being above the liver they need the liver specialist to check out the liver . Instant panic on hearing this , just feel if liver is affected it takes it to another level , I only live around the corner from my mum so I see her everyday we are very close , when I read your post I did feel for you living away it must be hard I do hope all goes well with your results I will look out for your post take care of yourself an everything crossed for mum x

JanePW50 profile image
JanePW50 in reply to Flower19

Hi Flower. Phew, your Mum is just having the debulking surgery. It seems such a long time ago since Mum had hers - 24 April 2014. Yes, the mind does go into overdrive. Fingers crossed for your Mum and i hope the patch is nothing serious. I have to leave Mum tomorrow and I'm always sad to say bye. You're so lucky to live so close to your Mum. It is hard being so far away. Keep me updated and best wishes to you and your Mum. Jane x

I would ring the oncologist secretary for an earlier apt to get the scan results it's too long too wait I was worried sick waiting and i pestered them get the scan results and then she can relax. It doesn't take ten days for results of scan oncologist can access them within a few hours it's the not knowing that's the worse

When I got scan results mine was too small to show on scan but showed in my blood x

Your mum can see oncologist every four to six weeks if she wishes if she's worried but ask her to get in next week for her results it's too long to wait otherwise

Much love x

JanePW50 profile image
JanePW50 in reply to kaza1

Thanks very much Kaza. Mum has asked her Doctor to intervene and he is very good at contacting the onc. I don't like to interfere too much. Mum gets annoyed. Bless her!! But it is interesting to hear that Mum shouldn't have to wait 10 days. I will keep pestering her!! Every day must feel like a week when waiting for scan results. :-(

Jane x

thesilent1 profile image
thesilent1 in reply to JanePW50

I am treated at a large cancer centre in Belfast. I have to wait about 10 days too for results. I do get anxious but I also understand how busy the cancer centres are. You only have to look around you on CLI ic days to see the number of people waiting to see the oncologist. I suppose I also understand more re the workings of the hospital as I had worked as NHS med sec prior toy surgery. Ann

I read a scientific report, which I am unable to find unfortunately, that seemed to find that treating an increase in CA125 was not found to deliver better results than waiting for symptoms to occur. I have opted to have a summer free of treatment, and my oncologists have okayed this approach. Summer is almost over already!

My oncologist has told me that there is no advantage in treating early on in a recurrence.

He is of the opinion that you should enjoy symptom free time, despite an increasing CA125, and wait until your symptoms become troublesome.

My CA125 is now over 400 and even though I have some symptoms, he is happy for me to wait.

Hope he's right!

thesilent1 profile image
thesilent1 in reply to HopeP

My oncologist told me the same. She also told me not to ask for my CA125 results as the only way they are going is up during a recurrence. I have taken her advice on that one. Ann

I have had relapse after 6 months of finishing my first line chemo. I had only been back at work 3months. I found my second line very difficult and think this mat have been due to it being close to my first line. However I have had 2 years now with little progression. You are certainly not burying your head in the sand. Only you can decide, do you have low or high grade. If you decide to wait use the time wisely, do things you want to do and get as healthy as you can so your body is ready. I think knowing you have had great experiences will help you through the chemo.

Hope it goes well

Sharon

Hi Kaza. My situation was similar to yours - 3C with 18 months remission, when I found a swollen lymph node in my groin. I knew it was back, as did my onc but he needed to prove it. My CA125 had doubled but still wasn't high (19). Two biopsies into the node didn't show cancer, nor did 2 ultrasounds (with specialists in different areas of the abdomen), nor did the CT scan. Finally we got to the PET scan which showed it all up - and also showed spread ! It had now spread to my liver and, a letter & further tests from Breastsceen, showed it was also now in a breast. My onc wanted to "watch & wait". He said: you're feeling well, so why become unwell (chemo). Well, who can I trust if not him? but I was concerned that it was spreading. He then went on leave & I saw his partner in his stead, who was starting trials in avastin & asked me if I was interested, I was, so I was back on the chemo (as well as avastin). My point is that the time taken with all the tests to prove it was actually back, gave the cancer time to spread. I'm in remission again now (after 6 months chemo) and feeling extremely well again, but I'm thinking that when the bugger returns again, as I'm told it surely will, it's got a few more places to grow from. So you have to weigh this up with all things considered. I still don't know if I did the best thing. I may have lengthened my life - as the spread was stopped when I resumed chemo, OR, I may have shortened it - as my onc only has so many weapons to fight my OC. Best wishes with whatever you decide. Pauline

Thanks Pauline I thought if I leave it will it spread you never know what to do I suppose you put all your trust in the oncologist and hope he's right

Good luck x

On 7 Oct 2014 Mum was told her cancer cell count was "back to normal". Then when she found out about the recurrence on 6 Jan 2015 I think her CA125 was up to over 300. I just found it so difficult to understand how it could have changed so quickly. Mum was eager to get going with chemo ASAP. It's difficult to know what to do for the best. I've heard before someone say that it's best to wait until the cancer has something to work on. I thought that in older people (Mum is 79 in Oct) the cancer slowed down but I'm not so sure. Jane x

Have you had an ultrasound? That is so much better than any CA125. My CA125 always comes back negative. After having gone to an Ovarian Cancer Specialist, I even advised him. Ask for a PET scan as well. That should give them a better look. Keep up your personality and friends that make you laugh. You need positive support. You have mine g

Start chemo now. Treat it aggressively.

You may also like...