Feeling Confused... Again!!!!

Feeling Confused... Again!!!!

Hi everyone.

I'm new to here!!.. This is my story so far...

i took myself off to A&E in September 2015 as i couldn't breathe very well. Turned out I had fluid in my lung, & after ruling a few things out they pretty much said it was pointing towards cancer.

After a couple of weeks in hospital having scans & a drain in my lung I was diagnosed with peritoneal cancer, stage 4C.

It's very similar to ovarian cancer, & is treated the same. I was referred to Christies were I was told I would start chemotherapy in October & that there would be no surgery & at the best they were hoping to manage the cancer for 3 years at the most. I was in shock, & as I'm sure you all know only too well,devastated.

Anyhow I started the chemo, & responded really well & after 4 lots had a scan & was told they were going to operate after all. I had a full hysterectomy in February & had another two lots of chemo which ended in April this year.

After all this I was told that there were no visible signs of any of the disease left!! Again I was in shock.

At my first check up in July the CA 125 was done to 15!!!.. I was so happy, I never thought I would hear such good news ( at diagnosis the marker had been over 1500)

Anyhow at my checkup in October the CA125 had gone to 116

They arranged a scan. The result is clear, even though the CA125 is now 219!!

I am in absolute limbo!!.. Has anyone else had a similar experience?

The oncologist said after the result of a clear scan she expected that it would of gone down

She mentioned it can go up for other reasons, has told me not to worry (???) & that as long as I feel well with no symptoms ( I never had symptoms originally) then they are going to repeat the bloods in 6 weeks.

21 Replies

  • What an amazing result you had from your treatment. I am 3C and was treated by chemo and Avastin (they said surgery would bring more risk than benefit) - my scans are clear but I had a phase of CA125 going up. There are many reasons for this, I believe - I was told it could be there is still microscopic disease there which doesn't show on a scan. I found all the ups and downs of monitoring a bit stressful and opted not to know the CA125 from last August onwards (they don't treat based on it anyway) - that has made a difference. I'm just concentrating on living my life, I let them monitor but I don't obsess about it - all easier said than done, though. I've been told they may have to treat again with chemo in the future. Wishing you all the best with it - you look fabulous on the treatment!

  • Thank you for your reply, & that's exactly what I wished I had done. I have got quite obsessed with knowing the result of the CA125!!!

    I to have decided rather than be on this roller coaster from hell, as in one minute believing I'm "cured" then the next that it's back!!.. I am going to find a happy medium somewhere in the middle!!

    Good luck to you, & thank you again for your kind words. X

  • No problem - as my CNS said 'following the CA125 when it's going down is great - less so the other way'! You've got to find what works for you. I honestly think it takes a long time to accept that this is a 'chronic disease' and the brain won't fight unless it thinks it can win. Got to find tricks to be upbeat!

  • Hello, I am Stage IIIC and after 4 chemo I had the operation which resulted in no visible signs of disease. After the sixth chemo I was NED in July this year with a CA-125 of 35. However, by October this had risen to 1209 (it was originally 1250) and a scan showed recurrence in the para-aortic nodes. I am now on a trial.

    It is my understanding that a close eye will be kept on you all the time the CA-125 is rising, but treatment will probably be delayed until you have symptoms or disease can be seen on a scan.

    Good luck! It seems such a roller-coaster of highs and lows and there are many on this site who have been through this numerous times. All the best. Helen

  • Thank you Helen.

    I have clicked on to follow you if that's ok

    You certainly seem to be having a rough time to, & your dog!!!

    I really hope that you will both be ok. I have a cockapoo & would be devastated if anything happened to her.

    Good luck with the trials.


  • Hi I can't add anything else however wanted to say that the CLA125 can be raised for many other reasons and up there are false positives and false negatives, with some having a high reading and not having cancer or a recurrence and some having a negative reading but having cancer! It can't be taken as a stand alone indicator which is also not helpful as you've now found ! My reading was in the normal range of below 35 when I was diagnosed and had settled at 13 after chemo, rising to 14 in September. So it's not a good indicator for me however I am monitoring the trend of the number over a few readings- due next one at the end of next week. I would think that ( as has already been said) you will be monitored closely and a clear scan is always good although it can take time for us to really believe that can't it?

    I know we sometimes hate being told we look good (what ? you've had/have cancer but you look so good...!!) however your photo is very pretty and I hope you can keep that smile while that uncertainty is put to bed!

    Take care and all the best

    Clare xx

  • I had stage 3 clear cell ovarian as well. My CA 125 has always been very low so I am a false negative. First diagnosis was in surgery to remove tumor in April 2007. Had 18 chemo treatments of carbo taxol. Recurrence in April 2015. Surgery, radiation and 18 chemos carbo taxol again. Went on Avastin and couldn't tolerate as it increased my blood pressure. Clear cell is only present in 5% of US ovarian cases but 30 % in Japan.

  • Thanks, it's probably time I give an update on my dog. He's half-way through his treatment now (it won't be a cure) but you cannot tell there is anything at all wrong with him. He's still catching rabbits but I think he finds them already dead and brings them to us to show us what a clever boy he his. I was really lucky as I had to have a CT-guided biopsy for the trial last Wednesday and they went in through my back! Just shows I don't really know where the para-aortic nodes are! I was worried I'd have backache because the next day I needed to drive him for two hours there and two hours back for his treatment. But no backache at all so that was great!

    Our pets are very definitely members of our family and we feel such anguish when they are ill.

    All the best! Helen

  • Hi Helen hope you don't mind my piggybacking and butting in here but I also have activity (not fully known why) in para cardial nodes (I think they are near the heart) so am interested in what trial you are on. Would you mind saying what it is called? You can message me if you prefer.

    Am really glad your dog is doing ok.

    All the best


    btw am waiting in results of scan very nervous hence keeping under radar not posting till I know what is next for me

  • Hello Netti, these are the details of the trial


    I wrote about it yesterday under the heading, Started Trial for Avelumab and I've given more information there. I only started on Tuesday. Good luck with the results of your scan. Let me know if you need to know anything else.

    All the best! Helen

  • Thanks Helen. I looked at it and hope it works for you!

  • Hi. I'm stage 4 Primary Peritoneal. Your story is very similar to mine only at diagnosis there was no hope for me at my local hospital so I went to Christies. That was back in March 2014 and I'm doing really well. We must be under the same team.

    There are lots of reasons why your ca125 could go up. It's very unsettling at the start but hopefully you settle down. If you want to see them more often they are very flexible. You're in good hands.


  • Hello and hope this finds you feeling well. I am in exactly the same position as you are, having been diagnosed in June 2016, with PPC. I had 3 rounds of chemotherapy followed by a full hysterectomy, followed by 3 further rounds which ended mid Feb this year. I have been having Avastin treatment every 3 weeks since. I have now had 14 treatments of a possible 18 suggested. My CA125 was like yours down to 15 at the finish of the chemotherapy but has progressively risen and is now 191. I have had scans which show no progression of disease and have (like you) been told to wait until I have symptoms. As I understand it, there are 2 schools of thought about further treatments on a rising CA125. Studies have apparently shown that there is no difference in outcome whether they act immediately to restart chemo again or leave it 'until necessary'. The main thing they are looking for is Quality of Life and these studies suggest its better to be healthy and feeling well for as long as possible rather than endure further rounds of chemo with its possible side effects. I am seeing my oncologist next week and will have a further CT scan and will of course be asking about this. Good luck to you and I will try to post you with my results.

    keep smiling and hope this helped. Katie

  • Hi Katie.

    Yes it does sound like we have had a very similar journey, & not one anyone wants to take!!!

    Thank you for sharing that with me, & I sincerely hope you remain well.

    May I ask what Avastin is & the benefits etc, u had never heard of it until I came in this site yesterday.

    Lots of love to you. xx

  • Hi there..... Avastin is not a chemotherapy but is a blood vessel inhibitor (prevents the nasty old tumours from establishing a source of growth from blood supply). It is quite a restricted drug and not a miracle cure but studies have shown it can extend healthy life for several months. Ask your oncology team about this as you should be eligible for it.

    Good luck and lots of love


  • Hi, what a journey and I'm glad you got the op. your story is very similar to mine. I was diagnosed with stage 4 PPC in July 2014. I was NED after all my ops and treatments, but about 18 months later my Ca125 stated to rise over a few tests 61, 80, 127, the scans were clear & was told not to worry enjoy feeling well etc a few months after I did get some unusual sensation in my is and a new scan has detected a reoccurrence of which I am now being treated for.

    My oncologist always said a reoccurrence could happen but whilst the scans are clear and I feel well no treatment needed. I hope your numbers are just a blip and your scans remain clear, however as you are being closely monitored any detection of something occurring can be treated quickly.

    its difficult managing emotions and worry what with everything that's been thrown at us, and I hope you can enjoy your well time with limited stress.

    Big hugs xxx

  • Thank you!!!

    Our story's are very similar aren't they. It's strange how you can go from feeling your the only person this is happening to, to finding out your definitely not!!!..( I was told it was a rare cancer)

    Do you mind me asking how old you are?x

    I wish you well with the treatment. It just seems so cruel after all you have already been through, stay strong!!👊Xx

  • Hi, I was 42 at first diagnosis and will turn 45 in December. I was told it was rare to see PPC in someone my age, apparently it's more comman in the over 70's but I'm not so sure?

    Wishing you well, keep in touch xxxx

  • Hi Gillybean

    I read your post yesterday in between appointments so I'm only now getting round to replying. I'm one of those PPC women diagnosed in 2011 at stage 3c with 10litres of fluid ( ascites) in my abdomen and a CA125 of 8000. I was given my diagnosis on my 66th birthday. Surgery was not an option so I was put on 6 months of CarboplAtin and Taxol and I responded very well. At the end i was told I was NED ( no evidence of disease ) and my CA125 was down to normal . I had check ups every 3 months and remained with NED until this year when it recurred in my lymph nodes. I'm now back on chemo which I hope will get rid of it again. Of course I have my moments but I am happy to have survived this far. I really wanted to reassure you that if an old dear like me can get through this then a lovely young woman like yourself can fight it too. I wish you all the best. Keep in touch.


  • I have similar story . Diagnosed 2014 with ppc. stage 3 c.My ca125 was 1200.I was 58.Told I was inoperable.Stated chemo 4 rounds.Responded well.They did operate.3 more rounds of chemo.Ca125 15 at the end of treatment. I have reoccurred as I had bloated stomach and ask for a scan to check for cancer.Yes it was back and my ca125 did rise to over 200.I am stable again almost 9 months in.I did have a bloated stomach two months ago and ask for a ca125 test to see if it had risen.It did not,so I realized my bloated stomach was constipation,which I've had off and on as long as I can remember.I have my scan next month.Will be a little worried as I get closer to the scan.I am not feeling any symtoms as of now.I'm hoping for a longer break.I Live my life in between treatments. I stay active and as positive as I can.If scan is clear,will be going on vacation....Take care...

  • Hi Gillybean,

    Good to meet you. I was diagnosed in November of last year after a pleural effusion. Stage 4 ppc although histology painted a different picture.. scary isnt it..

    I had 4 chemo then an op too and my number was coming down nicely until the op when it plateaued. I got really hung up over it. My oncologist said that it was likely inflammation from the op and that my scans were clear. CA125 is an inflammation marker which is only an indicator. We've become reliant on it because there is nothing else out there.

    I'm next due to meet with Dr Green again in early March with a test done beforehand. He examined me a few weeks ago and was pleased that my abdomen was 'very soft' so no fluid there and my breathing was good.

    I see The Christie has been awarded the highest of accolades. I'm under the umbrella of Clatterbridge at The Women's in Liverpool.

    I try not to overthink things now. There is so much information out there and sometimes it's overwhelming. I take supplements to help build up my immune system should I need further treatment. I don't drink alcohol since diagnosed either. I figured that clear mets to the liver were a blessing and intend to do my best to keep it so.

    Anyway, you're in very good company here with lots of info to hand and plenty of support.

    All the best to you

    Debs xx

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