How will I know when PPC returns?

Don't often post but read daily and really appreciate the support provided by all who do post. Diagnosed in November 2013, two operations followed by chemo finishing in July 2014. Going well but always wondering....how will I know if it is back? At my first check up the registrar said that if I have symptoms that are unusual and persistant I should ring them. The consultant at my next check up said the same but also the symptoms would get worse. He also said that I would know if it comes back. But......still I wonder, particularly if I feel just yucky or have discomfort in my abdomen or sides. So, if it has come back for any of you, how did you know that you needed to do something.

Virtual hugs to you all dealing with this horrible disease.

Val

PS Anyone living near Leicester out there who would like to meet up.

12 Replies

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  • Hi Val

    I was diagnosed with PPC I July 2013, had 3 cycles of chemotherapy, full surgery and then 3 more cycles of chemo. Like you, I was then wondering how I would know if it returned.

    As it happened, I had a recurrence in January this year. I didn't have any specific symptoms, just a bit of epigastric "niggle" which I put down to excess acid due to extra stress at work, although the thought of return was always in my mind. As the worry was affecting my sleep, I spoke to the specialist nurse who arranged a ca125 check, and unfortunately it was back to diagnosis level. I'm now coming to the end of my second line treatment and hoping that things will go in the right direction.

    With regard to symptoms, the sp nurse recommends that any new signs that last for more than a week or two should be mentioned so that investigations can be done if necessary, but she also said that its important to remember that everyone has abdo niggles from time to time so you shouldn't always think the worst.

    Your Consultant said you would know if you had recurrence. I can't explain it, but somehow you do. But in the meantime, focus on feeling well and enjoying life, and I wish you all the best for the future.

    Take care

    Ali xx

  • Thank you for your reply Ali. I would describe any symptoms as niggles and often attribute them to IBS after all the surgery. Sometimes I feel the worst in the early hours of the morning when they wake me up, otherwise I sleep well. I didn't have a specialist oncology nurse but may give Macmillan a ring. I think I know what they will say and maybe I am fearful of what I might find out. Ostrich, head and sand come to mind!!

  • Its understandable that you are fearful of what could be a possibility, and whilst we can all be guilty at times of trying to ignore things or explain them away, if you are consistantly being woken by discomfort, I would suggest getting it checked out. If there is a problem, it can then be addressed.

    In the absence of a specialist nurse, you can always go straight to the top and check out worries with the consultant or contact McMillan for advice - they are excellent.

    I do hope you can get some positive reassurance from whichever source you choose. Fingers crossed that all will be well for you. Xx

  • Hi Valerie I think I have to agree, you know yourself when something isnt quite right. A pain that wont go away with paracetamol would be one way. Pain as in back pain, constipation was a big one for me as well. Weight loss and tiredness, Sometimes while on last treatment and when finished I did get tummy ache but it was due to Gemzar and its after effects. It lasted about a year and has now subsided. I am on Avastin for maintenance and that seems to be working okay for me at the moment. Hope that helps a bit

  • Thank you for your reply. It is just niggles in the abdomen that bother me a bit but wouldn't describe them as pain. I dont seem to be as energetic as I was but am playing 18 holes of golf once or twice a week and doing what I always did in terms of jobs and activity. My post treatment scan last September was all clear so I wasn't offered any maintenance treatment. My next check up isn't until the end of July so I will see how things go. Hope you continue to feel things are working.

  • valeri. I know exactly how you feel. I was just writing a general post to the whole world when my computer threw me out . I was diagnosed in MAY 2011 on my birthday and had 6 doses of carboplatin and taxol. I am checked every 3 months either by my gynae or oncology team. Until my new G P did my CA125 test last week I had no idea whether my disease was back or not. When I ask my oncology nurse how I will recognise the symptoms she just tells me I will know. As it happens my latest test count is 17 which I have been waiting for 2 and a half years for as my oncologist thinks it makes patients anxious to do it regularly. It was 8000 when I was diagnosed .

    My latest check up was yesterday and my gynae was fine with me having done the blood test but my nurse was not too pleased as the oncologist does not believe in it. I am well aware that it is not ideal but it is the only one on offer. As for symptoms it was pointed out to me that since I am 70 on MON I have been told any strange symptom is more than likely age related.

    Valeri I do hope that you are not fobbed off by being told your symptoms are age related. I live in a different country and I am astounded to hear that you are being given the same pat answer to" how will I know " which is usually " oh you will know " given with a knowing look. I actually think myself they only go by fluid build up .

    I do wish you all the best and I hope you are cheered by the fact that I am still above ground 4 years later. Keep smiling and positive. Maybe we will be the lucky ones when the breakthrough happens. Meanwhile I look forward to my party on Sun and holiday the following week.

  • Valeri,I think all of us feel and think the same .The need to know question "How Will I Know", A I don't think they should let it up to us to self diagnose!

    We're vulnerable,panicky ,confused.Im sitting here unable to sleep due to pain in my upper back near my lung,is it cancer?,is it the tumour getting bigger? Is it fluid build up around my lung? The answer is I don't know and I don't know if it's a delayed reaction to chemo or Avastin.They tell you about some side affects and when you worry about some unfamiliar symptom you have ,they say "oh yes that could be a side affect of avastin or chemo".Take comfort in the fact that your not the only one.And we're all here for you.As I say to people who approach me in the street and ask in hush tones and knowing look "how are you "? My reply now is "Yerra,dying away and how's yourself? Ha ha ( you gotta smile) big hug for you xx

  • Yes I certainly did smile at your reply, I can imagine the person you were speaking to was taken aback haha. Yes we do get pains and aches but the ones to watch are the ones which dont go away after a few days of taking paracetamol. I didnt have swollen tummy on any recurrence just lower back pain and bad constipation. I think we stiffen up from the Avastin a little some people more than others because we all react differently. I know my gp will refer me back to oncologist if I am in trouble. The nurses also check in with you when you are on Avastin and keep your bloods under watch. They may say nothing but that is a good sign. My gp tells me that the tummy ache is due to the fact that surgery is not normal to the body so the body reacts. Valerie, I know that you can get tummy ache from Gemzar and that will hang around for a while after finishing treatment. If you are worried, I would get the appointment forward a little through your gp or macmillan nurse/

  • Hi, I live in north Bucks but being treated in Northampton for PPC and am happy to meet in Northamptom some time I was diagnosed with PPC in August 2012 it confused them a bit as I had preventative surgery 2007 for OVCa due to being Brca 1 but obviously I have a persistent little bugger on board. I am on 4th line of treatment. After front line I was on Avastin for a further 6 months but although it may have slowed the progression it never stabalised the disese and we decided the benifets were oughtweighed by the effects I chose to stop taking it! I too a Chemo break with watchful waiting for 6 months to get in some good living and holidays... should have gone back on Chemo about 2 mths earlier but broke my arm and had to wait for all that to heal! so I have been on 3 different chemos since April last year with varying effects. I would say that between front line and 2nd line I had no symptons and was picked up on Blood tests and scans. And the only reason I was picked up first time was because I developed gross Acities over a period of 6 months I faffed about with GP looking at food intolorances etc I think the doc thought I was just eating too much cake and had bloating. I would be very happy to meet up in Northampton that is about half way for me! but it would have to be daytime. Mondays are goodish as I have a blood test now every second Monday although the next one on the 26th because of the Bank holiday 9.00am but happy to meet a little later. I dont know how to friend or private message on this forum but maybe someone will chip in. I will warn you that I am now hairless and a bit knackered! Although still doing the stuff I love and choose, ha ha! Good luck with it all anyway. Mel x Sorry long post!

  • Hi Valeri. When I first went into remission, onc told me there was a 50% chance it would return after 2 years. A bit before the 2 yrs was up, I had diarrhoea with no explanation, which got me thinking. Soon after that I found I had a swollen lymph node in the groin. I then knew it was back & I think the onc did too - but he needed to have it proved. My ca125 was 19 (double normal for me). So, had 2 needle biopsies - both showed no cancer. Had 2 ultrasounds - nothing proved there. Had a CT scan - showed nothing again. Finally a PET scan - which lit up cancer in the lymph node & by that time it had made steady progress thru the lymph system to the liver & breast. Since then I've had 6 more chemo sessions & on the trial drug Avastin. In remission once again. That's my story - hope it helps. Oh yes, someone I know knew hers was back due to rumblings in the stomach and spending more time than usual in the toilet. Pauline

  • I used to feel the same especially after first line treatment ended and I had lots of false alarms but every three months they would check my CA125 and if it went up or I reported new symptoms then I would have a scan.

    If you are in pain and especially if it is waking you up I would speak to your CNS or your consultants secretary at least it will set your mind at rest. I have found that I have had pain in areas where they have found new disease. I also become constipated, feel fullness and nausea

  • Thank you for all your replies. It is helpful to know that you aren't alone in dealing with this uncertainty. I guess anyone with any cancer is concerned about recurrence but PPC and ovarian seem particularly difficult. I can understand the reluctance to use CA 125 but used wisely I would have thought it would be useful as a marker. It is a pity someone can't develop a check list for us to support our check ups. I feel a great responsibility to get my symptoms accurate when I meet my onc. My positive thoughts and best wishes to you all. Val x

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