Question to my PPC pals

Please can anyone help me based on your experience . I realise that everyone is different but this awful disease attacks us all mostly in the same way. I was last checked in November and told they did not want to see me again until May . My last CT scan was Feb 2014 and I am not happy that the internal exam done by a gynae I never met before last Nov will show PPC cancer cells as I never had a tumour to begin with . I am in the process of making a private appointment with the gynae on my team so would be grateful if you could tell me how often you have got scans to check for recurrence. I am really getting more and more stressed by this as I am so terrified that the pains in my left side and general muscle weakness could mean a recurrence. I would be so happy if they confirmed it was my age as they usually try to tell me ! Thanks for reading this


17 Replies

  • Hi Molly O, I didnt have the same type of OC as you. Go ahead with the appointment privately by all means but that may not necessarily mean your story has changed. I suppose you are right to go ahead for peace of mind, I think I would do the same thing if I was concerned. I think I agree with your point that a scan would be handy at this point in time even to reassure you things are still the same. So perhaps by going privately, you get more time and information to ease your mind along with no interuptions and ask for a scan.

  • Dear Suzuki

    This is my second attempt to thank you for your usual prompt reply as the the last one was snatched by some gremlins who flew away with it to cyberspace. I really haven't been feeling too great for a while and being dismissed until May was the last straw. I dont want to go into the finer details on this forum but if we ever meet up I will fill you in on my medical adventures. That begs the pun . Misadventures ! I have been so stressed and wanting to pick up the phone to make that appointment for so long. Today I did to be met by a recording machine and I am still waiting. At least I have taken that first step. Will let you know how it goes. You are so wonderful at reassuring people. You really have a gift. Love and God bless


  • Hi there

    Poor thing , so sorry that you are having this extra avoidable issues. There is no set protocol for follow ups , three monthly at the beginning going down to six monthly then annually. This is very distressing for people. I did not need chemo , but my experience was that pain persists on and off for years. It is also made much much worse by anxiety, so can turn into a vicious circle.

    You are doing the right thing getting seen privately.

    Good luck

    Love and hugs xxx

  • Thank you Charlie for your very kind reply. My main problem has been and still is lack of information from my team . My questions are usually fobbed off. I dont even know if I am high grade or low grade serous or whatever. I was just told stage 3 at the beginning and that was the extent of the information. They only added the c to the 3 last time I met them as I asked the new junior Dr. When I come on to this site all the women are clued in because their doctors have so obviously explained everything to them. This is why I am going to pay money I can ill afford to finally get some answers .

    When I put up my post I suppose I wanted to know what has been the general experience of woman with PPC who are going on 5 years with supposedly no recurrence and how often they were scanned. Maybe I am just unique. Sometimes I dream that they got it wrong and I will wake up and the nightmare will be over . Will let you know how it goes and meanwhile I am really grateful that you took the time to reply.


  • I don't get explanations either. Or I do and then realise it's gobbledegook. x

  • Yes gobbledegook is a good way to describe what we are told. I dont ask a lot so I threw the onc at my last review re ibuprofen and metaformin, I read my diary today and realised I never asked had he a plan B for me if and when it comes back. You do feel intimidated because you are concious of the consultants workload and can see he is tired, I hope you get a reply tommorow, you see sometimes they share their rooms with other consultants so have the same secretary who is busy answering the other consultants phones. Any how I wish you the best and you are doing the right thing, its your life and your body.

  • Thanks Suzuki. I get so stressed sometimes and other times I just stick my head in the sand and want it all to go away by some kind of magic . Your replies and those of the other lovely ladies lift me up. I will let you know how it goes.


  • I was not told that what was removed was not cyst until 9 weeks after operation. I bought a sandwich at M and S on the way home....there was more information about the sarnie than I had had from my Consultant about this tumour.

    So no you are not alone....consider writing to the new consultant beforehand including your questions. You are paying these people via your taxes and it will be your on the table again if this is done wrong.

    I hope the new consultation goes really well xxx

  • Thank you Charlie. You are really kind to reply and I will have plenty of questions for the gynaecologist. I will let everyone know how I get on. What amazes me is I get more information from all you lovely women who have your own worries than from the medical,profession. Thanks again. To be continued !


  • Hi Molly, just read your post. Have to say most of what I know, I have researched on line , and of course the really valuable sharing of information on this forum.

    Having just read another post about being fobbed off, feel very strongly that we have to take control of our health wherever possible.

    I am at stage four with lung mets, previously scanned every three months, last one August 15 , as have moved area now have new oncologist st the Marsden. Who had told me that no more scans until I have symptoms. I have been feeling physcally well for sometime now, mental state no t so good!!

    Do worry though if my lung nodules are growing. Unfortunately their growth is not reflected in increasing CA125 as maybe negative use do not produce the tumour marker proteins. So I may ask for a scan when I have my next app.

    Sorry you have had to go for a private app, this should have been provided to you on the NHS as you have not been feeling well.

    All this stress and waiting is not good for you, it's the waiting that's the torture.

    Hope you soon get yr app and some peace if mind. You know all our cancers are different , but the anxiety we have is shared by all that's why we have to continue to be proactive for ourselves.

    Much love JackieO- do let us know how you get on. Xx

  • Hi JackieO

    Thanks for your kind reply. It is so good to know that other women understand exactly what I am trying to say. Here in Ireland the healthcare system is different. It's either medical card, public or private health insurance . I happen to have kept my private health insurance from my old job so I continued to pay it . It will probably cover my visit and if not I don't mind paying a once off full fee.

    I can really sympathise with your worry as once you go on this merry go round you are not allowed to hop off. I think all the professionals need a lesson on putting themselves in the patients place or at the very least imagining if it was their own loved one who had the disease . I have tried illustrate to them more than once that the feeling we have is like standing on the edge of a cliff with the possibility that one dayyou will be pushed over .

    However I don't want to be pessimistic on World cancer day . I haven't read today's paper yet but on the radio this morning there was some optimistic news about progress in the treatment of cancer. I hope they have included OC and PPC in their good news. Thanks again JackieO. I will let you know how I get on


  • Hi. Not using laptop/IPad as often....just too tired some days, so sometimes late coming to discussions. Some of the other ladies have offered wonderful advice, so no need for me to repeat. I do know that scans are requested & done If Doctors are concerned or have reason to suspect a take assurance that scans are not being done in your case. Also, having a long spell between visits can be considered a positive.

    Now all of that reads as patronising, but it is not meant to be. If you are under review YOU remains patient of the oncologist and if you are concerned about pains and/or symptoms your GP can contact the Oncologist for an early appointment. Or you can call his or her Secretary for an appointment. Write out your concerns and questions and bring sos done with you. Yes, all the oncology staff are busy but they will listen & explain to you if they think you do not understand.

    PPC is considered similar to some ovarian cancers and I know it is unusual, so I can understand your concern about lack of information.

    Try and get an appointment with your Oncologist before paying out money...unless you want a second opinion.

    So, sending you hugs and warm wishes - particularly as Spring is on its way and I find it raises my spirits.


    Daisies xx

  • Thank you Daisies for your reply . I really appreciate it considering how tired you are. I think I have read every possible thing written about PPC and I could possibly get an honours degree in the subject ! My problem is getting a proper detailed explanation about my own specific situation. However I am now in the process of getting that private appointment with my gynaecologist who is very nice. I am hoping he will have more time to listen to my questions and if I am still not happy I will seek a second opinion

    You are not in the least patronising Daisies. You have been more than helpful and kind as have all the women who replied to me. I will keep you informed


  • First of all, I'd suggest either writing to your consultant or writing down all your questions and at the next consultation explaining you need to know the answers. If that doesn't help, everyone has a right of access to their medical records. You can get them by writing to the hospital. You might not understand the jargon, but at least you would have more to ask questions about.

    Finally, a skilled gynae can tell an awful lot by examination. Usually because scans involve exposure to radiation a scan isn't done until you show symptoms or your picks up something. A study showed there was no difference in outcomes between starting treatment on CA125 rising or waiting for symptoms or a positive scan.

    My last scan was in 2012. Since then, thank God, I haven't had symptoms beyond normal aches and pains, my CA125 has been stable and my onc has picked up nothing of physical exam. It's hard I know, but please try to keep the faith and enjoy your wellness whilst it lasts. Vx

  • Thank you V

    I suppose it is the lack of explanation that is the worst thing and no matter how I put my questions I have always been fobbed off with vague answers . However today I took the step of arranging to meet my gynae privately so if I am not happy I will seek a second opinion. I have read that report before about CA125 tests not affecting outcomes. It doesn't make logical sense to me as of course you would not be treated on the results alone but on scans, physical examination and symptoms . Maybe it's just me and I am possibly talking through my hat ! We have a saying here " doctors differ and patients die !" Thank you V for taking the time to reply to me. I will let you know


  • Yes we are all different but......I don't think doctors realise what it is like to live with this b----y thing! I don't think they can unless they have experienced it. Most of us seem to be locked into check ups and only having scans or CA125 tests if there is a cause for concern. I think I am doing fine I? My last check up was in November and my next 3 monthly one is in March when I will have been cancer free for 2 years, I think!! My stomach muscles are refusing to knit so I have this bumpy silhouette, random pains occur but then seem to go away, occasionally feel a bit yuck after eating and so it goes on. However, I am very lucky to have a superb GP who deals with my anxieties brilliantly. She said she would order a CA125 although my oncologist warned against it in terms of raising anxiety levels. (Ha! Ha!) I thought that if there was something going on then I would rather know and get it sorted and if there wasn't I would be very relieved. Strangely when I got to do the blood test I backed out as a little voice was "trust your oncologist - he's got you this far". What was helpful in November was a thorough external examination, feeling lymph nodes, and my abdomen. The oncologist advice was if I have symptoms and they get worse and persist, come in. I am so sorry for fellow travellers who don't have a good experience with consultants and GPs, a good relationship can make so much difference. Maybe we could all feedback to our hospitals and GP surgeries what makes a good partnership and what doesn't help us cope with with this thing. On a positive note, just had 4 weeks in New Zealand and Australia - there is life after PPC Stage 3C after all. Thinking of you all. Val x

  • I could have been inside your mind when you were writing that reply Val. I know exactly where you are coming from. I got so tired of being told that the CA125 would only make me anxious . I'm the only one who knows what makes me anxious . After 3 years of no CA125 my anxiety levels were at an all time high until my new GP said to me when I was stressing to him about it when he said " let's do it " and I almost fell off the chair. I went ahead and of course I had an anxious week of waiting but this was because it was so long since it was done. In any case it came back normal but my oncology nurse took me aside out of earshot of my gynae at my next check up , and asked me if I was aware that it fluctuates. This of course took the wind out of my sails.

    I do envy women who have a team who are empathetic . I do however have a really nice gynaecologist and today I picked up the phone to make a private appointment with him. As today is World a Cancer day maybe it's a good omen ! Also reading about your lovely trip I want to be free to look forward to a nice holiday. I was toying with the idea of doing the Camino walk. Only part of it mind you and not the hostel way but comfortable hotel way !

    I also like your idea of feedback to all professionals who look after cancer patients. Take care and I will let everyone know how I get on. You are so good to reply


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