Primary Peritoneal cancer

This is actually my first post because it has finally dawned on me that although I have been replying to people since I joined in May my own worries and questions were tagged on to the end of someone else's post. Please forgive me on that one and put it down to me being a total non tech person. This site has been an answer to prayer for me and is full of the most amazing , knowledgable and empathetic women. Without you I think I would have cracked up a long time ago. There are so many of you but I know you won't mind if I single one of you out. Suzuki ! No matter what is happening in her life she has a kind helpful word for everyone. I hope you don't mind if this is a long post but I really need your help and advice. Also I do not want to mention my hospital or location for obvious reasons but I can say I live in Ireland . I really do hope that medical teams do not log on to this forum as the details would be recognised by them. Or maybe I am just being paranoid

I am writing today because I think that psychologically I am at some kind of breaking point. It really all comes down to my medical team leaving me in some kind of limbo. I was diagnosed with stage 3 PPC in May 2011 after many years of knowing that something was not right but my GP at the time put it down to IBS or anxiety. 15 years went by getting the same story.

Then my life changed. I took early retirement and went back to my childhood home to care for my elderly mother. I was more concerned with her health than mine and just lived with what I had been told was IBS until in 2011 I could not ignore that I had gone up 3 dress sizes and when I was trying to sleep I could not move without wobbling and needed the loo many times during the night.

Fast forward through being spotted by a vigilant locum, immediate hospitalisation , lots of tests and the now familiar CA125. Then on my birthday I was told the shocking news although by now I had a good idea that the news was not going to be good. I did tell the oncologist that I did not want to know the prognosis as I would deal with it better not knowing immediately. I have seen this man only once and that was so he could meet me and authorise my treatment. Ever since during my six monthly check with oncology I have met a succession of junior doctors and my questions are answered by my liason nurse. I meet with my really nice gynae every 6 months and he has been the one to order the few scans I have had . The last one was in May 2014 and I was told there was no evidence of disease.

This brings me to the CA125 test. I am aware that this test can show a false positive or false negative but as someone who had a count of 8000 on diagnosis that came down rapidly with carboplatin and taxol I argue that I must be someone who shows a true positive. I get a negative response from my nurse each time I mention it as she quotes the oncologist as saying it only makes women anxious. As my last one was in 2012 my new GP ordered one in May this year which was 17 and I was much relieved by that. Maybe I shouldn't have felt relieved especially as I don't feel particularly well and have unexplained pains which I was told were age related at my last check up . At that same check up last month I was told I was now being discharged as disease free and would just see the gynae every 6 months.

I am really sorry for bring so long winded but from reading all your posts over the past few months I see a huge difference between my experience and most of yours. For instance most of you talk about debulking surgery. Is this only for Ovarian cancer or does it include PPC as it certainly has never been suggested to me as an option. Most of you seem to have a huge knowledge of the various treatments and clinical trials. It is never up for discussion for me and I feel that any questions I have just irritate them. If I mention any worrying symptom I am told to see my GP or that it is just my age.

Over 4 years on I am now getting very weary , despairing and sad. My dear mother who I continued to care for died in Jan and so my reason for getting up every day and putting my best foot forward is not so clear anymore. Maybe I am just going through a bad patch and need to get back to that positive attitude I had during my treatment. If I could just find someone else who can tell me that they went from stage 3 PPC to being told over 4 years later that they were disease free with no surgery and just one 6 month course of chemo then I will have to take it as real . I will even believe that my aches, muscle weakness and extreme fatigue are just age related.

If any of you lovely women have patiently read this long post I must say first of all thank you . I would love to hear your comments . I admire the bravery of each and every one of you and I hope to get back my mojo soon. You have all kept me going in my lowest times. God bless you all

XXX

P..S. Is a photo compulsory as the only one I have on me now is a passport photo that makes me look as if I am already dead !

36 Replies

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  • Hello Molly ..

    First of all, you can make your post less public by pressing the edit button and following the trail and then by resubmitting it.

    Your story echoes my own in a lot of ways. I thought for a long time that I was being neglected. I'm still not totally convinced that I'm being treated right but a kind and thoughtful registrar recently explained why my treatment regime is different from the main.

    I was diagnosed in 2011 like you were. I had chemotherapy which produced a partial response.

    I have both high and low grade Ovarian (PPC) according to my hospice doctor.

    In 2013, I was very poorly when a large tumour became necrotic. I was operated on and survived which is a minor miracle to me.

    My symptoms got worse in terms of pain, fatigue and general debilitation. I was put on a range of medications including morphine. So, given the symptoms and the fact that my local surgeon told me I had advanced progressive disease and that I would need more chemotherapy, I expected to go through it all again.

    My oncologist disagreed and I was distraught. I felt I was being left to the elements.

    The registrar told me that although I have faster growing tumours growing in my abdomen, giving chemotherapy would probably mean that the widespread low grade disease would become chemo resistant. Since there are so few options, this would be a disaster scenario for me and so although they know my disease is progressing (and calcifying), on balance they feel this is the best way for me.

    I don't have CT scans any more since any change would be ignored. (I can have them, but what would be the point?) I have never had a CA125 outside of the normal limit so my disease is hard to track this way.

    I'm told that having an abdomen full of fluid would be a trigger for more treatment.

    As an aside, I had another minor miracle moment this year when my pain reduced and so I feel better in myself. My registrar says it will return as the intestines move and dart this way and that, but for now, I'm enjoying a reprieve I only dreamed of. Xxx

  • Hi TinaB. Thank you so much for your prompt and detailed reply. Our situations are quite different as I never had a tumour but seeds of cancer in the peritineum and 8 litres of ascites when first diagnosed. Grades whether low or high were never mentioned to me despite my questions. I went along with what I now know to be the usual chemo regime for both OC and PPC. I was happy when in Oct 2011 I was told I was in remission and would be checked every 3 months .

    As statistics show only about 10 women in Ireland get PPC so that worried me even more. Through no fault of their own oncologists or GPs may never come across this disease. I read everything I could about it and when I could finally pick up the courage to read the usual prognosis for PPC and I read 25 months I realised I was gone way past my "sell by date " .

    When you tell me that your surgeon and oncologist disagree with the next step for you I feel really upset for you and all of us. Why is there such a variety of procedures. I can only compare our predicament to that of a prisoner on death row who occasionally gets a reprieve . We should not be made to feel like this. If this was a male only Cancer would we have been waiting this long for a proper screening test ? Thank God for Ovacome and Ovacare who give us a platform and also for committed researchers including women researchers who will one day reveal the secrets of these dreadful diseases .

    Sorry for getting back up on my platform again TinaB but I was so touched by your bravery I went off on a rant. Although I know what calcified means I am not familiar with the term bring used in relation to Cancer so I will look it up. I am so glad too that you are feeling so much better now. Long may it continue . You were my first reply and I replied to you first so I am going to reply to each of those lovely ladies through the day . May you stay well for a long long time.

    XXX

  • Hi Molly .. My main disease is in seeds too and I had 3.5 litres removed after being diagnosed with PPC.

    I don't read the stats on PPC. I try to take a day at a time. Xxxx

  • Thanks TinaB. Of course you are so right about stats and the proof is me walking around over 4 years later. I adopted the one day at a time position almost immediately and it works 99 per cent of the time. I think that it started to slip when they told me it would just be 6 monthly check ups. Thanks to you and all those lovely positive women I will get back on track please God. Will keep you posted and will really try to keep it short ! Take care

    XXX

  • You too.. Xxx

  • Hello. It sounds good to me, 6 months treatment and then disease free for 4 years. I'll have a piece of that please. I am stage 3c high grade and wait to find out tomorrow if they can operate. Fingers crossed your aches and pains reduce. X

  • Hi Leeds lady. Thanks for taking the time to reply. I am sure my post was way too long and moany when all I really wanted to say was how can I have gone from stage 3 PPC to what they term disease free in 4 years with no treatment in between and no explanation . I really wanted to know if there was any other PPC woman with the same experience. If it is true then I am either a medical phenomenon or I never had it in the first place.

    I wish you all the best for tomorrow and the future and that all your procedures will be successful. Take care

    XXX

  • Hi Molly ,

    I couldn't possibly not reply to such a long, heartfelt post even though I don't have specific personal experience to share that would be helpful.

    I go on an American support site too and the 'wait for symptom' approach to diagnosing a recurrence seems to be a little more common there. I also read a medical journal article a few weeks ago which advocates this . It too suggested that doing ca125 tests adds to anxiety and not to overall survival rates. I will have a look to see if I have the link saved later.

    With all your skills picked up as a carer for your mother (you will have more than you realise), how about thinking about volunteering - perhaps in a care home? Or perhaps think of something more indulgent or decadent to get yourself out of bed for.

    As for the photo, it's certainly not compulsory ☺. I struggled to put a photo in which fell in the centre of the circle. I previously had a profile picture which just had the top half of my face on - I looked like 'where's Wally' and I couldn't find how to edit it on my phone! I had trouble uploading another so now that I have got a half decent one with my daughter, it's staying put! Without a photo I imagine what people look like. I knew a gorgeous lady called Molly. She had white, fluffy, jaw length hair with lovely large, kind eyes behind gold rimmed glasses - so that's how I imagine you!

    Hope you get the answers you need and get to refocus your life.

    Love Sandra x

  • Hi Sandra

    What a lovely kind reply. I could feel those positive vibes coming my way. I have read all about the wait and see approach and the fact that earlier treatment for recurrence doesn't make any difference to the outcome plus CA125 bringing on anxiety. In fact before I heard of this great site the only place I could read about PPC was on an American forum. Then I found all you lovely women and you were all being proactive and bring watchful for recurrence and getting treated promptly. That made me realise that perhaps I was being short changed . That and the kind concern of people like you keeps me going.

    Sandra keep that nice picture of me in your head. I did let my hair grow back to its natural colour . Silvery grey with white highlights in the front. I keep it in a feathery cut style. I do wear glasses but not gold rimmed ones. Black rimmed with a grey design at the side. To go with the grey hair ! My eyes were always my best feature. They made up for the bad ones ! If i can find a good photo I will put it up. I love yours with your beautiful daughter . Take care and thank you so much for your reply

    XXX

  • Hello MollyO I don't have any experience of Ppc I am just awaiting diasnosis myself for an abdominal mass so I get the waiting bit. You are clearly very brave and going through a very upsetting and frustrating time. One of the things I have learnt from this site is waiting is part of the game and we need yo be strong enough to get through this. You have gotten this far and should be proud of yourself and recognise your inner strength to do it again. Thinking of you x

  • Hi Catspelle. You are so very kind to reply to me and my moans despite your own worries. I used to think I had an inner strength but just recently it had gone behind a bit of a cloud. With the help of kind people on this forum including yourself I will just hope for the light of hope to shine again. I do wish you so many good wishes for the future. God bless you and keep you safe and I hope your results will be good.

    XXX

  • Hi Molly. This is just to say hello from someone else with PPC, high grade, stage 3c. Four years? You're doing well, with four years, but it sounds like you've had a lousy time of it, which is sad. Life must be very different without your mother, but you will find some meaning to life, if you listen to yourself - it's never too late! Sandra's idea is great, too - you have loads of skills :)

    Regarding your questions, I had surgery, summer 2014, as they thought I had womb cancer, but it wasn't debulking surgery, as such, rather a total hysterectomy and omentectomy. Then I had chemo for five months, which didn't really work, as the cancer was back, after a few months. So you see, it could be worse! I am now on hormonal treatment, to see if that has any effect.

    As catspelle says, it's a waiting game. Six monthly checkups aren't much, so maybe you can keep bugging your GP, when you feel ill. My local practice is great. Is there a local hospice? Again, mine is great, offering therapies and support. You shouldn't be struggling on your own, dear Molly!

    Loads of love, Eileen x

  • my story sounds like yours Eileen, what hormones? They want me to have more chemo

  • I'm on Tamoxifen, having tests next month to see if it's working.

  • Hi Eileen. So many kind women replied to me that I am working my way through them in the order they came in. Thank you so much for sharing your story with me . It means a lot to me. I have never been told what grade but only that I had stage 3. In fact I read somewhere that it is not possible to stage PPC. I have read so much on this subject that I think my head could explode sometimes with all the facts I have read. I also hope that my post was not too negative. i didn't mean it to be. I just started and didn't know where to stop. It was worth it when all of those lovely replies came through getting me to think positive again. Thank you do much again Eileen. I hope and pray your new treatment will work well for you.

    xXX

  • Thanks, Molly. You don't need to apologise for your post, it's bloody hard, and that's a fact! I know what you mean about your head exploding ...

    Take care xxx

  • Hi Molly. Please don't worry about your long post. Sometimes, just sharing how you feel with people who really understand can be therapeutic in itself. I was diagnosed with stage 3 PPC in July 2013. I was lucky in the fact that my GP was very on the ball and the initial hospital journey was quite swift. My first chemo was given within about 4 weeks, but even that time seemed endless. Unfortunately, I suffered a relapse in January this year, so the fact that you have been disease free for so long is really good. I'm obviously sorry to hear that you are not feeling particularly well at present. It must be really tiring, as well as worrying, that your hospital team don't seem to be listening. Have you tried writing down your worries/ concerns and taking someone with you for support to your next appointment. You can then go through your list and not leave until you have answers. My specialist has said that some women find regular monitoring of ca125 causes more anxiety that helping, but obviously that is not so for you, so could you stress that not knowing, is for you, harder to deal with and push for regular testing.

    I do hope that you soon begin to feel yourself again and can get the answers you need. Take care. Ali x

  • Hi Ali. Just getting around now to thank you for your lovely informative reply and for sharing your own story with me. It is so good to hear from women with PPC as we are kindred spirits fighting that nasty gremlin. I am sorry to hear you had a relapse and I do hope that whatever treatment plan you are on will be 100pc successful . I feel like a fraud moaning but I am finding it difficult to believe that Oncology have pronounced me disease free with no explanation. I have always gone to my appointments with all my questions written down. In fact the day they discharged me my nurse told me to go ahead with all my questions at once. Then she raced through the answers before telling me I was being discharged from oncology . If this post gets sent too early just want to let you know I keep getting thrown off. I will keep you posted and the very best of my good wishes and prayers go to you

    XXX

  • Hi Molly, I can't offer you any advice regarding PPC but I can send you a massive virtual hug as you're certainly in need of one right now. Is it possible that the loss of your mum and having time on your hands has given you chance to actually think about you. Whilst caring for your mum you've been able to put your own health worries to one side but now you've got time to think. I know when I was having chemo and I had to take time off work it gave me too much thinking time and every ache and pain got me imagining all sorts and my positivity disappeared for a while. I had my last chemo at the end of August, am back at work, feeling more positive and my aches and pains have disappeared. I'm not impressed with the care you've been receiving from health professionals and think their lack of care isn't helping you. When I was treated originally I had a fantastic Consultant who couldn't do enough for me. He sat and listened, was always ready with a tissue, he answered all my questions, was never in a hurry to shove me out the door and he acted very quickly as soon as he suspected a recurrence. Sadly I've now been transferred to an Oncologist as I've been having chemo and I find her bedside manner appalling. She hasn't got time to listen to me and wants me out of the door as quickly as possible. I dont have much faith in her at all as I feel I have no one to turn to for advice. That's why I love this forum, I've received some wonderful advice and support from Suzuki and many others and really don't know how I would cope without you all. I think you've done really well these last few years and you should give yourself a massive pat on the back, love Kerry xx

  • I only been on this sight for about a month now, but it reassuring that I am not Alone I was dianose last year been through having the drainage of the fluid been removed and the chemo been suffering in silence as chemo nurses was just getting on with things I also had low moments and I think because you were looking after your mother it took everything away from what was going on with you but now you need some me time it's early days and you are still grieving but volunteer work did help me it may help you and it sounds that you you may do more for you self and make small targets for yourself keep your self in touch with this site there is great people to help and take little steps all the best bobby01

  • Thank you BobbyO for your kind words of advice. I so much appreciate that you took the time to reassure me and so have many others so I will thank each and everyone. It means so much to know that other women know what I am talking about.. Take care

    XXX

  • Thank you Kerry. These replies mean the world to me. You were right in saying I have more time to think. It made me realise that there was never any real conversation about my illness with my team for the first few years or indeed ever. Then when I asked questions I was usually fobbed off. Maybe they were being kind and thought the truth would be too much for me. All I have ever wanted was to take part in an intelligent conversation and have some control in any decisions to do with my life. Roll on my next appt in Nov so I can have that conversation and find out how I went from stage 3 PPC to disease free in 4 years

    I am so happy for you that you are back on track and feeling positive. I hope my post didn't upset anyone but I know how kind everyone is when someone wants to have a moan . How right I was. I am just making my way through all the replies and thanking everyone who took the time to lift little old me up. I will keep you posted. Thanks again Kerry. You and everyone who replied just made my day.

    XXX

  • Hi Molly,

    I'm so sorry to hear you aren't feeling all that great but delighted you are disease free. Don't forget that you have had a lot of changes in the last few years and have lost your mam, and however much that was expected it still all takes a physical and mental toll so be gentle with yourself. I'm sorry for your loss also, your mam was a lucky lady in her kind and caring daughter.

    I'm also in Ireland , the southeast. I just noted the point you made about debulking surgery. My mam, while roughly speaking her primary cancer was probably ovarian, it presents more as peritoneal carcinomatosis. I'm probably being a bit imprecise but to be honest in some ways I've just stopped asking specific questions as the answers are increasingly unpalatable!

    Like you, she had vague symptoms, diagnosis was due to build up of ascites, and her disease presented in a seed fashion, not large tumours, which probably contributed to the delay in diagnosis. Her surgeon told her that while he could operate if she wished, it would be sort of pointless unless he did a very radical surgery, if she survived she would probably need two colostomy bags, and there would probably be microscopic cancer left anyway due to the seed type presentation, so after a very tough surgery and possibly diminished quality of life, she'd still need chemo. So thats maybe why surgery was never discussed with you. Mam opted not to have surgery and is battling on for the moment.

    Also, mam's team repeatedly told us they only used CA125 in conjunction with all the other clinical info, so not to pay too much attention to it.

    I hope you feel better and more at ease having come on here. Some of us have to be the ones where the treatment works etc, so why not you! It's only to be expected that when the medical team are saying get checked every 6 months instead of 3 that you are left feeling a bit more unsteady and insecure. I hope some of the answers here are a help and reassurance. And a big shout out to Suzuki from me too, she's been such a support.

    Wishing you all the very best

    Mary

  • Thank you Mary. I realise now that maybe I should just accept things the way they are and not try to turn over every stone to find something bad underneath. I get so angry sometimes that this woman's cancer is not highlighted more. I was never given the information that your mam was given or asked to make a decision. It is the lack of an explanation and the uncertainty of this disease that causes the stress.

    I realise I am being a bit selfish considering all your dear mam has gone through. I pray that she will get better and that her current treatment will work for her. She obviously has a very special daughter in you. Thank you for all the information and I will keep you updated. God bless you both

    XXX

  • Hi again. Mam was diagnosed almost 3 years ago, and in some ways we got the information bit by bit, as things went wrong, which even though we didn't realise it was happening that way, was good as all the info at the start with all the pitfalls would have been very tough. We thought mam would have surgery, but in hindsight I'd say it was probably always quite unlikely, so it was a shock to find that out down the line. But i think communication has been good in our experience, we were told as much as we could handle, but one step at a time.

    Being a cancer survivor is known to be a stressful situation, you've gone through the mill physically and mentally, you think you're supposed to feel delighted and put it behind you, but you're still traumatised by the experience and frightened of the future, and you have the added complications of grief and a changed role in life. Take it easy on yourself, and dont feel that you are one bit selfish! Xxx

  • Thank you so much Mary for your very helpful words. I just had dinner this evening with a friend who despite her wonderful efforts just doesn't understand. Only people on this site seem to get the whole thing. I told her how helpful it was to have this outlet but she thought that I might go on it too much and not allow myself to say and do normal things that are not Cancer related. I tried to explain that when Cancer invades your body it invades your thoughts as well. I am going to try so hard over the next few days to banish all negative thoughts and replace them with positive ones. I will start by going to church tomorrow morning and pray about it. I will pray for your mam too and all the lovely women on this forum. You have really put it all do well Mary. Thank you once again

    XXX

  • Hello Molly from another PPC case! Not quite the same as you as I did have debulking surgery. The first, in December 2013, was to remove a large tumour that I could feel - 9cm by 6 by 4 so no wonder I could feel it. Once it was removed I thought I was disease free but they explained that I should have chemo to sweep up any microscopic traces of the disease. Then they discovered another tumour on the Omentum so more surgery at the end of February 2014 and out came that one. They removed ovaries etc. as a pre-caution to give me the best chance. Then it was the chemo. They said they may never know where the exact origin of the PPC is. And...two years since my last surgery, I am disease free too. So, I guess if I hadn't had two visible tumours they may well have just given me chemo, always assuming I and they knew that I had PPC. So no CA125s and no scans for over a year. On 4 monthly check ups but likely to go to 6 monthly soon. Half of me is relieved as I think that must be good news and the other half still thinks but how will I know if it comes back. What I have noticed is that it is very hard to be as sympathetic and understanding as I used to be. It is as if this disease takes all our emotional strength in living from day to say and week to week. You have been through so much with your mum but you need support too. You will get it in bundles form this site. I don't post very often but read and respond if I feel I can help.

    All the advice about dealing with nurses, oncologists and consultants is good. I certainly went with my list of questions and the advice about having a friend with you is one really good idea. Do keep in touch - as you say it is good to hear from other PPC cases. Take care and be strong. Val

  • Hi Val. When I read what you have gone through I feel a bit of a fraud . You really have gone through the mill and still took the time to reply to moany molly ! I know what you mean about being unsympathetic with people with minor ailments. Also well meaning friends sometimes come up with their own diagnosis Last night really late one of my friends suggested I may have coeliac disease which she said could explain my fstigue and bowel problems ! She said all this knowing my original diagnosis and treatment . I think because many women with OC and PPC don't lose weight and look well people assume there is nothing going on.

    My wish for you is that you remain disease free Val. I will keep asking the questions that will clear my head. I never brought anyone with me as I didnt want to worry my family and I felt I could handle things better on my own. However my sister in law has offered to come along if I want to have someone there so I may take her up on the offer. I will keep you posted and I hope and pray for continued good news from you

    XXX

  • I had stage 4 PPC diagnosed March 2014. I had 9 weeks of chemo then debulking surgery followed by another 9 weeks chemo. I had a year from last chemo and about to start 2nd line next week for recurrence. I was advised not to go looking for info on PPC but to trust in my Oncologist. I'm pleased I did because any time I deviate from this advice I read something and it scares me so avoid it again. You've done really well but it seems that you've had a really difficult time emotionally and sometimes that's just as hard to cope with. Wishing you well on all accounts. Lots of positive stories on here to uplift you and you will have given us hope with yours xo

  • Julie. Thank you so much for your reply. This is my second attempt at replying as the last one just disappeared and flew into cyber space. My recent post I suppose brought out all the frustrations and emotions of living with this disease. I should be happy to be told I was disease free and only to be seen every 6 months. In fact one reply said as much . It is good that you seem to have access to your Oncologist but I have only met mine once and that was before treatment 4 years ago. My liason nurse I am sure is highly qualified but I feel the oncologist could have taken the time to at least see me before he discharged me. On the other hand my gynae is a lovely kind efficient man.

    I feel bad moaning Julie when you have gone through a so much rougher time than I have ever had and yet you still took the time to reassure me. I have read your replies before and you are always so kind and helpful. You are also obviously extremely patient and not like me who wants to look under every stone and question everything.

    Another good thing that has happened as a result of my post is that I seem to have found a much bigger community of PPC women.

    I want to wish you all the best for your next treatment and I will be thinking of you and praying for you. I really do believe that so many people praying for me got me through the past 4 years.

    XXX

  • Never feel bad loaning there is always someone on here that cares enough to listen and respond. We are all in the same boat.

    My oncologist told me at the start to avoid the Internet and if I have any questions refer them back to him or cancer research site. I have been quite good at that. Everyone is different though. I'm the girl who doesn't even want my scan reports. I ask him to give me the high level detail and just what I need to know.

    Thank you for your thoughts and prayers. I believe in the power of prayer and also feel that it's also a factor of why I am here today. Keep in touch xo

  • Hi Molly O and other kind ladies, I am blushing here haha. I am not an expert but try to be helpful. I was never told what kind of cancer I had and didnt know until the machine broke down in rt and I was given my file to take away while I went for that cuppa. I got the cuppa read the letter in the file as you do and promptly went numb. I think its clear cell which was mentioned. I have never asked what stage, I dont want to know. Molly you have had a lot to deal with this year. On my first recurrence my sons partner lost twins at 26weeks into pregnancy. My hair wasnt supposed to fall out but it did with stress. So with OC we all have different things running in the background or foreground. It is okay to feel at odds with ones self. You have probably been dealing with a lot of legalities regarding your Mum and this takes its toll, I know, I have been there too. What I would say to you Molly O, go and visit an Arc Cancer Support House, if there is one near you. Their services are totally confidential and extremely helpful. It is okay that you are finished surgery or treatment, you can still go. The chemo does affect our bodies and we get pains where we never had them before. Of course the first thing we think of is, is the cancer here now, or is it there now. I went as far as packing a bag for hospital at one stage and my gp laughed at me. He said it was my body settling down and that surgery and chemo is foreign to the way we were born so its okay to feel ill or have pain and he did a pelvic exam and told me go home. As for your diagnosis, I can see why you are mystified and unsure. Any of us would be. Another thing would be to get a referral back to your oncologist and ask him or her questions. You dont have to wait until you get an appointment in the post, talk to your gp about your concerns and ask for a referral or ask your gp to go back and check the reports he got from your oncologist, he should have them on his pc. Try not to worry, you are in a hard place at the moment and yes I think go back to your gp first and ask him to read out the reports he got. I did that at once stage because I wasnt happy with my gynae so it can be done. Sending you a huge hug all the way from Cork Best wishes

  • Hi Suzuki. As you can see from my post I am one of your fans. As well as being kind and helpful you write with such good humour. One of the worries I have in the back of my mind is that last Thu I had a mammogram ordered by my GP so I am waiting for the results. I didn't mention that in my post but if I hadn't mentioned breast pain then I wouldn't be on this merrygoround and have the meltdown that resulted in that long moany post . You are so right about legalities. I am one of the executors and the process seems to go on forever.

    I do have a very good local support group run by a very wonderful woman all on voluntary contributions. I wasn't able to go very often when mother was alive but I have no excuse now. There is meditation and tai chi reflexogy etc. I also came to dublin for the 2day conference on Living well with cancer. It was a bit daunting going on my own but I very quickly got to meet people even though I am shy to the point of appearing standoffish . I even got the courage to stand up and ask a Cancer researcher speaker about research into rare diseases such as PPC and if the pharmaceutical companies had any interest in us since they might not make so much money from us. I pointed out that although more women worldwide are diagnosed with breast cancer more women die of OC. I acknowledged the wonderful work of June and researcher Dr Sharon O Toole. From my question I was later approached by a small group of people including one man who is one of the rare men who get peritoneal Cancer. His csme from his appendix and he was singing the praises of a surgeon in the Mater a Dublin . He said he is the only surgeon in Ireland to do perform the latest HIPEC procedure. You may have heard of it. It combines surgery and inserting warm chemo into the area at the same time. I will keep it in mind if I ever need surgery.

    I should be seeing my GP next week with my mammogram results so that will be my time to ask questions and hope he doesn't have a student with him this time. I don't usually mind students but I didn't feel as free to ask questions as I was conscious of him being there. Also my next appt with my nice gynae is Nov so i do hope there are no dramatic incidents between now and then as I am looking forward to my nephews wedding in Oct. Thanks again Suzuki. You are a tonic !

    Sending a big hug back to you.

    XXX

  • I'm here to give a great testimony about my family, Dr Ekaka just restored back my family i have been have misunderstanding with my husband and his family we both have been living separately for over 1 year now. Till last week that i find a testimony on the internet on how Dr Ekaka ekakaspelltemple @yahoo. com help someone to bring back his family together which was the same issue that i was going through, I contact him about my problem and he told me what i needed to do after 24 hours i got a call from my husband asking me to forgive him for what has been going on it was just like a dream to be as things began to happen the same way Dr Ekaka told me. I am so happy right now that i have my family back together again.

  • Hi Molly

    I've only posted on here once before so here goes. So sorry to hear about your ordeal and the care that you have been getting.

    I was diagnosed with PPC in March 2014 and had 3 chemo sessions, de bulking and then 3 more lots of chemo. I called my cancer Paddy as it was St Patrick's day when I was diagnosed, unfortunately Paddy liked his digs and has returned!! I had my 1st of 6 chemo sessions yesterday which are every 3 weeks to evict the unwanted guest!!

    When I went back to the oncologist I asked him if he would mind if I taped the consultation on my phone as it was just me and my husband who attended, usually my son or daughter came as that extra pair of ears and to write answers down to our many questions but we're both away. He let us tape the consultation and it has been so good to listen to it with a clearer mind outside of a hospital environment.

    Hope this has been of some help and take care

    Pam x

  • Hi Pam. It is so kind of you to reply and to share your experience with me. I really hope and pray that you can throw out that unwanted guest Paddy and bang the door after him. I hope he vanishes like the snakes St Patrick is reputed to have banished from Ireland long ago !

    I was so touched by all the caring replies I had including yours. At last I felt people got me and understood the unbearable stress of the uncertainty of this disease. I was so confused by my experience and the totally different experiences of other women that it finally exploded into me baring my soul in that long post. Up to then I feared that my medical team might recognise me and be angry but now I don't care about that anymore. I will keep on asking questions. I am not sure if you are in the UK or Ireland but Oct in Ireland is Breast cancer awareness month. Breast cancer has got a huge amount of publicity in the past few years and rightly so. However I am not sure that people are aware that although more women are diagnosed with breast cancer more women die of OC and PPC. That is a scary statistic but it is not publicised. We already have a teal ribbon. I now have my teal coloured nail Polish for Ovacare day in Dublin in November

    Sorry for getting back up on my soap box agsain Pam. Good for you asking to tape the consultation. I was totally mesmerised. The very idea of me asking to do this would probably result in security being called . I realise as I am even typing this that I have been in a bullying situation. Not by everyone in my team but if they are reading this they know who they are . All the replies including yours will give me the courage not to be afraid to keep on questioning. I wish you well Pam and hope and pray that your treatment will be totally successful. I hope you won't mind me saying that I will pray for you. I will keep you posted and please let me know how you are getting on from time to time.

    xg

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