My first post and I am not very good at this so please be patient. In fact I sent a very long email instead. Please let me know that I am not the only one in the world wit h this rare cancer which mimics the symptoms of Ovarian cancer and is given the same chemotherapy treatment apart from the fact that surgery is not an option usually offered. This is probably because it consists of cancer cells in the peritoneum and there are no solid tumours but it has the same deadly outcome as OV if diagnosed too late.
I was diagnosed at stage 3 in May 2011 and my CA125 of 8000 was reduced to normal levels as my treatment progressed. I had my last CA125 in OCT 2012 and none since on the grounds that it wont change the outcome and it would cause anxiety. I am given a general check every 3 months and a yearly CT Scan.
I was very happy to be invited to the Ova Care patient day in Cork and the OC patients were very welcoming along with the speakers who took part in the day. I was able to get answers to my questions. I hoped I might also find someone with my particular form of cancer .
My plea is if there is anyone out there who either has this diagnosis or is familiar with this disease please let me know. It will stop me from feeling isolated and the thought that I am the only one hanging on this particular cliff edge
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IrishMollyO
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Hello MollyO. Welcome, even though it is not a site we want to be on.
Firstly, I didn't have the same diagnosis as you, mine is clear cell OC, but it has spread to various abdominal areas, including peritomium, where lots of small tumours ''live".
Just to say, you may feel you are hanging on the cliff edge - a lot of us are. So give a wave , metaphorically, and imagine that wonderful 'penguin' and stick you tongue out at him. Hopefully the little buggers will stay away for a long time.
A touch of feminism in me, as I always think of the tumours as male.
So, a big warm hug going to you, from a wonderful sunny & warm Cork.
Love, Daisies
ps. tried to add a little dancing penguin for you, but have lost it, into 'cloud' land.
Hi there Julie40 my mother in law has just been diagnosed with stage 3 PPC. She is coming to the UK for treatment can you recommend a healthcare place she should go to? She will be with the NHS.
First time on a chat so not sure if I have done the right thing.
Thanks Daisies and Julie40. I am new to using forums and I believe I should be on OVACOME . Let me know if this is so. We belong to a very exclusive club which I would rather not be a member of. It is good to know that there are people out there who I can compare notes with. For tonight my fatigue is catching up with me so I will be in touch soon. You all sound so kind
Hi Molly O, great you could come to Cork, I was there also. It was indeed a fantastic day. I am sorry I dont know anything much about your type OC. There are other gyne oncs around would you consider getting a second opinion. Would your medical team support you in this. I know there is one in Waterford and also in Dublin, I am informed by my friend that her brother was being treated in Cork for a form of Leukeamia and was told there was nothing more to be done. So the family got a second opinion from an oncologist in the Mater and as a result he transferred to another hospital down here and he now hopes that there is treatment on the way that will help him when he needs it. The onc in Dublin felt he should have been going to a specialist dealing with bloods and referred him on. It might be worth having a chat with your gp Best wishes
Hi Suzuki.Thanks for your kind words. I will be seeing my med team next month and they are already aware that I am interested in second opinion. My gynaecologist is a wonderful kind person and hopefully I will be getting a CT scan. The trouble is that this disease takes no prisoners and the trick is to have as much time as you can between treatments. There is a lot of controversy worldwide even within the medical profession about the pros and cons of the CA125 blood test for instance. I would be interested in how often other women are offered it.
Hi MollyO.I have primary stage 4 O.C which is also in the Peritnium and lungs.Its a horrible disease and one starts second guessing and pre-empting.Sendi g u a huge hug and a smile .The NCCP are rolling out a protocol for G.Ps to follow when women attend who are symptomatic with O.C as it can be so wrongly diagnosed as IBS or something similar.All GPs will be required to do the CA125 test.Its not a screening tool but maybe it can be used as a base line for individul reading.xxx
Thanks AnnieH. i am not sure if you are in the UK or Ireland but it would seem to me that different countries differ in their approach. The CA125 may not be the ideal test but it is the only one available and particularly to check for recurrence . I am tired of being lectured about false positives and false negatives. I understand that it is not to be recommended as a regular screening test but surely in a situation where the initial diagnosis was backed up by an abnormal CA125 and which was reduced with each chemo session then it should be done to check for recurrence. Many in the medical profession do not put themselves in our place and although I would never wish it on anyone I would like them even for a short time to walk a mile in our shoes. Don't even get me started on wrongly diagnosed IBS and I am so glad that this particular issue is at last being addressed so that in future years women will not have to wait until they are at stage 3 or 4 to be diagnosed. Why did thousands of women have to die before the penny dropped.
Sorry I did not respond sooner but I had very rare retail therapy day today and just read your post before I left. I hope all goes well for you and if you believe in the power of prayer I will pray for you. Thank you so much for your good wishes. Will keep in touch but I only check for emails etc once a day
I totally understand your frustration about late diagnosis. I was stage 4 and also told that there was nothing they could do dor me in Belfast so I refused to accept it and went to a specialist in Christie hospital in Manchester. Thankfully he was a specialist in PPC and here I am to tell the tale a year later. If I had of listened to the hospital in Belfast I wouldn't be here today so get a second opinion if you need it. I'm brca 1. Have you been tested for this ? I'm not sure what age you are but apparently young diagnosis of PPC there is strong possibility that it's genetic. I was 39 with no family history but tested positive. I wouldn't have been tested in Belfast as I don't score highly enough but was sent by my oncologist in Manchester. Don't want to worry you unnecessarily but if you haven't already would be worth discussing.
Thank you Julie for your reply. You are so young and I had heard that it is mostly older women who are diagnosed. I was diagnosed at 66 in 2011 at stage 3. I had the carboplatin and taxol treatment and was pronounced in remission in OCT of the same year. Meanwhile I am checked every 3 months and I mostly feel like I am waiting for an axe to fall. I don't have a family history of breast cancer or ovarian cancer but in any case it was never suggested that I should be tested for BRCA 1. My own guess is there must be a cut off age that they don't go beyond. Free breast check is no longer offered after 65 in this country .
I am so glad for you that you found a specialist on PPC. My own family circumstances left me without the option of moving too far from home for the past 4 years. I try to stay positive and take one day at a time. Stay well and stay positive Julie.
MollyO . Your a true Inspiration.There you are with a diagnosis that for some women would absolutely floor them but it's fantastic to see you questioning the medical side of things,questioning treatments,seeking advice.Eventhough It might not seem like it but you are being proactive with your illness.Ive learnt to stay away from reading statistics about stage 4 cancer because When it gives the 5 yr survival rate ,you have to understand that that was 5 yrs ago and so many good medicine have become available in the last 5 yrs.
I'm living in county cork,I'm part of a wonderful multidisciplinary team.My Oncologist stated that each of his patients are the main focus during team meetings and we are not stats we are individuals. Giant hug to you.xx
HI Annie H. So sorry but my computer kept throwing me off the site every time I tried to reply so here goes again with the Dylan Thomas line " I will not go gently into the still night. Rage ! Rage against the dying of the light" As soon as I got my diagnosis I wanted to know everything about this illness and of course I had heard of the term the silent killer. Well it is not good enough in the 21st century that so many women should die because nobody has come up with a screening test that would detect it before stage 3 or stage 4. I am sure I drive my team mad by asking this question over and over again. Meanwhile I think I have gone way past my " sell by date" . Thanks to being able to connect with women like yourself I have learned a lot more. Knowledge is power they say so i will know enough to ask the right questions. That is not to say that I always get answers.
Thanks for your kind words about me AnnieH1. We are all in the same battle against this vicious disease and we must all fight to make women as aware of it as they are of breast cancer and cervical cancer, As I said in another post more women are diagnosed with breast cancer but more women die of OC and related cancers and
that is a sobering and shocking statistic
On a more cheery note I hope you have a lovely positive weekend
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