Ppc cancer

[Sibby21]

Curious if anyone here has beaten ppc cancer- how often are you tested for reoccurance ? What do these tests involve?

[kaza64]

Hi there in 2012 I was diagnosed with low grade stage 3c PPC up to now no major reoccurrences . Do you know your grade or staging?

[IrishMollyO]

Hi Sibby. I asked that question but may have put it in the wrong place so I will be very interested in the replies you get. I was diagnosed in May 2011 with a CA125 count of 8000 which went down at each 3 weekly chemo of carboplatin and Taxol and was back to normal by completion. I had a CT scan at end of treatment which was clear. The last CA125 done by Oncology dept was Oct 2012 and they refused it ever since on the grounds that it can show a false positive or false negative and that it makes patients anxious. I disagree as I believe a woman with a high count at diagnosis is someone who shows a true positive . I have been checked every 3 months alternatively by either the Oncology dept or my gynaecologist who does an internal examination and who ordered my last CT scan in May 2014 which was clear. In May this year my new GP ordered the CA125 and thank God it was normal but the oncology nurse was none too pleased that I had it done. I asked if a scan was being done and was told they do not do scans willy nilly . Tests will only be done if you have symptoms and any aches and pains are put down to age in my case

I went for my more recent check up a few weeks ago to the Oncology dept and this time I insisted that I needed to clear up all the questions I ever needed to ask and I had asked some of them before. One of them was " how will I know it is back without tests " The stock answer I always get is " oh . You'll know " which tells me nothing. In any case to my utter amazement when the questions were all answered the Oncology nurse told me I was being discharged by Oncology but would continue to checked every 6 months by the gynae. When I asked why I was told that as far as they were concerned I was now disease free. I did remark before I left that it must either be a miracle or perhaps I was misdiagnosed in the first place. I don't think they thought it was funny.

There you have it Sibby. Despite my lack of belief maybe I am one of the lucky ones and if I am more women can be hopeful. I am not sure where you live but I live in Ireland where there are only about a dozen cases a year of PPC. When I read the different stories on this site I find that the medical profession have varied approaches to it. I really wish you all the best for the future. I hope that I have not confused you but this has been my personal experience. This site is great and there are other women on it with PPC. Keep in touch and I will too. I would love to know how you get on

XXX

[foss54]

Hi Sibby, I don't think you ever "beat" PPC. For me, it has never been a fight, anyway.

The aftercare is as for OC, with three monthly checks. What they check depends on your local people. Here (Glasgow), I have a blood test (CA125), and only a scan, if something shows up. In my case (high grade, 3c), I had surgery a year ago, and chemo till January. The cancer was back by April, unfortunately, and we are now trying hormonal treatment, rather than chemo.

Good luck

[Julie40]

Hi I live in Northern Ireland but treated in Christies in Manchester.

I have PPC and was stage 4 at diagnosis in March 14'. I've had a year free from treatment but unfortunately I've had a recurrence. I was told that it would be a case of when not if. It was not in a negative way but just helping me deal with the reality of the cancer. I was told it was to be managed like a chronic illness. It helped me understand it and what the future would bring. We are all different though and I think this is down to me having a very late diagnosis.

I was in 6 week monitoring then recently moved to 3 months although my Oncologist would see me at any time I felt I needed to go to clinic. I had symptoms and went for a ca125 and although within normal range he ordered a scan. He believes that patients know their bodies better than anyone. I'm due to start treatment again in Sept. Back on the groovy train ! Hope this helps and doesn't worry you. We are all unique in this xo

[valeriel]

Hi Sibby. Just to add my experience to the earlier replies. Diagnosed October 2013 with some sort of cancer, confirmed as PPC after two operations in Feb 2014. Cancer free at that point, confirmed in September 2014 by base line scan after chemo. Since then three monthly checks and now four monthly and each one relies on me saying how I feel. No blood tests or scans. Part of me wants these checks, part of me doesn't. At my last check, the oncologist felt my abdomen and my neck and above my boobs, presumably checking lymph nodes. She asked about all bodily functions. So, that is what I now check. As others, the oncologist always says that I can contact them any time if I am worried and I find this re-assuring.

Early in this journey my oncologist said that with the first treatment they are going for a cure and if it comes back then it isn't curable but is treatable as a chronic disease. I liked that approach. I didn't like the specialust nurse who talked about percentage survival rates and would not contact her if I had any concerns. Like everyone who has had a cancer diagnosis, we know it can come back at any time. Most days I am very optimistic and even think I might be a survivor, one of the lucky ones! Other days I think maybe I am living in cloud cuckoo land and it is going to come back and get me. Psychologically, this time is far harder than going through chemo when I felt I was at least doing something to get better.

So, I shall go off and play 18 holes of golf in the morning, trying to ignore a bit of discomfort on my right side which I have had before and it has previously gone. I hope all this is helpful. I certainly find this web site very supportive, just knowing that all this uncertainty is shared by so many women who are all determined to make the most of life. Valx

[jane2014]

Hello Sibby, I was diagnosed with high grade serous Stage IIIc PPC in May 2014. I had chemo to Jan 2015 plus the usual de-bulking and Avastin which finished in June. Since then I've had a follow up CT scan which picked up a thickening of the peritoneum and my CA 125 had risen from 8 to 16. My Onc examined me, asked me how I was feeling; had I lost weight; unusual bowel movements; had my hearing changed(!) and said he wasn't too concerned but sent me for a PET scan to investigate further. I'm now waiting for the results. My follow ups are every 3 months until further notice. They reduce to 6 months if they are happy that the disease is at bay. I'm lucky to have private health care through my work so not sure what the norm is or indeed if there is such a thing as a norm but I do know the insurance company wouldn't sign off anything they felt was unnecessary.

Hope that helps and thank you for asking the question. I'd love to hear more from PPC survivors as there is so little info out there.

Very best wishes

[Emalou71]

Hi, I was diagnosed with PPC stage 4 July 2014 aged 42, I had 9 sessions of taxol & carbon. Ultra radical surgery - including a liver resection, I am currently on number 12 of Avastin out of 18. And am currently in remission and have been since February 2015 (long may it continue) I have my ca125 checked 3 weekly and CT scan 4 monthly at present. My oncologist has hinted that when avastin is complete we will move to 3 monthly ca125 checks, feel a bit apphensive about that xxx