Testing for ppc

[Juliette35]

Hi, I am being treated for stage four ppc and was just wondering if you can have a blood test to see if you are at risk of getting this horrible disease. I think I read somewhere that it could be in your genes, if that is right I have had no one in my close family who have had cancer. It just seems so unfair that by the time you start getting the symptoms it's got to stage three or four. They don't seem to say a lot about it for instance not like other sort of cancers. I have a younger sister and I don't want her to go through this, I am not very good at explaining myself, but if there was some sort of test you could have once a year from a certain age like you do for breast cancer. This ppc just feels like a hidden disease. I am sure a lot of other's who have this must feel the same.😔😬xx Julie

[ScardyCat40]

You should be eligible for BRCA testing even without a family history. If you phone the ovacome helpline they should be able to advise you. I'm araid its not as simple as going to your GP for a blood test as you would need to be referred to a specialist genetic testing centre.

[Juliette35 in reply to ScardyCat40]

OK thankyou, will ask about that. Xx

[Millie-c]

If you speak to your gp they will be able to refer you for genetic testing.

You will meet with a genetic specialist who will discuss everything with you and do a blood test to determine if you have the gene.

If it is positive your sister will be able to be tested.

Take care,

Mandy, xx

[Hidden]

Hi Juliette, I agree with Millie C go to your gp and speak to him about getting genetic testing. They should also be able to help you at your Oncology Clinic so either or both to be honest. It is something I have been thinking about recently and must say it to my onc at next appointment. Since my diagnosis, I have had three cousins on my mothers side with a cancer diagnosis, two breast and one pancreatic so I think that changes the perspective for my treatment options in future.

[Juliette35]

Thankyou for your reply's and helpful advice, I will mention this to my gp when I next see her. I have my next ct scan next Tuesday, so praying everything will be OK and that the chemo is working. Xx

[harpist_UK]

I have just had the BRCA test - my onc suggested as it opens up different treatments should I need them in the future (let's hope I don't!!). Best of luck with your scan.

[Juliette35 in reply to harpist_UK]

Thank-you harpist, I think we all get nervous wondering how it's going to go. I know my c125 as gone up twice since my last scan which I am a bit worried about, also on my last scan the c word had got in the lining of my bowel, so praying this chemo what I am now on stops it going any further. Thankyou once again for your reply. Best wishes julievxx

[IrishMollyO]

Hi Julie

I just wrote a long reply to you which disappeared in a cloud of smoke into cyberspace so here goes again with a slightly shortened version.

I was diagnosed with PPC over 5 years ago when my tummy swelled up to enormous proportions in a very short space of time. Up to that I was told I had IBS . By then I was stage 3c and the bloating was due to a fluid called ascites which a lot of women with OC and PPC get. I was treated with chemo only and remained disease free until this Mar when a scan showed I had swollen lymph nodes. My treatment starts week after next.

I fully agree with you about feeling isolated when you are told you have something nobody ever heard of. Most people have heard of OC but not PPC. It is difficult to believe but there is no screening test for this disease in this day and age. However researchers are working on it. You will have probably heard by now of a blood test called CA125 which in my case was used to confirm my diagnosis . The normal count is 35 or under and mine was 8000 at diagnosis. It came down very quickly as my chemo treatment progressed. Despite all this it is not used as a routine screening test because in a certain percentage of women it can show a false positive or a false negative. This means it is only used when you get symptoms which as you rightly say will more than likely be stage 3 or 4.

I have no experience of checking for BRCA gene as when nobody in my family had this I was not offered it. I read in one of the replies to you that nowadays you don't have to have a relative to get tested. I can see why it should be done for everyone as it can give your oncologist a choice of more drugs as far as I know.

Sorry Julie for making this so long but I wanted you to know you are not alone with PPC. I also hope it makes sense. Good luck in your treatment.

XXX

[Juliette35]

Hi molly, thank-you for your advice it is much appreciated. This is my third try at replying to your text, my first two dissappeared like yours. Lol. You have done brilliant so far and long may it continue, i started the same as you with my tummy swelling up basically over night and with terrible pains. The Gp who I saw sent me for a colonoscopy and told me she thought it was bowel cancer, I was never expecting that I was very upset. Had the colonoscopy which was horrible, it felt like my insides were being ripped out, after all that it was clear. So went back to my own Gp and she sent me for a ct scan, it showed up that I had ppc , had my first chemo then three days after chemo was admitted to hospital with blocked bowel. Came home from hospital six days later and continued with two more lots of chemo three weeks apart. Then debulking operation. Finished last of that chemo last November I think. It should say on my profile about treatment. How often were you having your chemo and what type of chemo. I am now on a different one to last year. Sorry for rambling on a bit, better send this now before it dissappear 's again. Wishing you all the best molly, live Julie xx

[IrishMollyO]

Hi Julie

Just back from shopping and reading your reply now . You had a different experience to me. I just had chemo only and 5 years ago I was never told about debulking . I was admitted through A and E when a very vigilant locum GP took a blood test . She didn't tell me what she suspected but she rang me as soon as the results came back. She told me to get to a hospital as soon as I could so after that you know the roller coaster we end up in ! 8 days in hospital to remove 8 litres of fluid and followed by chemo. This was Carboplatin and Taxol which is nearly always the combination to treat both OC and PPC.. I had it every 3 weeks for 6 sessions after which I was told I was now NED which you probably know means No Evidence of Disease . Those three little letters mean a lot ! As I said in my previous post I now have a recurrence in my lymph nodes so I meet them next week to explain my treatment. This time I have been told it is Carboplatin only by my CNS . I need to ask why Taxol is not included so I hope the oncologist will have an explanation I can understand.

You on the other hand have been through a far worse experience to me Julie. I hope you are over the worst of it. I do think the bowel problems are the worst part of this disease. . Thank God I never had a blocked one but lately I think that I am heading that way so I hope this new chemo won't cause it . What is your new treatment ? I hope there are not too many side effects . Will keep in touch . I will follow your progress . This site is great and the women are wonderful . Have a lovely weekend. Love

XXX

[Juliette35]

Hi molly, I don't believe this, I am replying to you on my phone. Had just got it ready to send when it dissappeared again. Sorry I am only just replying but had our two grandchildren staying here since Wednesday as our son and his wife have moved over near us. We took them back yesterday, so will be chilling out tonight. I don't understand why they are taking you off taxol 😏I was on the same as you till the end of Last year, then put on avastin. But after my last scan my oncologist said my c125 had risen so I had to come off it. I am now on chemo again and it's called caelyex, I have it once a month. Also as well as the c125 rising it showed that it has now gone into the lining of my bowel, I am praying that when I have my next scan on Tuesday that this chemo as shrunk it.

When is it you see your oncologist I hope you get some answers. I will keep in touch and let you know how things go. I hope you have had a lovely weekend, we have had the grandchildren.so have kept my mind off the c word. Yes it is a great site and everyone is so nice. Keep in touch and I pray that all goes well when you see your onc. Love and hugs juliexxx