At last formal diagnosis.

[Zena41]

Hello lovely ladeez,

Today I got the title high grade serous primary peritoneal cancer.

My head is all over the place worried about the future and my 2 year old.

My referral has been sent to christies today.

Xxx

[Tesla_7US]

Zena, do you have a partner or family that can help? Have you heard of HIPEC? or IP Chemo? That is chemo directly ported into your abdomen. I've had that plus a lot of other treatment which is outlined in my profile. All of it worked. I am currently NED 11 months. My treatment is the same as PPC. You can do this. Tesla

[Zena41 in reply to Tesla_7US]

Hi Hun I've heard of that heated chemo yes.

My dr told me they plan to start with carb/ tax ? Chemo 3 sessions then ct scan if unsuccessful then surgery.

Xx

[Tesla_7US in reply to Zena41]

Good. That's exactly how my treatment started and it consolidated the tumor burden. Surgery went well. Then IP chemo.

[valeriel]

This is probably the worst time when you are both shocked and uncertain but somehow an inner strength appears that will see you through whatever is to come. I had the same diagnosis in 2013 and am now counting the months until the hospital sign me off. I hold onto my oncologists words. You have a chronic illness, in the first instance we are going for a cure. If it comes back we will manage it. We all seem to respond to treatment in different ways and I find when I dwell on it , nothing is certain any more. However, I have two lovely grandchildren, a life full of love and activity and the longer I go before any recurrence, the better. I am a lot older than you so it is probably easier to cope with. I would just say, if you can, love your little two year old to bits as you do, and go for the best treatment plan you can get. Xx

[Zena41 in reply to valeriel]

Wow thank you. We have the same diagnosis, and you are nearly signed off wow!!!!

My dr has made me feel like there is no hope.

Can't wait to see an oncologist. After talking to you girls I'm filled with positivity. I just want to bring my little girl up and now I think I can thank you

Xx

[ScardyCat40 in reply to Zena41]

If you are referred to the team at The Christie and meet the Prof you will find he is very positive. Have you had a biopsy?

[Zena41 in reply to ScardyCat40]

Aww I need some positivity my dr and nurse have been doom and gloom. Yes it's christies.

Yes had biopsy x

[ScardyCat40 in reply to Zena41]

I was referred to The Christies from a hospital down South with PPC. I hadn't had a biopsy so The Christie referred me to St Mary's where I had my surgery then went to The Christies for chemo. I was eventually diagnosed with low grade serous stage iv

[Zena41 in reply to ScardyCat40]

Ahh ok. I had biopsy done same time as drain at NMG

Sounds like christies know a lot about Ppc and OC.

Which chemo did you have ? How was it. ..?

I'm supposed to be starting next week it has been a long wait of 3 months tests. X

[ScardyCat40 in reply to Zena41]

I had surgery first then about a month after that I started chemo. First line treatment is usually carboplatin and taxol but I decided to only have carboplatin

[Zena41 in reply to ScardyCat40]

Ahh they told me I have to have carb/ tax Then if it does not shrink to have surgery mine are several small nodules !

[ScardyCat40 in reply to Zena41]

Have you still got your ovaries? When I was first diagnosed I was told I wouldn't have surgery, then if I had stayed down South I would have had three cycles then surgery. If I can offer one piece of advice it would be that you have a choice in all of this so never be afraid to ask questions and always ask what your options are. I have been a patient at The Christie for 6 yrs

[Zena41 in reply to ScardyCat40]

Yes still got ovaries and everything. Yes my dad is good at asking questions.

[Cropcrop]

I'm so sorry you've had this rubbish diagnosis and there's nothing I can say to make this any better but if it's any comfort to you at all I'm under the same doctor, at the same wonderful hospital and even though my diagnosis was different to yours I have been so very well looked after and treated successfully, they're all fantastic.

I hope you have lots of support from family and friends while you go through this and you've got all of us here too.

Take lots of care ❤️Xx Jane

[Zena41 in reply to Cropcrop]

Thanks you have given me hope xx ps we may be neighbours 😂

[Cropcrop in reply to Zena41]

Hopefully xx

[riverside]

Hello Zena - I also have PPC and was first operated on in 2011 followed by Taxol/Carbo then was in remission for a year and since then have had 3 more chemos. I have just finished my fourth chemo which was Carbo/Caelyx and am in remission again. In general I get a year or a year and a bit between chemos BUT I am still here and no doubt so will you be after 6 years. You will need courage but you will get through.

I wish you the very best.

Marie

[Zena41 in reply to riverside]

Hi nice to meet you , this is just what I needed to hear thank you for taking time out to tell me xx

[Zena41 in reply to riverside]

Hi is that the survival rate 6 years they give u ? 😕

[ZenaJ]

Sounds like Tesla has the answer, Zena. It all sounds like double Dutch to me so sorry I can't help with any advice.

What I do know however, is you're young, have lots of help and many people have survived this. Stay as positive as possible. I know it's difficult when you're worried but you can get through this.

Best wishes, the other Zena x

[Zena41 in reply to ZenaJ]

Yes zena thank you the nurses say I'm young and that helps xx

[Gleedy]

I have PPC stage 3c and diagnosed Jan 17. I remember onky too well how i felt at diagnosis. Its a desolate and lonely place. I had carbo/taxol and surgery and a drug called Avastin. My original surgeon was so negative and oncoligist not much better. I think they are frightened to be over confident in case their words dont come true. That said ive had amazing care and even sent to a fifferent hospital for surgery to get the best outcome. I have had a great year since my op last June. My CA has recently risen and Ii am being monitored. Try and keep positive. I teally believe that helps. I am living my life to the full and probably didnt before. Its not all doom and gloom ahead. I wish you luck. This site helped me so much. Post your worries and you will always get support xx