Primary peritoneal cancer

[Welshdaff]

I have had a family member who has just been diagnosed with this. Chemo and hysterectomy required. I’m really worried don’t know what to do. Anyone have any advice?

[Neona]

I have clear cell so not quite the same but most of us have had a big operation and chemo. I don't know much about primary peritoneal cancer but there will be ladies on here to help. You will find plenty of help on this group.

[Welshandproud]

Hi Welsh Daff. I'm Sian and I was diagnosed with Primary Peritoneal Cancer in September 2016. At the moment everything must seem so scary for you and you just want to help in any way you can. Firstly let me assure you that ppc like ovarian cancer is a chronic disease which can be treated if not completely cured. Your family member will just want you to be there for her. Listen to her concerns and worries, go to hospital and chemo appointments if you can and take her out for coffee and cakes when she feels like it. Make nice meals for her and spoil her a bit. My Daughters were brilliant and spent a lot of time with me just doing normal things, sharing a joke, watching dvds, taking me out for coffee. Once the treatment starts you get into the hang of things a bit and you meet others in the same situation. It stops being so scary. The fear is much worse than the reality. if you have a Maggie's centre near to you then I would recommend you going along with your family member. They are brilliant.

[lorraine71-Australia]

HI , Welshandproud has given you good advice, I would just add some encouragement I've been on here now 4 years and when I was diagnosed was told I would not see the year out, once she has a treatment plain in place just give her your support and do not google if at any time you need advice all-ways talk it over with her team and you will also find some amazing ladies on here to advice and encourage you both ..take care Lorraine xx

[Alifit]

Hi, I have PPC too. I agree with the advice my lovely forum friends have offered - it really isn’t the end of thee world, but it is scary. Once treatment is underway things will seem easier, but in the mean time use this forum for help and advice - we know from experience!

Best wishes, Ali x

[Bear4342 in reply to Alifit]

I too have PPC. (Stage IV). Diagnosised April 2018. It is scary!!

[Naimish]

Hi. My wife was diagnosed 3C PPC in Dec 2015. Debulking surgery with HIPEC and six chemos later IV as well as IP, she is doing well enough now. PPC is definitely treatable so ensure that she gets immediate treatment . Please do not delay

Naimish

[DianesK]

Hi Welshdaff

I have PPC too, diagnosed nearly 4 years ago.

Great advice from the ladies and being on this forum is such a great source of information and support. You will find amazing inspirational ladies here.

Definitely don’t google, it’s not real, trust me, from someone who spent night after night on every imaginable internet site.

Once the plan is in place and your family member is into a routine, it is easier to deal with. The op is big but very doable.

Sending lots of love xx 🌻

[BeeWild]

Welcome to this great forum you will find it a great source of support and advice xx

Can’t help you with the PPC but I believe it’s treated just like ovarian and although it’s terrifying initially as the other girls have said you soon get into the treatment routine and quickly learn how to deal with any side effects and on here there is so much practical advice it really did help me enormously! I wouldn’t be without these amazing people to help me through good and bad times xx

Hugs

Bev xx

[Eriksendi]

I was diagnosed with stage 3 PPC in June 2017. I’ve had 7 chemos and surgery and a few bumps along the way but still here and enjoying life to the full. My advice take each day one at a time, don’t think ahead, don’t google and don’t think about the what ifs!!! ( I did all of these!!!!!). Dig deep, grit your teeth and you will get through it x x x

[Ange09062016]

Hi! Just be there for them for support. I was first diagnosed with stage 3 primary peritoneal, 2 years ago. I went through surgery and chemo. After surgery they confirmed it was Ovarian Cancer not primary peritoneal.

I’m a year and 7 months from treatment and cancer free! Make sure they see a gynecologist oncologist and the best one out there. That’s who needs to do the surgery.

It’s going to be a long road but with family and positive vibes and amazing doctors she will be fine.

Message me if needed xoxo I’m in the US

[purfekt10]

Hello! I was diagnosed with primary peritoneal cancer in January. I had four rounds of chemo with carboplatin and paclitaxel, then surgery to remove my uterus, fallopian tubes, ovaries, and omentum. The doctor performed robotic surgery and it was a quick recovery. I had 5 incisions which were about 1/2 inch long and was back to work in 4 days. Then I had 4 more rounds of chemo. The last round was in late August and I am now in remission!

[IrishMollyO]

Hi there

I was diagnosed with PPC stage 3c high grade serous in May 2011. Inoperable but I responded very well to Carboplatin /Taxol and remained NED until 2016 when I had recurrence in my peri aortic lymph nodes. Treated with Carboplatin and at treatment end was stable . Then fate decided I needed another reminder of my mortality by introducing a totally unrelated Breast cancer last November. I had a mastectomy , skipped chemo and had 28days of Radiation. A few months after completing Radiation a routine scan showed a lung nodule and peri aortic lymph nodes swelling again .

I agreed to watch and wait for three months and yesterday my scan of ten days ago showed that the lung nodule had disappeared ! Lymph nodes still swelling but I’m going to watch and wait as advised for a further 8weeks . I was so happy about the disappearing lung nodule that im totally stress free right now

I just wanted you to know there’s always hope and your family member will probably deal with this with more courage than they think they have. Sometimes it’s the close family member that worries more . I found that I turned from a wimp into Wonderwoman as soon as I knew I was treatable and sailed through chemo. I was lucky in that unlike some women I had no extreme side effects.

Surgery is usually the first option but there are women like me who couldn’t have surgery and still surviving . When it comes to the time your relative gets her treatment plan please post again and you will have lots of willing advisors on this site rushing to help. In the meantime take care

XXX

💚💕

[ZenaJ]

Hi Welshdaff, I would suggest let her lead the way. She'll need someone to talk to and just be there for her. Some like a friend or family member to go to the hospital with them and support them through their chemo. I like to do these things on my own so don't be offended if she appears not to want you because it's not that at all. I found it more relaxing on my own without others to worry about.

It can be harder on those around us who worry about us but together we all get through it.

I wish her all the best and she's in good hands and has good family members around her who want to help. Zena xx

[Rlenesue]

Hi Welshdaff, I too have ppc, normal surgeries along with debulking. Treatment is just like ovarian cancer and is totally treatable. I know it's scary but like the ladies have said, once a treatment plan is made, and treatments start, it all becomes commonplace. Make sure if there is bloating, you can get it drained before chemo. She will feel a lot better. I had 10 pounds of fluid drained and felt so much better. Just remember to stay positive and to comfort her with this is temporary. You'll see the other side of treatment. The fatigue is the worst part.