My first Post

[Bostonmom]

I was diagnosed with Primary peritoneal cancer in late Dec 2018. My primary care doctor couldn't figure out what was going on with my sore abdomen. Finally went to hospital ER, they did a CT scan and found extensive nodules and malignant ascites. He referred me to my Oncologist. 17 lbs was removed from my abdomen the next day and I had a PET scan the following day. I heard of CA-125 for the first time and it was 14,397. Started on 6 rounds chemo (taxol and carbo platen). After each round my CA-125 dropped (4988, 596,33) and by round 4, 13.2. I then went for debulking surgery on April 25th. Robotic surgery was performed removing my omentum with 1 small nodule and a full hysterectomy at UF Health in Gainesville,Fl. I came home the next day and doing great. I will have final 2 rounds of chemo starting next month. If I had not acted immediately, I would have had less than 6 months to live. My prognosis is much better now!

[Solange]

Hello Boston Mom, well done on on your first Post on this Forum. 👏You'll gain a lot of help and advice if you ask for it, I'm sure. I found I didn't feel so alone once I plucked up courage to join. I hadn't met anyone else with Ov Ca before I did and felt pretty isolated but that all changed very quickly. We also have a laugh, as well, and exchange thoughts on all sorts of topics and also share happy stories with each other, too.

I'm so pleased for you that things are going well for you. 💐

Best wishes, Solange 😊

[Trathi]

Hi Boston Mom,

Firsts posts are awful as you don’t know what to write or how it’s going to be accepted.

This site is amazing as I have found everyone very supportive and reassuring. Especially when you have been given awful news. I have incurable Ovarian Cancer myself and when I first got the news it had returned and my life expectancy was two years maybe more maybe less as you can imagine it was devastating, the women on this site showed me it wasn’t as it seems re life expectancy, some have carried on 12 years maybe more. So please do not feel as though your life is ending.

Positivity goes a long way, and a good relationship with your team, listen carefully to them, trust them but if something is too much ask for a second opinion which your team will not mind.

Sending you lots of love 💕 hugs 🤗 and positive thoughts.

Tracy xxx

[Maxjor]

Welcome Bostonmom. Your journey so far sounds great--that ca125 was scary but the drops during treatment must have made you feel so good. Glad you are getting a nice break before starting again and it also sounds like your attitude is-- and will continue to be-- very helpful along the way. Did you get staged and do you need to get genetic testing? Were these brought up at all? Some women prefer not to know about staging and others do not need genetic testing if there is no history of cancer in the family--your oncologist will know. Wishing you luck on your upcoming chemo and that you wipe out any hints of your cancer! This is my favorite group and I know you will find everyone so helpful with questions, concerns and victories! oxoxxo Judy

[Bostonmom in reply to Maxjor]

I have not been staged. I did have genetic testing and I'm BRCA positive. My sister got tested also and is positive but she doesn't have cancer. She plans to be proactive and have her ovaries removed soon. She had a partial hyst. S couple years ago.

[pattyellen]

Hello, Bostonmom, Welcome. I was diagnosed with peritoneal cancer in 2014. Started in the appendix. Hysterectomy, momentum removed along with the appendix. In 2015 I decided to have HIPEC procedure at Mt. Sinai in NYC. where my spleen was removed. Cancer disappeared for 6 months. Then received chemo. I am currently on maintenance Avastin along with Xeloda tabs every other week..

Enough for now, although the story goes on and on! Love from Pattyellen

[Bostonmom]

I am thankful you are doing well. The prognosis of Peritoneal cancer is scary if nothing is done. I'm fighting it with everything I've got. I'll be going on s parp inhibitor after chemo is done.