Gyneoncologist visit today

[annieH1]

Well hd a nice chat with Dr C today.Surgery is still off the cards as he said my cancer is too scattered,He also said it looks like Im sensitive to carbo/tax,which I am delighted about.Dur to being tested positive for BRCA 1 gene ,they will decide about double mastectomy about 6mts time depending on how my cancer responds to Avastin.So all in all it was a good day,and the sun shone in cork yippee! Hope all of my fellow Ovarians have a wonderful weekend and bank holiday,xx

[Hidden]

That is good news indeed, great that the carbo taxol is working , that gene was mentioned at the Ovacare information day. Well things are going your way and its a weekend to celebrate. I have nothing planned for the weekend, maybe some planting and a trip out. I dont particularly like going away long weekends as I feel places are too crowded so hopefully will get a break in the next few weeks.

[annieH1 in reply to Hidden]

Hi Suzuki,I don't think anyone got gardening done this weekend! What a wash out.I hope your feeling better.Went to Bunratty Castle and Folk Park Sunday,it was nice between showers and at least we had little cottages to step into when it rained.Actually convinced the hubby to have our photo taken,dressed up in 19th century costumes,it was hilarious! I'm looking forward to the sunshine because I know it's coming sometime ha ha x

[Hidden in reply to annieH1]

No indeed plants are still in their trays, though my neighbour started doing hers this evening. I have a tomato plant on my kitchen window which wont be going anywhere soon. That was a nice break to have on Sunday, I was just incredibly lazy because felt too uncomfy to sit in the car for long. I am not too bad now, the pessaries are working for the most. Hopefully will get apt with gastro clinic and get sorted. It is prob the Avastin as you say. Maybe tomorrow we might see the sun, we lit the stove on Sunday it was so miserable up here

[IrishMollyO]

Hi AnnieH. You were one of the first people to welcome me on the site in Apr. I am still trying to use it properly and be helpful if I can. If I remember you also have PPC . Just to say that surgery was never offered as an option to me. When you go on American sites they almost always start with what they refer to as debulking. Is that something they just don't do in Ireland. So many variations with different oncologists you would wonder why there isn't a standard practice worldwide.

Hope you had a lovely bank holiday despite the wintry weather. Meanwhile I hate to tell you that I escaped to sunny Ibiza for a week. We go home tomorrow and then back to reality xxx

[annieH1 in reply to IrishMollyO]

Hi MollyO,so jealous of your input of sunshine and sangria! Ha ha.

My Onc,said that some surgeons would do the operation as I'm a private patient but he wouldn't do it (even-though he'd get paid from insurance company),as it would not cure me and in fact might make things worse.He said he could remove some but not all,I've got it in the womb,ovaries,omentum,pelvis,lymph nodes,lining of the lungs and he thinks cysts in the liver.I know reading about women having optimal debulking makes me think,should I be insisting on surgery,it's so perplexing as you know.Its difficult to believe sometimes that the fluid I carried for months was malignant and attached itself to the peritenium.Your right there's no universal treatment and I guess it's because we're all different.I hope your keeping well (I'm sure you are after the sunshine) ha ha.x

[IrishMollyO]

Hi AnnieH. Just in from one last soak on the beach to get me prepared for wintry Ireland. We have already checked out this morning so will have to go find the shower room.

Thanks for telling me your experiences. It has never been spelt out to me where exactly mine is but I just presumed since it's the peritoneum it's all points South. They are not in the habit of going into any deep medical discussions with me. I can feel them mentally patting me on the head and told how lucky I am. I have lost the rag a few times as I do feel I know as much about PPC now as they do. I am also a private patient bring treated in a public hospital.

Maybe Annie there is a little glimmer of hope in the latest findings on immunotherapy that I have been reading since I came. However today's paper says the NHS won't fund a recent drug to fight OC.Where the NHS go can the HSE be far behind.

Anyway I am off now to prepare for dinner accompanied by some nice wine to help me get back in the fight when I get home. You are great Annie and so helpful xxx

[Hidden]

Hi Mollie O, safe journey home and I hope you enjoyed dinner and the sangria. It is slightly better today, the temperature here is up a little. As regards debulking, I did have some and then more months down the line. My surgeon needed a skilled gastro with him in case of bleeding and a stoma. Luckily I escaped the latter. I was left with some ovary because it was too dangerous to remove it in case of a major bleed. I too didnt get a lot of detail after the first surgery. They feed you information slowly. However I do not meet with the gynae surgeon anymore just the oncologist who is absolutely brilliant to me. As regards the new drugs I do hope they come on board to help us. We can access Avastin here more than UK so imaybe we might get the new drugs here as well. If you feel you need more answers, ask questions, if you feel you need another opinion, you are entitled to ask for it. Best wishes