No op

[Rankij11]

Hi everybody ,

I’m fairly new on here but wanted to see if any one else out there in my position as I never seem to read of anyone . Briefly, diagnosed April 2019 , after long wait started chemo in July , was stage 1V , extensive liver mets , so not good, CA125,~6000. Did Carbo/taxol , good response and now on PARP Olaparib, but no operation . I have respect for surgeon so accepted when he said no advantage to surgery , with liver involvement . So my question is , is there anyone else in this position. Most people seem to have had some surgery ? ?

Thank you

Jennifer

[Lyndy]

Hi Jennifer

I haven’t been in this situation but I have learned that a second opinion never hurts. You might want to see someone who does radical surgery just to compare advice. It’s your body... if it were me I would want to know I had considered every option xx

[Tesla_7US in reply to Lyndy]

Please get a second opinion. More information is needed to adequately assess your options.

[Rankij11 in reply to Tesla_7US]

Hi Tesla

Thank you for answering . I know it’s bound to happen as we are all individuals, but the differences in treatment cause doubts ? It may just be that the difference is in some cases they are looking for cure, or in cases like mine they are just managing the disease for as long as possible ??? But I haven’t read of anyone else on here who hasn’t had an op ?? Anyway I shall continue my investigations, so thankyou.

Jennifer

[Tesla_7US in reply to Rankij11]

Rankij, Some oncological surgeons are far more aggressive than others. Some are also more aggressive using drugs and radiation to treat the disease. You deserve to know about the most aggressive treatment options and then be free to make your decisions based on that information.

[Rankij11 in reply to Tesla_7US]

Thank you . I think in the beginning you are shell-shocked and accept anything . And then later you hear other stories from people who are in similar positions and start to question more . Onwards.

Jennifer

[Rankij11 in reply to Lyndy]

Hi Lyndy

Thank you for your reply . I shall investigate further I think ? It’s hard to argue against a team of professionals. !

Jennifer x

[Hidden]

Hi Jennifer

I too was stage 4 at diagnosis although no primary ever found. Diagnosed from swollen groin lymph node biopsy 2016.

Told no operation possible because of probable spread of very small "seedlings".

Only very small amount of cancer ever seen was on a PET scan.

Just finished a third line of chemo (carboplatin)

Had to abandon Avastin, Taxol and Niraparib as caused issues.

On watch and wait now.

Wishing you all the best

Janet

[Rankij11 in reply to Hidden]

Hi Janet

Thank you for answering . I’m really sorry to hear of your problems , and hope you are feeling well at present and enjoying time off drugs . I guess it shows how different all our issues are . I’m finding the tiredness caused by olaparib a bit overwhelming at present but need to persevere as seems to be working for now , but feeling a wimp to hear of all the treatments and trials you’ve had. Hoping you stay well.

Jennifer

[Hidden in reply to Rankij11]

Hi Jennifer

No-one going through this is a wimp.

Guess what I meant to say was get as many opinions as possible.

Wish I had asked for a second opinion just to confirm diagnosis and treatment.

Very best wishes

Janet

[Rankij11 in reply to Hidden]

Thank you , it must be hard for you always having had this uncertainty. I will follow up on this advice .Take care

Jennifer

[Maxjor]

Are they monitoring your liver? Has the treatment plan in place reduced or resolved the liver mets? I think that may be a good question to ask your oncologist and one to bring up to a 2nd opinion. In my initial debulking, they "scraped" (for lack of a better word) the cancer off my liver and my liver has been clear ever since (two recurrences and liver not involved in those). It was a liver surgeon in the room during the debuking who addressed it, not the gyn surgeon. So many variables, it depends on what yours it like, where exactly etc but another question to consider. Wishing you luck oxoxoxo Judy

[Rankij11 in reply to Maxjor]

Hi Judy

Thank you for that. First line chemo reduced mets only. Are you quite young ? sorry to ask but I really believe age dictates how the oncologists /surgeons proceed? I’m 74 so knocking on , but before this I was fighting fit . It took from early April until end of July for any treatment. I really don’t like complaining because mostly everyone has been fantastic, it’s just the niggles of doubt really

That sounds fantastic re your liver !

Jennifer

[Maxjor in reply to Rankij11]

Hi Jennifer. I was 62 when they operated. (Now 66). I am sure you’re right that they consider age when deciding best course of action. Good to have your questions for the docs though.

Oxox

[Rankij11 in reply to Maxjor]

And this always reminds me that I was really lucky to get to my age with no problems before. Puts life into perspective! Thank you

Jennifer

[Bailey81]

Hi, I was diagnosed Jan 2017, seen by surgeons, 3 different ones for different areas!!

decision was made not to have op., they could not guarantee to remove it all.

I am still going and have not had any really bad side effects from my chemo. no regrets as the last three years have been very do-able.

Dont regret the decision.

Good luck. xx

[Rankij11 in reply to Bailey81]

Sounds like a good result , so pleased to hear of your great progress . Thank you for sharing this information, it is all really helpful

Best wishes

Jennifer

[Amerthist]

Hi jennifer, whilst I am not in quite the same situation as you, I didnt have surgery. I was diagnosed August 2017 stage 3c. I didn't have surgery as there were so many nodules of cancer spread over so many organs that the surgeon said he wouldnt be able to remove them all and he said I could finish up worse than I already was.

I had 18 weekly carbo/paxol to which the cancer responded well. I have had no further treatment. I have three monthly scans and have remained stable since the chemo. I hope that the Olaparib works well for you.

Best wishes

Anne

[Rankij11 in reply to Amerthist]

Hi Anne

Thank you for that . It does seem there is a balance here between surgery/no surgery and the way the cancer is presenting. And talking to everyone on here has been so helpful. I did see scans before and after chemo, but to be honest I did not pay huge attention where all deposits were apart from ovary,liver and a lump near my bowel, so it could be there were others and maybe like you giving no advantage to surgery. I might ask a bit more about that next visit. I’m not quite so frozen in fear when I go now!!!!!! It’s really great to hear you are doing well , long may that continue ! Onwards !

Jennifer