How long can you live with inoperable OV cancer?

[Cumbrianlass5]

How do you get a prognosis when ovarian cancer is inoperable? Diagnosed ovarian cancer stage four high grade. Started treatment September, carbo/taxol, in hope of shrinking it to allow an operation. However, specialist says operation is too risky because of cancer in lymph node near my aorta. Due another scan in May but no plan and no contact with oncologist or cancer nurse until afterwards. Nobody will give a prognosis. I asked if it would be weeks or months but they just said "dont think like that". It has left me feeling in limbo. How do others cope with this awful feeling of uncertainty?

[Newbie_2020]

Not easy as a situation and please try to think positively. Many in here have been diagnosed as stage 4 and some were also told "inoperable" but things have shifted for them after chemo.

Half of the battle is to have a strong and a positive mind. Easier said most of the time with this dreadful disease; nevertheless, it helps and you can do it.

Will the scan in May be the first since you started chemo? Usually, they do three cycles the a scan to assess the response to chemo.

You are entitled to a second opinion which may be beneficial.

[Cumbrianlass5 in reply to Newbie_2020]

Thank you for replying. They scanned after 3 cycles and again after 6. Scanning again in May to see how things are then. Chemo must have knocked back the ovarian cancer as C125 was 147 in June, 218 in September and 219 in October. Now it is 24. However, it is the cancer in my lymph node which is stopping them operating. Am trying to get a second opinion from Christies. Awaiting a reply.

[Newbie_2020 in reply to Cumbrianlass5]

Fingers crossed. I hope the second opinion will give you some reassuring news. Take care.

[Cumbrianlass5 in reply to Newbie_2020]

Thank you x

[Shrek1609 in reply to Newbie_2020]

Please ask to speak to Professor Gordon Jayson at the Christie for a second opinion. Google him! He’s an amazing guy whom I’m honoured to have as my oncologist.

I’m stage 3c, and wouldn’t be here without him.

He is an absolute legend and I have read of many ladies who have gone to him for second opinions, many of whom had told they were incurable/inoperable and he’s helped.

[Cumbrianlass5 in reply to Shrek1609]

Thank you for replying. Have had my second opinion from Christies who also say the size of the lymph node cancers make it inoperable. Any way, seeing a doctor at the Bobby Robson Cancer Centre Newcastle later this week about maintenance drugs. So fingers crossed.

[Lyndy]

It might be useful to get a second opinion at a specialist centre for OC perhaps? It’s likely that your team don’t really know what the prognosis is but specialists in OC might have a better idea and they might also be able to suggest options for you. xx

[Cumbrianlass5 in reply to Lyndy]

Thank you for your reply. Am seeking a second opinion from Christies but still awaiting reply to my GP's request.

[rosebine in reply to Cumbrianlass5]

Hi, I have had 2 x 6 lots of chemo. Told I was inoperable after 6, Stage 3C. HAd 8 m onths off chemo. Just finished second 6 and have been referred to a surgeon to be assessed, The plan after the first 6 was for me to go on a maintenance drug. Dont know what the outcome will be but maybe this will be an option for you.

[Cumbrianlass5 in reply to rosebine]

That sounds very hopeful. Fingers crossed all goes well for you.

[Rankij11]

Hi, Diagnosed April 2019. Stage 4 . Did the chemo , response good . During this time there were mentions of surgery. On completion I was waiting for results of scan when I received an appointment for a pre -surgery assessment . When I attended there was much consternation as I was actually deemed inoperable because of the extent of liver involvement . Trusted the surgeon as I knew him from my work before . However I’m BRCA 2 so went on Olaparib and at the moment holding steady. So you could say the surgeon was correct in terms of the best way for qualityof life. ? However I feel like if I were you I would get second opinion as it does leave lingering doubts in your mind.Best wishes for your future treatment

Jennifer

[Cumbrianlass5 in reply to Rankij11]

I am not BRCA. Asked about other drugs but oncologist said none appropriate. Hope they work well for you.

[SUE7777]

Hi Cumbrianlass, Firstly you are under one of the best Cancer Treatment Centres in the Country. Secondly there are new treatments which have been ground breaking. Stay positive fit and healthy and you will do well. The trouble is we tend to think that inoperable means trouble but that's not always the case. I do understand waiting for results is one of the most difficult things but most of us are in that position most of the time. Take care and all the best. Sue xx

[Gemmyw]

I had spread to the same lymph nodes so am also stage 4 but I still had a radical hysterectomy to remove what they could reach and I understand this is common. Are they saying that they won't operate at all or just that they won't operate to remove the lymph nodes? I had my op Oct 18, finished firstline chemo Feb 19 and am due to finish third line for latest recurrence in 6 weeks.

[Cumbrianlass5 in reply to Gemmyw]

They say the operation to debulk is too risky because of the cancer in one particular lymph node.

[Gemmyw in reply to Cumbrianlass5]

I had my debulking (modified radical hysterectomy, omentum and appendix removed) and no one told me it was too risky to operate. They just left the cancerous aortic lymph nodes alone (they did say that they were too risky to operate on) and the chemo mopped up the cancer that was left in the affected nodes.

Something here doesn't quite make sense to me and I hope you check it out.

After my op and first line chemo I was NED for almost a year. The same aortic nodes flared up again along with some other bits when I recurred. Things got quite a bit worse while actually having second line (ARRRGGH), but I'm 2/3rds through third line now and have reason to hope that I'll be NED again after.

[Cumbrianlass5 in reply to Gemmyw]

Thank you for replying. Here's wishing you well with your latest treatment.

[Natsmb]

First, I am sorry to hear that you have this extra challenge with this tumor near your lymph node on top of everything else. The prognosis is challenging enough without having to accept and think about added complications to the process. I positively hate that you have to deal with that. This cancer journey with all its ups and downs and twists and turns- sometimes I'm just like, "Oh for Pete's sake! What next?!?" So, I read in your reply to Newbie_2020 that the CA 125 was impacted and moved you down to 24. That is a really good response actually! In the entire history of my chemo treatment for two and a half years I never had the luxury of any of my chemo having an impact on my CA 125s like that. It never responded to the carbo taxol and it only just maintained or dropped maybe 10 points at a time with the last and final drug I used.

So for the moment, you have an excellent reason to feel positive that that cancer near your lymph node could respond as well. And in any case, the doctors seem to feel positive enough to look forward to working with you in May- and believe me, had they had severe doubts about letting the situation rest through May (until May?), it's highly likely they would have passed those on.

If it were me, I would be giving myself permission to just enjoy the next couple months. I don't know about you but I had this tendency to tell myself the responsible thing to do was to not allow myself to find joy over those little victories- such as a significantly decreased 125, "just in case"- Just in case the situation was an anomaly, Just in case it was a false reading, just in case the next treatment stopped having an impact.

I have stopped giving myself permission to dwell on it. I've decided it's much better to yank up those positive results in my head as often as possible and not give myself a minute to think on the worst. I don't need depression on top of everything else so that has been my way of dealing with it.

It definitely can be difficult to do this because between the medications and the treatment and the uncertain future, so much can add to the anxiety and worry.

For myself, I've started to treat myself to little joyful things as soon as I catch myself in that bleak zone. It sometimes does take me a bit to kick myself out of it and I've just forced myself into other activities because whatever time I do have left on this Earth I intend to enjoy and I'm not going to let cancer rob me of that!

Here is a big virtual hug for you. 🤗

[Cumbrianlass5 in reply to Natsmb]

Thank you. And here's a virtual hug right back at you! What wonderful vibes you have. Mostly I keep busy and positive but just every now and then I have a bleak day when I feel I am in some sort of surreal land of endless waiting ... It is a nasty feeling. Thank you for helping it to pass.

[Tillymint61]

Your chemo can still carry on positively affecting the body for months after the last treatment. A scan in three months may show a positive result on the lymph nodes. As for prognosis I think because no two people react exactly the same way the oncologists don't give a prognosis. My oncologist wouldn't be drawn into that conversation at the outset and advised me not to look up stats etc. It was at that stage it didn't look like I'd be able to have debulking surgery. Low and behold after 4 cycles of chemo and subsequent scan they felt I could. Still having treatment post operative. I now appreciate not having a prognosis at that stage although I thought I really needed and wanted it at that time. I wish you the best outcome at that next scan.xx

[Cumbrianlass5 in reply to Tillymint61]

Thank you. Hope all keeps going well with you.

[delia2]

Hi. I know you’re in the North but there’s a surgeon in Hammersmith who seems to be willing to operate when others are not. Her name is something like Christine Foutopoulos. Depending on what you hear from The Christie maybe you could get an opinion from her. But chemo may take care of that lymph node. Xx

[Cumbrianlass5 in reply to delia2]

Good to know. Thank you. Yes it would be wonderful if the chemo kept on working.

[Lesinbeds in reply to delia2]

Christina Fotopoulus at the Hammersmith is amazing. She done my debaulking surgery in 2018 and she got all my cancer. I’m afraid it came back last year but if I was offered to be operated on by Christina I wouldn’t hesitate to say yes. If you go on you tube and put her name in you can see presentations on what surgery she does. Xx

[Cumbrianlass5 in reply to Lesinbeds]

She sounds amazing. Did you have cancers in lymph nodes near heart and aorta? Thanks for your reply.

[Iwillbeatit]

HiI was diagnosed with stage 4 oc in June 2018 I had carbo platin and paclitaxol till November 2018 when I expected to have debulking surgery. But was then told it was on my spleen and liver as well too dangerous to operate incurable. Had chemo till Feb 2019 then avastin till march 2020. All was stable till late last year when cancer started growing again so back onto chemo. CA125 back down from 292to 25 got three more chemos to go. But almost three years on still fighting well. So keep fighting.😁

[Cumbrianlass5 in reply to Iwillbeatit]

So pleased you are still going strong. Your story gives me great hope. Thanks x

[Iwillbeatit]

Just to say cancer is also on my peritoneum omentum bowel aeortic lymph nodes liver and spleen. Good luck stay positive.

[Shrek1609]

Please ask to speak to Professor Gordon Jayson at the Christie for a second opinion. Google him! He’s an amazing guy whom I’m honoured to have as my oncologist.

I’m stage 3c, and wouldn’t be here without him.

He is an absolute legend and I have read of many ladies who have gone to him for second opinions, many of whom had told they were incurable/inoperable and he’s helped.

He’s a leading oncologist for Ovarian, ring his secretary Lisa (doesn’t work Mondays) or email him directly and explain your situation (he’s fabulous at picking up emails and replying himself)

Message me if you need any help with their contact details.

I’m sure he would see you and give you his opinion xx

[ruthg55]

Hi Cumbrianlass, I've just come across your story and wanted to let you know when I had recurrence in 2018 it was also in my para aortic lymph node. (Had full debulking op in 2015 for HGSC Stage 3). Because it was in a difficult/dangerous/tricky spot I was referred to a liver transplant specialist (I'm in Australia) and he agreed to do the operation. This might be something that is also worthwhile asking along with all the other great info provided by others. Fingers crossed all goes well with your scan. xx

[Cumbrianlass5 in reply to ruthg55]

Thanks for getting in touch. Have had three opinions, two at specialist cancer centres. All say it is inoperable. Just trying to treat this as a chronic illness that can be treated but not cured x

[ruthg55]

Thanks for taking time to reply. All the best for nxt treatment xx