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[Guilane]

Hi All, I am stage IV serous ovarian cancer with spread to lymph nodes in my neck and chest, diagnosed in April 2021. I am 75. My onc said neck and chest were inoperable so no point in going through abdominal surgery because of recovery time and quality of life prospects. She gave me two to three years. Well, I’ve had one year now with chemo and I’m on maintenance of Avastin and Olaparib. Should I have insisted on surgery? Does anyone without surgery survive for any length of time? I would be very grateful to hear from you lovely ladies. X

[Newbie_2020]

At times, surgeries are not possible and your team/surgeon are the best to advise you about it. I think that you are on the right track in terms of treatment. Both Olaparib and Avastin have done wonders for many and kept the cancer at bay.I hope they'll make the same wonders for you and you'll have great quality of life, too. Keep positive and strong x

[Lyndy]

Hi GuilaneI am going to suggest that you get a second opinion. None of us can really give you the low down on your particular cancer but the explanation for not giving you debulking seems a bit odd to me.

Decisions about surgery were affected by covid during this period and I have a suspicion that your age might have played into this too.

Debulking allows chemo to be more effective…and it seems that chemo has reduced your cancer? So it would be a good time to ask again if they will review the decision xx

[Lovedogs41]

Hi I agree with Lyndy to definitely seek a second and even third opinion if necessary.I believe we shouldn’t leave any stone unturned with oc.

Best of luck to you xx

[Guilane in reply to Lovedogs41]

Thank you ladies. Yes my tumours were reduced by the chemo but are now just stable on my last scan. My next contact with my onc is a telephone appointment on 20th June. I do worry that my quality of life over the past year has been wonderful, apart from covid restrictions I’ve been able to carry on the same as before my diagnosis. I read so many stories where the results of extensive surgery do seem to be debilitating. That’s what makes me wonder if she is right. A short time of normal life as opposed to more time with a reduced quality of life. I just don’t know. X

[delia2 in reply to Guilane]

Hi. As long as you feel good with that decision that’s the main thing. However I don’t think debulking surgery would necessarily affect your quality of life unless it involved a stoma or there was some complication. I found surgery easier than chemo myself. You don’t mention whether you are BRCA positive or HRD positive? If so the Olaparib and Avastin could clear up your cancer in the best case scenario.

[Guilane in reply to delia2]

Thank you Delia 2. I’m HRD positive. Apart from saying the tumours in my neck and chest were inoperable my onc emphasised that until the surgeons were in there they wouldn’t know how extensive the surgery would need to be so it could involve a stoma and also she said recovery could be a year. This all made me respect her decision and be very apprehensive concerning surgery, though I have no other health issues and have always been healthy. X

[Tillymint61 in reply to Guilane]

Hi there. It occurs to me reading your post you need a full on discussion with your oncologist about how and why they come to the descions they have this far. Ask them to be 'open and honest with you and ask direct questions. I really think some oncologist do find it really hard to give specific answers because there experience is 'every patient is unique' and there responses unique.Write your questions down before hand. (I think this is even more vital on a telephone consult.)

You may feel in a better position to make your descions based on more understanding.

Many people would choose quality of life over quantity but it is such a personal choice . I wish you well fir your future.x

[Rankij11 in reply to Guilane]

They have to balance morbidity v benefit . Sometimes we have to accept in our best interests

Hope all keeps going well for you

Jennifer

[Rankij11]

April 2019, Stage 1V , extensive mets to liver . Ist line chemo with a lot of interruptions , finished end of Nov 2019 . Olaparib started Jan 2020 , am still chugging along . Well and happy for now 🤞🤞🤞🤞🤞🤞. Keep going , just live your best life and there’s always hope Jennifer

[Morini]

Hi, I was declined for surgery at 2 different hospitals MDTs because of enlarged lymph nodes in my chest and Iwas 58. (Because they came up during chemo my Onc was convinced they were not related to cancer so had them biopsied and they weren't cancerous so in the end I had debulking surgery.)

But it seems to be a standard practice maybe? Having said that I am unsure why, I was lucky, my surgery was relatively straightforward but 4 months on I am feeling well recovered but I guess that's not guaranteed.

Do ask for a 2nd opinion if you think it would help. xx

[Gartenfee]

Dear Guilane. I was 61, when I had two abdominal surgeries to remove the tumors, Stage III . It was impossible. All my organs including ovaries are still in my abdomen.Like you I could not understand.

Having asked I got the answer: No advantage because they could not remove all tumors, thus there will be no advantage regarding survival.

Meanwhile - three years later - I have had two Chemos, one year in Olaparib, one year in Avastin and now I am in Radiotherapy. Apart from the time I was in therapy I have a very good lifequality. I enjoy cycling, walking, cooking, singing, travelling with train and bicycle , gardening, voluntary activities - in short a full active life, with some disabilitities.

I even do this with a stoma.

So please, as long as you feel good, enjoy life, avoid hospitals if there is not a chance to get you tumorfree. That's my opinion. Take Care and good luck , greetings from Germany

.

[SUE7777]

Hi Guilane I agree that you need a full conversation with your oncologist and perhaps a 2nd opinion and I would also record the conversation as sometimes you may miss some point that is being made. All the best Sue xx

[Cumbrianlass5]

Your situation is exactly the same as mine. I was diagnosed in August, 2020, had carbo/taxol chemo but was told I was inoperable because of cancers in lymph nodes near aorta. Got 2nd and 3rd opinions, from Christies and Freeman, and all agreed an operation was too risky. I could not insist on surgery when all the specialists said no. However, perhaps if you got a second opinion it might answer some of your questions and worries.I am 67 . I am BRCA negative and so was then on niraparib. It held the cancers at bay for 9 months but then stopped working. I finish carbo/caelyx second line chemo in June and a recent scan showed no change in cancers in ovaries and shrinkage of cancers in all lymph nodes, some by a half, which was very welcome news.

I feel well and positive, and glad to still be here. I have had no prognosis but my onc seems to think I will respond to more chemo down the line. Both I and my onc are looking for possible trials after that.

I cannot answer your question about how long you or I will live but there are options to keep going and keep well. I just try to enjoy every day as it arrives. Best wishes x

[win_56 in reply to Cumbrianlass5]

Hi I had the same. 3 cancerous lymph nodes in front of lumbar and one being the aorta. My surgeon deemed to risky to take out and second and third opinion from Christie Nanchestery and Royal Marsden said the same. I was given chemo carbo and Caelyx to blast them. I had a good response but not clear so was given Rubraca parb which kept them stable for a year but they started to grow again. My onc said back to chemo but I said I wanted a another opinioy from Prof C at Queeny Charlotte hospital. She successfully removed all three although it was deemed not easy. She says no residual disease left. I've just had six cycles if carbo/ gemzar to mop up and scan next week. I'm but from London but it was worth it to travel from Birmingham and get them out. I know it's your decision but I just wanted to let you know that it's always worth getting more opinions. Good luck.x

[Guilane in reply to win_56]

Thank you win_56 it’s so good to hear that removal is possible. Good luck with your scan. Thank you everyone for your very valuable and informative replies. There is certainly a lot to think about and I won’t now be sitting back and doing as I’m told. I need to be a lot more proactive with this. I was when I needed to get the PARP, so I will be now. Thank you. X

[Amerthist]

I was diagnosed in August 2017 with carsinosarcoma 3c. Due to the spread of nodules of the cancer the surgeon did not think it possible to get it all and felt I would gain nothing and may even be worse off having surgery.. I had weekly chemo for 18 weeks. I had a good response to the chemo and have remained stable since. I have three monthly scans. So far i have been pretty well. Best wishes Anne.

[Guilane in reply to Amerthist]

Thank you Anne, it’s good to hear from someone who’s still here after that length of time without surgery. I must admit I was disappointed when my onc said the tumours were stable rather than shrinking. Sounds as though stable is no bad thing. Long May we continue. Thank you. Gill.