Not suitable for surgery

[Guilane]

Hi very helpful and knowledgeable ladies, I’m stage 1V ovarian cancer diagnosed in April 2021. My cancer is metastatic, in my abdomen , neck and chest and my onc said it’s inoperable. I’ve had 6 rounds of chemo and am now on three weekly Avastin and daily Olaparib. I read lots of success stories but you all seem to have had debulking surgery. Is there anyone out there like me? X

[Lovedogs41]

Hi there have you thought about getting a second opinion?

[Guilane in reply to Lovedogs41]

Thank you for your reply. She said she could give me two to three years and she didn’t want one of those years to be taken up by recovery in view of my age, 75, and the possible extent of surgery, considering the surgeons wouldn’t know what they would find until they performed the op. And she definitely said my neck and chest are inoperable. So I believed her. X

[Guilane in reply to Lovedogs41]

Yes thank you Lovedogs I have. I’ve a CT scan coming up soon so I’m going to wait and see what’s happening when I get the results of that. I’ll have a face to face appointment with her and see what she has to say. I think I need a bit more info on the reason for her no surgery decision. I feel I didn’t ask enough questions at the time. X

[Lizzieanne]

My recurrence diagnosed in May 2020 is metastic. In lymph nodes in chest and just above my abdomen, also had bone mets. Apparently not in major organs so no surgery for me. Have had six chenos od taxol and carbo which seems to have cleared bone mets, then on Rucarapib for 6 months but it didnt do anything, then had six more chemo of carboplatin only finishing last day of December. Have regular PET scans, other scans will not highlight the cancer. Some nodes have now sgphrunk by 50% and are stable one has grown by 1mm which oncologist not worried about. I said I didnt want to be given a time of how long I have. Feel pretty good at moment. I am very interested in learning more about cyberknife which won't cure but but wld perhaps kill the cells in lymph nodes and not deplete my body like chemo. Im in bury head at moment as will have another scan in May and if its active again my oncologist said they can give me more chemo. I dont have an answer for you but felt that maybe my OC similar to yours. I did post a link with info about the cyberknife willsee if I can find it again for you. Think you obviously have to meet a certain criteria. Keep strong.

[Guilane in reply to Lizzieanne]

Thank you for your reply Lizzieanne. I’m so pleased to hear that you’re responding to the further treatment. Thank you for the link and the info on cyberknife and its use on lymph nodes, I’ve never even heard of it. I’ve read what’s in the link and also googled it. I’ll research a bit more and definitely ask myonc if she has any thoughts on it. I am also feeling good at the moment and my quality of life is good so maybe my onc was right in not putting me through surgery.

Onwards and upwards eh. X

[Cher96 in reply to Guilane]

Hi Guilane I haven’t met two oc that are exactly alike , but somewhat similar. I was given 4 rounds of carbo/taxol prior to surgery in order to reduce the cancer. The cat scan looked promising and we went ahead with the surgery. As it turned out the surgeon couldn’t get all of the cancer so the debulking was considered sub optimal. Or inoperable. Had 3 more rounds of carbo/taxol and then Avastin. Ca 125 is at its all time high now. What was the point of the surgery? The cat scan didn’t show the extent of the cancer and perhaps I would have been better off with just chemo and no surgery. I’m also in my seventies. Good luck. Sometimes surgery isn’t the answer to quality of life.

Cher96

[Guilane in reply to Cher96]

Thank you for your reply, I’m so sorry to hear that your surgery didn’t have a positive outcome. My onc did very much stress that the surgeons couldn’t predict the extent of any surgery nor how much they would be able to remove until they were in there and that did have a big impact on my acceptance of her advice not to have the surgery. I do hope you recover, or are recovered, from your surgery.

Thank you so much, your reply has really helped me. I’m only sorry I can’t reciprocate except for you to know that I’m thinking of you and hope they can take some positive action for you now. Take care. X

[Cher96 in reply to Guilane]

Thanks Guilane

[Loorunner in reply to Lizzieanne]

This was so useful to read - thank you.

[Lizzieanne]

royalmarsden.nhs.uk search cyberknife

[Notage]

A second opinion doesn't do any harm. Even if they come back and say the same it will give you some reassurance rather than wondering about the what ifs. They new CT scan would probably be helpful to go with the 2nd opinion referral so they have an up to date picture. I'd also ask to see the 2nd opinion Dr rather than a paperwork exercise between clinicians. Also very much depends on what you want treatment and/or quality of life wise. You need to have informed choice (with quality written information) of ALL the options (inc 2nd opinion) so you can consider them and then make a decision. Wishing you well and the outcome you seek.x

[Guilane in reply to Notage]

Thank you. Now I’m reading through lots of posts and hearing the problems others seem to be facing I’m wondering if maybe my onc was right. All through this, except for during chemo, I have felt perfectly well and if I didn’t know I was stage 4, apart from feeling tired, I wouldn’t know there was anything wrong with me. So much to think about. X

[Rankij11]

Hi there Diagnosed April 2019 , stage 1V , metastasis to liver . The liver involvement was extensive . I was 73 at the time . Responded well to front line chemo , and the option for surgery was raised during this time , but after discussion with surgeon and onc, it was decided between us that surgery would not give any outcome benefits. So really saying that debilitating surgery would not impact on survival. I did question this a bit , as you say everyone else seems to have surgery , but I trusted my surgeon as I had worked with him at some point . He basically was saying enjoy your life,feeling well ,for however long that might be . BUT then we came to the benefits of PARPS . Luckily I turned out to be BRCA 2 +(I suppose you might say unlucky as wouldn’t have the alien in the first place )and Olaparib has worked well for me keeping me stable for 2+ years , and able to live a mostly normal life . I think your ONC is saying, live with your cancer , with treatment, for your best life .

But of course lots of people have gone for second opinions , with varying outcomes and maybe that could be better for you . We are all unique in this blooming disease !

Really feeling for you as I have been there

Jennifer

[Guilane in reply to Rankij11]

Oh Jennifer, thank you so much, you are my only reply from someone who hasn’t had surgery! “Live with your cancer, with treatment, for your best life” is the best advice you could have given me. I have found that, except for during chemo, I am able to live a completely normal life and, if I didn’t know I had cancer, except for a bit of tiredness, I wouldn’t know I had it. Maybe my onc, like yours, made the right decision for me. I’m going to stop worrying for now and see what my scan shows up. Thank you. Gill X

[Rankij11 in reply to Guilane]

I will be hoping for the best for you with scan and Olaparib . We all want that alien removed I think , but I’m giving mine a bit of house room so long as he /she keeps within bounds !! We just did covid together , not too badly really . Seriously though , wishing you all positive things.Jennifer

[Cbyrdie]

Any option for Keytruda or Keytruda/Lenvima. Im in US and have been on the combination for 8 months. Stage IV Lymph nodes in chest, and groin. Has kept me kind of stable with some going back to normal and very minimal progression.

[Guilane in reply to Cbyrdie]

Thank you Cbyrdie. It seems to be available here but not, at the moment, for ovarian cancer. I’ll keep investigating. X

[Cbyrdie]

It became available for ovarian as the combination with Lenvima in July 2021 here in the states, if nothing else it has kept my progression minimal. 🤞🏻It becomes available to you.