Needing to hear some encouraging stories about stage 4 inoperable OC

[Littlefluffycloud]

Hello, everyone,

This is my first post here although I’ve been reading everyone’s experiences for a few months. I have HG epithelial serous carcinoma OC stage IVa and had pleural effusion in the lungs and ascites which have both been drained and haven’t so far returned. I was diagnosed in January and have had 6 carbo/taxol which i responded well to. Unfortunately the surgery was attempted after 3 and now after 6 they Fuad keyhole surgery to see if the full op is possible and it is not. I’m devastated to not have the surgery as in my head that might have bought me 5 years time.

I really want to hear some encouraging stories about people who have not had surgery and are doing ok. I’m told next steps are maintenance either parp or something else. I’ve got the appointment in 2 1/2 weeks to find out what’s next.

mum being treated at Bart’s in London. They are great but I’m wondering if there are other hospitals that do any more cutting edge treatment than Bart’s and I don’t have a clue about asking to move/getting a second opinion.

Any help would be appreciated. I really want to see my youngest two to 18 so I need 6 years at least!

My CA 125 has gone from 850 to 26 after chemo, and I am feeling really good, so much better than earlier this year.

Thanks for reading. Xx

[Tracey1207]

Hi my diagnosis and journey are similar to yourself , stage 4c OC No surgery for me either, they looked and decided it was too wide spread so I am currently on maintenance treatment parp inhibitors which are not easy but after posting on here I’ve got some good tips to help. I’m 7 months into taking them with 3 weekly infusion of avastin. My ca125 started at 14622 yesterday I was 266 😊

The parps are doing their job so fingers crossed we continue

💕💕

[Littlefluffycloud in reply to Tracey1207]

Hi Tracey,

Thanks so much for replying! In what way are the parp inhibitors not easy? I’m hoping to go back to work as financially I will need to by January but my work is quite physical, in a school so not great for staying away from germs.

And the avastin - I thought that was really hard to get on the nhs especially if no surgery was carried out? Or are you in another country?

Also did they give you any idea of prognosis (even wide range)? I know everyone is different but my consultants are very vague when I ask them that sort of thing.

Thanks again for replying

xBee

[Tracey1207 in reply to Littlefluffycloud]

Hi Bee

I’ve found with the Parps my appetite has fallen away and I’ve lost bit weight, the nausea is a problem for me I’m trying different anti sickness meds and one lady suggested milk . I’m ok with fatigue but so many ladies experience trouble with this . I’m in the Uk in the north east . I’ve not been given any idea of prognosis just that I’ve got the parps for 2 years ( fingers crossed ) and the avastin for 15 infusions after that ?? We monitoring my CA125 which started at 14622 and yesterday was 266 😊

Good luck Bee .. keep strong 💕💕

[Littlefluffycloud in reply to Tracey1207]

That’s great that your CA125 has dropped so much. I’ve had terrible nausea and sickness with chemo and lost a lot of weight too, so will probably feel that way on Parps

Wishing you good luck too ♥️

[Motiva in reply to Littlefluffycloud]

Avastin is available on the NHS through the Central Drugs Fund which your oncology team apply for. It is for advanced cancer which you, like me have.

The NGOS in The QE hospital in Gateshead do radical surgery. The Marsden would be closer to you.

Always good to ask for a second opinion as there is variation in treatment plans through different hospitals.

Good CA-125 result,

F x

[Littlefluffycloud in reply to Motiva]

Thank you Motiva, I will ask if avastin is a possibility for me. It seems a lot of people are on it, I read a lot of posts on it being hard to get but they were from 10 years ago! Xx

[Motiva in reply to Littlefluffycloud]

👍

[Tracey1207 in reply to Motiva]

Hi Motiva are you in the QE? I get my treatments here unfortunately not radical enough for me I too have been told/ suggested I speak to the RM but I also was afraid of upsetting my oncologist as his protocol is working . I wanted a greater understanding of the parps which joining this group has given me ..😊

[Motiva in reply to Tracey1207]

Yes I had surgery at the QE and chemo ongoing at the Freeman.

The surgical and medical oncologists I have met so far are all committed to us getting the best outcomes (quality time) and should be realistic about differing techniques available elsewhere. It may be the same answer at the RM but then uou know it is not technically possible or productive by anyone rather than out of the skill set of your own hospital or their protocols.

I am sure your oncologist will be positive about your desire to explore all options and continue to manage your chemo protocol successfully.

I had a second opinion from Dr Susanna Banerjee (medical) at the RM when I was told by a surgeon at the QE that is would be a further 2 weeks before I saw a medical oncologist and then 2 week wait for a chair on the chemo ward following discussion at their MDT. I told them my plan and that RM had agreed to start my chemo that week and then I had a phone consultation and started chemo within the week rather than the four weeks offered. (This was still 11w2d post presentation).

It does feel uncomfortable pushing back against the establishment and questioning your care but it gets easier and you will gain from it.

Good luck,

F x

[Lyndy]

The absolute expert in terms of surgery is Christina Fotopolou at UCH. I dont have personal experience but if I were in your shoes I wouldn’t give up on surgery until she said no.

It’s simple to get a second opinion, you just ask your oncologist to refer you. Be bold and at least go and see her. xx

[Littlefluffycloud in reply to Lyndy]

Thanks for your reply Lyndy. Christina’s name does keep coming up on here! I will ask at my next appointment. I know it’s very silly but I feel like I’m insulting my surgeon by asking for a second opinion! xb

[Lyndy in reply to Littlefluffycloud]

It’s your right to have a second opinion and if he’s a good surgeon he will be interested rather than insulted. Either way it’s your life we are talking about, no time for niceties x

[Boot1947]

Isn’t Christina at Hammersmith Hospital (Imperial Trust)? Deb x

[Lyndy in reply to Boot1947]

I am sure you are right Deb…x

[NewtonEmma1900 in reply to Boot1947]

Yes she is. She did my surgery in March last year.

[RClover in reply to Boot1947]

Christina is at the Hammersmith, I am under the care of Christina. I was diagnosed with stage 4b serous OC in July. My plan is 3 cycles of chemo then debulking surgery then another 3 cycles of chemo. I am a positive person and try to avoid thinking what the future holds. I keep saying to myself ‘I can do this, I can beat this and I’m strong.’ Please everyone keep positive we all can do this.

[Littlefluffycloud in reply to RClover]

Thats very good you are with Christina, she has so many recommendations here! All the best with your treatment, xb

[Beaver54]

Hi Fluffycloud.

I’m currently in the same position as you. I’m stage 1v HGOSC. After 3 rounds of carb/taxol /Avastin I had a further scan. I still had considerable mesentric disease, which they deemed inoperable. I’m continuing with the chemo and they will reassess after the 6th round. I had 5 yesterday. My oncologist has suggested I get a second opinion at this stage. I am looking into the best hospital to approach. she has suggested Birmingham.

Good luck with everything

Bev xx

[Littlefluffycloud in reply to Beaver54]

Thank you Bev. I hope you get a good second opinion and that things change for the better after you’ve had 6 rounds. Good luck with everything too. Xx

[Newbery3]

Hi 🥰 sorry to read your worries, 💯 get a 2nd opinion with Christina! You can get this done privately within a week and the cost is £500. Worth every penny and if in England she will arrange if able to operate for you to be transferred on NHS, she is absolutely amazing and if she can help she will. Don't worry about your oncologist or surgeon as they won't lose any sleep over it! They will support you I'm sure. Please get in touch with her Monday, take control. I am /was stage 4b hgsc and no operation on welsh nhs, now NED and on avastin and parps. I had to pay for the whole thing but best money I've ever spent. Good luck xxx p.s if she can't operate she will advise on best treatment going forward also xxx

[Littlefluffycloud in reply to Newbery3]

Thank you Newbury, I will do this. Do you think it’s best to wait for the results of the biopsy they took during keyhole surgery? I get them on the 18th. Xx

[Rankij11]

This ,I hope will help. I’m stage 1V , inoperable because of mets to liver, which although I responded to frontline, I've never been NED . It makes no sense to go for debulking when you have persisting liver mets . You need them to explain why no debulking for you. Mostly there will be good clinical reasons for this decision. ? So i had frontline and then went on Parp, I am 4.5 years since diagnosis, 3.5 years on Parp . But I am BRCA 2 which helps . I live life as before diagnosis on the Parp . I wouldn't say its trouble free , but if you accept that its a form of chemoand will have side effects , its very doable . Mostly for me ,fatigue and ups and downs with gut , but all manageable and get less with time . You are obviously a lot younger than me and that makes a lot of difference, so i guess if I were you i would absolutely double check on everything,

I really hope you get the anwers you need and a good treatment plan going

Best wishes

Jennifer

[Littlefluffycloud in reply to Rankij11]

Hi Jennifer, your message is very encouraging! Thank you! Excuse my ignorance but why does being BRCA 2 help? I am 51 btw.

They did explain why I can’t have (ultra radical) debulking surgery after I woke up from the op. I was very upset so didn’t manage to come up with all the questions I have now at the time. I have 2 areas that are problematic. I have ‘peppercorn’ spots of cancer in a large percentage of my bowel, too much to remove and have a stoma. A lot in the small intestine. I think they said I would not be able to get any nutrients from food. And also (I’m a bit fuzzy here) I have some in the lesser sac which is too close to major organs/blood vessels to remove. They took a lot of photos and showed me. They can’t tell if some is dead or alive or scar tissue. I don’t know if this will be answered by the biopsy.

I also don’t understand that IF the cancer is dead in that area, why can’t I have debulking surgery in the future to remove all live cancer but leave the dead bits on the inoperable areas? I know this is probably a question for Christina!

And are all the maintenance treatments aiming to keep it at bay and stopping further growth or do they also try to kill it?

So many questions, I’m just venting so not expecting answers to all/any of them! Just trying to get my head around it all! x Bee

[Rankij11 in reply to Littlefluffycloud]

Hi, First Q . If you are BRCA pos , Olaparib is advantageous as the cancer cells already have a gene fault with repair mechanisms . And secondly ,mostly these drugs just delay progression , but i understand there is potential for cure if circumstances are right . I know that bit is a woolly answer . I’m not sure they have been in use long enough to know this . But i had active cancer on my liver and last scan it was difficult to see , amazing . Olaparib was mostly developed with BRCA candidates in mind , but there are other PARPs . Sounds like your surgeons had dilemma on how much benefit surgery would be if they couldn’t be sure of achieving NED , without causing you worse effects ?? But theres many people who have questioned 1ST opinion and gone on to successful surgery . I would if Iwas you !! . Please let us know how things go , I think not knowing answers or having a gameplan is the worst thing ,

Onwards

Jennifer

[Littlefluffycloud in reply to Rankij11]

Hi Jennifer, thanks for the good explanation. That’s so encouraging that the olaparib is working so well for you! I guess they’ll offer me one of the other ones as I’m not BRCA and I don’t think I’m HRD.

Yes that’s exactly what my surgeon said. I believe she is very good but it seems Christina is one of the very best so yes I’m going to try to get a private appointment which my lovely friends have kindly offered to pay for.

I will keep updating,

Xb

[StilCrazy in reply to Littlefluffycloud]

Hi

Best way to explain why surgery is pointless is: imagine dropping a bottle of coarse unground salt into a pot of cooked and drained spaghetti. Could you pick all the coarse salt granules out manually without breaking any of the strands of spaghetti? That's what you're asking the surgeon to do. It is not a viable option when the cancer is attached to sensitive nerves, blood vessels and organs.

Chemo is a more rational approach.

[Littlefluffycloud in reply to StilCrazy]

Thank you for the good visual explanation!

I agree it may not be possible, and will definitely do more chemo if that is what they recommend. I guess what I don’t understand is if the chemo shrinks/ lessens the problem areas and some are dying couldn’t surgery be a possibility later? Or does that not happen? Can they leave dead cancer cells in or do they have to remove those too?

I just want to have a shot at getting 6 more years to get my boys to 18 as I’m a single parent and they really need me. And if that isn’t going to happen I want to have an idea of how long I might aim for so I can plan for their future and live as much good life as I can with them and my girls.

I know it might be considered a negative attitude but I’m a realist. I want to try every thing I can to be around for longer!

All the best, xx

[Newbery3]

[e-mail]. This is email for a referral for Christina Fotopoulou x

[Newbery3]

You need to find out if you are HRD positive. I'm brca negative but hrd+ so was able to get avastin and parps. X huge cwtch 🫂 x

[Littlefluffycloud in reply to Newbery3]

Hi again Newbury, do I need to ask for testing for HRD or might it be already in my notes somewhere? I got tested for BRCA but it was negative. Xx

[Beaver54 in reply to Littlefluffycloud]

Hi again. I didn’t know I’d been tested for HRD, so was surprised when they said I was HRD +. I am BACA negative, which is good news for my daughter but have mutated my own BRACA gene, as I understand it, so I am eligible for PARPS. I’m assuming that HRD testing was done at same time as BRACA. I’m still learning, so can’t be of much help to you, but it sounds as though my Onc wants the best for me by suggesting a second opinion. That’s made it easier in terms of not upsetting her. However having said that, and from what others have said, I wouldn’t worry about it. It’s your life, and they will be used to it in any event xx

[Littlefluffycloud in reply to Beaver54]

Thanks, that is helpful, I’ll look back through my mountains of paperwork to see if there is anything in there! Xx

[Littlefluffycloud in reply to Beaver54]

Have now deep dived into my paperwork (and satisfyingly put loads in recycling!) and found next to my BRCA negative result is something that says GIS Negative (25). I’m thinking this could be to do with HRD? Of course I will ask the team when I get there but if anyone else has made the connection?

[Newbery3 in reply to Littlefluffycloud]

They need to take a sample from your biopsies to test for it, but before that try and get a 2nd opinion x

[Littlefluffycloud in reply to Newbery3]

Thanks again

[Beaver54 in reply to Newbery3]

They snook that bit about HRD in my cliNic letter after my first second consultation. It was at the end of the diagnosis, which I don’t like reading over and over agsin when the send a letter, so I nearly missed it. xx

[Newbery3 in reply to Beaver54]

Very frustrating the whole learn as we go! But the good thing is that you can gave avastin abd parps now too so more ammunition x

[Norelo8]

Hello, I too was told that my cancer was inoperable after a laporoscopy to ascertain the extent of the cancer and if possible proceed to debulking . There was spread onto the small bowel which I was told made progressing the operation too dangerous , like you I was devastated when I woke up after the op to be given this news.

I decided to ask for a second opinion and ,like others on here, contacted Prof Christina Fotopoulou at the QCCH . She’s absolutely wonderful . She agreed to do the operation , initially with a small incision to see what what possible and then to continue to debulking if she felt the complete procedure would be safe , thankfully it was .

I had the op in Jan of this year and am now on the maintenance drugs Avastin and Olaparib .

As others have said, don’t give up .

Wishing you all the very best

Kx

[Littlefluffycloud in reply to Norelo8]

That’s an amazing result! Thank you it’s great to hear such an encouraging story. I will try to contact Christina this week.

Good luck with it, xB

[Flute_7 in reply to Littlefluffycloud]

I just wanted to wish you the best of luck with Christina Fotopoulou. I too went down this route and it didn’t cost me !!!!

My oncologist at the time was trying to find a trial for me. She wrote to Susan Banerjee at the Royal Marsden. I didn’t know who she was writing to and I also wrote to Susan Banerjee but at the same time I asked my oncologist for a copy of my last scan with notes. I sent this in an email to Christina Fotopoulou as I wanted to know if she could operate. She looked at the scan I sent via email and unfortunately couldn’t operate, however whilst she was happy to see me in clinic to discuss, the outcome would be the same and therefore didn’t feel it was fair to charge me for looking at the scan or her written comments.

It may be worth getting a copy of your last scan, emailing it to her and see what she thinks, may be quicker for you to get an opinion that way and then go in to see her if she is happy to operate. Whatever you decide to do, I wish you all the best xx

[PaumicB123]

@hi all comments made me feel better haven't seen oncologist for 6months as they behind I in Stoke 2years since I was diagnosed stage 4hgs pertonal ca25 was 8 then gone to 90 legs swelling rash on legs anyone else experienced these problems with rashes

[Norelo8 in reply to PaumicB123]

Hi Paumic, I have had swelling of my left leg in particular and rashes on both from just above the knees downwards . At my last oncology appointment, a week ago , they took photos of my legs to monitor them but didn’t have a definitive idea of the cause . I’m having Parps and they were mentioned. I expect I may get more idea at my next clinic appointment at the end of the month . I have very sensitive skin so it could be something I’m allergic to , I’ve been taking antihistamines for a month or so and that hasn’t made any difference .

Also would be very interested to hear of others experiences .

[Littlefluffycloud in reply to PaumicB123]

Hi Paumic, I haven’t had any experience of rashes or swelling yet, only the ascities. I hope you find out what’s causing it. It sounds worrying that you haven’t had an appointment in so long. Surely you should be a priority case?

All the best, xb

[PaumicB123 in reply to Littlefluffycloud]

Thankyou we all on journey thinking of you