I wondered if there is anyone in our community who has/is having a similar experience to mine and has any ideas or guidance on next steps.
To summarise, I was diagnosed with a stage 2/3 poorly differentiated Mullerian tumour arising in endometriosis with concurrent Stage 1A LGSOC in the right ovary in May 2022. I underwent radical debulking in June followed by 6 cycles of carboplatin and paclitaxel chemotherapy which finished in November 2022. I had a PET scan in December and was told in January 2023 that I had disease progression and a new tumour in the pelvis. This tumour was biopsied in February and I was told it was the high grade cancer that had progressed and not the low grade one. I have been told my case is unusual as I have 2 different cancers in the same area. The decision was then taken to try more surgery and remove this latest tumour. The team at UCL attempted this February 2023 but were unable to proceed as the tumour is fused to vital blood vessels in the back and removal posed too great a risk to my life. I have since had an MRI to check my suitability for radiotherapy, though this may also be difficult/impossible given the position of the tumour. I have been referred to a hospice for pain relief/ palliative care. I am in clinic this week to find out next steps.
I am 47 and have 2 children aged 10 and 12 and desperately want to get as many more years as I can to spend with them and my husband. I have felt numb since waking up and being told the surgery was not a success. Has anyone in our fabulous community got any ideas/guidance/hope for me?
Laura x
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Peony13
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I haven’t had this experience but just wanted to say that I am sure you must be feeling rattled by this unwanted news but hang on in there, your team will have ideas and now they have a better picture of what’s going on they will be able to create a more bespoke plan for you xx
Hi Peony13, depending what they tell you in clinic this week, might it be worth asking for a second opinion? I don't have any first hand experience but I've read a lot of posts on here by ladies who have been to the specialist hospitals in Manchester or London and been able to receive treatment they had previously been told they couldn't have. Think positive thoughts, there will be something out there for you!
Thanks Kjpip, I really appreciate your kind words. I was thinking about asking for a second opinion. Im already at UCLH so do have access to some of the best specialists but did think I might see if there was anyone at the Marsden who could help too. Thanks again xx
Hi Peony13. I'm so sorry to hear your news. I'm sure the UCLH team are brilliant but if you are looking for a second opinion (even for peace of mind) professor christina fotopoulou at Hammersmith/Queen Charlotte's would be my first call. When I was having my surgery at Queen Charlottes there were patients from all over the country who were having surgery with her, having been first refused by their own surgeon. You can get a referral or have a private consultation I believe. Sending you so many best wishes xx
Thanks so much for your reply Carpediem68. Her name comes up so often I think if I do go for a second opinion, I would try to get an appointment with her. Best wishes to you too xx
You need to contact prof Christina Fotopolou at Queen Charlotte in Hammersmith. The Royal Marsden or The Christies Manchester would not take out my three cancerous lymph nodes one being so close to the renal artery and one was the aorta lymph node. I would ask for a referral immediately to her,:if she can't operate then I think no one can be she is your best option. She successfully took mine out and she said it was difficult as I have the renal arteries (people only have one normally) and do many blood vessels were wrapped around them but she did it. She us an amazing surgeon. If you need more info please message me. Wishing you all the very best.xx
Many thanks win_56. I've been told today we're going for radiotherapy next, but there may be a chance to reassess the decision about surgery then. I will contact Christina Fotopolou too. Very best wishes, Laura
Hi Peony, so sorry to hear this. I am in kind of a similar situation. I was diagnosed HG stage 4b in September 21. I had 3 rounds of chemo (carbo only as had a severe allergic reaction to taxol) debulking surgery and then a further 3 chemo. Like yours my cancer was around major blood vessels and so I was left with some of the tumours left after surgery. I finished chemo and my cancer marker was 17, I then started Avastin but had to stop after 6 months as had symptoms and rising cancer marker. Scan showed some progression so back I’m back on chemo again now. I will have a scan after my next chemo and I’m hoping it will all be positive. I’m feeling well and coping with the chemo so far, though I have had a couple of smaller reactions which they are managing.
I really feel for you, my children are 32, 29, 15 and 13. I’m really hoping that the chemo is working as like you I want as much time with them and my husband as possible.
it’s mentally so hard, I felt I was spiralling into a black hole with anxiety so my Dr prescribed Mirtazapine which I take at night, they are a anti anxiety med, they have been a life saver for me and they help me drift off to sleep without feeling groggy in the morning and have definitely helped me cope.
All we can do is keep going, one day at a time. There are so many different treatments we can try and new ones coming all the time.
Wishing you all the very best with everything you are going through. I’m happy to chat with you a bit more privately if you want to.
Hi J, thank you so much for your empathetic and positive reply and for the offer of further private discussion, I’d like that. I was told I am chemo resistant, so I’m not sure what options I have there. I’m hopeful there is another combination they can try. I will try anything! I really hope your treatment goes as well as possible and you too have more time with your family. Thanks also for telling me about Mirtazapine, I will investigate. Sending love, Laura x
Do go for that second opinion at Marsden. I see Dr Angela George there but Dr Christina Fotopolous (sp.?) is also very highly spoken of. With teal sister good wishes. Emma x
I’m so sorry to hear your tumour wasn’t operable. I was told the same as my tumour was wrapped round my small bowel. My oncologist said they would be able to shrink it back with chemo. I have had my ups and downs but I’m still here three years on.
Wishing you all the luck in the world and the strength and positivity to get through this.
Hi I’m so sorry about your plight, especially your concern for your children. There’s a new drug in the US for platinum resistant people. It’s called Elahere. You have to be tested for an alpha folate receptor. There might be a trial in the UK or maybe your oncologist can get it for compassionate use?
Thanks delia2, I have also read about this drug and mentioned it today at my appointment. We're going with radiotherapy first and then may explore this or something similar apparently. Many best wishes to you and thanks so much for replying x
I was first diagnosed with OVCA in 2008. I had a complete TAH followed by six rounds of Carbo Taxol. All was clear until 2014 when my CA 125 suddenly shot up. A scan showed that my OVCA had spread to my Psoas muscle in my lower back, and it was in the form of a tumor. After much consultation, it was decided that the tumor was too near a major nerve in my leg and surgery could impair my walking or give me a drop foot. The risks were too great. I proceeded to have 30 rounds of radiation plus some chemo to follow. I also started on maintenance Avastin to keep the tumor from growing. I was quite stable till 2019 and had to go through a similar chemo session and then restart of Avastin. The tumors shrunk. Maybe there’s a way that they can put you on a maintenance or immuno therapy that will starve your tumors? Praying for you.
Hi Leniko, you've done so well considering what a tough journey, you've had. I have been told today that I will start radiotherapy in 6 weeks and then they will reassess. Your experience gives me hope, so thank you very much for replying. Laura x
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