hello all. So after finishing taxol and carbo chemo for Clear cell adeneacarcinoma i had my scan results. Waiting for an hour and a half to see prof Jonathon Lederman and UCLH I was in a complete state as you can imagine! Anyway, he said he had lots tell me (ominous) but the good news is that the scan showed the tumour on my diaphragm to have melted away and only barely visible! However, that’s not all... (help…) I had the potential of surgery so my tumour samples from Ipswich (my original hospital) were taken and looked at the UCLH Pathology team and it turns out I DON’T HAVE CLEAR CELL ADENECARCINOMA! Ive a GERM CELL which is entirely curable! 90% CURABLE compared to very different odds. I nearly fell off my seat when he said these words, He told me this has never happened where pathology is wrong and I’ve been treated with the wrong chemo but by some miracle its worked! My life, prognosis, everything has changed and im so shocked and of course happy! I’ve been looking at my kids thinking I may just get to their GCSE’s, I will hear my sons voice break, I may just get them to Uni! I don’t really know how to feel apart from relief and gratitude. Im Buddhist and have chanted each and every day… “I will live a long and happy life, I will be a great grandmother to mimi and otto’s children, ill be a wife to martin for as long as we shall live, I will beat this with grace and ease, I will fight this with grace and ease, I am clear as the light, I will be the one that survives…” I truly believe in a positive attitude and how it can change your path! Its not over for me though and now
Ive now got to see a germ cell expert at Barts who deals with testicular cancer (germ cell is the same treatment) and I will need yet MORE treatment. The blood markers ie CA125 are not as relevant apparently in germ cell so I now have new markers which are only slightly raised which tells them i'll need some sort of treatment…ie there is some activity… Ive used the cold cap the whole way and its worked so the prospect of yet more chemo is daunting and i can't help feel angry at Ipswich forthrough a gruelling 6 months of the wrong chemo...Anyway, Just wanted to put some very strange and good news and wondered if anyone has a germ cell and can tell me about treatment!?
Sending healing vibes and positivity to everyone!!!
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NIKKibailie
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Congratulations on getting most of your life back!
What a drag to have a huge pathology mistake like that. What does one do about it? Does someone red flag that lab? That’s an enormous error with enormous ramifications for you...
In the meantime though. Enjoy your reprieve, get back on the horse and get better soon.
Wow! What a turn up for the books!! I can’t even begin to imagine how you are feeling right now. I hope your referral to the specialist team comes through quickly and you can get on with finishing your recovery, and more importantly, living your life.
Congratulations on your good news - that is amazing! So happy for you and wishing you all the best for your upcoming treatment. I love your chant too! With very best wishes, Mel xxx
Fantastic news, although it would have been good if it was right the first time, just as well you were referred to uclh Great Hospital, good luck with your next treatment x
Wow! Good news you’ve responded to the treatment even though it was wrong, strange things afoot there but something worked. The wrong diagnosis really isn’t good but at least they’ve told you and they have a plan in place going forward.
Stunning photo, keep your positive approach to things in general and keep as well as you possibly can be, thank you for sharing ❤️Xx Jane
Absolutely wonderful news Nikkie and such a gorgeous photo of you and your girl! You look so healthy and happy and I’m sure the next stage will be a walk in the park after all the uncertainty and misdiagnosis!
Your positive attitude has without doubt helped you, so keep smiling and do keep us posted with your next stage of treatment, but it all sounds really positive, we’ll done 💖
I too had a change of diagnosis. I had 6 rounds of chemo which significantly reduced the tumour. Then had second opinion at RMH and biopsy sample reanalysed and found to have high grade serous. Much more treatable and have since had the big op, 3 more rounds of chemo and a year of Avastin. RMH said first diagnosis was understandable but questions should have been asked because first type usually affects much younger people. Now tumour has been found in my bladder which on analysis was diagnosed as being of bladder type. My urologist and I were dubious about this. It has now been reappraised and after yet another multidisciplinary team meeting they are sure it is of ovarian type! My clinical nurse says pathology is not an exact science. It does seem so. This is at a third hospital who did my op and subsequent chemo and I have completed faith in them apart from pathology reports. They are apparently done in Cambridge. You think lightning doesn't strike twice! I see my lovely oncologist tomorrow to discuss my options.
I had treatment for germ cell ovarian cancer 9 months ago. I’m not sure if treatment varies depending on what kind of germ cell - mine was a yolk sac. I had BEP chemo which is Bleomycin, Etoposide and Cisplatin for 3 cycles. You spend 3 days in hospital at the beginning of the first cycle, then once weekly chemo for another 2 weeks, then start again for the next cycle. You do lose your hair unfortunately- the cold cap makes no difference. I progressively became more nauseous but otherwise symptoms weren’t too bad ... neuropathy in fingers and toes, fatigue and a funny taste in your mouth. I am under a consultant at Barts too. There aren’t too many of us with germ cell so happy to help with any other questions.
Hey! Never go on this anymore so nice that I did! I’m on a germ cell group on Facebook and know there are not many of us! I’m having a nightmare as I was treated for 6 months with the wrong chemo so am now undergoing 3 cycles of EP, then I’m having high dose chemo in August and a stem cell transplant. I’m under sekhl at imperial. As they don’t know anyone who has been treated wrongly for so long, there throwing the book at me. Had chemo last night, ( only 1 night with EP) and threw up continuously for the entire night! grim! Are you under shamash? I was with him first then moved. Would love to stay in touch x
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Clear cell scan all clear but still need chemo ?
Bleomycin, etopocide and cisplatin
Tumour markers
