im 40 and have had 2 rounds of Carbo and taxol. I had a full surgical removal in September( hysterectomy etc after stage 1c ovarian cyst removal in June.,) during the hysterectomy they found an unexpected mass on my omentum but it was all clear and my ods were good. On taxol and carbol and started chemo Oct 8th. My last scan was in August and it was clear They did a scan last week as I’m unable to have my 3rd round as I’ve neutropenia and it’s revealed a 3 cm tumour on my diaphragm. Again a shock to them like it always is with my case...I’ve seen my oncologist who is perplexed and for me unbelievably unprofessional In not knowing what to do?! The good news and what I’m hanging on to is that my Ca125 markers are coming down, from 80 to 40 since the treatment started . He said I should now change my treatment to cyleax as Carbo and taxol not working and then referred back to the bloods and completely contradicted himself and went back to carrying on with Carbo and taxol!!! I’m desperate, my cancer is a rare clear cell adenocarcinoma. It’s obviously aggressive or so he said. I mean my first diagnosis was borderline and I’ve has 2 single sightings. Should I be riddled if it’s so aggressive? For all we know this tumour on my diaphragm has been growing slowly since sept and is now shrinking as my ca125 has halved???? Does ca125 mean anything! I’ve 2 young kids and just need some hope! Has anyone else got a rare cancer or had this happen? It’s still stage 3c which is something I guess. I have seen professor ledderman at UCHL and am hoping to change. I’m in Ipswich. I hope someone will respond. Nikki
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I’m 49 and also had clear cell and it was stage 3b at diagnosis in February, luckily I’m in remission now but I have asked my oncologist about the aggressive nature of it and she said it’s more that it is unpredictable, sometimes it doesn’t respond to chemo and sometimes it does and never recurs....I think in your case as it seems your oncologist is sounding a bit lost I would definitely consider a second opinion, would it be worth travelling to one of the London hospitals ie royal marsden as they are more likely to have a specialist or an onc with more experience of clear cell?
I know if I recur I would consider transferring my care to the Christie in Manchester as there is more funding for trials etc and more specialists. I’m sure another clear cell lady will have more info for you, but try to stay positive and don’t give up hope, sometimes it’s a case of having to tweak the treatment to your particular case. It’s a tough journey but I’m through the other side and you will soon be there too!!
Hi Nikki, I'm sorry about the bad news. If you've only had 2 treatments, I think it's possibly too early to tell whether it's working or not. It would be unfortunate to abandon Carboplatin so early on, especially with your CA-125 dropping on it.
So I would seek a second opinion, or push for more treatments with carbo/taxol before switching.
Hi Nikki, so sorry to hear this, I think you need a biopsy on the new tumour to determine whether it is oc or a new cancer, as your cat 125 is dropping it could well be something else. That way the oncologist should know exactly which chemo combo would be most suitable to treat it. On a good note you are only part way through your treatment so that should be killing off any rogue cells as well as tackling the new tumour. Keep pushing your oncologist team for answers. Xx
Oh I am so sorry Nikki - it is so scary and I think you need to take a deep breath - then maybe seek a second opinion? There are some wonderful Drs out there but I agree with the other post : it seems so early to change chemos if your CA125 is coming down? I’m not an expert but it sounds as though you need some time to talk it through with a sensitive expert oncologist..
Ps my friend had clear cell and had radiation at the Royal Marsden - they were fantastic for her and she’s free of disease currently. Don’t lose hope just go for the best expert in clear cell!! X
Like everyone else here, really sad life's happenings have brought you to join group but everyone will share their best perspectives/advice.
I was diagnosed stage 3c clear cell in May 2011 after CT scan indicated only stage 1; the pathology report from total abdominal hysterectomy (I was 65) and lymphadectomy (removal of adjacent lymph nodes) showed clear cell in these lymph glands too even though they weren't clearly visible on the scan...my surgeon decided it was 'better to be safe' as he '"just had a hunch about the look of one lymph node". Carbo-taxol 21 day cycle brought the CA125 down to 18.
Recurrence confirmed in Jan 2013 by CA125 shooting up in 3 months from 32 to 110 + CT scan and, for various reasons, I asked my GP to support a second opinion with Professor Christina Fotopoulou at Queen Charlottes/West London Gynae Cancer Centre. Her MTD all felt "it wasn't easy, but they thought possible" to get the tumours out close to the aorta and renal artery (Addenbrookes had felt "too risky" and "morbidity rate from such an operation too high". On Feb 14th 2013, Prof Christina and team got everything out (they are now recognised as a world leading surgical team for ovarian cancer) and I returned to Addenbrookes for dose-dense carbo-taxol with Avastin. No recurrence since, which with clear cell is fantastic. My last CA125 in early Oct showed a rise but the hospital has a new lab and new equipment and CA125 is only an indicator, not an absolute. We will retest in mid January, 3 to 4 months after the rise to check if we have a 'new baseline' or its risen again and a CT scan is needed.
I hope my experiences are positive for you and support other's views that a second opinion is your NHS right and so do ask for it when you are worried/doubtful of the treatment plan by your current team.
Thanks everyone for your advice. They believe this is linked to my initial diagnosis and not a new cancer but worth a question. Lesley are you at addenbrookea as we’ve been given a dr tan as a possibility to see? What does it mean does dense? Unfortunately my wbc are not up enough for my treatment tomorrow so I’m worried I’m not coping with the carbo and taxol and I’ve only had 2 cycles and don’t want more delays. I can’t even kiss my little kids and my sons unwell so I’m now just feeling so low! I really appreciate you all writing to me x
Yes, at first diagnosis, I was referred to Addenbrookes for surgery and to Dr Tan as my oncologist and returned to her after my 'second opinion' surgery in London for chemo. It is she who prescribed 'dose-dense' chemo. This is infusing a total of one-and-a-half times the 'normal' dose of carboplatin + taxol but split into 7 day cycles for three weeks with one week respite. So, the end result is half the normal 21-day cycle dose but infused every week with one week off. I needed an extra week off between cycles 4 and 5. Dose-dense was fairly new in 2013 but I think (check with Dr Tan) many of us coped better with this regime than a full dose every 21 days. Certainly my white cell count held up just above 1.0 all the way through, whereas on the 21-day cycle I had to have bone marrow boosting injections on two occasions to enable me to go to our son's wedding and later to support us to take a week away in the hills on our own for a break.
Dr Tan had (2011 and 2013 when she last treated me) a reputation in Addenbrookes for keeping patients alive longer than other oncologists, but I don't know if that still holds. The only reason I asked for a second opinion was because on recurrence she recommended my treatment purely on her own experience and I wanted a full Multi-Disciplinery Team review and most top teams will always run a patients 'critical' points past their specific range of colleagues (i.e. the MDT for their specialism). She felt surgery too dangerous and wanted to put me straight into chemo and then consider surgery but my logic told me that clear cell is resistant to chemo so how could I be sure the tumours would shrink away from the aorta and renal artery? I knew the 21-day carbo-taxol chemo had been tough to get myself through and the thought of going through this and then face surgery made me ask if there was an alternative by any team to do the surgery first. That is what the MDT at Queen Charlottes with Prof Christina Fotopoulou as lead surgeon was able to do.
My chemo, hence Dr Tan, was all on private medicine and this meant she could prescribe the bone-marrow enhancing injections (your body aches deeply as it gets to work to increase white cell production but it got me to our son's wedding and on our break away) and also a anti-sickness & pain relief called Emend, which, I think is cannabis-based. My surgery was on NHS.
My 'story' was written up on page 7 & 8 in the Autumn 2017 Ovacome newsletter if you are interested in the clinical 'stuff' behind my experience and treatment:-
It's normal to feel like you do mow but be encouraged by the fact that just after 2 chemos your levels of CA 125 have halved.
I'm currently in remission almost 2 years after stopping treatment and having the same type of clear cell cancer is quite something. I did have 25 sessions of radiation so pls ask your oncologist about this too.
Hi Nikki I have clear cell, and have had 2 recurrences, both were in abdo 1 on liver and 1 in abdo lymph nodes, am being treated at addenbrookes and they have done surgery for both of them, with no follow up chemo. Have been 4 years clear now, and yes the onc rid a bit perplexed by that as well as it should have reoccurred more by now... can you ask for further surgery or request a 2nd opinion?
Hi sue. Thanks for responding. I’ve seen prof lederman in london and thank goodness under him now as Ipswich has been awful ( apart from surgery which was excellent) my ca124 is going down over the chemo so went from 24, 21, 19 and now 13 so I’m praying chemo is shrinking the tumour down. They think they can operate also so I’m staying positive. Are you east as I’m in Suffolk?
Gosh thanks all! I’m taking it all in and saw my surgeon today who was more helpful. I’ve managed to see professor Lederman now on dec 11th who is the lead I think in this clear cell stuff. The problem is I’ve tumours coming Quicku but just single sight? So they say that’s rare? Does that make sense? I single in omentum was removed in surgery and then another on diaghamnst still there (3.4cm) x hopeing my levels are up by next week xxx
Hi all just an update. I’ve seen lederman now and am back on chemo so 3 down now and will have a scan 21st Jan to see if it’s shrunk. That will be after 5 chemo. It’s possible to operate at the moment although a bit tricky but it’s one site so that’s good. My ca125 has dropped substantially from 79 after 1st chemo now to 13! It’s consistently dropped weekly so I and they are encouraged. I wondered if anyone had had a tumour and it had gone away or shrunk with Carbo and taxol? We think this diaphram tumour grew between surgery and starting chemo but I’m just hoping as ca125 is going down so much that the chemo is working. X
Hi Nikki, wondered how you were getting on, so pleased to hear you have a plan sorted & are getting good care now!!! I can’t answer your question, but so pleased ca125 is going the right way, hope this is a good sign & sure it is!!!
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