Hi
I have Clear Cell Ovarian Cancer, awaiting full histology and staging.
I was told this by a McM Nurse at the bedside 2 days after my TAHBO, with surgeon not present.
Going mad trying to understand it and fearing the worst, reading all the personal chat I can that relates to this rare subtype, thank you to the ladies who've been posting about it and hello x
Hi Emcee71 I too was diagnosed with clear cell OC Sept 22. Mine was an unexpected diagnosis as they thought I had fibroids. I was told 3 weeks after BSOTAH but by my surgeon. I was lucky as I was staged 1a although this has since been changed to Stage 1a (not fully staged) as no lymph nodes were taken for testing during operation. Before diagnosis my CA125 was 76 after op it was 8. I was advised to have 6 rounds of carbo/taxol chemo because it was clear cell irrelevant of the early stage. I finished chemo end of Jan 23 & have been NED since! I have 3 monthly checkups with gynae consultant along with CA125 blood tests my latest being 7.2. I feel well and my hair has grown back! I hope this gives you a lift after your diagnosis as I know I was frantically reading anybody’s story that was clear cell looking for a good outcome.
No doubt you will have your staging and treatment plan soon and you can begin your journey to kick this little 💩 to the kerb.
Sending you strength & best wishes 🥰 Jen x
Hello SuffolkJen and thank you for replying. I'm sorry you have this awful thing but sooo glad you're feeling well and yes it is super heartening to hear about you!!
It's also interesting to read that you were staged at 1a, albeit then 'not fully staged'
I say this because I have probably stupidly summised some stuff that may not be true. I have been thinking that because it is clear cell, and it is a type of epithelial OC, my tumour must have been growing *from* the ovary/lining not *inside* the ovary. So by default, it would be 'surface involvement'... which is staged at 1C (then a number depending on other factors). My cyst was 15cm x 10 x 12 or something though, maybe yours was much smaller. Do you happen to know what 'surface involvement' means?
In my situation a nurse told 'me' it is Clear Cell OC in response to an innocent question actually by *my brother* at the bedside post op - 'what type of ovarian cancer does Emily have?'. IMO this question should not have been answered without turning to me to ask if I wanted this information, as I had not asked the question and deffo not without a surgeon present. It wasn't until a few days after my op and a few days before I got COVID 🤧that I thought to look into what CCOC was ... FFS. Anyway, I have to be patient I guess. Tomorrow will be 4 weeks since my op so I certainly hope to hear back from them. I was told I'd get a call last Friday but almost don't want to chase in case the results are bad....
Again thank you so much for replying, and 🤞🍀💓here's to NED for you and us all x
Hi Emcee71. I was told that my cancer was contained completely within the right ovary, I vaguely remember a measurement of 7cm being given. My oncologist told me that it was ‘removed, gone’ after a CT scan and CA125 blood test showing 8, 4 weeks after op and before any chemo. So in effect I was NED before chemo but it was strongly advised to have chemo to ‘mop up’ because it was clear cell. The flip side of this is chemo not as effective for CC as for other OC. I asked my oncologist if I was his wife what would he tell me to do & he said without doubt have chemo.
I only found out I wasn’t fully staged a couple of months ago which came as a shock to me (2nd shock in a year! 🤣). When I spoke to my gynae about it she said it was because of the unexpected diagnosis & that everything looked like a fibroid during op that other tests didn’t happen. I was opened up for op & the ovary/cancer was removed in tact so at least that’s something 🤷🏻♀️. I’m still classed as stage 1a and everything since then is backing it up 🤞. I don’t know what surface involvement means because I didn’t have it but I’m sure many of the lovely ladies on here will be able to explain it.
I hope you get the best possible news when you hear from your surgeon and the sooner you get cracking on whatever treatment they advise the sooner you’ll be through the tunnel & out the other side.
Please let me know how you get on I wish the very best outcome for you 🥰 Jen xx
Thank you Jen, all that is so useful to know. And great question to ask your oncologist, I'm taking that one in case I need it! x
Hi I was like Suffolk Jen and told I had fibroids so it came has a shock when I was diagonised with Clear Cell stage 1c3 mixed histology .I had surgery in November 21 and 6 rounds off carbo/taxon which I finished in june 22.My ca125 was 600 before surgery now its 7and I've been on maintance since sept22and have bloods done once every 2months.
I found waiting for results very hard but now I feel really well and I hope your journey goes the same.
Sending hugs Jaynex
Hello Jayne, thank you massively for replying. As with Jen, it is very encouraging to know you are doing so well, especially 2 years post surgery and I am so happy for you.
Did you feel very scared because it was 1c3? Can I ask what were the factors - I have asked Jen this but did they say 'surface involvement' to you and do you know what that means? I thought it meant growing from the ovary not inside it, but then doesn't epithelial by default mean growing from the lining/surface of the ovary? Sorry if I'm confusing people here, I just want to understand...
How have you found the maintenance treatment? Assume this was as they found something else / you have a platinum resistant histology? TBH I'm prepared for some shockers with the chemo although hoping to be able to do bits of paid work throughout, but I'm self employed and am worried I'm going to lose my home should I have a recurrence and be on maintenance therapy
Sorry for more questions, and I do appreciate everybody's OC is different as is our experience of treatments
I hope you feel well and have a good week and thanks again for being caring and replying, it means so much to connect
Emily X
Hi Emily. It must be so hard having just a general diagnosis and no information. As far as working goes during treatment, after the first cycle you will be able to map out when you feel bad and when you don’t. For most people it’s the first week but for me it was days 5-11. I was okay the rest of the time unless I had anemia. By the last two cycles I was pretty weak and it took a while to rebuild my strength. So it depends what kind of work you do but you should be able to work some of the time. Good luck! Xx
Thank you very much! Yes, I will need to see where I'm at won't I. I work from home, it's quick thinking wordery type stuff with lots of decision making and tiring so goodness knows, but hopefully they can be flexible somehow. I I felt bloody awful for a good couple of months leading up to surgery, sick and utterly floored with exhaustion but still managed to work up to a few days before the date. I'm sure chemo brain and chemo tired / sick / painful will make that seem like a walk in the park but I live in hope! x
HiIt just so reminds me off how I was 2 years ago December 21 I struggled waiting for results it took 7 weeks for my results to come through hopefully yours won't be long.
I was shocked when the results did come cos told it was probably a fibroid to Clear Cell stage 1c3 Oc but why my results were late was due to the Clear Cell mixed with HGSC .
Sorry I'm not very good with the medical terms but was told it was all in the left ovary and the cyst was 23cm.
I started taking Niraparib in Sept 22 was told I may not tolerate it well there were a few bumps along the way for the first few weeks but that was all and at the moment I feel really well on it.
Hope this has helped and you soon get a diagnosis .
Sending positive vibes to you xJayne
I was diagnosed 2020 with Epithelial clear Cell stage 2, then reoccurrence last April, now stage 2b, had 6xChemo, 18x Immunotherapy
Hi BDBird oddly I replied to you but I can't see it! I'm sorry x will reply again soon
Sorry, I sent before finishing by mistake as I was in hospital🤦🏼♀️🙈I finished the 18 Avastin/Bevacizumab 2 weeks ago, & literally just had my end-of-treatment/3 mnth follow-up, but unfortunately symptoms have changed & increased, so now have urgent scan 🤞🤞before Christmas🙏,with follow-up early January. Not quite the Xmas present I was hoping for🙄🙄
Oh my love, I'm so sorry to hear this. I'm glad you can be connected to us women while you are in hospital. I hope despite this worry and having an unimaginable wait over Christmas that you are surrounded by goodwill and affection in the meantime. You certainly have it coming from me X
I had mixed clear cell and endometrioid, stage Ic (and a side of endometrial cancer stage Ia). I had carboplatin alone, because I have a bad allergy history and Taxol is high risk for allergic reactions. That was 2006! 17 years, no recurrence.
My goodness SopSinger, that is amazing! I want to thank you for still being on here to give us women hope, as I imagine that many just don't want to be reminded of their experience so leave the forums (which I 100pc respect).
Do you remember which kind of 1C it was?
So glad for you ! xx
This might help. I was diagnosed with stage 3 c2 clear cell ovarian cancer in 2014. April will be 10 yrs cancer free with no reoccurring disease. I had interperitinel chemotherapy with IV chemo. 18 rounds in 14 weeks. Lost my hair no biggie, I wore a ball cap. It's only hair and it's empowering. Ask for interperitinel chemo. Best wishes. Liz
Wow Liz! that's amazzzzing. Not sure we have the interpetinel option here in the UK but will certainly ask.
Agree with you about the hair (though understand why other women would be upset/traumatized). I'll go bald in exchange for life any day. In fact, I was thinking about going pixie cut before Christmas, so it's not so much of a shock for my niece and nephew. Their other aunt had breast cancer so lost hair but had always been very cropped. My hairdresser does marathons for cancer having lost his dad to it, so I know he will love to do this for me. If I do I will post a before and after maybe! So happy for you Liz and thanks for posting, its very encouraging x
Just for info in your ovacom news letter someone mentioned it does mention that though it isn't a standard practice, that interperitinel Chemo is an option over radiation treatments. You might read the article on clear cell. For info my mass was 2 pounds, I had my female organs removed, colon scrapped cancer was attached, appendix removed ingulfed in cancer, 15 lymph nodes removed cancer in 2. With the interperitinel chemo I helps to prevent reaccurrance, my doc says 5 yrs. I'm coming up April on 10. My CA 125, is a 7 usually.though this is not always a great marker for clear cell. Liz
Exactly, it's only hair. Also a tip after chemo they usually give you a shot to help your bones the day of shot take Claritin no D, then take for next 4 to 5 days. It helps with pain in joints. Also make sure Dr gives you something to take edge off for nerves. Even if don't use, so you have it. It usually has a anti sick med in it. If you wake up and don't feel right, take it , it will keep you from feeling sick all day. Usually by day 3 I felt pretty good. Best wishes Liz.
Hey BDBird
Thank you for replying. I'm sorry you got restaged and had a recurrence. Re immunotherapy, do you mind me asking how that came about? I'm guessing some histologies don't respond and some do....
I'm not sure how experienced my hospital (Maidstone/Tunbridge Wells) is treating CCOC and I know I'm getting ahead of myself given I am only 3.5 weeks post op and not doing the standard chemo yet but I can't help worry based on some odd things the consultant and surgeon said which IMO have been rather misleading. I guess they didn't expect to find a rare subtype (or something)
Thank you for any info you can share and I understand if you don't want to share it
Have a good day
Emily x
Hi Emily, I was clear cell too and the wait for the staging appointment is a bit of a bind; I had quite a long wait as there were delays generally in pathology at my hospital, but they were also testing two sets of tumours to see if I had two primaries or if it was metastasis.
I was ‘lucky’ and it was two primaries in ovaries and womb and both were stage 1 albeit moving towards 2.
I had the six cycles of Carboplatin/Paclitaxel followed by radiotherapy for the womb cancer. I was told this was the belt and braces approach to hopefully kill anything which may have been lingering.
I had my op and treatment in 2019 and have been NED since; CA125 was 976 and is now between 4 and 9. X
Thank you Yorkiepudd what fantastic news and I'm so pleased for you. And gosh that must have been very frightening not knowing where it started (actually in my situation they didn't even know if mine was definitely coming from the ovary or uterus prior to surgery thinking about it and they also found a peduncular uterine fibroid during surgery which had confused matters in my head beforehand as I could feel a lump right but the swelling and pain was mainly on the left!) Anyway, you've been through the mill and well done for getting through it.
Out of interest I'm confused about CA levels as aren't they misleading for CCOC? Mine was 64 which they said was 'good' but does that actually mean anything?? Guess it does? Maybe in some cases, not others?? We can often only take in what is relevant to us so not expecting you to know!
Thanks again for replying, it is so helpful. May you stay NED and be able to enjoy your life xx
Hi Emily
CA125 seems to be very much dependent on the individual, and also other things like infections and fibroids can even raise the markers, which is why it’s not used as a diagnostic tool. I was told as mine did react, then they were a good check marker for me and I’ve had one done at each blood test.
It’s all a bit of a bugger and I was actually looking at perhaps stage 4 initially as I had some fluid on my lung which they had to aspirate and test. That’s why I felt lucky (in the grand scheme of cancer land!) when I got two stage one diagnoses.
Look after yourself whilst in limbo land and I’ve got everything crossed for a good result xx
Hello Emcee71, my apologies if I am repeating guidance shared by others, but I'm rushing so can't read them all!!
My suggestion is to consider contacting the Ovacome Support Team on 0800 008 7054 and also looking at their information booklet on clear cell: ovacome.org.uk/clear-cell-c...
I was diagnosed with clear cell stage 3c in 2011 with a recurrence in 2013 at which point the oncologist gave me about 2 years, 3 at the very best. If you want to read more details of my 'story', please see Ovacome's information sheet on secondary surgery as, if yours recurs, this option maybe open to you - and Ovacome may be able to help point you in the most helpful direction, guide and support you along the way
ovacome.org.uk/secondary-su...
Warm wishes, xx
Hey Lesley
No apologies needed and thank you for replying to me! Will read your posts, and heading over to Ovecome now to look at this again, I wasn't quite sure what that meant (unless it was tumour removal) but my, so glad you fought the odds and your oncologist's prognosis to say the least! Bravery and determination from you.
Warm wishes back and thanks again x
Hello Emcee71That must be really hard waiting to hear staging, histology.... Waiting and unknown feeling always makes me stressed...
I was diagnosed CCOC in 2019 summer. Surgery was successful, followed by 3 rounds of chemo. Since then it metastised...
At moment I am in the hospital, I developed necrosis lymph node in my right side tummy which Cancer caused it. I was going to start a clinical trial this week, I also developed pulmonary embolism ( again), which didn't make me from eligible. Boo! But hopefully in 4 weeks time with CT , see how it goes.
CC is a bugger ( sorry for my language), it seems to develop funny things. I am sure your consultant will come up treatment plans. Fingers crossed, your surgeon is in touch with your consultant. I don't know how it works at your hospital. Sending you hugs and love 😘❤️
Hey Carrotmunch (great name!)
Sorry to hear you're in hospital and you have a pesky lymph node. Don't apologise for the language, I have been using much worse to describe this awful disease to my close friends, making full use of the fact it has 2 'C's' in its abbreviation 🤭
Could you tell me who is doing the clinical trial ? If you have the energy that is. don't worry if not obvs, I'm a way off that yet, but might take heart that one is happening.
I wish you the best of luck getting onto it. I realise how crucial they are to the advancement of treatment and also it's giving hope to us women unlucky enough to get CCOC.
Much love
Emily x
This clinical trial is funded by cancer research. Name of trial is called: Heptares trial part A. Part B is I think with immunotherapy combined. This trial is to use body's immune system to fight against existing cancer in a nut shell. If you Google, it's on cancer research site also Heptares website ( drug company's name). I have being treated under Addenbrooke's hospital in Cambridge. It's very early clinical trial. 😊💊🏥
I am confident that pulmonary embolism will be burst (😆), and I will be able to get on it next month!
I like your 2'C's abbreviation ❤️
I agree, clear-cell is very rare and can be persistent. I was diagnosed in 2008 with stage 1C of my left ovary. . I had TAH and six rounds of carbo Paxil. I made sure to keep up with my check ups and stayed clean for six years. It’s important to be vigilant and not stop getting check ups at the five-year mark. It’s been a bit of a challenge, I’ve needed additional chemo, and radiation. The good news is, I’m still going strong, and that was 15 years ago. The road may be a bumpy. I hope it’s not, but we just have to keep fighting. Praying for you.
Thank you Leniko and interested to hear about the radiation. The fact that it is an option, I mean. I didn't know that. This chimes with other women's advice to stay away from Dr Google, which I find incredibly hard because 1) I am a factual TV Producer (docs) so curious and thorough and like to think I vigorously check my sources and the dates of articles and things. and 2) because I was told what type of cancer I had at the bedside post op (wrongly IMO) yet have no other information like staging or full histology to go on and have not yet had a conversation about my treatement plan (which I do realise will def involve 6 x chemo)
I'm so happy to hear you are still in a good place after 15 years, long may it continue, and I will def not be missing any checkups! xx
my history is kind of long and I didn’t want to go into it unless you were interested. Hearing back from you, I will now share what happened with me. In 2016 when I had my reoccurrence it was OVca but showed up as a small tumor on the PSOAS muscle on my lower left back. It showed up on CAT scan, but I was first alerted because my CA 125 kept going up. I have had various chemo and radiation to deal with that tumor and two other smaller ones that have appeared. The good news is the radiation does shrink the cancer, though it doesn’t eradicate it. The other very good news is, it doesn’t seem to have moved out of my PSOAS muscle into other vulnerable regions.
Hopefully you will not have to go through any of this but that’s what happened to me and I’m still grateful that there are all these various treatment options. My Onco mentions immunotherapy if I need further treatment. Please be in touch if you have any questions , or if you just want to talk. Praying for you and all my OVca sisters.
Update
I got my results yesterday afternoon. That was the longest 3.5 weeks so far of my life. Knowing I had Clear Cell but not anything beyond that.
They have staged me at 2 (Clear Cell, which I knew) but they say more out of caution, and apparently it was debated quite a bit before doing so, otherwise it would have been Stage 1C2. There is a small question mark over the fact the tumour looked like it was adhered to my bowel. They say the CCOC has developed from endemetriosis and it's inconclusive as to something, I guess it was such a mess in there as I also had endometrial cancer 1A.... which worries me a bit, as I won't have a further scan. But at least I guess I could have 2ary surgery should a tumour appear on the bowel?
Nurse also said staging me at 2 would mean it would steer oncologist more firmly to offer chemo , as it is not a given even with clear cell, which I found surprising (despite many CC cases being platinum resistant from what I read?). Anyway, they think I can take chemo as I don't have other ilnesses or conditions etc, so she said it was done so that extra precautions would be more likely taken. All a bit odd, but anyway..
While I am grateful it wasn't worse than stage 2 of course, I am obsessing with the recurrence rate of Clear Cell as well as its ability to spread fast and still feel extremely frightened. I don't want to have a short life and I don't want the rest of that short life to be spent in and out of hospital with treatments that are just keeping me alive and which could give me side effects. Also supremely worried about money, as I face selling my beloved home which has a big mortgage on it with a lot still to pay and moving somewhere else rented so I can get benefits, if that is even possible. It's all so complex, the ramifications of this disease.. There is no room at my boyfriend's who lives far away and nor do I want to lose my independence or move to his then being further from my immediate family (at the moment.. though I do miss him loads now I have this cancer)
I feel so lonely, because my Mum and Dad are 'you must be so relieved', and just believe after treatment the problem will be gone (a bubble I will not burst..) , and my brother thinks I am catastrophising,and is more 'glass half full' and my boyfriend is like 'we can now have a great Christmas'. I am also ***massively tired***, and this makes me so scared for obvious reasons. I did have Covid 2 weeks ago but any amount of sleep doesn't improve my symptoms, I'm just in a fug of total exhaustion and anxiety.
Does anyone have any advice about how to get through this? I don't want to worry my loved ones, but at the same time, having issues carrying this fear all alone.
Thanks and sending love to everybody, and apologise if I am being ungrateful for my relatively early diagnosis.
Emily
Hi Emily, you’re def not overreacting. It’s completely normal to feel the way you do. I’ll pray you get through this. Things will get better with time and you’ll feel better. I’m confused though as to why there’s such controversy about your staging. There’s a difference between 1C2 (tumor cells on surface of ovary) and 2 ( tumor spread beyond the ovary but still in pelvis like cells in fallopian tubes or uterus). I believe for stage 2, some oncologists would do radiation in addition to chemo plus bevacizumab, whereas there’s generally no radiation or bevacizumab for 1C. Again, I’m so sorry this happened. Wishing you strength and courage 🍀
Thanks Doggies221 .
Yes, I can see why you're confused too and agree, there is a big difference!
I need to listen back to my recording of the chat with the McM Nurse. which I dont' have on me but the cancer is thought to be endemetriosis related so I think maybe there was endemetrial crap outside the uterus which may have confused matters as they said part of the tumour *may* have been fused to the pelvic wall, they could not say 100% it wasn't. So while they didn't think there was any cancer left and the tumour 1) had not visibly entered any other pelvic organs and 2) biopsy for ascites and nodes was negative, they said staging it at 2 would point the oncologist in a certain direction. So perhaps they feel it's good for me to have radiotherapy as well, just in case????? She did actually mention maintenance therapy: 'and then it would be maintenance' but I'm afraid I know that I cut her off at that point and we didn't go back to the matter, we focused on how I would discuss the types of the frontline chemo with the oncologist come the appointment etc.
Thank you for replying and strength and courage back at you xx
Understand, but I’m angry on your behalf :(. Even with endometriosis, if cancer was not found in the biopsy of the pelvic sidewall where the tumor was adherent, I don’t think it’s appropriate to upstage someone bc upstaging comes with consequences like more treatment and more treatment may not be necessary but does carry its own health risks. None of the cancer treatments are safe for the rest of the body, but science doesn’t know enough about C so everyone is shooting in the dark. I guess each person has to ask questions, research, make their own decisions which is a huge burden. Please let us know how things go and best of luck!🍀
Thank you. I will make sure to query it again xx
Hi Emily, you're not catastrophising. The uncertainties that go along with being in this club can be really really difficult to live with. Even if they try, friends and relatives often don't understand, and can even add to anxiety and upset. It's not unusual to keep some less optimistic details from loved ones (I certainly have where parents are concerned).
Your CNS should be able to give you a lot of advice on benefits and entitlements; helping and signposting with this is part of their role so please do ask them. There's also Macmillan, Maggies and the Citizens Advice Bureau.
What helps me is thinking that, if thanks to OC I'm going to be leaving the party early, then it's a waste to spend my remaining time being miserable. I can't just stop myself getting upset or anxious (which I do frequently), but I can try not to wallow. I can try to do nice things (eg get out every day; meet friends; do hobbies) and if I do need to rant; rage; howl or whimper this is a good place to do it.
Hope this helps. We're all right there with you. Hugs x
It does help, thank you so much. I will get on the financials, thanks for the nudge. And advice about keeping busy is great. I just feel so so so so tired. I think (hope) it's the Covid I got a week after the op that's causing it, and/or the surgical menopause, I will ask about it as I need more energy.
Knowing we're all in this together gives me such comfort. Thank you xx
Clear Cell Ovarian Stage 1c
Ovarian cancer clear cell 1c june 2010
Ovarian clear cell recurrence
Has anyone been diagnosed with Ovarian Clear Cell Cancer recently. I was diagnosed with Ovarian Clear Cell Cancer in September last year.
ovarian cancer ,granulosa cell tumor,
