This is my first time posting. I’m 34 and at the beginning of July I was diagnosed with 3C clear cell. There was a large mass at my ovary and a couple of deposits in lymph nodes in the fat layer. I also had blood clots on my lungs. I was told it was being treated as curative and that this type responds well to treatment. The plan was three rounds of chemotherapy then surgery, then three more chemotherapy.
I had three rounds of three weekly paclotaxyl and carboplatin (excuse the spelling) then a CT scan. On Wednesday this week I was given the results that the cancer had got worse. The mass was bigger and there were more deposits in a couple of lymph nodes. They are unable to operate because ‘it won’t get all of it’. I didn’t ask what stage i am now. The scan did show that i no longer have clots so i am now able to be put on avastin. The new plan is weekly paclotaxyl, fortnightly avastin and three weekly carboplatin.
I was told that they are no longer treating it as curative and that if this new treatment works it will keep things at bay until it doesn’t work anymore or i can’t tolerate anymore. I asked what the absolute best case scenario would be and was told that the new treatment shrinks it enough for surgery and the deposits disappear, but she thinks the chances of this are unlikely.
I am absolutely devastated and petrified at this prospect. My family are trying to be positive and focus on the fact that this treatment could shrink it but i can’t shake that my consultant is not hopeful for this and i am facing death but no one knows when. I thought i was going to go back to work and have my life back but now i am struggling that this won’t be the case and i’m going to be leaving the ones i love.
The anxiety i am feeling is overwhelming and I was hoping there may be somebody out there who has experienced similar who could give me some hope please.
Thank you for reading all of this x
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Autumn222
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I’m so sorry you are going through this. Some clear cell, depending on specific mutations/ molecular profile, maybe more or less responsive to carboplatin. Ask your consultant to test the tumor (by taking a biopsy) for specific mutations (next generation sequencing and immunohistochemistry) to find the specific features of this tumor. From there, the consultant should have a better idea how responsive to platinum this cancer may be (e.g., if it’s HRD positive or negative, etc.). Once specific mutations are known, maybe consultant can enroll you in trial testing specific targeted drugs for your mutations. Clinical trials seem to be very important in rare ovarian cancer. Just ideas here, but OC organizations really encourage molecular testing of tumors asap, earlier in treatment, not later. Wishing you best of luck in finding a treatment that works!💕 PS. Did this tumor arise from endometriosis?
Thank you so much for replying and for this information. I will definitely ask my consultant if it has been tested/to test it.
No i didn’t have endometriosis. I was checked in Feb 2023 for endometriosis, cysts etc with an internal and external ultrasound and they found nothing at all x
If you're in the UK you are entitled to a second opinion and/or to move your treatment to a different hospital.
After being diagnosed I got a second opinion at a specialist gynae cancer centre the Royal Marsden, and my treatment and prognosis massively shifted.
Ovarian cancer is nuanced.
Clear cell is rarer and needs a specialist expert.
This is your first line treatment and there are still an array of treatment options in front of you that could help.
As for curative, it's term none of us hear very often when it comes to ovarian. However, it doesn't mean it's over. It could actually mean controllable or stable. In many cases Ovarian cancer can be treated like a chronic disease.
There are so many women on this site that have been down this path, and now live with Ovarian cancer as a long term condition or have even beat the predictions when they we first diagnosed.
Thank you so much for replying. I have seen a lot on this forum about the Royal Marsden. I am based in Wales so hope I would be eligible to go there. That’s really good that your treatment and prognosis was better with a second opinion. Hopefully I have a similar outcome. Thank you x
Hi Autumn222, I'm so sorry you're going through this. I don't know much about clear cell as I am on these forums because my sister was diagnosed with a different form of OC last summer (HGSOC), and so I've concentrated on reading up on that particular type. However, she was 37 at diagnosis, so I have been an onlooker to someone in not too dissimilar circumstances to you, and I have seen how utterly traumatic and devastating it is.
I'm posting to say that I was reading a thread on one of the UK OC facebook groups a few weeks back where a lady who was diagnosed with stage IV clear cell in 2014 was describing her treatment journey. She is now five years in remission. She was (after 5 yrs) treated with an immunotherapy drug combination which has kept her NED. Doctors cannot predict the future, and they can't predict how any one individual will respond. I absolutely agree with the other comments - ask about profiling of the biopsies, ask about immunotherapy options, ask about trials, ask for a second opinion, seek out a CC specialist. If you're in the UK, I might be able to provide a few very general pointers about where you can start to find out some of this info. Sending you lots of good wishes xxx
Thank you so much for replying. I hope your sister is doing well. Yes please, I don’t know where to start with getting the ball rolling for a second opinion. It really is so traumatic. My consultant went from being completely positive and encouraging, to after the CT results, telling me i was going to die from this at some point. She said after trying this new treatment pattern with the Avastin, there is nothing else that can be done other than clinical trials. The whole appointment was so traumatising. She didn’t say anything unless we asked questions. She said ‘it’s not good, it’s bigger and is in a couple more lymph nodes’. That was it. My mum had to say ‘so what now?’ The consultant then said ‘well we can try Avastin’. But there was no enthusiasm at all and she wasn’t like ‘right, the results wern’t good but we are going to try this now…’. I spoke with her the next day and told her how she had made it seem there was no hope and she said there is hope and that the reason she was the way she was is because she was sad the treatment hadn’t worked. But I feel I can’t believe her now after how she was the day before. I feel like she has written me off x
Of course you feel completely de-stabilised by your interactions with the consultant - how could you not! You don't need her to feel sad, you need her to be clear, thorough and pro-active! I know doctors are so stretched, and the whole situation is a bizarre collision of experience (their everyday, your absolute waking nightmare), but some doctors really need to think more carefully about how they communicate. I would guess the majority of people here have had a negative experience at some point (we definitely have), you are not alone in experiencing this.
Absolutely get a second opinion - as I understand this, and as others have said, the route to do this is to put a request in with your current oncologist, or to put in a request with your GP. Don't worry about offending her, your have to prioritise yourself and your feelings, and you should not have had to go through an appointment where you and your mum needed to prompt to get info. You may be able to request a specific doctor. Whether via the Onc or the GP, your records and scans etc will need to be shared, so you might find it quicker to put the request in with your onc.
Which leads on to finding an CC specialist. Maybe this is something Ovacome can advise on? I know Ovacome work regularly with Dr Rowan Miller who is at UCLH and St Barts. CC and rarer OC subtypes are listed as one of her research interests. Bio and contact details here: uclh.nhs.uk/our-services/fi.... You can also google her to get a feel for her approach as she has done various youtube presentations for ovacome and Target Ovarian Cancer. You could also try the Target Ovarian Cancer nurse led helpline to ask for pointers (targetovariancancer.org.uk/... or the Ask Eve helpline (also run by amazing and hugely knowledgeable nurses Helen and Tracie (eveappeal.org.uk/supporting....
Christina Fotopoulou is mentioned frequently, and has a reputation for operating on people who have been told that surgery isn't an option. Her NHS email address is c.fotopoulou@imperial.ac.uk. The way it works (I think) is that your records would be shared with her, and then a consultation arranged if she felt she was in a position to help. I know people in other parts of the UK have had an online consultation with her in the first instance. I don't know if she has particular experience with clear cell.
To flag, in case it's an option - both oncologists and surgeons will have a private practice, alongside their NHS, if you wanted and were able to expediate things. I have heard that Christina F has seen people for consultations privately (to move things along quickly), and then done surgery via NHS referral.
TOC have a directory of current trials (though I think the majority are for people at recurrence stage). You can filter by type of OC and location: targetovariancancer.org.uk/...
Have you been offered any emotional support - counselling sessions? Again, your CNS would hopefully be able to advise if not. It's too much to cope with alone.
Adding my voice to those who say to ask for a second opinion (maybe even a third) from a major cancer centre such as the Royal Marsden in London or the Christie in Manchester. Local hospitals tend to stick to tried-and-tested protocols but the bigger hospitals have more aggressive attitudes, think outside the box, have access to clinical trials etc.
I’m so sorry you’re going through this and know how scary this all is. I would definitely recommend getting a second opinion asap, I did that on my recurrence and I was originally told I had stage 3b clear cell and was clear for 5 years. However on recurrence I pushed for a second opinion as was not happy that my hospital refused to do a second debulking surgery. I saw Prof Jayson at the Christie in Manchester who tested my original tumour and turned out I had low grade OC all along. So my treatment path completely changed.
I don’t understand the logic of them refusing surgery as they can’t get it all, the hope would be they remove the bulk of it and chemo will shrink the rest. Not sure where you’re being treated but in the larger cancer centres like the Christie, Royal Marsden for example, they tend to have more access to research and trials so more options open to patients.
Please don’t give up hope! Advocate for yourself and seek out the best specialist. I’m nearly 7 years on this journey and currently stable on Avastin, but living well and a full life.
Thank you so much for replying. How had they misdiagnosed what type you had, that’s shocking.
Glad you were able to have positive news from going elsewhere.
We felt exactly the same. Surely getting a lot of it out means less for the chemo to have to contend with. We asked this and my consultant said it would be putting me through too big of an op for it not to get it all and it come back.
I am in Wales but hope I could be eligible for the Christie or Royal Marsden. Not sure where to start with getting a second opinion. Should i go through my consultant or contact these places myself?
I’m so glad to hear you’re doing so well. That’s amazing. Thank you so much x
Any patient can ask for a second opinion and it’s done through your current oncologist, you dont need to accept what they are telling you and I’m sure the oncologists are used to being asked for a second opinion. I’d recommend having a surgeon/oncologist in mind for them to refer you to. There’s a female surgeon in Hammersmith hospital in London called Professor Christina Fotopoulou who takes on patients previously deemed inoperable, and she has great success from what I’ve read. Why don’t you initially reach out to her secretary on Monday and ask the question, but you’d need the referral and scans sent from your current oncologist.
You’re in wales so would have to decide if you’d be able to do the travelling to one of the bigger cancer centres, for me it’s worth it and I know my oncologist has treated patients from Belfast for example. The surgery might be big but you’re young and you will recover from it relatively quickly. All I can say is start researching, exploring options, seek out a clear cell expert, and push for that second opinion. I wish you only the very best and do keep us posted Xxxx
Please ask for a second opinion, I’m so sorry you’re having to go through this. I was diagnosed back in 2017 & told I had a 20% chance of survival, well still I’m here, same cocktail as you but mine was weekly with Avastin fortnightly. Have you asked about any trails? Dr Roman at St Bart’s London is a consultant who deals with trails.
Stay positive as hard as it is, don’t worry about upsetting consultants it’s all about you & what you need.
Thank you. That’s so encouraging that you have defied their predictions. When i was first diagnosed i was told i had a 30% chance of survival. Not sure what that percentage would be now after the last scan.
I will look at Dr Roman, thank you for that. I have no idea where to start with finding people to go to for a second opinion other than names i have seen in this forum.
I want to feel positive about the Avastin and feel i would l had my consultant not been how she was during the appointment last week. It has shook me and left me so confused as to me it is another chance for something to be tried but she was just shrugging and making out it was almost pointless to even try.
No never take their word, I learnt the hard way about consultants & now I tell them what I think & always question them. There’s new trails coming out all the time. Or they be at the minute your inoperable then they decide yes they can operate now. Take each day as it comes but never give up as hard as it is. It’s Dr Rowen.
Are you a member of Target Ovarian Cancer on FB? They have loads of information on second opinions & trails xx
No, i did go on the facebook page but saw staging information that scared me so haven’t been on since. That’s due to my anxiety and how i get, others would find it helpful i’m sure. I am planning on phoning Ovacome tomorrow to get some advice on when to go for a second opinion. I don’t know if I should wait for the next few weeks to see if the new treatment pattern with the Avastin makes a difference first or do it now. On the Ovacome website it says going for a second opinion can delay treatment so need clarity on that x
What a worrying situation for you, especially at such a young age. I think your oncologist is giving you mixed messages which is so unhelpful. I have had similar issues with mine, and having been on my journey with stage 4 clear cell for a year now, I have learned that advocating for myself and feeling in control is the best thing to reduce anxiety. Oncologists often don't have that personable touch I have found so try & seperate her approach out from what is actually going on here and what your options are. You need clarity and support.
Firstly I'm surprised your onc. Describes CC as responds well to treatment, I was advised thd exact opposite!
Secondly, please don't Google or look at statistics which are out of date & will likely fill you with more dread.
You are still having 1st line treatment. I would ask your GP to refer you to get a second opinion, but be clear on what it is you want to know. Surgery is often too difficult if lymph nodes near main blood vessels are affected so feel free to ask more questions of your onc. so you know the reasons why.
My tumour only shrunk slightly after 3 chemos but my surgeon was convinced he could get it all out, which fortunately for me he did. They have to be sure, as leaving some behind after surgery gives a lower prognosis overall I believe. It seems your onc. has altered your treatment plan and included Avastin. I had this from the start (it's job is to disrupt blood supply to tumours) so maybe thats why mine had shrunk a bit. Its good you can now have this now your clots have cleared. So actually it may be worth waiting to see if this plan helps and then consider surgery.
Trials are usually offered for 2nd line treatment after a recurrence so these can be explored for the future, but there are many strict criteria and so they can't tell you right now if any would be suitable for you.
I was given a list of recommended London surgeons and oncologists if you want to explore them, an NHS second opinion can take a while, so if you can pay (around £350) you can see someone privately much quicker. Let me know if you want the link.
The honest answer is that not one size plan fits all. They will offer you what is best for you at the time & monitor how it goes. None of us know where we will be in 6 months or years time. Have your CA levels reduced atall or still rising. Do ask for clarity on this. Feel free to read my posts as you will see what my journey has been like, its had many twists & turns but I always have hope & live for the moment. Always happy to chat if you need to. Trust us to get the rarer kind eh! 😳
Take care & ask as many questions as you want, I am likely to have come across things before. Keep the faith 🙏🥰 xx
It definitely feels like mixed messages. It’s gone from being curative and kind of telling me not to worry, to now feeling like i’ve been written off completely. I suffer with severe anxiety, have done for most of my life so when I was diagnosed it sent it in to overdrive. So i (stupidly) didn’t research anything and just put my full trust in the team i was put with, so wasn’t asking many questions of specifics regarding my situation. They told me it was curative so i clung on to that.
Since joining this forum I now know clear cell doesn’t respond well to treatment, so i am confused as to why my consultant said this. Also, at first I when i was diagnosed a surgeon told me said it was stage 3C, but the consultant I was then put with for treatment said it was early stages, another thing that is confusing. I did question this and she said ‘you’re young’.
Sorry to sound stupid but what is first line treatment? My consultant said if the new treatment plan with Avastin doesn’t work all that is left is trials. She didn’t even seem encouraged that i can now try the Avastin with the clots being gone. The whole appointment last week for the CT results was us dragging information from her. She was silent unless we asked questions which was so hard as we don’t know what to ask necessarily.
Yes please the link would be incredibly helpful. Thank you. And thank you for the offer to chat, that would be lovely, i feel very alone at the moment.
I have never been told my CA levels so am not sure what they are/have been. As the mass has ‘gotten a bit bigger’ and is in a couple more lymph nodes i assume the level would be higher? I’m not really sure how that works. I am absolutely petrified that it is going to spread to other lymph nodes and am almost scared to move incase it encourages it to spread, my anxiety is horrendous.
I actually think you are showing immense strength & courage by reaching out & not accepting this, and you most definitely aren't stupid, make a pact to be kind to yourself from now on, you deserve it. We all follow and accept our initial advice as we don't know any different so you're not alone in that, but now you need clarity. You have every right to ask your oncologist to explain fully everything up until now and request copies of letters from meetings etc. Also, getting a 2nd opinion is normal. I was advised to go through my GP so that it remains unbiased but your onc. can also do it. If you provide your email I will forward on the contact details for all the professionals others have mentioned who are also on my list. You can contact them directly if you're happy to pay privately, nhs ones can take a while! Stage 3 sounds right for what you've explained, spreading to lymph nodes. It becomes stage 4 if it's further afield like lungs, brain, etc. Age goes in your favour, your body will cope better than someone older, but has no baring on staging as far as I know. But I'm no expert so you could call Ovacome charity directly as they are very knowledgeable particularly around clear cell, treatment options, staging etc
1st line treatment is the standard carbo/taxol plus surgery. If you get to NED (no evidence of disease) then any future recurrence of cancer is treated as 2nd line & so on, where other options are explored.
I reached NED, albeit only briefly, & there is no reason why you can't too. Not sure why your onc would be so negative, noone knows until it happens. CA levels are part of regular blood tests, you can ask what your levels have been since the start, but they can rise for other reasons so they are best looked at over a period of time.
Hi Autumnww222, I was so sorry to read about what you’re going through. I was diagnosed 9 years ago with what I was told was a rare condition, a malignant struma ovarii, which wasn’t ovarian cancer but mimics it. I had six rounds of paclotaxil/carboplatin followed by debulking surgery, the biopsy showing it was the struma. As a result I was told no further chemotherapy was necessary. I’ve had regular blood test twice a year for the past nine years then just before Christmas 2023 I had a phone call from my oncologist to say that on my recent BT the CA125 had risen to 400. Long story short following a PET scan it was discovered that I had what was described as ‘seedlings’ in the peritoneum, the primary now been classed as ovarian cancer and put at stage 4. I’ve undergone six rounds of carbotaxil and I’m now on daily oral chemotherapy, Naraparib 200mg which I’ll be on until it stops working or I can no longer tolerate. How long this will be for I don’t know. This will be no comfort to you I know but hang in there, I will be praying for you.
I can offer prayers and compassion. My only recommendation is to get a 2nd and 3rd opinion. Not sure where you are located. I can tell you having worked with 5 different groups over the course of my cancer journey. I found the care vastly different between them. Also trying to stay positive and garnering support resourced helps. Hugs 🩵
Strongly agree w/ 2nd and 3rd opinion. And don’t worry about hurting feelings. As someone fighting for your body, life, and livelihood, hurting feelings should be your last concern. No one in the medical field seems to care about cancer patients’ feelings or your feelings either😑.
Wishing you the very best of luck and finding the best treatment that works!
That is exactly how i felt. Deer in headlights and the emotional weight of it all. Now i feel i’ve made a huge mistake not educating myself and asking questions. I was scared to know too much because of the anxiety. People said ‘you’re in expert hands’ and ‘trust the process’ so that’s what i tried to do. But feel now like it was precious time wasted where I could have advocated for myself x
I had stage 3C2 clear cell ovarian cancer l was diagnosed April 2014. I had two major surgeries in 2014 I had 18 rounds of chemo including IP chemo in 14 weeks. Very aggressive. It's a stomach was chemo. I have been cancer free since. I had 16 lymph nodes removed 2 had cancer. My latest test were all clean as of August 2024. Best wishes for a wonderful outcome
do not give up hope! I, too, was diagnosed with 3C clear cell. I had six rounds of chemotherapy, then operated on and three more rounds of chemotherapy. I had blood clots in my lungs too and had to have blood thinner shots every day for ten months. I was scared and not in a good state of mind, but I tried to stay positive and I had a lot of support from friends and family.
I know my doctor didn’t expect me to survive. After my operation in May, she told me she wanted to give me a good spring. That was over six years ago and I’m going strong with no reoccurrences.
Definitely get another opinion. There are so many new treatments out there. You have to be an advocate for yourself!
Hi Autumn I read your main post and some of your comments to other people's posts. Please do your best to remember that the negative consultant you encountered is just a person like you. You are very young and she had promised you a cure. Now things were worse and she was embarrassed for getting it wrong and devastated to break this news to a young woman. She messed up and was too emotional. Do all the investigations other ladies say in their posts and put her behaviour behind you. You have to scrub your brain clean of negative prognoses, they are worse than cancer.
Also, the doctors are only part of the solution (as you have seen) they make mistakes. What you are going through is objectively horrendous. You must be shocked and afraid. [I have found the following helpful]: Find a counsellor/[not]comfort eat[ing] sugar and junk food/[not] smoking. Get[ting] outside and watch[ing] the sunrise. Swim[ming] (outside if possible!). Death is NOT definite in the short term. Car[ing] for my body like [I] never have. Tak[ing] supplements. Eat[ing] organic salads.... And hunt[ing] for good doctors. I love integrative medicine doctors. They keep chemo side effects in control and to care for me after chemo when I am toxic. Much love
[edited by moderator to add text in square brackets]
Let me start by saying that I have been fighting for 12 years now. Stage 3C ovarian cancer. You have to be your own advocate. Don’t accept this plan of care. Go for a second opinion. Seek clinical trials that may help keep the disease at bay. I went to MD Anderson in Texas for a clinical trial. Don’t give up. Your mental strength is what will carry you through this horrible disease.
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