Clear cell

[Neona]

I had my first appointment with the oncologist today and was told that I had clear cell stage 3. Also that I would have to have heparin injections for another 5 months while having chemo. I cried and cried. Any info on clear cell would be gratefully received.

[Yasminj]

So sorry neona. I can't help you but I'm sure someone else here will be able to give you the info you are looking for.

Wishing you well and sending you strength

Xx yasmin

[Neona in reply to Yasminj]

Thanks Yasmin, hope you are doing ok.

[Microbabe]

I had clear cell but I am now Ned after op and treatment I was stage 1c.... it's quite a rare cancer but there are a few of us on here with this diagnosis 🤗

[Neona in reply to Microbabe]

Thank you

[Cropcrop]

Hi Neona,

I had clear cell stage 1c3, surgery and chemo sorted the little blighters out. This was in 2014. Clear cell is quite rare, less than 5% of ovarian cancer is thought to be clear cell. It is considered to be quite aggressive but because ladies with clear cell tend to present with a larger mass than those who don't have clear cell as a general rule (mine was 30 cm's on left ovary) we are apparently often diagnosed quicker and treated quicker so there is always an 'up side' if you can possibly call it that. Did your oncologist explain the staging to you and how they graded yours? Mine was diagnosed very early because I also had hypercalcaemia caused by the cancer so we knew pretty much what we were dealing with right from the getgo.

I also had a pulmonary embolism found by the MRI scan and had to inject heparin too, my oncology prof encouraged me to carry on the heparin beyond the initial 6 month prescription because he said it protected my blood vessels from the chemo so that's a really positive side to the heparin, I know the injections are a pain (literally 🙂) but in the whole scheme of things not too much to deal with, I injected in my tummy and called it nettle belly (amongst other things that aren't very lady like).

Please try not to worry too much (easy said I know) but you are in the best hands possible, they've got you now and will do everything possible to make you better but you have to work with them, positive thoughts are really important.

Do let us know how you get along and if you need to chat we're all here for you. Sending lots of love and big hugs ❤xx Jane

[Neona in reply to Cropcrop]

You are so brave about the heparin. My hands shake and some of the needles are blunt or bent and won't go in easily! Unfortunately I had no symptoms until it was advanced and the tumour was 10 cm at the ultrasound. I feel so stupid that I was unaware of it. Even when the nausea started I never thought that it could be anything serious.

[Cropcrop in reply to Neona]

Reward yourself each time you inject, I had a tunnocks chocolate teacake every time, I bet their share prices rocketed 😂, seriously though it really does help as it gives you something to look forward to. I've just worked it out to 487 teacakes, and here I was blaming the steroids for my weight gain ha ha. You can do this I did it so you can. Sending big virtual encouragement via the internet ether. They call ovarian cancer the silent killer because the symptoms are so similar to many other possible physical problems so please don't beat yourself up for not knowing you had it, we were all the same, mine was around 10cm when it was found I didn't know it was there, it was the pelvic bleed that took me to the doctors and he found it on examination and set the whole process in motion, on removal 6 weeks later it was 30cm in diameter, I damn well knew it was there then but not before. Be strong, you really are a strong lady and you will have hidden strengths you are unaware of yet. One of the ladies on here calls us 'warriors' and she is so very right, welcome to the tribe lovely warrior ❤xx Jane

I've edited the amount in the teacakes, I got a tad over excited and my total looked like I was having 7 a day when it was only actually a totally acceptable 2. And to think I used to use maths for a living (accounts) just as well I retired 😂, damned chemo brain xx

[Neona in reply to Cropcrop]

Thank you and love the idea of the treats.

[Lupilindz]

Hi there Neona, I too am Clear Cell stage 3 Figo 2b I had Carboplatin/Gem as couldn't have Taxol x im 5 months post chemo and doing good C125 is 17 and my Oncologist is really pleased x I didn't have the injections your on about so can't comment but sure everything being done is for your benefit. Stay strong and positive xx

[Neona in reply to Lupilindz]

Thank you for replying. Does this mean that you are not platinum resistant as I have read that clear cell is more likely to be. Did you have debulking first?

[Lupilindz in reply to Neona]

Hi sorry not been on site for a while x I was allergic to Taxol, went into anaphylaxis shock so my chemo was altered to Carboplatin and Gem which I coped with well and didn't lose my hair x I finished chemo Aug 16 and I'm check ups with c125 at 17 but it was only low when the cancer was found x hope your doing ok at the moment x keep smiling xx

[Neona in reply to Lupilindz]

Thank you for replying and I'm glad that you're doing well. I have my 3rd dose of frontline carbo/taxol tomorrow. The oncologist agreed to me having a ca125 test but said the result would not be of any value . It was 67 before diagnosis so I was told it would not be a good indicator for me.

[OvacomeSupport Partner My Ovacome Team]

Dear Neona

I'm sorry to hear your first appointment was so upsetting. I'm sure you will find lots of excellent support from the members of this forum.

We produce a factsheet on clear cell carcinoma which you may find helpful. It is on our website at the following link: ovacome.org.uk/wp-content/u...

Do give me a ring on 0800 008 7054 or private message me on this forum if you want to talk anything through.

Best wishes

Anna

Support Service Manager

[Neona in reply to OvacomeSupport]

Thank you-I do have lots of questions although am a bit confused about them at the moment. I was devastated yesterday when told it was clear cell as I had been trying to feel more positive and this has come crashing down. The oncologist was busy and didn't talk to me about it -I was just told "we do see it".

[OvacomeSupport Partner My Ovacome Team in reply to Neona]

Dear Neona

I apologise for the delay in replying to you, I was away from the office yesterday. It sounds as if everything is a bit overwhelming at the moment. It might be helpful to write down a list of questions for your oncologist or clinical nurse specialist (CNS), as and when the questions occur to you, which you can then ask your team to go through with you when you feel ready.

I'm sorry the diagnosis of clear cell has made you feel devastated and less positive. As the replies you've had from the members with clear cell explain, there are treatment options available. There is also research ongoing into new treatments. When you're looking for information remember that any statistics will be out of date as they always look backwards, and no statistic can tell you what will happen for you as an individual.

Please don't hesitate to contact me if you need further support. I'm happy to talk anything through with you.

Best wishes

Anna

[lesleysage]

Hello Neona,

Please do take up Anna, from Ovacome, on her offer of information and support.

I was diagnosed with clear cell, stage 3c in May 2011 and recurrence in Jan 2013. We were stunned (including our daughter who is a doctor) as I had taken myself to the GP due to feeling a swelling above my pubic bone when doing a 'soft parts check'. For some reason, mine did not 'splatter' but stayed in discrete tumours in one of the ovaries and another couple in the adjoining lymph nodes. At recurrence, the tumours had grown again in the part of the lymphatic system that the surgeon hadn't removed - i.e. close to my aorta and renal artery. On both occasions I had major surgery, had to self-inject with Clexane to prevent clotting and on the first occurrence had 21day carbo-taxol and on recurrence the 'dose-dense' carbo-taxol (every week) plus Avastin every two weeks. My last chemo was the end of Aug 2013 and I am still in remission - no signs anywhere....which is surprisingly unexpected. My last CA125 on Dec 1st, did go to 10 from 7...but although my heart 'flipped' I know logically that is nothing to worry about so will stick with my resolve to go to 4 months before the next test instead the usual 3monthly check.

As I read my words, I am struck by how 'matter of fact' it comes across...far from the reality of our emotional roller-coaster, I assure you. Most of the time, now, both my husband & I are steady, plan for the future, thoroughly enjoy the present...but around CA125-time, we are both completely distracted with anxiety. Our ability for kindness and compassion for each other and for 'ourself' has grown hugely!

If you want me to share anymore detail on all the things I've found that have helped me - and of course, we are all different, so what has and is working for me may not for you - then please do get back in touch.

Warm wishes and kindest thoughts,

Lesley

[Neona in reply to lesleysage]

oh how much you have been through but such an encouraging outcome. Was there any sign of resistance to platinum? I feel that I have been told very little and have the feeling that, as it is quite rare, they don't have much information. The oncologist just said about clear cell " we do see it". The surgeon didn't tell me it was clear cell but said " if you don't have a positive attitude all my work will have been wasted".

[lesleysage in reply to Neona]

Hello again, Neona,

Thank you so much for replying. I will try to be brief and just answer your questions but please do always write again if/when more arise.

I have found difficulty in understanding how 'platinum resistance' is defined but I think it is by how much the cancer is 'knocked back' / slowed down by the platinum-derived/based chemos. If this is the right definition, then for some reason my clear cell has not been resistant to carboplatin & taxol as it got 'knocked back/slowed down' the first time and, fingers crossed, so far, is still laying low inside my lymphatics somewhere....who knows?

Regarding the 'positive attitude': I'll try to be brief as there is increasing evidence this makes a difference:-

1. Anecdotally, both our daughter ( a respiratory registrar in a London Hospital so her cancer patients are the various lung cancers) and my oncologist both said (back in 2011 at diagnosis), "We don't understand why, but we certainly notice it makes a difference."

2. My GP's advice was "Your job is to concentrate on growing healthy Lesley cells, nothing else. The healthier the body you bring to we medics, the more options we can consider."

3. Mindfulness and Neurophysiology work both show that cortisol (the chemical secreted by our brains when we are stressed) affecs the brain functioning differently from dopamine, the chemical our brain secretes when we are happy, relaxed, enjoying things. So, I may be wrong, but I think that science will, maybe not in my lifetime, really prove that positive thinking helps nourish a healthy brain and body.

It is hugely hard at diagnosis and in recurrence to work at building a balance of facing realistically the poor prognosis we receive with this clear cell, but none of us know how it will pan out. We, and the docs, are amazed I am still alive and certainly even more amazed that I'm still in remission. So I urge you to be kind and compassionate to your distress, use Mindfulness (or relaxation or meditation) to 'watch' the impact of anxiety and of forcing yourself to look for any positive in each moment, each hour and each day. Gradually, very gradually I think we can find peaceful places within ourselves when we 'live in the moment'. But, I speak from being just 65 at diagnosis so coming up to my 71st birthday in a couple of months and not a much younger woman with young children. I feel huge compassion for them; I cannot imagine how I would have been.

My apologies, I have written much more than I intended, so will stop now.

Jodi's advice of 'reaching out' is so sound, Neona - reach out to Anna at the Ovacome helpline, your nurses, medics, here......

Warmest wishes again,

Lesley

[Choski in reply to lesleysage]

Fabulous post Lesley xx

[lesleysage in reply to Choski]

Thank you Choski, this is lovely to receive. When we share, we have no idea whether or not it helps a fellow soul or doesn't.

Hope today is a good day,

L x

[Neona in reply to lesleysage]

Thank you

[jdillon in reply to lesleysage]

Love this post Lesly! I was diagnosed at 48 and my oncologist told me the same thing......'Your only job is to produce healty cells.' I had to giggle because I have no clue how to do that outside of a positive attitude, active lifestyle and healthy eating. ...... I also find red wine helps too. Ha!

Love this site!

[lesleysage in reply to jdillon]

Hi 'Jdillon',

I really chuckled at this as I, too, asked him the question, tearfully, "How do I do that?" "Eat a good balance of fresh foods to hold your weight steady, exercise well and rest well." The first two are easy in comparison with the last! It took me about two full years after the recurrence to work out how 'rest well' felt to me! I now plan & look forward to those times, although now, about 3 years after the last chemo, I suddenly realised I wasn't pegging out to sit with my feet up absorbed in a podcast, some craft work or my self-study course on Neurophysiology. I have just had my first Christmas since 2010 where I've not 'crawled' to bed feeling weepy, queasy or sleepy because I've expected too much of myself in our family gatherings...slow learner here!!!

Hope your day is good too,

L x

[jdillon in reply to lesleysage]

I completely relate to all of this. What I love the most......you said words like '3 years' and '2010'! I am 7 months into this and hearing words like those is so encouraging!

I still haven't mastered the 'rest well' portion. I'm sure that comes with time. Of course, I was a little like that prior to diagnosis so now I just have something to blame it on. Ha!

Have a great day!

Jodi

[Cropcrop in reply to lesleysage]

Stunning post Lesley ❤xx Jane

[lesleysage in reply to Cropcrop]

Thank you everso, Jane. I definitely agree about 'treats' - at every opportunity. One of my stalwart ingredients for nourishing the positive thoughts, laughter, smiles etc....the planning is just as good as the 'execution' for me/us!

Hope your day is good,

L x

[jdillon]

Hi Neona! I am also Stage 3c clear cell. I had surgery and my 6 rounds of carbo/taxol. I completed that November 1st and found out I was platinum resistant. My CA125 never normalized during the course of my treatments.

When they did my post treatment CT Scan there was no evidence of visable tumors, but I did have ascites (fluid in the abdomen) which indicates the cancer is still active. My GynOnc started me on secondline treatment on Doxil/Avastin. I just completed my second round.

I know exactly how you feel about the diagnosis. When I first heard it I cried for two days. Then I pulled it together and got through treatment. Although I felt I was punched in the face with the news I was resistant and had to start secondline, I have learned to take it one day at a time and not look too far forward. I try to thoroughly enjoy every single 'good' day I'm having and am very thankful for those.

Clear cell is a very scary word and I found my searching for definite answers relating to prognosis increased my anxiety because there are no certains. I continue to be prayerful that there are new treatment breakthroughs. Until then, this site has been a wonderful resource and of great comfort knowing I'm not alone in my feelings....both physical and mental.

If you have any other questions, please don't hesitate to reach out!

Hugs!

Jodi

[Neona in reply to jdillon]

Thank you so much for your reply. Why did you have to finish the chemo if it wasn't working? Did the Avastin&Doxil work and how long did you have to take it?

[jdillon]

Hello! They had me finish them because my CA125 crept down slowly. The hope was that I was just a slow starter and it would kick in by cycle 5 or 6.

I just finished Round 2 with Doxil/Avastin yesterday so it's too early to tell. I have 4 more rounds on it which would put me mid-May for a finish date.

[Neona in reply to jdillon]

Thank you and really hoping this works for you.

[lesleysage in reply to jdillon]

Good luck, Jodi. Sorry, in my reply to yours on 'healthy cells' I didn't realise you are Jodi...slow again, here!

L x

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I am clear cell stage 2b, currently 3 years in remission. What information do you want to know about it