Clear cell ovarian cancer recurrence?

Hello. Two months ago, I had a CT scan which showed there is currently no evidence of clear cell ovarian cancer. However, I am afraid that I am having symptoms once again. Is there anyone out there who has had clear cell adenocarcinoma? If so, did it recur and were your symptoms different on recurrence?
I'd be glad of some feedback.

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What have your CA125 and HE4 tests done? Generally you'll se it chemically before it shows on images.

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?what did your doctor say-did he discuss the results? what did your labs show-?

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Hi Sara Lois:
I was diagnosed with clear cell stage 1c nearly 6 years ago now. I went through the big surgery and 6 rounds of carbo/taxol. I have been fine since - better than ever in some ways.

What symptoms are you having? For the first year or so I worried a lot about recurrence because I had gastrointestinal symptoms, including indigestion, constipation and just plain cramping. I also had backaches. But I had no recurrence.

I think my symptoms were a combination of chemo- and steroid-induced indigestion/constipation and the scar tissue or adhesions from surgery and many years of endometriosis. The backaches were from cutting own on my exercise while lifting heavy things, but at one point I was convinced my cancer had metastasized to the bone. It's sometimes worth it to remember that there are lots of things that can cause these symptoms!

I see that you also had an endometrioma when they diagnosed you. Did you know that clear cell associated with endometriosis has a better prognosis?

All the best!
Fiona

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Fiona, thanks so much for your reply. I am heartened to hear you are still clear six years on from your surgery. It really is amazing, isn't it?

My symptoms include nausea, abdominal pain and feeling a little bloated. I realise that, once you have had ovarian cancer (or any other type of cancer), you will likely always be on the alert for recurrence. And the danger is that others around you, however well meaning, may well think that you are being a little paranoid about the small pains. (My own GP yesterday asked me if I would have bothered going to her with the current pains if I had not had ovarian cancer - I felt this was a non-starter of a question as it took me two or three months of symptoms before I went along to the GP the first time round. As we know, ovarian cancer can be symptomless or mild in its symptoms - I was 'lucky' in that I had a palpable growth.)

However, I don't think I have been particularly focusing on a recurrence, just looking forward and planning how to realign life again, how to get back on track (which feels tricky in itself - people go on about how you should 'think positive' and how lucky I am: I still have my life. It may all be true. But sometimes it would be good to have permission to not feel lucky about the last bad year, to not feel in a good place, to worry about your mortgage and the roof over your family's head etc. It is so difficult to mentally return to work, to feel physically fit, to have confidence to go to the park with your two small children on your own - to even begin contemplating a future again. Particularly when you have been an independent spirit before the onslaught of operations and chemotherapy began. Apologies if this sounds negative - this, of course, is only one end of the scale of thoughts and feelings sampled at only one point in time).

What we do have in common is the scar tissue/adhesions from surgery, which I know from the CT scan I have inflammation in these areas. Perhaps this is what I am feeling. I also wonder if the supplements I am taking are causing the current symptoms (calcium citrate - I have become osteopoenic - and evening primrose oil - I ache quite a lot once I begin movement after being seated or lying down, and HRT patches. I'm guessing there will be side effects from at least one of these - and I hope it is as simple as that.

The endometrioma was in 2006, the cancer diagnosis was in 2010. I am aware of a link between endometriosis and ovarian cancer - but I am told that the cancer that was present is not related to the endometriosis I did have.

I can't help wondering if the cancer was related to a termination in 1998 and IVF treatment in 2007. But that's a whole other story!

Are you able to tell me how you managed to move on with your life? Or is that a difficult question to answer?

Thanks for your input!

Best wishes
Sara

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I understand how you feel. When you have been diagnosed with Ovarian Cancer, everything changes. I was diagnosed 12/08 with Stage II clear cell. I have been in remission for almost 2 1/2 years, but it has been a very long road. The fear of recurrence is a very real and frightening part of the journey. I must admit it is getting a bit easier over time, but the week before my quarterly doctor visits is very trying.

I was getting a CT Scan & CA 125 quarterly, but now I am only getting CT scans every 6 months.

My advice is to take really good care of yourself. If you need medication for sleep or depression, don't hesitate to ask for it. I wish I had reached out more for help. I got really depressed last summer, but thought I should "be better" since I was so lucky to survive.

Hang in there. What we have been through is really tough. I think it is hard to get used to this "new normal" but time does play its part in healing your wounds.

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Hi SaraLois,

I have OCCC and had a PET/CT 3 months ago that showed only a couple of small masses by my liver. All other areas with an uptake reading were low and suspected to be scar tissue. Well my recent PET/CT was astoundingly different, a once thought to be inactive pelvic mass has grown and has high uptake. There are several other areas showing small masses and alarming uptake. There is also uptake (unknown reading) in my liver, heart and urinary tract. So areas that did not seem to be alarming are indeed very alarming and all over the place. What a difference 3 months can make. I hope that this will not be your experience but I hope that you will have another scan at the 3 month mark to hopefully put your mind at ease. I just started feeling symptoms myself about 2 weeks ago. Oh too I wanted to mention that the PET scan showed so much more activity than the CT alone. I would really try to push for both this time since you are having symptoms.
I wish you well!

Janine

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I surely hope your GP did not mean to imply that you were paranoid. If that was what the comment meant, I would find another GP. Fear of recurrence is realistic, and you SHOULD be very much aware of what is going on in your body. I was stage IA, grade 1, and even though I was told that my odds of a recurrence were low, I have been extremely aware of everything going on in my body since then, and I still am, even though it's been over 9 years.

You are entitled to feel worried and not be positive all the time. Anyone who has experienced a life-threatening illness is entitled to feel anxious. If you did not, you would be accused of being in denial. There are many challenges after a diagnosis of ovarian cancer, no matter what the stage or grade, and it takes time to adjust to them and incorporate the entire experience into your mind and your approach to life. It doesn't happen overnight.

One thing that really, really got me angry after my diagnosis was when others told me how to feel. I felt how I felt, and I wished they'd keep their psycho-babble BS to themselves and allow me to feel however I wanted.

And lastly, I would go to a doctor who takes your symptoms seriously and pursue this. Do you see a gyn-onc? Is CA-125 a good indicator for you? CTs are not 100 percent foolproof. It may be nothing. But in my opinion, you cannot be too careful.

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By the way, I don't know if your doctors can really know if your endometriosis was connected to your cancer. Clear cell and endometrioid tumors are both connected to endometriosis sometimes, though not always.

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YOUR LABS SHOULD TELL YOU WHAT YOU WANT TO KNOW-YOU SHOULD HAVE A STANDING ORDER FOR
A CA125 AD A CBC'IF NOT CALL AND REG ONE FROM YOUR DOCTOR TELL HIM TO PUT IN A ODER-
YOU CA BEGIN TO FEEL OR TALK YOURSELF INTO HAVING PAIN OR THE FEELING YOU REMEMBER HAVING WHEN DIAG
GET THE LABS OUT OF THE WAY IT WILL TELL YOU MORE- BEFORE YOUR START TO WORRY AND MAKE YOURSELF SO STRESSED OUT
THAT COULD BE UNHEALTHY FOR YOU-

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To Sara:
I can understand your worry. I have only 4 sessions left and I'm already concerned I am having a reoccurance because my tummy is so bloated. My CA-125 is excellent, so good lord what will I be like after Chemo....lol... but I think worry is normal. I would recommend exactly what many of the ladies said on this page. Get the blood work and if possible get a new GP.
That is a really "stupid" comment by a doctor. I think if you find other things appealing about this GP, and this was just an insenstive comment, you need to take the time on your next appointment to educate him/her about the stupidity of this comment. Individuals with 12 years of schooling should be hit with some facts. They are science types, so I would definately bring up some facts about OCCC reoccurance and the importance of viligance with monitoring this particular "silent DEADLY cancer."

Fight with all your instincts and don't be afraid too stand up or yourself. Sometimes we have to educate these Physicans and always remember. They work for you. They are providing you a service and if you don't like them or the service they are providing go to someone else as best you can within your financial/insurance means.

Best wishes Sara....Keep us posted on your progress.
Peace
Sweet

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To those of you who have replied: thank you so much! You have made me glad I joined this website. It really is good to talk with people who really know the processes of and fears from having this disease. It is soothing. And it serves to arm us with more knowledge when we hear each other's experiences.

Janine, I am only too sorry to read about your situation. It seems to me to be the nightmare lived. Does your medical team give you any hope? Is there a drug trial that you can take part in, or is radiation a possibility? You must be in shock. Please let me know how you get on.

As for bloods, CA 125 does not (I have recently been told) pick up on clear cell cancer so it seems this test is useless for me. Is there an alternative blood test, does anyone know?

My GP is booking an urgent ultrasound scan rather than risk giving me more radiation with a CT scan (any thoughts on that?), I have a blood test booked for Tuesday morning and I need to take in a urine sample. Unfortunately, it is the bank holiday weekend so nothing happens for three days, and I have to wait, while feeling concerned that every day is another day for the aggressive cancer to (potentially) advance on the rest of my body. I am trying to keep it in perspective (whatever that is!) and realise there is nothing I can do about it. So I wait.

As for this particular GP, I have found her to be careless on a few occasions in the past, too. How many of us, I wonder, in fact undertake our own research and diagnoses (in as far as we can, if not medically trained) - and are thankful that we do?

Though I have recently felt alienated from friends with regards to possible recurrence of symptoms (some of them only want to hear the good bits - "Oh, yes, I am feeling much better, thank you") , I now feel supported by you all in remaining vigilant in OCCC matters - it really is important.

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Hi Sara:

You ask how I managed to "move on with my life". Ha! I tried it all: worrying, obsessing, researching, participating in forums like this one. I listed out all the reasons why I had an advantage -- age, top medical care, good health, endometriosis. I kept working throughout chemo, which was a good distraction.

I also figured out that because clear cell can be so aggressive, recurrences that occur usually happen early in the process. So, once a year and half had gone by, the chances of recurrences went down quite and bit. And continued to decrease with time.

So I waited it out and tried to keep myself busy in the meantime. But I remember hesitating to renew magazine subscriptions, thinking that I shouldn’t bother to get off season bargains I may never wear, planting bulbs and wondering if I would ever see those daffodils….. By 3 years after diagnosis, though, I felt a definite relief. Now, of course there are examples of women who have recurred with clear cell after 3 years. But, the risks become very much smaller. And I began to feel more comfortable.

I never felt like I HAD to be “positive”, though I am a positive person by nature. It’s probably better to be positive than being negative, if that is how you feel. It’s certainly easier to face tough times if you see things from the sunnier side versus only seeing the worst of every situation. But plastering a smile on your face and not allowing yourself to acknowledge or talk about any fears can’t be good.

I know the “STAY POSITIVE” pressure from others, but I found it was usually a way for people who really don’t understand to try to feel better themselves. They have heard about this whole positive thinking thing and have latched on to it so they don’t have to process the reality of the situation. But usually they mean well, I think.

So yes, we are lucky to be early stage, with relatively better prognoses. And yes, it is very scary, because we are at substantial risk, at the same time. And we can’t know the future, which is very anxiety provoking. But the reality is, we never DID know the future, we just thought we did before diagnosis.

Stay well! And let everyone know how you do along the way.

Fiona

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Sara, radiation from repeated CTs is a concern. All imaging tests are good at some things, less good at others. For example, PET-CT is better than CT. I have had one gyn-onc tell me he thinks ultrasounds are useless for followup, and another gyn-onc send me for an ultrasound because he says it can detect ascites.

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Sara,
Thank you for your thoughtful words, yes you could say I have gone through a shock these past few days but I am settling down now and prepared to begin second line chemotherapy using Topotecan. I do not really feel I have time to look for a trial right now. I'd like to see what happens with the Topotecan then go from there. Radiation therapy has never been mentioned by my Oncologist and I keep forgetting to ask why that is not in his vocabulary. In any case, I love my Oncologist and trust his judgement. He is a straight shooter and has told me that with my platinum resistance status that no matter what I do, surgery, chemo, both, or nothing, the statistics do not show a variance in the prognosis. We are all individuals and we are not a statistic this much we know, but still, his somber news is the truth of the matter for most patients in my situation. So I am choosing chemo only for now and will continue to practice my QiGong exercises which help to keep me sane along with the Avastin.

I realize that your staging is much less worrisome than mine but my opinion is that if you are having symptoms get a CT scan in the least. The radiation is a lot but the clear cells can be a lot more detrimental left to creep around inordinately. The CA-125 and blood work in general does not help my case either though I have not had the He4 or whatever the name of that test is, I am not familiar with it and my Oncologist has not suggested it. I have read testimonials of Stage 1/2 progressing and quickly so I simply would not rely on only ultrasounds. I would ideally want a PET/CT so that areas of uptake which may not be showing masses yet will likely be reflected. Then if you get a clear PET/CT now then going back to an ultrasound or CT only schedule would seem reasonable. And praying all the while that it is only your pesky scar tissue flaring up.

One good note about my PET scan, the uptake in the liver, heart and urinary tract is normal readings, not high uptake. I clarified this today with my NP. A little silver lining there, no liver metastases!

We all know that many women don't get diagnosed correctly to begin with, and we all must be continually diligent that we are getting the optimal tests for our respective places in this journey.

Janine

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Sara, I wanted to mention something about general practitioners, at least in my experience. I can say with absolute certainty that nearly ten years after my diagnosis--and this was probably true even a month or two after my diagnosis--I know WAY more about cancer, and specifically ovarian cancer, than my GP will ever know, unless he gets cancer, though in all likelihood, it will not be ovarian :-). I hardly ever see him except to get a referral for a specialist. Under no circumstances would I expect your GP to have in-depth knowledge of your cancer-related issues, and certainly not about which imaging tests are better and which worse for your particular situation. Even most gynecologists, I think, are not expert in such things.

I'd be interested to hear what others think, but this has been my experience.

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Plonanon you speak the truth I am certain of it. Cannot rely on a GP to answer these questions!
I would not take as verbatim any practitioners opinion on these matters except from an oncologist but sometimes you can get lucky like I did in the ER and find an astute generalist MD who steered me right to a CT scan. But of course I was presenting with all sorts of IBS symptoms and a pelvic mass so its no wonder he sent me there right away!

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Thanks for your kind words. Nobody but us seems to understand how we feel . I think that people mean well but am so sick of people telling me how I should feel and what I should be doing. I am me and entitled to deal with this disease the best way I now how.Unless you'vebeen there,you can;t possibly know. I just want to be respected for the way I feel. Like all of us, I have good days and bad days. I thank God for all my teal sisters like you who are the only ones who truly understand.


Hugs and God Bless

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Hello. Plonanon, thanks for your message (I can't work out how to respond to your message other than on here - I will have to work on that one!)

You are right - my GP doesn't know much about ovarian cancer and even when I try to explain to her the nature of clear cell ovarian cancer, she still sends me off for a CA 125 blood test and for an ultrasound - for which I have not yet received an appointment, anyway (it is now a week ago since I saw my GP, so no urgency there, then). I wouldn't expect her to know much about it - however, my way to my oncologist is barred, as I can only see her if my GP sees fit. I am not afraid to push for things, but since all my blood tests have come back normal (kidney, liver, blood count and inflammation), I am beginning to wonder if I am worried about nothing. (I hope so!) I don't quite know how to progress. I don't want a CT scan, if I don't need one. But... I did call and leave the oncologist a message more than a week ago but all that happens is the secretary writes this in my notes and there is no follow up until the GP sends a letter. Perhaps I wait to see if my symptoms worsen before I knock at the GP's door again... I don't know how quickly clear cell develops, though I know the mass I had grew rapidly over the course of six weeks.

I have today also been fighting for my job, teaching classical singing in a school. It was a new job last September and I was there only six weeks when I had to leave because of my first operation. 'Due to your absence, the parents of all your pupils have decided to continue lessons with [your stand-in teacher],' was the first letter I received. This looked so discriminatory and I fought back, and won my job back - only to lose it again, apparently for the same reason. I have had my second meeting with the headmaster today (and the head of music, who instigated this), and he told me that most of my students' parents have requested the other singing teacher at the school or a new teacher. I am so dumbfounded. They can give no other reason for what has happened and I can only draw the conclusion that it is directly related to my time off through illness. I am self-employed, and in the UK this leaves me with no rights.

Cancer really brings out both the best and worst in others (not simultaneously, perhaps?). How can other humans try to knock you down like this when you are already struggling to live again? I don't know what medicine there is for this kind of cancer.

Salsac, your words ring so true. Sending you lots of warm thoughts. xx

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Fiona. I have Stage IIC clear cell cancer associated with endometriosis. I was diagnosed in November 2010 and am still in chemo. I was interested in what you had to say about clear cell associated with endometriosis having a better prognosis and also about clear cell being aggressive and if it doesn't recur right away, the odds are better that it won't recur. I haven't been able to find much specific information about these types of questions. Is your doctor giving you this information or have you found a good technical source on line? Thanks for any help you can give!

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So the doctor who determines if you may see your oncologist is your GP? I must say I am stunned, since a GP is totally unqualified to know when you need to see your onc.

Can you find some information online from a legitimate source that will convince your GP that your concerns are real? Or is there anyone else here from the UK who might have advice on how to navigate the NHS system? I know there are a number of women on this site from the UK. Perhaps you could start a thread to ask for their advice?

I am so sorry about your job. That is truly awful, on top of everything else.

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