Clear Cell Ovarian Stage 1c

Clear Cell Ovarian Stage 1c

I have been diagnosed with clear cell ovarian stage 1c. I'm scheduled to begin chemo within a week. I've read several posts which says many who are at the same stage haven't been given chemo. I'm very nervous about taking the treatments and wonder if it's worth putting the poison through my body. I was told it would reduce the risk of reoccurrence. Anyone else taken treatment and had it reoccur?

42 Replies

  • Hi, I was diagnosed with clear cell stage 1C in March this year and had 6 sessions of Carbo and Taxol, you can search for my posts and photos to see my journey. Stage 1C is an early stage which is great however clear cell is always grade 3 which is generally treated with chemo due to the grade.

    Did you have any cells found in your abdominal fluid or did your mass burst or both? Mine had previously ruptured, ruptured again during surgery and cells found surgeon didn't give me the choice of not having chemo. It is possible to have thousands of Microscopic cancer cells which can't be seen even by microscope and grade 3 is recommended for zapping.

    Yes the thought of chemo is scary, yes the thought of losing your hair is scary and upsetting however I wasn't going to take a chance.

    Take care


  • Thanks Clare. The mass did rupture during my first surgery to remove my right ovary which did test positive for clear cell. I wish you well and God bless!

  • I was diagnosed with clear cell 1c with rupture in 2009.I had 6 rounds of chemo as recommended for yourself and have had no recurrence so far.I would definitely have the chemo.Take your anti-nausea pills as prescribed,plenty of fluids including prune juice and a balanced diet and wallah it will be over before you know it!!!

    Good luck and take care xxx

    PS chemo is always recommended for 1c onwards.

  • Thank you and God bless!

  • Hi, I was diagnosed with Clear Cell (adenocarcinom) stage 1 c as you in august 2015. They found no cells in my abdomen during surgery, but the cyst did burst before or during the surgery... I was recommended strongly to go through chemo, to kill those little cells, if they were there. I went through 6 series and now, when I am on the other side, I am glad I did it. I kind of did what I could for my self. I have scans with contrast every 4th month and have uptil now, no reocurrance.

    I wish you all the best of luck :-)

    Ulla (Copenhagen, Denmark)

  • Thank you and God bless!

  • Hi. I was 1c clear cell last August 2015. I had taxol/ Carbo for three but couldn't take anymore of the Taxol due to Peripherial Neuropothy. So finished on just Carbo in March this year.

    Mine has reoccurred and spread to Peritonium and lymph nodes. I was never really improving the way they expected a few months after the Chemo finished, so another scan was ordered. By my 3 month follow up, my cancer was back. I'm starting out on Caelix this time as my cancer is platinum resistant., so we are hoping this will stop the growth as I'm getting a big a a barrel again. Another scan is due after 3rd chemo, so fingers crossed!

    everyone's journey is differernt so no one can tell you exactly what will happen to you. Big hugs and try to keep thinking of the future, as there are drugs out there to help you along the way.

    Take care


  • Thank you and I wish you the best. God bless!

  • It's difficult isn't it when told that they've told you that they got all of the tumour out and you've such good cause to feel optomistic as its an early stage to then consider the scary prospect of chemo. My head was all over the place when I was in a similar position to you nearly four years ago....

    What I came to understand was that with chemo its all about the balance between potential benefit and potential risk. Your oncologist will be making recommendations based on you as an individual and the knowledge and evidence there is based on studies and statistics. I found reading the NICE guidelines on OVCA treatments helpful. Unfortunately there is no crystal ball....

    It is though really important to understand that there are differences within stage 1s. 1Cs are different in the way they are treated (with chemo often) and recently even 1C has been sub-divided as there is better understanding of these and how best to treat. The grade of the cells and sub-type is also really important in deciding which if any chemo is recommended.

    Mine was a 1c because of surgical rupture and I had grade 1 (slow dividing) mucinous cells- this type and grade are not known for responding as well to chemo so I had just carboplatin X 6 sessions. As someone else has mentioned, chemo is recommended for clear cell subtype / grade 3.

    Do try to have your questions answered either by your oncologist, CNS, Ovacome helpline or even your GP (mine was great at helping me focus on the decision process and a great support).

    For many people chemo can be pretty tough but there are so many women on this site and wider, who've found their way through it and there is absolutely no reason to think you won't also, if that's what you decide. The side effects also vary from individual to individual and there are lots of old posts with helpful tips.

    I did question what if any chemo I should have as it was all rather finely balanced and even once I'd started, I did a deal in my head that I could stop the next time I went to the hospital... I didn't stop though and although there are no guarantees, I'm comfortable that it was the right decision at the time for me, based on what was known....

    Wishing you hope and strength, Sxxx

  • Thank you and God bless!

  • Hi, I was told the same to prevent risk of reoccurrence and mine was stage 3. Go for it and it will be over before you know it. My hair is almost back to normal but you will find that managing the side effects is more important. I am walking more than 1 hour everyday now and everyday I have smoothies and carrot juice. My treatment finished back in May. Good luck with it and you will be ok. Xx

  • Thank you and God bless!

  • I am in your boat as well. I had a hysto in March and they found a 1.5mm cluster of epithelial cancer cells on my Fallopian tube. The gyno didn't call me in early, I found out at my 6 week check up. Since then I have had 2 opinions...the first guy was a madman who said I had a 70% chance of cells seeding (he also said "well, maybe after I have had a couple of cups of coffee I will take that down to 60%") who wanted to do 18 carbotaxol via IP port!

    I requested a change to another hospital and the onc there has actually seen a cancer this small and said a 20% chance of recurrence (it was the size of a seed bead or head of a pin) He still recommended 6 cycles of carbo only....I resisted and then changed my mind and am due to begin on Friday. He said the chemo will still only give me another 10%, the last 10% will depend on my, lifestyle etc. And luck too I guess. CT scan 2 months after surgery was clear and my CA125 was evidence of disease.

    I alternately think I am crazy, and then think that I probably wouldn't know if it did reoccur until it was well advanced as I have nerve damage and issues with my large bowel that have my belly in turmoil most days. I go, terrified of what chemo can do to my body long term but ready to deal with the immediate side effects.

    I have a wig appointment today, and I start medical cannabis tonight. I have my juicer on the counter to make lots of fresh juice and frozen fruit in the freezer for smoothies. Vegan diet and tons of water for the next year.

    We had long overdue vacation plans for this month including a canoeing trip in Algonquin park (I'm in Ontario) and I am not letting this ruin my happy, I m still going , even if hubby has to do all the paddling, but I suspect after first treatment I will still be fine.

    It's a tough decision, if I hadn't had that second opinion I wouldn't be doing it for the Pindot of cells they found but the 2nd Dr I have now I trust .....I think.

    It's tough......big hugs to you, it's comforting to me to know there is someone else about to start this journey with the same misgivings swirling around in her head. more thing...both Drs said it was so small that my body may have reabsorbed it and it might not have been there a week later...and neither could tell me if this was a normal hormonal "wank" that possibly happens to many menopausal ladies and sits in dormancy.....they don't know...have heard a lot of "I don't know" from these doctors.

  • You rarely lose your hair with carbo only.

  • I know, but my baby fine hair grows really, really fast so I want to be prepared. Hubbies health plan will pay for it, I will donate it back hopefully in excellent condition!

  • Wigs are fun anyway when you don't need them

  • Thank you! I wish you the best on your journey as well. I'm having issues with my bowels also. A lot of pain in my lower abdomen and back since the hysterectomy. I've been wondering if I should get checked out to see if there's a problem or if this is just normal pains post surgery.

  • You should certainly mention it just in case. My back has been iffy since the surgery....strained it trying to get out of bed! It comes and goes, so I am not that concerned about it. As for bowels, they do take time to rearrange themselves after getting pushed out of the way for the surgery.

    My bowel issues were about 15 years in the hysterectomy happened because I had a baseball sized fibroid outside my uterus crushing my bowel...totally blocking it at times. (" you have IBS Joann," "just wait for menopause, it will all get better Joann") my doctors tried to generalize my now I deal with nerve damage and chemo!

    ...the routine pathology after surgery found the Pindot, I had no symptoms and the cells found on my Fallopian tube were way too small to be found on imaging.

    ...keep in touch,and let me know how you are doing!

  • Hi. Of course you are nervous about this. And on that note don't be afraid to ask for anti anxiety meds. Chemo treatment is very personal. I was diagnosed with stage 1A but high grade cells. Everything was contained in an ovarian cyst. Because of the aggressive cells the conventional wisdom says chemo. I was in denial until the very end. In fact I just finished my final round and I'm still not sure I should have allowed the poison. I will tell you this - look up the Icon3 study from the Lancet in 2002. It was an important study that showed that Carboplatin as single agent was just as effective as the Carbo/ Taxol combo and far less toxic. Also in the US oncologists get paid according to the drug and the time it takes to administer. My chemo treatment lasted an hour including the pre meds. Taxol adds another 5 hours. So 2002 was a long time ago but I researched and found other studies showing the same results; one from the UK in 2005 and one from Cairo in 2009. When I insisted my oncologist agreed. My CA125 test is at 8 although it has been normal throughout. Having said all this it is your decision and yours alone. I did not lose my hair and although I feel fatigued I had relatively few side effects I would never take Taxol

  • Thank you for the info. I wish you well and God bless!

  • What a lovely pic... I was diagnosed with clear cell 1c1 in May 2016... I had my op everything out on 10th May and was seen by oncologist 8th June ... She gave me the option to have chemo or not I was floored... I didn't expect this option as my surgeon said I would need chemo... I found out at this appointment that the cyst had leaked during surgery but no cancer was found anywhere else. Because if the clear cell diagnosis I opted for chemo .... It was the hardest decisions I have had to make ...I was just begging to feel well again after op and the symptoms of OC ... To make myself I'll again was going against the grain... I felt it was giving me the best option of not having a recurrence a belt and brasses... My onc offered me the cold cap as I was very concerned about losing my hair... I decided against it as she informed me that people do lose their hair with taxol and the extra couple of hours it adds on to treatment day which is long anyway plus I a wuss when it comes to cold I didn't have it ... My hair became very thin so I braved the shave and I have no hair ... I never thought I would be brave enough to go out bald but I have ... The wigs I have are fab and fun but I don't feel u have to wear one as the do be one a little itchy in warm weather ... For me the chemo was not as bad as expected and I know I made the right decision... I try to maintain a positive attitude and see chemo as making me well... The decision was far from easy but I'm glad as I come to the end that I've done it... There are no guarantees and I know it can recur but if it does I will fight it... Big hugs and good luck on your journey everyone reacts differently to chemo my worse symptom is joint pain for which I now take painkillers that make it more manageable... The onc have fantastic anti sickness drugs too.. For me the risk and benefit equation came up with the pathway I'm now on.

  • Our stories are exactly the same. I wish you well on your journey. God bless!

  • Great response to your post ....I am in the middle of chemo and find this site so reassuring. I also follow inspire a us based site. I also am 1c endometroid (cyst rupture) with clear biopsies. There was no question of not doing chemo. I started on carbo taxol but had a severe reaction to taxol which included loosing all my hair😠.after 2 months off I am back on carboplatin only and it's going very well. Ok you are inconvenienced for 3_4 days with side effects which are easily managed.. but after that you just get on with life. I drive myself in and out and frankly love not working and having the house to myself while kids are in school. My hair has grown back white and curly and it's really strong. Good luck and refer to this site if u need help ....there are lots of inspirational women here

  • Mine was also endometrial related. All of the responses I'm receiving is really helping me. Thanks and God bless!

  • @bonnie11what site do you follow in the US?

  • I too am 1c,but because of ascites,there was no alternative but carbo/taxol for 6 months.That finished 19 months ago.

    I haven't re occurred so far.I just wanted to give myself the best chance and go with the experts advice,if I hadn't and reoccurred, I would never have forgiven myself.

    It is a hard decision,but take advice and make your own choice, it's down to you.

    You will lose your hair, but you are so lovely you would look good in a bin liner.My son shaved my head to stop it being such a shock when the hair fell out.I got a couple of great wigs and some hats and all was fine. It has grown back really thick and much better than before.

    I wish you luck in your decision,as you can see there are loads of lovely ladies of all ages here for you,

    Good luck

    Carole xxx

  • Thank you Carole and God bless!

  • HI there and welcome to the site, as you have seem there is a world of support on here. So I will add my comment. I do understand your fear as Chemo is alien to us all. However in terms of life, it is totally worthwile. Yes we endure about four months of treatment and not all bad days. In fact just one or two days out of every cycle. You can do this and hopefully finished in the New Year approximately depending on the regime you will get. It is scary looking at treatment but it is doable, If you are having Carbo and Taxol yes you will lose your hair but nowadays there are plenty of stylish wigs out there. I am not saying its easy but whatever you decide I wish you the very best. In addition your Oncology team will ensure that you get ample anti nausea meds etc.

  • Thank you! Everyone has been so helpful. I'm so glad I found this site. God bless!

  • You are welcome and do ask any question you feel you wants answers to we are a fairly good group of ladies and do our best to be supportive, if you are in UK you can also ring the Ovacome Nurse, best wishes

  • I had stage 1b ovarian cancer and was followed by 4 chemo treatments. I was cancer free for 8 years until this year when diagnosed with stage 3 PPC. I would do the 4 treatments but it's a personal choice. Hope this helps.

  • As much as I dread it I've decided to take the treatments. Thanks for responding. Sorry to hear your cancer has come back. I wish you well as you move forward with your treatments. Thank you and God bless!

  • Hi slfranklin,

    My last treatment was 4 weeks ago today. I just got my energy back last week and have even joined a gym. The chemo to shrink the tumors was a lot easier than the preventive chemo which was iv and ip. Ip is what they call a belly wash and it was dreadful. You won't have to go through that. I wish you the best.

  • Thank you and God bless!

  • Thanks I appreciate your input. I'm so sorry to hear about your recent diagnosis. I wish you well. God bless!

  • Hi. I was diagnosed with clear cell OVCA stage 1c in June 2013. As with all clear cells, it was Grade 3. The tumor ruptured during surgery and was densely adhered to the pelvic wall. 34 lymph nodes were removed and they appeared clear but I was not given a choice about chemo - got 4 opinions and all were unanimous. And to tell you the truth I would have done the chemo even if given a choice as I was scared out of my skull about the cancer. So it was 6 cycles of taxol and Carboplatin. Tough yes. Side effects yes. Loss of hair yes. But you wil get through it. I am seriously one of the biggest chickens around with medical stuff and took all the meds for side effects plus an anti anxiety and viewed the whole thing as a marathon for my life. I have not recurred cross fingers and toes. I have my next check in 2 months and will hopefully make it to the 3 year mark cancer free (they started the click on me after chemo ended). I would strongly recommend that you do the chemo. If you don't and the cancer comes back you will be more than kicking yourself. Clear cell is aggressive. Don't take chances. Keep us posted as to how you are doing.

  • Thanks I have decided to move forward with the chemo. Like you said it is very aggressive and I really don't want to risk it coming back. Thanks for your insight.

  • No one can tell you what to do but I wanted to hit it with as much as I could so that I knew I had done all my best to kill off anything, unfortunately

    Mine did recur but I am happy that I know I did all the chemo and have myself the best chance, on second line treatment now and halfway thru, having something called folfox which is better for my type. Mucinous like sunfleurys, I had my half way thru scan and there is no spread so happy with where I am! As I just had a Bowel

    Obstruction I am having a PET scan too but we are pretty comfy this will come back clear too.

    Do what you think is best for you, honestly the six sessions went by really fast and it was manageable. Good luck and all the best.

    I was stage 1c grade 1.

    S x

  • I'm staged 1c1 also. After reading all of the feedback I believe it would be in my best interest to take the chemo. I wish you well and God bless!

  • I was stage 1C 2012 no rupture it recurred in 2015. I'm quite anti chemo. I couldn't do the hair loss so chose Carboplatin only. Oncologist went through options including gem/ carbo.


  • Thanks for your input I hope you are doing well. God bless!

  • Thanks to each of you for your feedback. I have decided to take the treatments. I guess I just needed some reassurance that I am doing the right thing. I wish those of you in the process of treatment a speedy recovery and to the survivors continued good health!

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