Questions about clear cell carcinoma

[Mbaldwin3]

Hello I'm 49 and had a complete hysterectomy where they found stage one clear-cell carcinoma. My oncologist said that they got it all but wanted to do chemo to kill all underlying cells. My question is what is the rate of it coming back and where would it come back in my body? They said clear-cell carcinoma is rare and when it reoccurs it is very aggressive. Is there anyone that knows anything about the reoccurrence rate? I'm praying and believing that won't but am curious as to know more about this to inform others.

[Lily-Anne]

I recurred after three years. Clear cell is usually stage 1 when it is diagnosed. It is aggressive however you can't worry about recurrence just live each day as it comes. It may recur it may not. I wasted too much time taking my 'close shave' for granted instead of doing things I put them off. Words of wisdom I received were live each day as if it is your last plan your day as if you will forever.

Best wishes

LA

[Mbaldwin3 in reply to Lily-Anne]

Do you mind telling me where it recurred and what was your treatment plan? Thank you so much for your encouraging words!

[Lily-Anne in reply to Mbaldwin3]

I was diagnosed 2012. Had all the usual surgery including cervix removal as precaution. All looking good. Late 2015 I recurred with rising CA125 level of 47, then 102 then 277. I had a tumour in my pelvis which had attached to the bowel wall. I had 7 hours of surgery to remove the tumour and to resection my bowel with a stoma. Followed by chemo. However OC presents itself differently in everyone, so your cell mutation will be different to everyone else even if it is labelled the same. Try not to worry and get out and have some fun.

LA xx

[Choski]

I'm a clear cell lady, diagnosed after surgery in March 2016 at 1C -incredibly painful torsion Dec 2015 which was diagnosed as kidney stones !!!! My tumour had ruptured previously, and ruptured again during surgery plus cancer cells found in my abdominal fluid.

Clear cell accounts for approx 5 % of ovarian cancers but 20% in Asia for some reason.

It can be aggressive in later stages however every ovarian cancer has a very good chance of being treated successfully and in my humble opinion it's more about being aware of our type but not being over 'freaked out' !!! I've researched it a lot and I'm aware of nothing that makes me more or less susceptible to its recurrence - it's just a wait and see and get more confident with each month clear.

There's not as much research into clear cell however I understand there is a current programme in Glasgow and I also understand there may be a link with kidney cancer treatments coming up. Don't have the details so don't quote me.

You can read stats if you want, they are good for stage 1 but remember they are already out of date and are related to individual women and we are all different.

Not sure if I've been any help!

Take care and positivity is a major help

Clare xx

[Mbaldwin3 in reply to Choski]

Yes you have Clare! Positivity is what I'm living on along with many prayers! Thank you for the information! My oncologist said it "behaved" like a Kindney cancer. Does that mean it "morphs" somehow? I'm going to look into the program you were talking about. Also I'm not going to worry but be aware. Thanks again!

[angelina]

Hello I had clear cell in 2011. I had carbo/taxol chemo...it was a very difficult time to get through but well worth it as I'm now cancer free.

I still have to be aware and can ring oncology if anything is worrying me.

X🌷X

[Mbaldwin3]

Thank you for the positive words! Thank you and that is the two drugs they used for my chemo.

[Microbabe]

I am also a clear cell lady got all of my cancer out but has carbo taxol chemo as precaution ..... it's still early days for me as diagnosed in may 2016 still not completely recovered from treatment .... yes I do think about recurrence and the question of where it will come back to if it does because they took out all my lady bits and omentum .... I was told it might attach to perinium .... but I'm not thinking about that they only way to fight cancer for me is to say positive and laugh 😂 smile enjoy life .... I have been left with some rubbish symptoms which can make life difficult but hey I am alive 🤗😊👍🏻

[Flamingobeef18]

I am also a clear cell lady.

I was diagnosed in March 2014 at the age of 49 years with stage 3C. I had 6 sessions of the old carbo/taxol plus Avastin followed by debulking surgery. I then had another 6 chemos and finally had another few months of Avastin on its own. Unfortunately I have not got to the point of being cancer free and still have " suspicious " nodules in my pelvis.

I have seen the survival rate stats but my husband has always said I will be in the percentage that stays around and so far he has been correct. I have no plans to toddle off this mortal coil any time soon.

At the beginning everything felt touch and go and total panic but this has settled down over time. Now I feel I am living with a chronic rather than an acute condition and life has returned to being for the most time routine. Indeed although things are very different I do for the most part enjoy my "new normal". I can go for days without thinking about my cancer. However I do have my moments when it seems overwhelming again but these are rare and brief now.

For me I know that my cancer is incurable but you can spend a lot of time and energy worrying and it achieves nothing. For me the passage of time very supportive family and friends and brilliant psychotherapy has helped me tremendously to live with the many uncertainties.

Sorry I cannot answer your specific questions but I wish you all the very best.

[Howick01]

Target Ovarian Cancer has funded the research in Glasgow.If you can remember my story was on their website as I have stage 1c.

Thankfully have not recurred since diagnosed in 2009.

Take care xxx

[Cropcrop]

I'm a clear cell 1c3 lady, (rubbish category to be In isn't it 😊 But we are special as we are around only 5% of all diagnosed ovarian) I was diagnosed July 2014 plus hypercalcaemia and pulmonary embolism. I had a total hysterectomy including removal of omentum and removal of a 30cm cancerous cyst from my left ovary followed by weekly taxol and three weekly carbo at Christies, as a precautionary mop up, which ended 18th December that year.

I'm still clear and have an appt in 3 week with oncologist for routine bloods etc. I think there's a constant feeling in the back of our heads of 'what if' and also anything that's slightly off normal we immediately think we've got a recurrence. There's nothing to say that just because we are clear cell that we will definitely have a recurrence we can't live our lives waiting for it to come back, we have to try to have a new 'normal' life 🙂

I try not to read statistics as they can scare the pants off us, just know your body, try not to read too much into things and just be body aware and if in any doubt at all ring your CNS.

Not sure if I've helped with your question but I hope you continue to be well and enjoy your life without recurrence. ❤xx Jane

[Mbaldwin3 in reply to Cropcrop]

Thank you so much!

[devotedtolife55]

I was diagnosed with Clear Cell in 2012. I had all my "lady plumbing" removed. I already had a completely different cancer at the time, and it was found that I had my original cancer in both ovaries and clear cell in one only. I was diagnosed 1c and had 6 session of carbo only. My CA125 was 7. Touch wood, I have had no recurrence of the Ovarian Cancer and am still managing to stay stable with my original cancer.

[jdillon]

Hello!! I am also a clear cell lady.....Stage 3c. I echo what all of the other ladies have already said. This is the greatest site I have found for information and encouragement. The internet can be a blessing and a curse when you're handed a diagnosis like ours. Enjoy every 'feeling good day' and try not to let the 'what ifs' creep in for too long. One of my favorte postings on this site was 'Plan for tomorrow, but live for today'. Great advice......even for the healthy!

Hugs,

Jodi

My condensed story:

Diagnosed June 2016. Had a complete bilateral hysterectomy including omentum. 4 weeks later began 6 rounds of carbo/taxol. My CA125 was up and down the whole time, but never got below 54. I had ascites (fluid in the abdomen) so bad I had to have a paracentesis three different times to remove it. Finished first line November 1. Had follow up CT Scan on November 25th which still showed fluid in my abdomen indicating the cancer was active and I was platinum resistant. Fortunately, no visable signs of tumors. Began Second line treatment of Avastin/Doxil in December and will re-test in May. My current CA125 is at 69.

[Mbaldwin3]

Hi, hope you are doing well. Just wanted to check in with you to see if you've been retested.