Abdominal wall endometrioma - clear cell carcinoma

[StrongMama]

Hi all - nearly 5 weeks ago, I had surgery to remove a mass from my abdominal wall. Two weeks post op, we discovered that the tumour had some clear carcinoma cells surrounding some of the mass. Has anyone had any experience with this??

[Choski]

Hi StrongMama

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

My mass had previously ruptured, ruptured again during surgery and cells found in my abdominal fluid too....my surgeon didn't give me the choice of not having chemo. It is possible to have Microscopic cancer cells which can't be seen even by microscope and grade 3 is recommended for zapping.

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.

There are quite a few of the clear cell type here so you are not alone 'type wise' !! And everyone here is caring and helpful. We are all here for each other.

Have you been staged yet? Write all your questions down so you can go through them all with your oncologist and team.

Take care

Clare xx

[Cropcrop]

Hi strongmama, welcome.

I ditto everything Claire says, I too had clear cell carcinoma also caught early and was treated with carbo/taxol. The difference with me was I had my taxol every week for 18 weeks (much less aggressive) and carbo every three weeks (6 sessions but not so good). But It's worth it all in the end cos we're still here to tell the tale. I'm now 2 years in remission and counting, so try not to worry too much, it's scary but there is hope. Take lots of care we're all here for you ❤️Xx Jane

[StrongMama in reply to Cropcrop]

Wow Jane - Thank you so much for sharing and giving me hope. 2 years in remission - amazing! And I agree, any treatment that works is worth it. Indeed, the early days are scary, the waiting, and the unknown. I will learn what carbo/taxol is all about. How did you function while you were receiving this treatment (if you don't mind me asking?).

Hugs - Helena xo

[Cropcrop in reply to StrongMama]

Hi, the weekly taxol (paclitaxol) was fine, just a bit of fatigue and very slight nausea, but the anti nausea drugs really work. Because I had it weekly the dose was reduced, the total doseage by the end of treatment was the same as if I'd had it every 3 weeks, this way of administering the drugs has been shown it to be less aggressive to the patient. I took part in a trial (ICON 8) which researched the best way to give the drugs because they know they work.. The carbo (carboplatin) was a different kettle of fish, I had this every third week, the side effects were more dramatic but only really two to three days of feeling totally rubbish but again the anti nausea drugs do take the edge off. Fatigue is something to be aware of with the carbo, it can knock you off the rails and it does take a while to get back up to full speed again. The biggest issues I had with normal function was keeping clear of people with illnesses because your immune system becomes a thing of the past (it soon comes back once treatment is finished) and of course losing my hair was fairly traumatic but both the chemotherapies do make you lose your hair, I found a fantastic wig web site (simply wigs) you save a fortune at the hairdressers 😄 Which pays for the wigs and having new hair post treatment was an adventure too. You are in a scary place right now but there's a whole big adventure ahead of you and there are lots of us who have been there and done it. Try to be positive, they say it really helps, and be strong (you already are even if you don't know it). You will meet some lovely people along the way, I've made some new friends on my adventure. Sending big virtual hugs and lots of love ❤️xx Jane

[lesleysage]

Hi Helena,

I was diagnosed with clear cell stage 3c in May 2011, total abdominal hysterectomy plus adjacent lymph nodes out followed by the standard 21day carb/taxol regime for 6 cycles. Recurrence in Jan 2013 in the remnants of the lymphatic system not removed - tumours close to the aorta and renal artery. Addenbrookes deemed it "too dangerous" to operate so close to the heart and kidney but my GP decided a second opinion needed to be asked for - West London Gynae Cancer Unit at Queen Charlottes - they deemed "not easy but we think it is possible but more importantly we feel it is in your best interest you let us try". That was Feb 14th 2013 (yes, Valentines Day!). Complete success because they removed all visible signs of the tumours. Followed this, back through oncologist at Addenbrookes, with 'dose-dense' carbo/taxol plus 12 cycles Avastin, finishing in Aug 2013 and so far, no recurrence...amazing to all concerned/involved. My GP's advice all the way through was that "your job is to cultivate healthy Lesley cells - nothing else" and through all the ups and downs we all experience daily that is what I've doggedly tried to bring my focus back to. His logic is "the best, healthiest platform you bring us medics, the more options we can consider."

So,, Helena, hang on in there, focus on growing healthy cells, notice the hard work to get your mind back to positive thoughts, enjoy all you can in life and always remember those grotty stats on clear cell are based on what has happened in the past, i.e. are history. We are all making tomorrow's history and we can make this better...

Hope today is a good day....with so many more to come.

Lesley x

[StrongMama in reply to lesleysage]

Gosh Lesley - I appreciate you positivity, some of the silly comments people are making are starting to irritate me and that is NOT where my energy should be used right now (or ever), so thank you for reminding me to maintain a healthy outlook.

You have been on quite a journey! GREAT to read that there has been no recurrence.

Let's see where this journey will lead.

All the best x Helena x

[Shellygirl]

I was diagnosed with clear cell carcinoma in may had my last chemo in October ... the journey isn't easy but it's doable ... I was given a choice to have chemo or not as I was 1c1 rupture in surgery .... it was the hardest decision of my life I was getting better after op where they took everything including lymph nodes and omentum.... I decided to have chemo lost all my hair including eyebrows and eyelashes.... they give you a huge list of side affects as everyone is different you may get some or non ... I had random joint pains which affected my sleep ... but you get through it.... plan to do something fun when your feeling ok you will get to know your pattern and be able to get out and about ... all the best for your treatment .... there are some wonderful ladies on this site I found it so helpful 😃

[Millie-May2]

Hello

I was diagnosed with stage 3c endometrial ovarian cancer with clear cell components in August 2011. I had debulking surgery and carbo/taxol. I have remained well since completion of treatment in February 2012; I am now healthier than I have been for many years.

My advice is: ignore statistics, don't trust Doctor Google or any of the quack remedies available on line and accept any support you are offered.

Wishing you the very best outcome.

Millie xx

[Martina18]

Hope to give you some encouragement: In June 2013, I was diagnosed with clear cell OC grade 3 stage 1c (one oncologist for 2nd opinion put me at 2c). I was 51. I also had endometriomas. The tumor was almost 4 cm, was densely adhered along with the right ovary to the pelvic wall and ruptured during surgery. A real mess , I pictured the surgeon wrestling with this mass to get it out. I had a total hysterectomy, bilateral tubes and ovaries out, omentum removed and 34 lymph nodes also removed. Surgery recovery tough. Then 6 cycles of carbo/taxol ending late November 2013. I did have to have a dose reduction after 4th cycle bc of neuropathy. One doc recommended radiation but I did not do that, was scared out of my gourd by the potential permenant side effects. Anyway, I just passed my 3 year out of treatment check and have had no recurrences to date. I still worry constantly about relapse but hope that will get better with time if I remain well. My main message is to do the chemo, hit it hard, clear cell is aggressive and fast-growing, most of the side effects of the chemo will be temporary, the hair will grow back and all, just watch for the neuropathy as that can become permanent. Rest and treat yourself to done enjoyment when you are feeling well between cycles. I was not well enough to work at all during my treatment but some ladies are able to.