Clear cell stage 2 ovarian - should my mum have chemo?

[HannahBee]

My mum had a large cyst removed from her right ovary (which was attached to old endometriosis onto the pelvic wall). Also had full hysterectomy too.

The cyst ruptured during surgery and so the consultant has recommended carboplatin / Taxol chemotherapy 6 cycles in 3 week sections. They completed several washes during surgery to try to eliminate any cancerous cells remaining.

There is no evidence of cancer anywhere else and consultant quite confident that it was localised to part of the cyst, they are only recommending chemo because of the rupture and because it was attached to the pelvis.

The oncologist explained that the chemo drugs are not as effective for clear cell carcinomas. My mum is trying to weigh up having chemo (when potentially all cells removed and it may not work anyway).

Has anyone else been in this situation? We’ve heard of some other preventive treatment options such as mistletoe therapies, wondering if anyone has looked at any holistic alternatives?

Thanks so much for your help

[Ugglan]

Hi Hannah, So sorry this is happening to your mum! I have clear cell oc that was contained within a cyst. I had six treatments of carboplatin as a single agent, but if the cyst had ruptured I think I would have been given taxol as well. I know clear cell is often resistant to chemo, but sometimes it’s not and there is really no way of knowing. We are all different, I worried a lot about not having taxol and wanted as much treatment as possible, just in case some cells were left and I had this one chance of killing them before they settled. I know other women have choosen differently. xx Lisa

[HannahBee in reply to Ugglan]

Thanks so much Lisa! It’s really reassuring to hear from others at this time experiencing similar things, and so true that everyone is different in their choices. Was the chemo really horrendous?

[Ugglan in reply to HannahBee]

The chemo was hard, but not as bad as I imagined it would be. I was never sick, but really tired and had bad indigestion and other aches and pains. No hair loss. I went into menopause with the surgery so some of my issues was probably related to that as well. I had my last chemo in the end of july and started working again in september. Now, six months later, I feel mostly like myself again. Apart from the big scar and all the worrying about it coming back. All my best wishes to your mum whatever she chooses!

[HannahBee in reply to Ugglan]

Thanks for the info Lisa. And wishing you all the best in your recovery and for the future x

[lesleysage]

Hi Hannah,

Mine is clear cell (and was stage 3) but at the second occurence and second operation, the surgeon got everything out (Feb 2013); then I had dose-dense carbo/taxol + Avastin. From recent readings, I too have read that clinicians are beginning to think that it may not be worth giving chemo for clear cell. There is a current UK trial on using the immunotherapy drug, Pembrolizumab, but it will be a while before the results are published. And as Lisa says, everyone's cancer and body is different.

So, why not ring the Ovacome Support team, Anna and Julia, and ask them....freephone 0800 008 7054? They have an enormous amount of knowledge, experience and contacts.

Warm wishes and good luck. Lesley

[HannahBee in reply to lesleysage]

Thanks so much Lesley, and we will definitely give them a call. My mum is finding all this information super helpful.

[Flamingobeef18]

Hi Hannah

I was diagnosed with clear cell ov stage 4 back in 2014. My prognosis was poor at diagnosis and initially inoperable. I was warned that clear cell was not easy to treat.

However I have responded very well to multiple courses of palliative chemo , proven by the fact that I am still here!

My understanding is that the percentage of people who respond well to chemo is less if your ov is clear cell but that does not mean that your mum will not be in the group that do have a good response.

For me chemo was the right choice but it has been tough at times and is not for everyone.

All the very best to both of you

Juliax

[HannahBee in reply to Flamingobeef18]

Thanks Julia for the info, and so glad that the chemo is working for you. Xx

[Grace123]

Hi Hannah I was diagnosed with clear cell OC stage 1c3 in Nov 2015. I had a total hysterectomy followed by 5 cycles of carbo-taxol. (My cyst ruptured prior to surgery and cancer cells were found in the peritoneal washings, which I think is called positive cytology.) (I only had 5 out of the 6 chemo cycles as I was struggling with the chemo & chose not to continue, especially as I had been told only 8% of women with my diagnosis get any benefit from chemo.) I found out I had a recurrence in Sept 2019 and am currently waiting to go on the PEACOCC immunotherapy trial, which is a phase 2 trial. My oncologist has said that clear cell doesn't tend to respond well to chemo, and the fact that my cancer has recurred within 5 years would reinforce that. Since Sept 2019 I have had 2 inconclusive biopsies due to the positioning of the recurrence, ie the tumours are very difficult to access. I had another scan on 3 Jan and my oncology team are surprised that the spread of tumour growth is much slower than expected for clear cell. I have been taking Chinese herbal medicine since finding out about the recurrence and so think that probably the Chinese medicine's responsible for the slower growth. If I had known 4 years ago what I have since learned, I would not have opted for chemo, but used different complementary therapies, including mistletoe, to support my immune system better to prevent recurrence. Your mum may want to ask her oncologist about any data on the longer as well as shorter term risks as well as benefits of having adjuvant chemo, in order that she can make a more informed decision. I wish you both the very best with this journey, & as you can see, you're not alone - this is a fantastic forum of help and support. xx

[HannahBee in reply to Grace123]

Thanks so much for your message Grace, my mum found it really helpful. Hope the immunotherapy trial goes really well x