SHOULD I INSIST ON CHEM

[Ormsary]

Hi Everyone

I am new to this site having posted on the MacMillan Forum and being directed to this wonderful site by another member.

I was looking for advice I was diagnosed with Clear Cell Cancer of the Ovary in 2011, I underwent a full hysterectomy but as my Oncologist at the Beaston advised they had caught the cancer early (it was stage 1C and it had not appeared to have spread) and with clear cell cancer Chemo is not always successful, he advised not having chem. just scans and blood tests every 6 months. Unfortunately in April this year I had a recurrence and a 6cms mass (again clear cell cancer) was removed from outside my bowels. My problem is that I will be seeing my oncologist tomorrow and I am sure he has intimated that again he will not recommend Chemo. Has any of you ladies had the same cancer and not be offered chemo. or had a recurrence and still not had chemo, I know chemo is not a walk in the park to put it midely and if I can avoid it would do so, but I guess I just need reassurance that I am doing the right thing. The cancer came back after 4 1/2 years, what if it comes back again and this time it can not be operated on.

Any advice would be appreciated.

Thanks in advance

Ormsary

[Lyndy]

If you have time before your appointment you could ring Ruth the Ovacome nurse specialist..see their website. She will know the low down on your kind of cancer and will give you all the info so that you can weigh up the options.

If they offer chemo you can say 'l would like to think about it' if they don't you can go back and query it if Ruth suggests it should be an option.

Hopefully they've caught it so early again that you won't need it but I know what you mean about trying to make the right decision! Best of luck to you xx Lyndall

[Hidden]

I would also ring Ruth the Ovacome Nurse tomorrow before your appointment if you can do this, Ask some questions, why not recommend Chemo, would it not mop up any little bits he cannot see? There is also nothing stopping you from getting a second opinion if neccessary. I wish you the best for your appointment

[angelina]

I had clear cell cancer same stage and was given carbo/taxol in 2012. My surgeon and oncologist told me I needed strong cocktail of this chemo as clear cell is very difficult to treat.It was a very difficult time and at times I felt like giving up with the chemo but am pleased to say I haven't had a recurrence and should be given the all clear in December. I hope this is some help to you for your next visit.

Best wishes

Lynda xx

[Nesie237]

I live in California, not sure how things are done there, but I do hope you will ask about and consider chemo. It is awful but if the cancer has returned, keep it from coming back again! Best wishes, Nesie 237

[Bonnie11]

Hi I think you should ask about radiation. There is growing interest in its use for the epithelial sub types. It's used more frequently in Canada as front line. Search "team inspire " a US form like this and you will find more information.

[Lily-Anne]

I was diagnosed with 1C clear cell in 2012. I was offered chemo and was told as clear cell is fast moving chemo is effective. I had one dose, but there was no evidence of disease so chemo not measurable. I recurred 2015 and had three doses of chemo.

This may help

LA

[Sunfleury-UK]

You might also request a second opinion from a large centre eg Royal Marsden / Christie etc... It's a very standard thing to do. Again would echo the suggestion to discuss this with the Ovacome helpline Sx

[Howick01]

Hi I was diagnosed with clear cell stage 1c with rupture 2009 and was given 6 rounds of Carboplatin Paclitaxel with no recurrence or problems.My oncologist trained at the Beatson .I think the modern approach for low stage cc is not to give chemo.There is funding granted for research in cc by TOC and it is on their website just now along with my story.

I think I would definitely want chemo.

I wish you all the best xI

[Choski in reply to Howick01]

I understand that as clear cell is grade 3 cell that it is automatically a candidate for chemo

Clare x

[Sunfleury-UK in reply to Choski]

NICE standard guidelines are that 1c as well as others staged 1 but that are grade 3 are treated with chemo (Carboplatin only). Obviously there will be some circumstances and types that may have different treatment options, Sx

[Grace123]

I also have clear cell diagnosed at stage 1c, just like you, in Nov 2015. I had a hysterectomy, including removal of the momentum & cervix. I was then offered 6 cycles of carboplatin & paclitaxel chemotherapy. I requested a second opinion with a leading medical oncologist for OC & he agreed that this is the best treatment plan. He also told me that only 8% of women with my diagnosis will benefit from chemotherapy, but strongly advised me to have it as I may be in that 8%. This treatment plan is also written in the NICE guidelines, which all oncologists should be following, & so I strongly urge you to get additional support. I agree with others - you should definitely talk to Ruth at Ovacome, and also try to get a second opinion, & possibly have your treatment transferred, to one of the main cancer centres as someone else has suggested, e.g. the Christie in Manchester or Royal Marsden or UCH in London. You may also want to put your question to a panel of medical experts in OC via this link: targetovariancancer.org.uk/.... Obviously you won't have an answer before you see your oncologist, but you can always make another appointment with them & go armed with other expert opinions. I really want to acknowledge how hard it is to do all of this kind of stuff when you're having to deal emotionally with the worry of the cancer having recurred - my heart goes out to you - so please take all the support you can get - there was a time when I was ringing the Macmillan support line very often - & they're so lovely & helpful - if you can get to a Maggie's Centre for a support group session, or to express your feelings & situation - that would be great too, though I know this may not be possible. Sending you lots of love and may you get the support and outcome that's best for you xxxxx Sundra

[Ormsary]

Hi Ladies

Just wanted to say a big thank you for all your kind advice and responses. I have now seen my Oncologist and have also spoken to Ruth. The upshot is that although I have Clear Cell Cancer, it is not behaving as aggresively as would normally be expected. I am therefore to be monitored very closely with 3 month blood and check ups and 6 months scans for the next five years and to be monitored over a 10 year period. Of course my Oncologist can give no assurance that it will not recur again, but at least this way if it does, then it will be seen early and I will then receive radiotherapy. My Oncologist himself consulted with other experts because of the nature of the cancer I have and all came to the same conclusion. Thank you again ladies for all your kind words and support and I wish you all the best xx