Chemotherapy or not?

[Lara55]

Just been diagnosed with ovarian cancer stage 1c endometriod adenocarcinoma grade1. Had surgery for ovarian cyst 10cm big. Blood test c125 was normal so wasn't expecting to find its a cancer...cyst burst during surgery, spilling cancer cells. The washings was done after removing cyst. Just a typical cels was found in washing. after second surgery it was all clear and washings was clear. Now I am left with a choice to have chemo or not? I'm 37 years old and remaining ovary and womb was left intact during surgery.

[keeponkeepingon]

I was the same type and grade as you but stage 2b , my consultant advised me to have 6 rounds of carbo/ taxol, he actually said to me if you were my wife I would want you to have it. I went ahead and so far so good. Obviously having chemo is a personal choice. There is a school of thought that chemo is not affected on low grade but I was treated at the Royal Marsden and have every faith in them. My consultant said it was worth it. Best wishes and Good luck with whatever you decide.xx

[Lara55 in reply to keeponkeepingon]

Thank you for your reply. It's so much worries in your head I just wish they never give me the choice but tell me what to do. I'm worried going to menopause and having no hormonal replacement therapy because my cancer is estrogen sensitive. As I had previous 3 depressions that could hit my mental health very hard.

Glad to hear u went through it and feel well xxx

[Sunfleury-UK]

Hi Lara, this is a particularly tricky situation many women with 1C face and you will find previous useful discussions within the site if you use the search box. The NICE guidelines are for 1C due to capsule rupture to have single agent Carboplatin... in some circumstances, Taxol is also advised. There is a variation of advice which can be really difficult as a patient (in the midst of this whrilwind) to begin to make sense of...

I was diagnosed similarly to you aged 39 (5 years ago), 1C grade 1 but Mucinous type and my Oncologist advised single agent Carboplatin... I had been led to believe he would prescribe Taxol too and so was a bit thrown, not least when he then left both options up to me so I feel for you. My GP was really helpful in talking this through and I would also encourage you to use the expert helplines offered by Ovacome, Target Ovarian CAncer and The Eve Appeal. You will also find some specific comment about this on the TOC Ask the Expert part of their website.

The ambiguity (I think) comes from there being relatively small numbers of IC cases and two large trials which came to slightly different and unclear conclusions about the benefits of chemo on this particular stage, not least as there are a number of different types and sub-groups of 1C. In other countries, I believe both Taxol and Carboplatin are routinely prescribed.

We were trying to start a family when I was diagnosed and so I was referred additionally to a link fertility consultant to discuss the implications of chemo on fertility. If you think this might be relevent to you, do please free to DM me.

All chemo is a balance between potential risk and potential benefit and this will be specific to you as an individual.... Your consultant should be helping you with this. You should also be aware that it is very reasonable to seek a second opinion.

Ive presumed you are in the Uk, perhaps wrongly....

Very best wishes Sx

[Sunfleury-UK]

For example, searching '1C chemo' will find a lot of previous discussions such as:

you may find some helpful comments & contacts here: healthunlocked.com/ovacome/...

healthunlocked.com/ovacome/...

Sx

[Lara55 in reply to Sunfleury-UK]

Thank u Sx for such an Amazing info.

[Cropcrop]

Hi lovely and welcome. I was diagnosed 1c3 clear cell carcinoma in 2014. My 30cm cyst that the cancer was encapsulated in burst during removal and even though both abdominal washes were clear my surgeon recommended chemo just to make sure to mop up any potential stray cells they couldn’t see, I had both carboplatin and taxol, I had my last chemo on December 18th 2014 and I’m still here to tell the tale. I was 59 at diagnosis so the menopause had already had its way with me 🤨 and I had no future plans regarding my fertility so my decision was a relatively easy one to make.

It is a really big decision and one you need to make armed with as much relevant information as you can get. I, personally, don’t think google is a good source for your information, the data there can be extremely out of date and consequently not much use in helping you reach your decision.

I had my chemo at the Christie so I knew I would be well looked after but all cancer centres tend to follow the same criteria with the carbo/taxol combo. I would suggest you speak with the oncology team your surgeon will refer you to and also ask your surgeon for their informed advice. You should also be allocated a Macmillan nurse who will be only too happy to discuss this in depth with you and offer support.

I wish you well with this and hope the conclusion you reach is the right one for you, hindsight always being a wonderful thing. Let us know how you go with this. Take care ❤️Xx Jane

[Sunfleury-UK in reply to Cropcrop]

I think some of the slight variations in prescription will often relate to sub-type & grade.... I was also treated at The Christie but with both Mucinous type and low grade & I was advised just Carboplatin....Both my type and grade are known to be less responsive to chemo so this will be a key factor in consideration. Hopefully there will be members with some particular info about chemo and early stage endometriod adenocarcinoma grade which Lara has...

Glad youre doing well Jane, best wishes XXX

[Caroles1]

Hi love,

I am older than you and had already had my family, so my choice wasn't a choice really. I had a full hysterectomy and removal,but had ascites, so the cancerous cells were spreading.

The best choice was for me to have carbo/taxol and I have been NED for coming up 3 years. You have to work out what is best for you.

I wish you all the best,

Carole xxx

[Lara55]

Thank you for honest answers. It's like an emotional rolacoster. I have until after new year to decide.

How do they do 3 months check ups ? My c125 was normal when I have cancer so how do I know I'm ok?

[Hidden]

You do have to get your head round a lot of info when you have this diagnosis, don't you?

If your cyst hadn't burst, chemo wouldn't have been suggested. You'd have been 1b. As would I.

I had a similar surgical rupture story to you, except with more bits out, different type of cancer (serous - the most common type) and different grade: 3. Also at 1c. Also with clear washings.

In the case of women like me, both the type and the grade, the case for chemo seems pretty clear-cut and I had single agent carboplatin, which is what the NICE guidance suggests should be offered.

You've had lots of good advice already, but here's my thoughts.

This interesting and encouraging article suggests there might not be a clear benefit to chemo for your cancer type, as your cancer is grade 1.

cancernetwork.com/ovarian-c...

The key question, it seems to me, is how anxious you are to preserve fertility. Chemo may have some impacts on it.

If that's not an issue, you then need to decide whether or not to have mop-up chemo in case there are any invisible cells as a result of the rupture.

Whichever route you take will be a good decision. Like all decisions things can turn out differently, of course.

Might the CA125 have been normal as there was little cancer? Has someone suggested it wouldn't be a reliable marker going forward? You'll be monitored whatever you decide to do, and there are various ways to do this.

I wouldn't worry too much about menopause. It's useful to know your tumour was oestrogen receptive. Many, many women don't take HRT when they get to menopause and are fine. If there are problems, there are other things which can be used.

The future will be different for you from the past.

I wonder if your oncologist is sitting on the fence a bit? A second opinion could be helpful. Could you talk it through with your GP? One of the helplines?

Whatever you decide to do, I wish you the very best with it. Remember you've got a lot on your side: you're young, this was diagnosed early and it's low grade.

Don't let it spoil the festive season for you! xxx

[Sunfleury-UK in reply to Hidden]

interesting study... thanks so much for link Sx

[Hidden in reply to Sunfleury-UK]

Never thought I'd be delving into all this scientific literature!

There are many other things I'd rather research, but I guess we have to go with the hand that's been dealt us!

xx

[Sunfleury-UK in reply to Hidden]

for sure!!!!

I do think that this type of study which teases out the difference in response of sub-types /stages & grades to various drugs /treatment protocols will be both increasingly common and advantageous. Recognising that OvCa is a collection of different diseases was the first step and studies such as this move us towards more individual and therefore effective treatments.

XX

[Lara55 in reply to Hidden]

Wow thank you for really helpful article. That's really interesting to read and know. My doctor said kind of the same that I would have more disadvantage then benefit from chemo at my age, and then she send me to chemo consultant who confused me to bits because she just wanted to follow full on chemo 6 cycles. Xxx

[Hidden in reply to Lara55]

Glad you found it helpful.

One of the things I've come to realise about doctors is they sometimes tend to be a bit fixated on their own specialism and don't always look at the patient as a whole person.

Plus there's so much info we're not familiar with, delivered at speed, it's easy to get confused!