Stage 1c clear cell radiotherapy treatment?

[Roobarb1]

Hi there, I am just recovering from debulking surgery, and was staged 1c3 clear cell after it all - the 3 is beacuase they found cells in my pelvic fluid as my tumour had ruptured before surgery.

I saw my oncologist yesterday and am getting 6 lots of chemo as a mop up. They were very up front that clear cell does not respond to chemo so they are them giving me 4 weeks daily radiotherapy afterwards which was a surprise for me.

Has anyone else had radiotherapy like this? Is it doable? Feel like my body has been hit by a bus, and that’s before the chemo!

I’ll go along with both treatments if I can manage them, as clear cell has such a gloomy outlook if it progresses - and both docs I saw were really positive, and knew a lot about clear cell, so I feel confident with their advice. I was just puzzled about the radiotherapy option and wondered if anyone else had this.

I had no evidence of cancer after the surgery.

Thank you in advance!

[Nickaz]

Bless you, can’t advise on the clear cell but just had my total abd hysterectomy and know how much that’ knocks you off your feet.

Hope you have a brilliant recovery and take it easy 😘😘

[Roobarb1 in reply to Nickaz]

Thanks Nickaz! I knew the surgery would be hard but oh my goodness, I am shocked by how hard! Having said that, am slowly mending, so each day is better, hope you are on the mend too! Big hugs for a full recovery xxx

[Cropcrop]

I too was diagnosed clear cell 1c3 in 2014. Mine ruptured too, I had the usual surgery and there was no evidence of disease post op, surgery was followed by carbo/taxol to ‘mop up’ also. It is true that clear cell doesn’t always respond to chemo as other kinds of OC do but it sometimes does. I didn’t have the radiotherapy but they are always coming up with new ways to treat our cancer and I’m sure they wouldn’t offer this if they didn’t think it a positive move in the right direction.

Your oncologists are being positive so I’d take that and run with it.

Well done on getting through the surgery and the chemo is certainly doable. I can’t advise on the radiotherapy but hope it’s ok for you. I have a friend who had radiotherapy following a hysterectomy for cervical cancer. She said it was easy to do, I know the circumstances are different but hope it helps you a little.

Take care and let us know how you get on. ❤️Xx Jane

[Roobarb1 in reply to Cropcrop]

Thanks Jane, it’s lovely to hear you are doing well 😊 clear cell seems such an unpredictable thing. I asked my docs “how come I got the bad one”! Their view was sometimes it’s a good one as it does tend to get diagnosed early compared to high grade serous, so I am not to think of myself as doomed despite everything I read - they were so positive, while not understating there is a tough road ahead, they really gave me confidence going forward. And you do too! And good to know the chemo is doable, I am thinking I am one third through treatment now, with my surgery done, so making progress.

Have a lovely day ❤️

[Nancy222]

I'm being treated for mets in my liver -- clear cell -- and right now I'm on chemo. One option for later is radiation. Doctors both felt radiation could be of good benefit if the chemo does its work.

Be heartened by this option. I'm in Ontario, Canada and it's been an option that's shown good results.

Hold strong!

XXOO

[Roobarb1 in reply to Nancy222]

Thanks Nancy, I’m in the UK where I had not heard of it as an option but they seemed to think it would give a good result, so I am all for it, if so 😊

Best of luck with your treatment, hope the chemo not too bad xxx

[Nancy222 in reply to Roobarb1]

I've done my first cycle (two treatments) and it's been really good so far. Fingers crossed.

And fingers crossed for you too!!!

[lynn6156 in reply to Roobarb1]

Hi,

Would you mind if I asked which area of the UK you're in that is considering radiotherapy? It sounds like somewhere that might be a bit more forward thinking and that's always useful information!

Re radiotherapy itself - when I worked at Christies I remember having lots of patients having weeks of radio -but on my ward they were all for head/neck /chest cancers so not really relevent to you. I will say they all tolerated it well (much better than chemo) .I believe it's generally tiring for everyone towards the end of treatment and of course for the pelvic area you may get bowel effects but I'd think it's doable and they must have evidence it's worth it for your stage/type.

Good luck!

Lynn

x

[Roobarb1 in reply to lynn6156]

Hi lynn, I am in Edinburgh but it doesn’t seem to be a Scottish thing as one of my consultants is moving to Glasgow and the more senior one said Glasgow does not offer it. I think it is not standard in Edinburgh either but might be because they found positive cells in my pelvic washings and the doc said clear cell tends to lurk in the pelvic area (something about gutters!) so that is why they are considering it.

Hope you are well!

[lynn6156 in reply to Roobarb1]

Interesting! Thanks for replying. I don't have clear cell but I like to know what's going on up and down the country. I asked my oncologist what her plan was if mine came back and she just shrugged. Not exactly inspiring!!

Lynn

x

[Roobarb1 in reply to lynn6156]

Jinns that’s awful, I couldn’t even get the words out to ask about it coming back, it’s in my head all the time but I can’t say it out loud! I suspect the answer would be deal with what’s in front of you just now. Easy to say, harder to live it 😊 xxx

[lynn6156 in reply to Roobarb1]

Yep - the thing is the only person that worries 24/7 about your health, is you!

I'm hopeful it won't come back, as we all are, but I have to feel like I'm doing something and that I have all the information.

I know other people who do the treatment and don't give it another thought; take each moment and get on with their life. We're all different in how we deal with it.

Lynn

x

[Harleeboo]

My daughter had 6 rounds of chemo followed by 25 sessions over 5 weeks of radiotherapy ,doable and is now doing well

[Roobarb1]

Thanks harleeboo , that’s good to know, it sounds like what they have planned for me too. Maybe this is a new thing, and if it is doable, then that’s brilliant! Hope your daughter is keeping well & you are both over the stress of all the treatments xxx

[Lizz49]

Hi there,

Great to hear you have had your surgery and you'll be surprised at how quickly you recover from it! I'm sure like me you were just glad to have the thing removed and then move onto the next step of treatment. I also have Clear Cell stage 3b and whilst my onc confirmed it sometimes doesn't respond to chemo she also said that some clear cell ladies have got to 5 years and been discharged, so despite what I've read and understand about the prognosis I'm staying positive Its great that you were NED after surgery and as you said the chemo is just to mop up any cells that may be lingering, so its worth doing.

I also asked my onc about radiotherapy and she said its not part of the standard treatment for CC, but I do believe it can help prevent recurrance and in Canada for example, it is part of the standard treatment. If your oncologist has offered it I would definitely take the option, and its good that they are being very proactive.

I'm currently on carbo/taxol chemo and feel fine, other than hair loss and a bit of lower backache (trying not to worry to much about that) its been really doable and not as bad as I expected, however I've got cycle 3 on Monday so it will probably hit me like a train after that!

Best wishes for a speedy recovery!

Liz xxx

[Roobarb1 in reply to Lizz49]

Hi liz, thank you for reply, it’s great to hear your progress and so pleased chemo is as bearable as it can be. Best of luck with cycle 3 , and hopefully the rest will be straightforward too.

My doc says she will monitor me for 20 years, I liked her positivity and the sound of that timescale! Although a wee voice inside knows the future is not certain for any of us.

Funny the radiotherapy is not standard - every little helps as far as I am concerned to blast the pesky little critters 🙂

Best of luck for Monday, then you are halfway through 😀 xxx

[Neona]

In Canada and USA clear cell is often treated with radiotherapy and appears to be successful so definately would go for it.

[Roobarb1 in reply to Neona]

Thank Neona for taking the time to reply, I really don’t want this to come back, so think I will definitely go for it if I can manage x

[Susansew]

I had a total hysterectomy for uterine cancer, and my cancer was spread into the peritoniam when it was removed. So I became 3c. I had 3 rounds of carbo/Taxol and 25 doses of radiation therapy, and now 3 more rounds of carbo/Taxol. The radiation was not hard, but got tired in the end. Now, more than a month after ending radiation, my hips have begun to seem weak when I walk a distance. So far, that's what it has done. Plus given me worry about secondary cancers.

[Roobarb1 in reply to Susansew]

Thanks for the reply, I do worry about the toll on my body but am so anxious about recurrence as well. I hope you manage your last 3 sessions of chemo without too many more side effects, it is such a worry isn’t it.

Wishing you every success with the rest of your treatment and a good result at the end xxx