Decision to make: Hello everyone, first time... - My Ovacome

My Ovacome

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Decision to make

Catfeeder profile image

Hello everyone, first time posting, newly diagnosed with stage1c endometriod low grade ovarian cancer and treated with surgery 6 weeks ago.

I now have a decision to make on going ahead with Carboplatin even though the chemo will not make much difference to the rate of reoccurrence, which I am lucky is quite low.

Any advice, tips etc please?

Thankyou

27 Replies

Hi I was stage 1a endometriod in July 2018. No recurrence, ca125 checked 3 monthly, no chemo offered as 1a. Ca125 hovers around 12.

But....hand on heart, if I'd been offered chemo I think I would have took it, if only to know I'd tried everything if it does return.

Glad your surgery is over, you must be so relieved and good luck with your decision.x

Catfeeder profile image
Catfeeder in reply to Twink333

Thankyou Twink333

I forgot to mention the chemo is on offer as the tumour ruptured during the operation and cancer cells were present in the fluid that leaked out.

Glad you have had no reoccurrence

Take care

Twink333 profile image
Twink333 in reply to Catfeeder

Hi catfeeder yes nothing was found in the 'washings' , so staged at 1a and standard follow up are just blood tests. Stat wise this makes sense, but I'd probably make an illogical decision.

Have you been offered scans in the future if you decide to watch and wait?

Catfeeder profile image
Catfeeder in reply to Twink333

Hi, yes blood tests and scans as necessary wether I take the chemo or notthanks x

Mammi profile image
Mammi in reply to Catfeeder

Hi back again as just saw that same as me your tumour ruptured.That determined I should have the chemo to mop up any escaping cells .I think if I hadn’t I would have been forever worrying. What are a few weeks of chemo in exchange for the rest of your life🤔Dee x

Catfeeder profile image
Catfeeder in reply to Mammi

Thanks Dee x

Cbyrdie profile image
Cbyrdie in reply to Catfeeder

I was 2b only because my tumor ruptured. 6 round carbo/taxol, almost 5 years later and after a lapband removal with di Vinci rebot, every hole I had grew a tumor :(

Catfeeder profile image
Catfeeder in reply to Cbyrdie

SOrry to hear, hope you are taking carekaren

Hi cat feeder, I too am 1c but high grade.wasn’t really given much of a choice after surgery just went straight into 5mths of carbo/taxol.Was told that althoughNED after surgery my tumour had leaked so chemo was just as a safety measure.18mths later I feel that I worry slightly less about reoccurrence but every bodies circumstances are different so discuss with your consultant , they know best! Whatever you decide will be steps forward so go for it 🤗Take care. DeeX

Catfeeder profile image
Catfeeder in reply to Mammi

Hi, thanks for replying and for adviceKaren x

Hi, Sorry for you but glad you have found us. I too was 1c hgs but ended up having 2 ops because it was found during risk reducing oopherectomy. Had everything else removed and was given the option of chemo. I had already had 2 courses of chemo for breast cancer. I decided to go ahead with the Carboplatin which was not too bad compared to previous taxane based chemos. However we are all different. But I do have peace of mind knowing that I did belt and braces. Best of luck Zsu x

Catfeeder profile image
Catfeeder in reply to Zssu

Thankyou, take careKaren x

Hi Catfeeder,

I was in a similar position to you, though my endometrioid OC was stage 1A (also low grade). My oncologist gave me the option of chemo and I decided to take it. Even if it only reduces my risk of recurrence by a couple of percent, I am still fairly young and wanted to throw everything possible at this thing to ensure it doesn't come back. Once OC recurs, it is very difficult to cure.

I had 6 cycles of Carbo/Taxol and do not regret it. If I had been staged at IC, for me, it would be a no-brainer. Those microscopic cells travel easily through peritoneal fluid and like to seed in organs. Chemotherapy helps kill these cells.

Wishing you all the best in your decision-making!

ARamage profile image
ARamage in reply to NotThatGirl

I agree with all that is being written here. I was diagnosed with Endometroid Cancer four years ago. I was stage 2c, so I really did not have any option, but to take Chemo, especially if I wanted to have "peace of mind." After my surgery, the doctor told me, "If he had to stage me now, I would be at a Zero." He did a lot of extra work and removal of tissue that was questionable. Still, cancer was "out and about" in my abdomen. The idea of Chemo frightened me. The thought of losing my hair was sorrowful, but I would do it all over again in a heartbeat. I've been NED for four years this summer. I'm very active and my hair came back in quickly. All that goes with Chemo, and there is a list, reverses pretty quickly once it is stopped. I still have some numbness in my feet from the Taxol, but I can "live" with that. Wishing you the best.

Catfeeder profile image
Catfeeder in reply to ARamage

NED well doneThankyou

Take care

Thankyou for your advice, I like the "throw everything at it"Take care

Hi I was diagnosed as Endometroid OC, grade 2 stage 1C last year, The oncologist explained that there is only one chance at a cure and with chemo I was giving myself the best chance. There were some cancer cells on the outside of the ovary hence 1C as opposed to 1A. My cancer was also CA125 sensitive and once I had my surgery it came back to normal. I did 5 cycles of Carboplatin/Paclitaxel. Supposed to do 6 but just not able for the last one! The oncology team were very happy that I had done 5. that was last summer. A year later My ca125 is normal, I am checked every 3 months . Best of luck,

NotThatGirl profile image
NotThatGirl in reply to Loumar

It's so nice to hear you're doing well, Loumar. :)

Catfeeder profile image
Catfeeder in reply to Loumar

Thankyou Loumar, keep doing well with your ca125 checksTake care

Hi and welcome to the fantastic gang that nobody wants to join but we’re all so glad we did.

I was diagnosed stage 1c3 (now would be graded 2) in 2014 with a huge clear cell carcinoma of the left ovary. My tumour ruptured during surgery too, they routinely do fluid washes of the abdomen both before and post procedure neither of mine showed any nasties lurking but because of the rupture (and the nasty clear cell bit) we agreed chemo would be a good mopping up belt and braces plan and I had both carbo and taxol. None of the treatments is a barrel of laughs and there are some quite unpleasant side effects but I’d do it again should the need, hopefully never, arise. I felt it gave me peace of mind for the long term. Happily I’m still NED 7 years on.

Hope you come to a decision you’re content with lovely. Take care and stay safe and well ❤️Xx Jane

Catfeeder profile image
Catfeeder in reply to Cropcrop

Thankyou Jane, and so right about not wanting to join but so gad we didNED 7 years on, fantastic,

Stay safe

Karen

I was 1C and took the chemo option. If they suggest it, I’d opt in.

Catfeeder profile image
Catfeeder in reply to Leniko

Thanks Leniko

For the peace of mind and the questions that will arise if it comes back and you did not do EVERYTHING you possibly could...........you would be kicking yourself and saying forever WHAT IF...........at least I would........

Thankyou for your thoughts

Knowing the nature of this cruel disease - I would do it. Live with no regrets

Catfeeder profile image
Catfeeder in reply to Lind58

Thankyou for your wordsTake care

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