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Endometrioid ovarian cancer

Hi all

I have just been diagnosed with endometrioid ovarian cancer stage 1c. Lymph nodes were removed & were fine. I have been told that because there were cells on surface on ovary I need to have chemo as a “belt & braces” approach. Has anyone else been in same position?

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Hi Caryl,

In most cases women with 1C are prescribed chemo for this reason and this is standard NICE Guidelines (if you're in the UK). Sometimes there is a difference eg whether single Carboplatin or combined Taxol & Carboplatin which is usually due to the subtype and grade although there can be differences in standard treatments in different countries. There are also some situations when someone with 1C with specific sub-types & grades may be advised that no chemo is appropriate.

If you use the search box (top right) and put in '1C Chemo' you'll find that there is quite a lot of discussion about this and it may be helpful to you. As chemo is always a balance of potential risk versus potential benefit, when surgery is considered fully successful, starting chemo and being involved in deciding on this treatment can be difficult.

I was dx 1c grade 1 (mucinous) in 2012. After surgery I was told NED (no evidence of disease) and like you, chemo would be 'belt & braces'. I had single Carboplatin x 6 and have been NED since.

Best wishes, SX

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Welcome to the party 🎈

I was diagnosed 1C in 2012 with endometriod OC. CA125 was 34

Not as lucky as some. In 2015 and 2017 I recurred. I believe it was stress related

Good luck with treatment do let us know if you have any questions

LA xx

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May I ask what Grade and cell type did you have? Example I had stage 1C Grade 1 with well differentiated cells. I had a full hysterectomy and 3 rounds of carboplatin and I’ve been on depo provera birth control shot to keep my estrogen in line. No hormone therapy replacement. Next month will be 1 year. Did you have a hysterectomy? Chemo? Anything to keep estrogen down after? Lastly, where did you have a reoccurrence the 2x and what was the outcome? Sorry for so many questions. It’s rare to find people with the same diagnosis as we have.

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I had mixed histology, g1 and g3. I had curative treatment (ha ha) of removing omentum, cervix, hysterectomy, biopsy from sigmoid colon, bowel. Followed by carboplatin. In 2015 I recurred in the pelvis, an isolated site, removed tumour and had bowel resection for temporary stoma. Followed by carboplatin, still considered curative. I have since then found out once it recurs it is no longer curative despite their optimism. As told to me by Prof F. In 2017 I had a low abdominal pain expected due to a parastomal hernia and was being prepared for surgery to reverse stoma. The scan lit up several sites of mets.

This is a brief summary you can read my full story at grapefruitandwine.blogspot....

Or on Facebook

facebook.com/Lily-Anne-Grap...

Best wishes

xx

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Hi I was diagnosed with this in July 17 had debulking surgery and like you was told I needed chemo because on surface of ovary .i had 5 carboplatin and last week was given all clear .i don’t see oncologist now until aug .

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Thanks choconut56. Was yours endometrioid as well? Concerned that carbo/taxol doesn’t work as well with endometrioid as opposed to serous. I was told I had a choice of carbo only or both. What a choice to have to make?

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Yes that’s right stage1 grade3 .i was told which chemo I would be having and I was very scared .had great support on here from the ladies and got through it but yes having to decide is not easy

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I had endometrioid 2b,surgery and 6 rounds of carbo/taxol.

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How did you find it? I’ve had the surgery & looking at 6rounds of carbo/taxol but worried about side effects & whether it works on endometrioid x

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I had 2C endometriod ovarian cancer. They found it during surgery. I went in due to bleeding and a large cyst. I did weekly carbo/taxol for 14 weeks. Was supposed to do 18 weeks but due to side effects from the taxol the last weeks were just carbo. I will be NED for 2 years in a few weeks. When the taxol was causing neuropathy I switched one time to taxotere and had a severe reaction. Ended up swelling up and passing out. I was in the hospital for 5 days. Lost my nails also but they did grow back. It worked for me. Not everyone has severe side effects. Everyone reacts differently. Good luck on your journey.

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I found the chemo doable,few side effects but nothing too bad,And i'am still here 6 years down the line. At the time my consultant said that it was worth having and if I were his wife he would want me to have it. Good luck with whatever you choose to do. x

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I had surgery for endometrioid stage 2a grade 2 in Dec of 2013 (large size ~22cmx15cm). Lymph nodes were all clear - only left ovary and left fallopian tube (that's why it was staged as 2a) were involved. CA125 marker was over 1000 before surgery. I had 6 rounds (every 3 weeks) of carbo/taxol with minimal side-effects. I was able to work from home during that period - almost every day (even though i didn't have to) - it made me feel better :). Chemo #5 and #6 had little bit lower dose of taxol because nauropathy started to affect my feet (i don't have neuropathy anymore). Also last chemo session had to be postponed two times because of blood work. They were also giving me pre-meds before chemo to prevent allergic reactions (their standard is to give it first 3 chemos but they continued to give it to me until the last chemo since I had allergic reaction to taxol at chemo#4). If you ask me, i would for sure go with chemo. I was scared before i started it but it wasn't scary at all after that (at least for me :)). I'm going for checkups every 6 months now and, hopefully, I will continue to do well. You have the best chance to beat it if you take chemo after surgery (after you recover from surgery). I was told that timing is important - you won't have that same chance again if you wait for time to pass. All the best!!!

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Hi sorry to have to welcome you here but it’s a wonderful community of friendship and support! I was diagnosed in July 2016 stage 1c high grade serous, had total hysterectomy. I was told I would need chemo to mop up, had 6 cycles of carbo only and been all clear since and long may it last. It’s your decision of course but I found the carbo do able it just made me extremely tired. Good luck. x

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Hi

Caryl,

I had surgery in March 2015 and diagnosed with endometrioid 1c grade 1. Ca125 was 6700 !!!!

I was classed as 1c as the cancerous cyst burst during surgery as it was attached to my ureter. I was referred from the surgeon to the oncologist who recommended no chemo. He said that grade 1is slow growing and that chemo often isn’t effective. As you can imagine I hop, skipped and cried my way out the clinic. I should imagine all clinicians have their own views and recommendations - if all is well in April I’m being discharged.

I can only say I think I have a guardian angel as I haven’t had to be as courageous as the other ladies here.

I hope your journey is as uneventful as mine x x

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Yes I have been in similar position and my cyst which Turned out to be cancer ruptured during surgery. But I had washings done straight after and they contained atypical cells. Had to have second surgery done and washings again. All was clear.

After lots and lots consideration chose the path of no chemo which I don't think is advisable.

Talk to your oncologist and find the right decision for you...which grade cancer is?

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