My Ovacome
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Adjuvent Chemo with Carboplatin only following surgery.

Anyone been recommended adjuvant chemo due to cyst rupture during surgery ?

If so can you advise on stage and grade please and outcome ie: any recurrence following adjuvant chemo

many thanks

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Hi Sheryl,

I think if you have been advised to have adjuvent chemotherapy, then this is what you should go with, I think you should go with the advise your oncology team gives.. as they are afterall the experts and are familiar with you prognosis and they wouldn't offer it to you if they didn't think it was necessary, they want what is best for you, they are in the business of saving lives. Best wishes love x G x

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Gwyn ; many thanks for prompt response. I have been given some conflicting advice as cells found were Grade 1 and been advised it is unclear if chemo "works" on low Grade cells? 2nd Onc advised they do not wish to give me additional treatment but if I "want" it they will provide ? Just very confused - everything has happened so quickly in terms of surgery and treatment advice. Any idea how long after surgery adjuvant treatment an be given?

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Hi Sheryl

I had 6 sessions of carbo and taxol following a hysterectomy in january.

This was because one of the ovaries ruptured during surgery and like some of the other replies i was stage 1c but with high grade aggressive cells.

Ive just been given the all clear subject to periodic scans so if your onc has recommended chemo the belt and braces approach always seems the best option. Good luck with everything and big hugs

Fiona

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I am sorry you could give the ovacome helpline a ring they are very good with advise tel 0845 371 0554 ( office hours) love x G x

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Hi Sheryl,

I had adjuvant chemo Carboplatin/Taxol for 6 treatments following a hysterectomy and a ruptured cyst. I was given a stage 1c but with aggressive cells.

I was diagnosed October 2011 and finished chemo Feb 2012. I am having scans and CA125 tests as I might have a possible recurrence.

I would strongly advise taking the consultants recommendations with regard to chemo, as this kind of cancer has a very high recurrence rate.

Everyone is different, so it is better to 'cover all angles'. If you would like to ask me any questions please feel free to ask.

Regards

Janette

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Janette many thanks for response. Not sure why some consultants recommend only Carboplatin as treatment plan? I am so stressed over it all as been given conficting advice from 2 oncs. One saying better to take it as theory is... easier to deal with now rather than later. I was on cloud 9 when 2nd on said they did not want to give me additional treatment as low risk of recurrence and low grade .... stated that trials had been conducted and people in my position gain little benefit from the additional treatment.

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Sheryl, please can you tell me what your cell type is? This is very important. I have read a lot about slow growing cancers especially Ovarian, and from what you say, you are correct, that chemo has very little effect on slow growth. Please let me know as I can ask some advice from an oncologist nurse!! xx

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Janette. Endometrioid Ovarian Adenocarcinoma - Grade 1. In one ovary only. Everything removed - free of any malignant cells including the abdominal washings.

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Hiya Sheryl, I know how you are feeling, everything is so raw, and most of all you want to make a balanced decision on factual information. If you send me your e mail address I will put you in contact with someone who has a lot of experience with ovarian, and she will give you a balanced decision. I too had clear washing and nothing found anywhere! She is a lovely lady, and maybe will put everything into perspective. Sending hugs xxx

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How do I message you direct with email address rather than public message

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Goto your screenname on top green bar, select messages, on the address bar type screenname of person receiving. As you type G for ginger you,ll notice whats happening. Xx

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Goto to new conversation xx

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My niece lives in Spain, she had suspected cysts and during on operation to remove them they were ruptured. The biopsy confirmed OC but I dont know what type or grade but stage 1. She was given 6 cycles if carbo/taxol mainly as a precaution. She has come through and given the all clear and will be on regular check ups to monitor her CA125. She is only aged 43. Her biggest problem was the language difficulties. Love Paul xx

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Paul many thanks. Another example of both carbo & taxol used; whereas I am only being offered carboplatin as they feel anything else would be over treating a cannot categorically say there an microscopic disease left to treat ?

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The good news is that you should not lose your hair with carboplatin, the hairloss comes with taxol. Xx Paul

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Hi Sheryl I am a stage 2 low grader and I am currently receiving Carboplatin only after surgery back in March. Taxol wasnt recommended in my case. My onc said we cannot guarantee there is anything left to get but if you were my wife/sister I would want you to have it. If it is being recommended I would take it. I have 2 treatments to go - except for feeling bad for a few days after treatment for 2 out of 3 weeks of the cycle I am living a pretty normal life- working going out etc. the fear of chemo was far far worse than the reality. The meds they give with the chemo really do help.

Claire

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Claire do you mind me asking type of cells? Positive comments regarding the side effects you are having are not as severe as some others have experienced which is re-assuring ...you are right regarding the fear of chemo ..... I have visions of having to remain indoors to avoid risk of infection; scared witless regarding some of the rare side effects

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I am a bit of an odd case- borderline tumors with an area of low grade serous hence the chemo- I almost escaped needing it. I was envisaging months and months of virtual house arest but it is nothing like that! Biggest downside no rare steaks or good cheese!

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Also meant to add my onc wanted to start chemo4-6 weeks post op.

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I had Carboplatin only for one session and then decided chemo wasn't for me. Stage 1 with grade 3 clear cell and grade 1 serous cells. I carried out a lot of research and had a long chat with oncologist. She told me there is no evidence to support chemo making any difference, because most have the chemo, hence lack of research.

My first 3 month check showed a CA125 of 12 and the second 9, my consultant considers there to be no evidence of disease. However my cyst didn't rupture so my experience is different, my specialist nurse told me that slow growing cells are unlikely to respond to chemo, however this was just a result of our conversation, probably because my cells were of a more rapidly growing variety.

I think chemo is a very personal choice and nobody can advise you either way. I asked for advice on here and added that to everything else I had investigated. Good luck with your decision.

LA x

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HI, I had Endometrioid Ovarian Adenocarcinoma - Grade 1. also - I had the ovary out then a few months later I had a full hysterectomy - my oncologist said everything was clear so no need for further treatment. I hope this helps x

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Hi Sheryl, I know you know this but thought it was worth adding my info to your question for anyone with a similar future dilemma- I hope you don't mind!

2012 Diagnosed 1c grade 1 mucinous- 1c due to capsule rupture during initial operation to remove 'cyst' though this was contained. Full surgery followed with no cells found elsewhere. Advised to have single agent Carboplatin by Oncologist, though he acknowledged that at other hospitals it would be suggested that I have both Taxol & Carboplatin. Had Carboplatin and a bit of a tricky time due to neutropenia from the beginning and throughout and quite high levels of fatigue.

Best wishes and hope you're finding other people's experiences of help. It's very difficult to to find your way through conflicting medical advice, Sxx

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Hi Sheryl, I had the same type as you but grade 3. My oncologist initially suggested carbo/taxol but after talking it through with her I am having carbo only.

It's not an easy decision to make and I wish you well.Dawn xxx

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Hi Sheryl, Mine was slow growing and, back then, ten years ago, it wasn't deemed necessary for me to have any chemo. There are some factsheets on the Ovacome website that might help to clarify things, and as someone else has mentioned, the nurse staffed helpline is really good. Ring before the end of business hrs today though! Its 0845 371 0554. The website is ovacome.org.uk

I hope that things will become clearer for you and that you return to good health

Love Wendy xx

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Many thanks for all responses and sharing of experience.

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Hi stage 2 low grade. Onc said no to chemo as shown to be of little benefit. I was a bit worried about that, As I've heard that all stage 2 get treated with Chemo. She suggested it is probably an American site on the net, Driven by profit. X

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