Carboplatin for stage 1 high grade OC?

[yewbarrow]

I am just over 2 weeks post surgery and i know I'm lucky to have a diagnosis of stage 1, but I don't know what to do next because it is a high grade cancer. The oncologist says it's up to me whether to opt for 6 cycles of carboplatin, telling me it may give me a very slightly better chance. So I'm not being steered either way from oncologist, is this usual? Thanks and best to everyone

[ricky23]

Hi I had Stage 1c. I didn't have chemotherapy or anything else. I got 3 great years but now have problems it's back Stage 4 not curable but having chemo to keep me going it appears. My regret was not having it all those years ago I was told by my Gynaecology that it wouldn't give me much more time with or without. I still wish I'd had the chemo as now I'm terminal and may not have been. Chat to as many people as you can. My advice as I've been there is take it with both hands !! Take care xxx

[yewbarrow in reply to ricky23]

Thank you for your kindness and advice which is forcing me to face what I think I knew was almost inevitable (chemotherapy). Wishing you all possible good from your treatment and many thanks for reaching out to someone in a better position xxx

[Lollie2016 in reply to ricky23]

Hi Ricky , im sorry to hear this. Your post drew my attention because i also did not have chemo. May i ask what tupe of cancer cell you had (high/low grade and type) and how did you know it had progressed, were there any signs? Also, did you have a hysterectomy?

Would really appreciate your reply though , understand you might prefer not to . I hope you are ok and treatment going well xx

[yewbarrow in reply to Lollie2016]

Hi Lollie your reply came through to me, Yewbarrow, not Ricky. Good luck xxx

[Caroles1]

I agree with ricky23,I was diagnosed 1c in August 2014 and was given both carbo and taxol and am currently NED, I was told it was my best chance,if you are given just carboplatin I believe your hair doesn't fall out,but Im sure someone else can verify that.

I would go for the chemo,at least then you have done your best,

Good luck,

Carole xxx

[yewbarrow in reply to Caroles1]

Thanks so much, just replied to ricky23, think I'll have to go for it. Good luck to you too Carole xxx

[HogwartsDK]

Hey YewBarrow!

I was diagnosed with OC 1C High Grade in Sept 2015. I was advised as it was high grade I should consider Chemo. I did my research and decided to throw everything at it! I was told I was in remission before I had the chemo as all of the tests from my second surgery had come back clear but I decided to do the Chemo anyway! I didn't want to have any regrets in the future! I am six months out from Chemo now and really well! It was tough but doable! I had double agent Carbo and Taxol! Carols is right it's the Taxol that causes the hair loss but I understand that Carbo can cause thinning! There are many women on here who have had single agent Carbo and I am sure they will advise you about what that was like! I am happy with my decision but it's a very personal one. Good luck with your decision making.

All the very best!

Dx

[yewbarrow in reply to HogwartsDK]

Dear Hogwarts (my Harry Potter fanatical daughter had to sign me up for this as I'm a technophobic, so it's appropriate that you've replied!) I think I'm going to have to go for it. I was told stats are that I am more likely cured than not even if no chemotherapy but then I'm more likely not to have a car crash than have one (in fact I've never had one) but I still wear a seat belt ....... so with much trepidation I think I'll make the call tomorrow. Thanks for your help and very good luck to you too xxx

[Shellygirl]

I was in exactly the same position... It was the hardest decision of my life but I choose to undertake chemo as belts and braces to give me the best chance for survival 😃

[yewbarrow in reply to Shellygirl]

Thanks! I think I'd hoped to get some sort of steer from the oncologist but I guess I'll have to step up and make my own decision! Good luck x

[Shellygirl in reply to yewbarrow]

It has to be your decision... My oncologist did not give me any direction ... I felt I had to have chemo as my surgeon recommended it... However when I went to consultation with onc the cns pointed out that actually this was not the case .... The oncologist is obviously the expert in this field but the advice was given that it was my choice. It was a tremendous shock as I just expected to be told your having chemo and this is what we are going to do .... To have to make such an important decision with little direction even my partner said its your decision I just sat in the chair thinking omg what do I do.... I did decide to have chemo now and then I knew I my heart that I had done everything I possibly could to stop the cancer in its tracks 😃

[yewbarrow in reply to Shellygirl]

Tbh it's of some comfort to hear that it wasn't just my oncologist who didn't give any direction. Like you a bit of a shock but at least it's usual. Many thanks x

[Sunfleury-UK]

Hi YewBarrow,

I was 1c but low grade and mucinous- Onc advised Carboplatin only though also acknowledged other centres might suggest none or to have Carboplatin and Taxol!! Like you I was left with the decision... and it wasn't an easy one at all!!

I spoke with my GP who was really helpful and I know other women in a similar situation have phoned either the Ovacome or Ask Eve nurse-led helpline which has also been really helpful to them though of course your Oncologist will have access your individual details...

As D says above, it's very personal and of course it's impossible to see into the future or even know what might have been if a different choice was made in the past. A big part of my decision was based on how I imagined I'd feel about it in the future- if that makes sense?

You can though ask for another meeting with your onc and you may be able to get a bit more info from them or indeed request a second opinion - this is standard practise, so your Onc won't be at all thrown by the request!!

Wishing you strength and hope xxx

[yewbarrow in reply to Sunfleury-UK]

Thanks, and yes it makes great sense. I'll probably opt for treatment but also i think I'll ask for another meeting with oncologist tomorrow. I would probably have asked more had I been more prepared but I had totally unexpected (to me) meeting with oncologist minutes after my post op diagnosis. Wishing you all very best too x

[Sunfleury-UK in reply to yewbarrow]

Sounds like a good plan- you may find some helpful questions to ask the Onc on both the Ovacome and Target Ovarian Cancer websites.... Also it's good to have someone else there with a copy of the questions too (another pair of ears can be useful) and / or ask to record the meeting on your phone or iPad- it was suggested by a CNS as a really useful and acceptable thing to do!

Good luck, I'm sure you'll make the right decision for you! Sx

[Hidden]

I was diagnosed with O.C. stage 1a in 2012...i had carboplatin as a belt and braces ( mop up ) now four and a half years later I have not had a recurrence and for that I feel very lucky....it's your choice yewbarrow .....I was told what you are being told, but glad I opted for the treatment...good luck whatever you decide.

Luanna x

[yewbarrow in reply to Hidden]

Thanks and great to hear no recurrence. Think I'll go for it but it scares me x

[Hidden in reply to yewbarrow]

And on the plus side... You will get to keep your hair yewbarow.

Luanna. xx

[Caroles1 in reply to yewbarrow]

Don't be scared,it's not that bad! I am a terrible coward,but I got through,your dosage anti sickness etc will be monitored by your team and you will get through

Carole xxx

[Corribrae]

I am in exactly the same position as you. I am going for my first chemo of carboplatin and taxol this morning. Everything I have read and been told terrifies me. But you have to take the best chance you can. I don't want to look back and regret not having it. I just keep telling myself 6 sessions is nothing over 18 weeks and I will get thru this.

[yewbarrow in reply to Corribrae]

Thanks and I will be thinking of you today. Hope it goes well x

[Hidden]

Hi there I was diagnosed 20 years ago with very high grade stagw1 ovarian cancer and was given the choice although there was a slight emphasis on having the Carboplatin. I felt as others have said how would I feel if I decided not to have it and it came back. Only you can answer that and what is right for you is not the same for everyone Although of course there are no guarantees for me I felt I needed to have it. I was scared beforehand as many people are but once I got started it although it wasn't a walk in the park it was manageable. All the very best - I should also have said that 20 years on I have been fine

[yewbarrow in reply to Hidden]

Thanks, especially helpful that you sound like me, (I'm stage 1, high grade serous). Tbh I feel a bit of a fraud as I know this is a very lucky position to be in. Anyway I rang for a 2nd appointment with oncologist (which was hard for me to do, thought they'd say no) and I'm going on Thursday. Think I'll go for it but I will be able to ask so many questions that I didn't last week. Thank you and very best wishes x

[Angel-teal13]

I am also stage 1C and I was told that the carbo/taxol combination would give me the best chance of taking care of the OC. I did not even consider not having it because of the advice i was given. However, it depends what type of OC you have. Some may only need carboplatin. Mine was clear cell and the taxol (ie paclitaxel) element is deemed to be an important part of treatment for clear cell as it can tend to be platinum resistant (early on in treatment or after more and more treatments in the future -time will tell with that -you can't predict it. Might be anything from platinum sensitive, like me at present, partially sensitive or resistant.)So having taxol is an extra insurance. Ask what type of OC you have and they will advise for what type you have. Hope that helps. All the best and let us know how you get on.

Angel-teal xxxx

[yewbarrow in reply to Angel-teal13]

It all helps so much. This thread is coming across as popular because I HAVE to reply to each post to thank everyone who despite their own circumstances, have reached out to help me (so half of posts are me!) Mine is high grade serous, so different type to yours but I think oncologist said taxol wasn't available for me, seeing Thursday so will check. Many thanks and best wishes xx

[Alibee2]

Hi I was diagnosed with 1c both low grade and medium grade cells (serous & endemetroid) I was offered Carbo on its own or Carbo/Taxol to deal with any cells that escaped when the cyst was rupturedduring surgery. After doing some research chose Carbo only. Onc agreed as the Taxol only gave a small extra benefit for non clear cell cancers and was good to hold in reserve to treat any recurrence. I'm on cycle 3 - for the first 4 days I get stomach pain and nausea and the steroids make me bounce off the walls ....all day and night! Then comes light nausea for 10ish more days with fatigue - I need to rest more with a few sofa hours each day. I have had chemo delays with low blood counts but I have been able to cook, puppy walk, shop etc. It is horrid feeling unwell for so long and as I live alone it's very isolating especially if you are used to going out to work and social events, but I reckoned it was giving me the best chance oh and cycle 1 was scary because it was the 'unknown' now... it's just become routine! All the best to you x

[yewbarrow in reply to Alibee2]

Thanks this is so helpful especially as I leave in about an hour for decision meeting with oncologist. I think I'm going to go for it but feel terrified so it really helps to hear your story. Very many thanks and very best to you too xx

[Alibee2 in reply to yewbarrow]

Please feel free to message me if you want to know more or just want support through the process if you go for it! I had no. 3 yesterday so I'm nearly half way now - it's amazing half quickly it goes... xx

[yewbarrow]

Many thanks and I start a week on Monday, like you it felt like it gave me the best chance. Hope this cycle is OK for you especially now in the early stages. Give the puppy a pat for me and good luck xx

[triplets]

Hi yewbarrow, I too was diagnosed in July, stage 1c2. Had a full hysterectomy on Aug 15th then advised to have mop up chemo. The mdm team had advised carbo/taxol but after meeting with the onco he said there was very little evidence that I would gain much as against having the carbo alone. So this is what I did and had my first one 2 weeks ago. It was not the scary experience I was expecting, it was relaxing, reassuring and I was in and out in 90 mins. I am having 6 cycles 3 weeks apart. The only side effect thus far is I have noticed when washing my hair more loss than usual, but its nothing alarming. Good luck to you, be nice to keep in touch as we are in the same boat. xx

[yewbarrow in reply to triplets]

Great to here from you, and it would be great to keep in touch. I start a week on Monday, my oncologist said only carboplatin, 6 cycles, 28 days apart. Guess they all have slightly different regimes. Hope it continues going well for you and wishing you all good x

[Mumtazbegum]

Having carboplatin only for stage1c high grade.I have had 4 so far and side effects have been manageable with meds. I too was concerned about the side effects. So far no problems. Chemo takes 1 hour.after 5 to 7 days you feel normal again.I notice more hair falling out but I still look like normal.I try and keep my hair short .just can't colour so greys are more obvious. I am 58.Once you have the first treatment you will know what to expect and it will be less scary.It is the not knowing that is the worse.Coming on the forum helps because you can get an idea of what to expect. Wishing you well .Be positive . Take care.