Hi everyone, I have looked back through previous posts and can't find many in the same situation as me. Im 57 years old, had a full hysterectomy a month ago to remove a 13cm ovary mass, turned out to be cancerous within the ovary and some pre cancer cells within the fallopian tube.
They said it was stage 1. Don't know anything more than that.
Now I start chemo next month and it's only carboplatin on its own, for 6 cycles. Does this sound normal? Everyone else seems to be on a mixture of 2 different chemo drugs at once.
Thanks in advance everyone, hope you are all doing well.
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hi don’t worry I had just that one medication for 6 treatments having had a full hysterectomy, my oncologist said it was just a precaution for the future this was 4 years ago and fingers crossed no further problems. Good luck
Hello, sorry to hear they found cancer but I'm pleased for you that it was staged at stage 1.
I think your circumstances sound very similar to mine. I was also given carboplatin however if the cancer had spread they told me I would have also been given taxol.
In terms of questions to ask about your diagnosis perhaps take a look at my profile and you can see some of the information you are yet to be told, e.g. ovarian cancer sub-type, grade, whether it is oestrogen receptor positive?
Perhaps also consider having some genetic testing if you can however it was easier for me to be entitled to the genetic testing due to being diagnosed at 49, i.e. under 50.
Please just ask if you have any further questions.
Thank you! Yes I have been offered genetic testing to see if I carry the braca gene, this will take another 8 weeks for results I think. Sounds like I am so lucky that I have been caught as early as stage 1, and after reading the stories on here I feel more at ease with just the single agent chemo. X
I'm stage 1c (they found cells in the washings after surgery) I was given both chemos but read some answers on another site that taxol wasn't recommended for stage 1 so I think it depends on your oncologist
I was 1C, had TAH and 6 rounds of Carbo Taxol. Kept it at bay for 6 years. Please don’t stop being tested after 5 years. This is a sneaky disease. I’m in my 4th recurrence, but keep knocking it back. Grateful for various treatments. 🙏💪
I had stage 1A ovarian cancer at 42 (6 years ago). They did radical hysterectomy and 5 rounds with carbo and taxol. It hadn’t spread outside of my ovary. Looking back, they were very aggressive treating it. Maybe bc I was so young. I know some people that are stage 1A don’t even get chemo. If you are worried that they aren’t aggressive enough, ask if they can give you both drugs for chemo. It never hurts to ask and if it will ease your mind, it’s worth it. Plus if you’re already doing chemo, might as well hit it hard. Keep us updated. Are you in US or UK? I’m in US
Thank you for your post. I can see that several members of the forum community have shared their experiences with you which I hope has been helpful.
I just wanted to let you know about our Stage 1 ovarian cancer information booklet which can be found here: ovacome.org.uk/stage-1-booklet . This explains that:
‘Stage 1a3 and 1b3 and all stage 1c ovarian cancer is treated with surgery and chemotherapy. This is to make sure any cancer cells remaining in your pelvis and abdomen after the operation are eliminated. Before you start chemotherapy you need to recover from the surgery. Usually within six weeks of your operation you will start a course of six chemotherapy treatments, given every three weeks. y It is likely that your consultant will recommend carboplatin chemotherapy.’
I hope this information is useful. We can also send this booklet to you in the post, free of charge if you prefer.
I wondered if you have had the opportunity to discuss any questions you have about your upcoming treatment with your clinical nurse specialist or oncologist? They should be able to provide personalised insight into the reasons behind your individualised treatment plan. If you would like any help to prepare for any future appointments, the Ovacome support team are here for you so please don’t hesitate to get in touch.
We’re here Monday – Friday, 10am – 5pm, to talk through questions or just have a friendly chat about anything that may be on your mind. You can reply directly through this forum, email us via support@ovacome.org.uk or call our support line on 0800 008 7054.
I hope your future chemotherapy goes as smoothly as possible.
Thanks Annie, I'm sure I got this exact leaflet from my oncologist! It's such a lot to take on sometimes, my head is all over the place.I start my carbo chemo on Tuesday and after talking on here I am reassured that the one chemo should be enough for my staging. Roll on Tuesday 🤣😱 xx
Hi, Sorry that you have joined the sisterhood of ovarian cancer survivors, but take heart at being stage 1! I am a nurse in the US, and a 5 year survivor of stage 4 ovarian cancer. Carboplatin can be used alone in early stage cancer. Taxol is commonly added for advanced stages. They are also adding some immunotherapy to advanced cases these days as well. Something that's important to remember is that you can and should ask your doctor any questions that you have about your chemo. Things work best when you are well informed about treatments and side effects. As a nurse, I encourage you to do so. Best wishes for a tolerable chemo experience and, especially, a very successful outcome!
I was treated with carboplatin last autumn, every 3 weeks. I was worried initially, but found that if I relaxed I could read my newspaper, do the crossword etc, and that the timetable matched other people's and that we could chat. I'd built up some concerns but they quickly disappeared.
I was on another treatment in the spring, but that was every 4 weeks but this didn't match my fellow patients, but the treatment still found me relaxed, to the point of nodding off!
Hi there. I was diagnosed stage 1c in 2020. Had hysterectomy, womb, tubes, ovaries , omentum and appendix removed. Everything was clear except for the ovarian cyst where they found evidence of an endometroid tumour, Because some of the cells were on the outside of the ovary they recommended carbo/taxol for 6 cycle as a preventative measure.. My CA125 was 900 before the surgery - since then it has been around 10 at every checkup. I remember the oncologist telling me that there was only one chance at a cure and they were going to hit it with everything! I was 52 at the time and considered quite young but very lucky. I had very few symtoms just a pain in my stomach that was so bad my family had to call an ambulance! I am in Ireland . I wish you the best of luck. The chemo wasn't too bad however I felt so bad after the 5th cycle they decided not to give me the 6th. they were very happy with that because I had been staged at 1C.
I was diagnosed stage 1c at age 54 in January following a TAH, removal of parts of omentum, biopsies of peritoneum and lymph nodes, because a cyst burst while it was being removed. It was a shock and I was very anxious for the future. I know it doesn’t feel like it to you at present but a stage 1 diagnosis is relatively good news as the OC has been found at a very early stage. The other relatively good news is that you stand a good chance of not losing all your hair due to chemotherapy. It’s likely that the chemo will be given as a precaution. You will get through this and discover that you’re stronger than you think. Worrying is normal, take one day at a time, rest when you need to and be kind to yourself. Find time to laugh, shout, swear, thump pillows. Ask any questions on this forum, you are not alone in this, someone will have been in the same situation or have had the same questions or concerns.
I was in a similar circumstance. Chemo because my cancer cells were of a high grade. I did my research. There were 3 studies showing that single drug Carboplatin was as effective as the two chemo drug regimen of Taxol and Carboplatin. No chemo regimen is a walk in the park but you will have far far fewer side effects with Carboplatin alone and the same outcome. Consider yourself lucky. Follow all the treatments to avoid or counter any side effects. You will not lose your hair and will look good and feel pretty good throughout the treatment. The plan fact is that many oncologists give Taxol because they make more money from Big Parma. Stay in touch and feel confident that this is the right course of treatment.
Thank you so much for replying! Good to know that the carbo alone should have the same outcome, I start on Tuesday, not feeling as worried about it as I was. Also, I have been given a wig incase my hair thins but good to know it won't all fall out!!
I see you've had several responses. Carboplatin alone is the norm for stage 1. I had stage Ic in 2006 and at that time Carbo plus Taxol was the norm. I have a bad allergy history, so my oncologist said I couldn't have the Taxol (it has a high risk of allergic reactions, not to the Taxol itself, but to the solvent they have to use because it's insoluble in water). I'm still here 16 years later and have never had a recurrence. I hope you find that reassuring.
Don't know if anyone will see this on this thread, wasn't sure whether to start another 😬Just had my first carboplatin IV at the Beatson this afternoon. Took just over and hour in total and I'm back home. Feeling fine just now, but sitting waiting for any side effects to start. The fear is real, anyone else the same?
I do hope any side effects you are experiencing are manageable. For me it was the aching knees when I was sitting (so I bought a heated blanket to have over my legs when watching television in the evening). I had awful constipation so the nurses were fine with me not taking the anti-sickness tablets (as the tablets caused the constipation).
Have you been told what sub-type your ovarian cancer is yet? For example, high grade serous, endometrioid, clear cell, etc?
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