Sarah who has been diagnosed !

Sarah who has been diagnosed !

Hi after finding a large cyst on my overie I have recently had surgery . My consultant assured me that he was almost positive I had not got ovarian cancer ... to my surprise 10 days after surgery I was told that my biopsy revealed that in his opinion I've got stage 1c but can't be sure until I go back for more surgery in 3 weeks to have what's left taken out plus omentum and lymph nodes and then start chemo 4 weeks later !!! I'm so scared of the unknown of the chemo ... what have others experienced in terms of side effects ? I will be having taxol/ carbo .. please help x

My beautiful grandaughter took this photo so this is for you Eden

16 Replies

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  • Don't be affraid. My OC left me with stage 3c 1 1/2 years ago. Your in the best position with 1c. Chemo hasn't been so bad. I am 75 years old and retired, so I don't have any pressure on my daily routine after chemo. I go home and rest, and sometimes I feel great and don't have to rest. Keep yourself strong with good food - no sugar and junk food. I must say the fatigue was the worst, however, I can't say I've suffered. Accept where you are right now, and don't do anything you don't want to do. Your main adventure now is "if you feel good today, live and be thankful. I wish you could let me know how your doing. I'll be praying for you. Marylou

  • The time before chemo is a frightening time--you've been diagnosed and are now waiting to start your protocol. It is natural to be anxious. Is your surgery to be performed by a gynecologic oncologist? This is very important. You don't say where you are located but if you can fine a gynecologic oncologist rather than a gynecologist it will be to your advantage.

    Re chemo--the side effects will include hair loss and incredible fatigue. You will have good days and bad. Nausea is pretty much under control with some excellent meds. I walked 30-40 minutes daily as recommended by my oncologist. I couldn't do this walk until several days post chemo and then managed to walk daily until my next chemo (three weeks).

    Good luck with the surgery and chemo.

  • Hi thanks for your reply . I indeed do have a gynocologist oncologist who performed my first surgery and will also do my 2nd surgery in 3 weeks and is fantastic at his job and all of the staff who looked after me last time . I'm based in Leicestershire England . Yes hair loss is a scary thing but I've come to accept this . In your experience did all of your body hair fall out ? Eyebrows ? ... I think for me it's the unknown of chemotherapy that I'm scared off and if I'm strong enough to deal with this . I'm a very strong person but since the diagnosis I feel that my life has been turned upside down and suddenly feel very weak and not in control x

  • Your reaction is quite normal for your situation. It's the unknown that is frightening but once you start chemo, you will have a routine and things will calm down. The hair loss usually begins about 2 1/2 weeks after your first chemo treatment. I had six cycles of chemo and it wasn't until after about the fifth cycle that my eyebrows and eyelashes fell out. I wasn't prepared for that! I had a good wig that I bought before I started chemo. To me, that was important. Others feel differently and are fine with headscarves or bald.

  • Chemo seems so scary until you have one under your belt then you see that it's not as bad as expected... I am 1c too and have just complete my chemo the same two drugs that you are going to have which is usual first line treatment ... the side affects there are loads but you may not get any or just one or two ... I felt sick for which they can give you anti sickness mess so if you do feel sick speak up... I also had random joint pains which can be very painful and tiredness the latter you can do nothing about so eat as much as you need too... losing your hair sucks I've also lost my eyebrows and eyelashes which was a bit of a shock but at least I don't have to shave my legs lol... other media they give you include steroids which help you to cope with chemotherapy and antihistamine to help prevent any reactions... your cns nurse will help you with any questions you may have so write anything down ... I also kept a journal which included any symptoms I had so I wouldn't forget to tell my onc chemo brain made me a bit more forgetful .... constipation can also be a issue so again tell your cons or onc... most side affects can be managed so best advice I can give is don't suffer in silence stay positive laugh at the irony and stay strong.... love the pic ... all the best for your treatment 😍 Investigate look good feel good event as when I lost my hair make up became an issue ... where do you stop your foundation when you have no hair line I had to laugh at myself ... they provide a NHS wig that are great and hats 🎩 are my new best friend My ears get cold which is a new experience 😳 Try not to worry which I know is easier said then done I have been in your shoes but 1c diagnosis is good they caught the little beast early 😃👍🏻 You will find your pattern do arrange fun things to do on the days your well it gives you something to look forward to and helps you to focus on nice things 😍

  • It's normal to feel scared I do think it is fear of the unknown. I was really scared but it was nowhere near as bad as I thought it would be. I think sometimes you get bombarded with lots of information which can be overwhelming so I decided what was best for me was on a need to know basis and I would only refer to the info booklets if I was concerned about something. The side effects are not as bad as they used to be anti sickness meds are really good although they can make you constipated as I found out the hard way. I managed this by taking movicol and meds that the hospital prescribed and it was much better. It was hard losing my hair then my eyebrows and eyelashes as well but you do seem to find an inner strength and get through it. I'm 12mths post chemo now and although I can still get tired easily I'm feeling fine. Please try not to worry im sure it won't be as bad as you imagine. Stay strong. Big hugs from Sue xx

  • Welcome to the club no-one wants to join!

    If you use the search facility on the Ovacome community page within Health Unlocked (UK based) you'll find lots of advice from the the community, including me, about managing chemo. Don't assume it will be terrible. Many cope quite well. The search facility is a bit clunky - you have to press the enter key to get it to work!

    Good luck with it all. If there's one thing this horrible disease demonstrates time after time is how resilient women are. I'm sure you will be too. xx

  • You come to the Right place it is natural to be anxious I was diahoniose two years ago with stage 3 grade 3 unfortunately had only some of cancer removed has I was asufferer of neutraphenia before cancer so had a risk of infection but everyone I sure was nervous but everyone goes through differently it a lot to take in at first but everything is explained to you in stages as you receive the chemo after you first bout you will feel better not knowing is the worse thing

  • Hi, I've just joined the community, and read your post. I finished treatment for stage 2 OC 4 years ago, still in remission. It is scary starting the treatment, but as others have said the chemo isn't as bad as it sounds. I had 3 cycles of carboplatin then surgery followed by another 3 of carboplatin + taxol. I lost my hair, which actually wasn't so bad, helped by a very kind friend who came over and we shaved off each others hair! I lost my eyebrows and eyelashes too, but it was so gradual I hadn't noticed until they started to grow back! My hair is now very thick & curly. The side effects for me were mainly fatigue and for the last few cycles, joint pain. They give you anti nausea meds which really do help, even if you don't feel sick it is often good to keep up taking the doses, I was caught out several times because I didn't take the anti nausea pills. The chemo side effects are cumulative, so you may not feel to bad from the first few cycles. They take time to administer too, so take a good book, magazines, music to listen to when you go for the sessions. Good luck with the treatment, let us know how you get on.

  • Thank you ladies for all your kind information . It has been a whirlwind to say the least . I'm finally starting to feel that I'm not alone in this fight with the dreaded OC . I'm sure that I will fight tooth and nail and will come out the other side.

    I think today was a down day and although I try to be strong sometimes it's ok to have a little cry and wonder why it's happened to you . Tomorrow is another day and I'm sure it will be positive as I'm a glass half full kind of girl . Thank you all again x

  • I was diagnosed stage 3 had big operation then on to chemo. Same as most ladies it was carbo and taxol. Oncologist stopped taxol after three sessions as my fingers and toes were getting very numb. I lost my hair, had a great NHS wig but did not lose eyebrows and lashes. The expectation is far worse than actually living with it. You will probably be given sickness tablets and steroids when you have your chemo. I didn't take either. The one thing I have learned is that I was not told a lot about what will happen so keep asking questions. This is where this wonderful site comes in. Every worry can be answered. Love and best of luck to you.

  • Hi ladies .. has anyone continued to drive after chemo ? I have a 50 mile round trip to get to the hospital ... I have friends who will help out but it's difficult to keep asking for a lift and my husband can't take a day off every chemo treatment ... anyone else had any experience with this ??

  • Yes, after the 1st one I drove myself to each one and back home again.. While friend had good intentions of wanting to help and said they would... there always seemed to be something that got in the way... So I just made up my mind rather than have that unknown drama... I took control of it and I made sure I had drank lots of water during chemo and turned on the music going home and did just fine.. I hope you can do the same.

  • Hi Sarah, yes, this is a very scary and stressful time but hang on in there. My case sounds similar to yours. Large cyst, looked ok but on test results found out it wasn't. Had another op to remove omentum, uterus etc. All done by key which was great and the recovery time good. My diagnosis remained 1b high grade after second op. I just started chemo last Friday. The first couple of days were ok but I've found the lack of sleep and the aches more problematic than sickness at the moment but it think it may be linked to the meds I'm on. As far as I know the medical card lasts for 5 years so no doubt it will come in useful in time. In the meantime you will probably get all the meds you need from hospital. Just try and take a day at a time and be kind to yourself. All the very best, Sarah x

  • Google well recommended lymph drainage massage techs that have experience. It helped my abdomen after surgery and I only had to be drained once, the massage helped my body learn new pathways that keeps the fluid moving. I do a short daily massage as well.

    Traycie

  • I like you have just been diagnosed with Stage 1C which was a shock as all scans and tests were negative. I had a full TAH plus Omentum three weeks ago. The most frightening thing of the whole process is having chemo and the fear of the unknown. I will be seeing the oncologist within the next couple of weeks and will need six cycles as a preventive treatment which I hope will start before Christmas. There is a lot of support when having treatment and we are not on our own. All the replies have been so positive and has alleviated the fear a little. Good luck with the follow up surgery and treatment.