Hello all
Im new here. I was told yesterday i have ovarian cancer and next Wednesday i will be seeing a doctor who will go through the treatment plan with me. So far I've been told it will be 3 cycles followed by surgery and then another cycle of 3. Im absolutely terrified not only about the illness itself but the treatment so was wondering how others have coped and succeeded with ths, thank you. Annie
Hello Ann,
I was just told recently that I have Ovarian cancer as well. It was such a shock and so unexpected. I found out the end of August. I went to surgery first to do a debunking procedure but my abdomen is covered with tiny tumors. They closed me and are now treating me with 3 rounds of chemo (cabo taxil) first than surgery than 3 more rounds. I am very scared as well. Scared the chemo won’t work and I won’t be able to have surgery and scared in general. The surgery was very scary but having woken up from it and recovering fairly quickly I am not so scared of having the big surgery. I had my first round of chemo a week ago. It wasn’t what I expected. I thought I would feel it going in and I would be in great discomfort after. I have to admit I felt pretty crummy last week. I did not feel as bad as I expected though. The nausea meds kept everything under control. This week I feel myself again I can do stuff and get out of the house.
Hi.. thanks for you message. Yes its a horrible shock. The worst thing i could do is also google as most of the time its very grim and negative [edited by moderator]. To be honest, one minute im crying and next very strong thinking there is no way i let this thing take over my life. I hope that the treatment will continue giving you zero side effects, its enough to have to deal with the diagnosis let alone everything else. Its nice yo have access to support group of people like this site 😊
Hi,I know googling is so disheartening. Every day is a new day though. Many stats are outdated. More current info says advanced ( mine is) Ovarian cancer can be treated as a chronic disease.
Yes you are right and stats always look back rather than to the future. 😊
Annie we are a statistic of one. Each of us is unique in our own way. My Dr. says there is hope. I will focus on that.
I am pleased to find the chemo is not as unpleasant as anticipated. I’m in my fourth of six cycles of carbo/taxol with three weeks off between them. I get to rest on a very comfortable chair for about six hours reading and doing things on my computer. They give me a nice lunch. Sometimes a friend can visit me for a few hours.
What little I’ve had of the side effects have not been too bothersome, and I’m able to work, although I’ve gone part time for awhile. The hair loss is kind of a shock, although I’m having fun with the wigs.
Hi Annie
You sound as though you are having the same routine as I had - 3 cycles of Carbo and Taxol and Avastin, then op, and then another three. I then continued for a total of 18 cycles of Avastin. It is so scary, I know, and such a shock. But I can honestly say that it wasn't as bad as I thought it would be! I was dreading being sick with the chemo but it never happened. I started losing my hair after about a month, and felt tired and achy for a few days after each cycle but I carried on working (at home) with naps. Generally, Covid regulations permitting, I carried on as usual. After the operation, I was out of hospital after three nights - I live alone but managed fine. It was very sore for a while but you are given lots of painkillers. I had to inject myself with blood thinners for 21 days after the op (which is simple and painless, so don't panic if you have to do it!). Good luck with everything and keep asking questions. This site is a great support particularly when you are newly diagnosed.
x
It is an absolute shock and the fear of the unknown are what we all have been through.
The oncologist will explain the plan and their long term aim is to give you a break, if possible, from this dreadful and recurring disease. I very much hope that you'll respond very well and all goes very smoothly.
Going through the first chemo is always the hardest as we don't know what to expect but rest assured that you'll be looked after by a great team of specialist nurses. Drink plenty of water before and after the sessions. Good hydrated veins will be easily found for cannulation and water will help to flush toxins outside the body.
Three rounds of chemos before surgery will help shrink the tumours and hopefully the surgeon will be able to take out all visible signs of cancer. The follow-up chemos will target the tiny and microscopic leftovers.
The extent of the side effects from chemo differs between people. They'll give you some pills for nausea and possibly some injections to boost your neutrophils.
A positive state of mind will help in your battle.
Take it one day at a time. You can do it!
Yes day a time it has to be. I very much pray for all people here for what they have gone through are going through at the moment. Positive mind is a big plus 😊🙏🙏
Newbie_2020 My instructions said to drink 2-3 Quarts of water per 24 hours. I really struggle with drinking that much. Thanks for the info as to why.
I struggle, too, to reach 2-3 quarts daily. I add natural herbal teas: ginger root tea, mint, chamomile, etc.
Hi Annie,You’ve already had some good advice and so I’ll just say that it’s true and I’ve been through very similar treatment (although we all respond differently). It is doable although it must seem very daunting now. 5 years ago I was more or less where you are. I was lucky enough not to suffer with sickness much and I hope you avoid that side-effect, but it was a while before I found my equilibrium. I’m not clear of the cancer but it’s currently stable and I live a full life. There is every chance that you will too, although that may seem a long way off right now.
Don’t stop planning for the future but be flexible as plans often have to change, and find something to distract you, even if it’s just reading an absorbing novel, or watching a box set of something - I discovered painting when I found I couldn’t be as active. Indulge yourself a little, you’ll never have a better excuse!
Good Luck Annie, and keep us posted on how you’re doing.
Iris🤗
Hi Annie,It’s such a shock when you hear that you’ve got ovarian cancer and it seems impossible to keep your head up and do normal things.
I’m 4 years post diagnosis (4b), it had gone everywhere apart from my liver. I’m extremely lucky to have had a great response to treatment- carbo taxol followed by Avastin. My last scan in April showed no sign of disease. My oncologist is amazed by my results.
There will be many bumps in the road ahead, good days and really horrible ones, but there is hope.
Try hard to keep positive and calm.
Everyone responds differently to the treatment regime and while one person will have nausea or joint pain another won’t.
Keep us posted on your journey.
Sending you a big hug and my best wishes.
Joy
Dear Annie, It’s certainly a shock when you are diagnosed but many on this site would say that once you have a plan of action and you have support from those in both the medical side and sites like this forum you will feel calmer. We all manage things in our way. Some like to talk, read as much information as they can but may just want quiet time to absorb what’s happening. You will always find support on here. Wishing all the very best. Cheryl.
Thank you Cheryl.. there is nothing better than sharing the same experience with others.. it set off an energy of support that will help along the way 🥰
This is normal protocol. We have all done it. You can be in charge of what you can control...diet exercise support groups how you enrich your life and most of us do a lot of research about treatment options trials etc. Depending on how the cancer has progressed this is frequently manageable illness. Good luck and big hugs from paris
Thank you Ruebacella. Im seeing the consultation Wednesday to discuss the treatment plan and happy to take part in trials too.. anything that helps me with my future
Hi Annie I was diagnosed at the beginning of this year with stage3/4 ovarian cancer. It does send your mind into some dark spaces but once the treatment plan was underway I felt more calm. These procedures are so well tried and tested they will talk you through them. The chemotherapy sessions I found were very doable and in a weird way for me relaxing as I knew the cancer cells were getting a beating! The side effects kicked in a few days later but are mostly managed with the other drugs they send you home with. Water is your friend. You’ll be given a nurse specialist to call with if concerned ( my CNS’s have been very helpful) . The operation I was scared silly about but I knew it was so important. As it happens it went well and I didn’t need to have been scared at all. Each stage the ladies here have been brilliant, helping with advice during each part of the path. I’m on a maintenance treatment now a PARP inhibitor for 2 years which is relatively new. In the last few years. Some of the ladies here were on its trial before it became in general use, I am so grateful to them. Most of the time I use distraction as another teal sister mentioned. Detective series, comedies etc. And definitely be careful of surfing the net most information is old. All in all the treatment is doable and most of the time apart from a few wobbles I am not consumed by the diagnosis but having a laugh and living my life. Love Mish 🤗🥰
Hi Mish.. thank you for your lovely message. Strangely the operation is not the one I'm scared of, in fact i cant wait to have it so to get this nasty horrible thing out of me… i have stopped searching on the intranet now, not only is it very draining, tiring and exhausting and leaves me with no good feeling. . Thanks for your advise. Love 🥰🥰
Hi there, Annie. I am sorry that you have received this challenging diagnosis, but I am glad you have found your way here where, as you can already tell, there are so many kind and supportive women who are generous with practical advice and so willing to share experiences. I fared pretty well as far as nausea and neuropathy. I only needed anti-nausea medicine for the first couple of days after each chemo infusion. I wore frozen booties on my feet and slipped my hands into a soft reusable ice pack during chemo. I don’t know if this helped, but I think it did because I suffered no problems with my fingers. The two smallest toes on each foot became numb during chemo, which faded after chemo ended. I had to have the same blood thinner shots as LesleyGB and they were not bad. My daughter gave me mine and she became so good at it, I barely felt the injection. I had a port installed in my chest, which I find has made the chemo sessions easier because no need to dig fir my tiny veins. Several ladies have expressed an opinion on ports and if you search Posts, you can get various views on this and discuss infusion options with your doctor. Be sure to take extra care with oral hygiene. I avoided alcohol containing mouthwash to prevent drying my mouth out and brushed religiously and used salt water rinses and flossing or WaterPik use after meals. I think this helped me avoid mouth sores. Oh yes, there are snacks at the hospital during chemo, but I always made myself a nice sandwich. They even have heated blankets and nice reclining chairs. I snoozed a fair amount during my chemo. Get a little chemo bag together with a book and other things to occupy yourself so you don’t become too bored. I hope these tips help and I want you to reassure you that chemo is doable. Best wishes from Louisiana,
Sashay
Hi Sashay.. thank you for your lovely message. I hope that you are doing well.. all the tips are so helpful 🙏 x
Hi Annie
I am six months on from you, having been diagnosed in March this year with 3c ovarian cancer. I can totally understand the shock and fear you are feeling. My plan was same as yours, but I had bad side effects after they did the first chemo (which was just carboplatin to ease me in), so they only used carbo for the first 3 cycles, which didn't shrink the cancer enough to allow an op, so the paclitaxel was added for the second set of 3, and I am due an operation in 10 days, which I am terrified about.
The chemo sessions themselves were fine. You have a lovely comfy reclining chair to sit in, and it's a chance to not do anything for several hours, apart from (for me) listening to music and surfing the net on my tablet. The chemo nurses were wonderful.
I have had pretty bad side effects from the chemo, usually starting on day 5. I would say that the first and fourth times were the worst (introduction of carboplatin, then introduction of paclitaxel). But, here I am, having come through 6 chemos. It has been a real rollercoaster of emotions, made all the more difficult by not seeing much of people because of Covid, and also I've felt so ill at times. But, you will get through it. Do reach out to others on here in the same situation for reassurance, as you may possibly need it during the more difficult times.
Of course, some people coast through chemo and don't have a lot in the way of side effects, and hopefully, that will be you too. Just reading some of your replies, you'll have been able to see that. You won't know, until you start chemo, just how your body is going to react to it. I found it helpful to keep reminding myself that the side effects were a sign that the chemo was killing off the cancer cells.
I wish I had come to this site long before I did (not long ago), as I found that I gained more knowledge and understanding here of my condition than from any medical professional I have come across so far (although I am looking now for a second opinion, something I wished I'd been aware of many months ago, and which I found out about on here).
You take care, and do get in touch if you need any more info. All the best. X
Hi.. thanks for your message. You have got through chemo so you will get through the operation with flying colours.. the nasty horrible “bug” will get thorn out of you so there.. you can say goodbye to the disgusting invading foreigner as it will sit in a container on the hospital table and no longer has access to travel in your body 😂😂👍🏻🥰
I’m so sorry you get to join our club! I can’t say it’s pleasant but you get swept up in the treatment and used to it. I was terrified of chemo but I got used to it. Others worry about the surgery but it’s all manageable especially if you have support from friends and family. You’ll probably be in shock at this point. Try to do some enjoyable things in the coming days. Xx
Hi AnnieIm really sorry you've had this diagnosis . You must have so many feelings going round in your head at the moment.
The good news is you have a diagnosis and are getting treatment started so your on the road to recovery already.
I too had 3 lots of chemo, surgery ,then 3 more lots of chemo.
The chemo wasn't too bad at all for me. You will be given medication to prevent side effects. I found they worked really well.
I agree with others about the water and a healthy diet...chemo can cause constipation!
I did have pain after the surgery but nothing I couldn't manage with the pain killers I was given.
It's now nearly 2 years since I finished chemo and I'm currently taking parp maintenance tablets.
I feel physically well and mentally positive. I make plans for the future as I used to.
As your treatment progresses you will I hope begin to feel more confident and the terror will subside.
Do please let us know how you're getting on.
All the very best.
Liz xx
Hi Annie, I can just echo what the other ladies have said. I have gone through about the same treatments as what you will get. Try and stay positive and one day at a time. Best wishes from the U.S. Donna. 😊
Thank you Donna. 🥰
I was in this position 5 years ago, so keep optimistic. Its a long hard road you will be on but plod on and take supplements to keep your immune system up. Wishing you lots of luck 😘
Hello Annie, sorry to hear you are facing OC. Its a journey only you can take, but with all the support from family, friends, and from the amazing ladies in this group you will be strong to fight and keep going. I started my journey in 1990 and have had several reoccurring cancer issues, with several surgeries. My best support came from God, He gave me the strength to stay strong and my faith kept me going. May God send His Blessings to you our teal friend. Pat
Hey Annie…. The shock is I think the worse thing, I was like wowser where did that come from!!! But I’m out the other side now and one thing that really helped me was being in the moment. By that I mean just concentrate on the here and now rather than looking into the future as that gave me the horrors! Easy said I know and it takes practice but that’s what got me through this whole s***fest, just kept bringing myself back to the here and now, right this second, concentrating on what was good in my life, my kids, cat, relatives, friends, the sun shining, the flowers… you will find your mind takes you to some dark places, I’m not going to lie, mine did! I wrote a journal to scream and shout into and still keep it…remember you can’t control anything but your own responses to stuff and believe me you WILL get through this girl!!!! Lotsa love xxx
Hi.. wow.. really good stuff. Yes here and now is all we have, no tomorrow is promised even for those who have not been diagnosed with any illness.. i think in our busy lives we forget how to live in here and now and its only when something like this happens you wake up… we should have been doing it all along 🥰
Absolutely Annie! Listen I am the biggest wuss and if you’d told me last year at this time I’d be injecting anticoagulants into my tummy and attending chemo sessions like Billy no mates I’d have said you were crazy but I did! Don’t know where the strength came from but I’m here and getting better, bit less hair but alive and kicking and enjoying all the small mercies Annie!! It is s*** but it could’ve been worse… it could’ve been one of my kids (that’s what I kept reminding myself)…darling you will strong this out, educate yourself, learn from all the lovelies on here about what to expect and all the practical strategies that will help you get through but your mind is the big gun that will keep you feeling powerful xxx
Thank you and yes there is always someone worse of then us. Thanks for your support 🥰
Hi AnnieI know how you feel but you will get through this. I was diagnosed stage 4 in 2017 had usual 3 chemos debulking surgery which was no where near as bad as I thought it would and then 3more chemos then a year of Avastin I am a nurse and worked all through the avastin and felt fine.
I now have CA125 blood tests every 4 months and had scan in July. Had one small reacurrence in 2020 lymph node came up in groin so had radiotherapy. Stay positive and don’t look at google the statistics are way out of date so big girls pants on and you will be fine hugs and best wishes Liz
So sorry to hear your news . It is a shock , but I sort of knew that something was wrong since my stomach was so swollen .I went to the ER and was lucky to get a couple of great doctors on a Saturday. They drained the fluid and sent it to the lab did , an Mri and scan .
I was discharged on a Monday and got the bad news Monday evening. I knew an oncologist friend and called her . She had me in her office the next day and admitted me to a hospital in Philadelphia where she was head of the oncology dept at the University. She did more tests etc . And as a result had me on chemo a week later . I had two wonderful nurses who walked me through it and actually I was surprised how well I tolerated it , I didn't even use the nausea pills .
You find strength you didn't know you had and I relied on my two best friends. Rightly or wrongly I was private about my diagnosis since I didn't want to be constantly reminded about it . I just wanted to get on and live my life .
I have good days and not so good days , but soldier on .
Good luck , there are so many wonderful women who are here to cheer you on . I stayed away from the internet, my Dr is where I get my info etc.
Sending best wishes ❤ to you !!
Gill Mookie Fox 1234
Thank you so much x
Hello AnnieWhat great advice you have from all our lovely family, i just wanted to wish you well. Whenever i see a new lady joining us it takes me right back to the beginning of mine, waking up and within a few seconds that reality hits like a train. I remember feelings of how much i would and had lost and yes that stats are not to be read- but we all do! I am coming up to 8 years since diagnosis, same op and chemo and one bump in the road but still here and enjoying every day. I have seen many momentous milestones since then and yes life is changed but not for the worse and those desperate feelings ease as you make sense of it all and start your ‘kick its ass’ plan. Keep positive as i feel that is very important and keep as fit as you can, and as others have said try and live in the moment and don’t worry about the next stage its too overwhelming. Good luck in your journey we are all here xx
Diane
Sorry to hear about your diagnosis. My mom just had her 15 month check up from finishing chemo (stage 3 ovarian cancer) and no evidence of cancer still☺️. She did the 3 rounds of chemo before and then went to a gynological oncologist for surgery and had 3 rounds of IP chemo after. The gynological oncologist was very upset that the other oncologist had her do chemo before surgery. He said outcomes are better with surgery first and then IP chemo. Wish we would have known that prior so thought I would share. Good luck!
Oh really? I didnt know about that and they haven't said to me that's its better or worse to have chemo first or after surgery. The aim is to shrink the cancer before the surgery to make the surgery more successful. I don't know now what to believe is best 😪😪
Yeah we didn't know anything about it either but after doing research it says generally better to do surgery first only if possible. Sometimes it's not. The surgeon thought he could have done my moms first. However, 15 months later she's doing great with no evidence of cancer so who knows! The IP chemo, directly in to the abdomen is supposed to be really effective too. Harsh but supposed to be better than just IV. Would be good to just ask and make sure you have a gynological oncologist. My friends aunt had surgery and then just IV chemo. 6 years later still no cancer☺️
Yes it is! Keep us posted and good luck!!! My mom handled chemo really well! Much better than we imagined. You got this!!
I'm very abrehensive about the whole thing and now feel I need detailed reasons why they feel chemo is better before surgery. Perhaps I'm very advanced in stage although was told my lungs and organs show clear at least on scans but only they know the full story.. 🙄
Don’t be frightened, Apprehensive yes, we have all been & the fear is greater. Was at your stage 3 years ago & still here. I’m not cured, don’t know if I ever will be!!!!! However I am being well looked after & do have a life o/side hospital. This forum is a great help & all the charities, you can always ring them if you need reassurance. Try & take each day/week as it comes & you will start to feel better as you gain confidence in your team. Cheers Iside
Thank you..🥰.. im having up and downs with my emotions at the moment but the news are new to me so guess its totally normal. I keep bringing myself to here and now which helps me to stay in the moment rather than look too much ahead. I have given cancer a new name. Its called "Cancure".. so I now call it at that as it has cure at the end of it 🥰..
Cancure it def., is from now on, Thankyou X
Hi Annie, I was diagnosed with stage 3 Ovarian cancer in April 2019. Yes, it is very scary especially as you read about it — but , it will not be as bad as you think at the moment . My Ca125 was so high that I needed 5 rounds of chemotherapy before the surgeons could operate . I had a 10hr operation and recovered well. This was followed by 4 more rounds of chemotherapy and now I have Avastin every 3 weeks. Although , all you feel like doing after chemo is lying around doing nothing, I decided to walk a little every day just around the house using my Fitbit to count steps . Initially , I could only manage 400-500 steps but slowly increased it every day up to 5-6000 before the next round of chemotherapy . This helped with blood circulation and made me feel better than just doing nothing !!! I lost my hair — but was recommended to an amazing guy who found a wig that looked exactly like my real hair. My chemo finished in February this year and I am actually at the hospital for my 3 weekly Avastin infusion now. We have just returned from Cornwall where I was able to walk parts of the very hilly coastal path!!! So, please just take one day at a time and keep in mind that you will recover and lead a normal life . My nursing team gave me a list of ladies who were happy to talk to me about their experience before my operation. Maybe , that will be available to you ? I found it very reassuring to talk to someone who had been through the whole experience and was living a normal life. It is a scary disease and in my case, it will never go away . I just have to keep going with whichever drug treatment works. Before your operation , the surgeon will tell you all the things he might have to remove and that is quite daunting . I ended up with an ileostomy and although it sounded awful — it isn’t . There is lots of help and advice if you need an ileostomy and it doesn’t affect your life. You may not need this - but if you do , you will be fine. I simply took the view that it saved my life ( which it did !!)
Fortunately, I am Catholic and I have many friends and family praying for me. — that does help a lot.😊🙏
Hi there. Thank you for your message. Did your hair not grow back or is it that because you have to have Avastin that it doesn't grow back? Im considering cold cap whether it helps or not is to be seen.. . Im so glad that you have built your fitness up. I run every day so fitness and staying fit is big part of my life 🥰
My hair is now a short crop ! I used to get severe migraine so I didn’t use the cold cap as I was told it can give you headaches !
Oh i see. I will try it and see how i get on. Take care 🙂
I hope it works for you 😊
I found that the first 15 mins wearing the cold cap was the worst. I got used to it after that. I had audiobooks on my phone and found them a great distraction. They’re free through the library here. I used the time between chemo doses to have loads of rest & watch tonnes of TV. I saw it as a chance to do absolutely nothing for a week after each chemo. Then I’d get back walking a little and meeting friends. Accept help from anyone who offers and don’t be afraid to ask for help. The best of luck for meeting your consultant today and for the journey ahead. 🤗
Thank you very much 🤗
Hi Annie,
Sorry to hear that you have been diagnosed but you have come to the right place. The ladies here are so supportive & have given some great advice.
Was diagnosed 3C August 2019. Initially such a shock but, once treatment was under way, felt better as knew the cancer was being dealt with. Had debulking surgery first (which was do-able), then chemo (which I found okay, apart from tiredness first 7-10 days after).
Tried cold cap but didn’t work for me. It was tolerable (if you can get through the first ten minutes, then you should be able to tolerate it. Would suggest you try it as may work for you).
Am now on PARP maintenance and doing well.
One last thing - don’t Google stats - they are way out of date.
Stick in there - you can do it. All the best. Please let us know how you are getting on.
Fiona x
Thank you Fiona. Yes horrible shock indeed.. treatment is coming soon so really can't wait just to get on with it. Hoping and praying for the best with treatment and surgery. Thanks for your support x
Glad you are doing well. I pray you continue to come out of the cancer. X
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bowel obstruction help!!!!
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