Hello everyone. I hope I can become a member of your community as I don't live in UK. But, I am a UK citizen. I have been reading this site for some time and today decided to join in.
I found a lump 2 months ago, just before my routine mammography. A biopsy was taken and it was a cancerous lump in my lymph gland but not associated with breast cancer, which were clear. The path lab did further tests on the lump and found it was of ovarian origin. 98% estrogen with a 25% growth rate. I had a hysterectomy aged 39 - I'm now 68 - as the womb had become "stuck" to my bowel after my last child was born. They left my ovaries in as I was younger.
I've had a MRI, blood tests and PET scan and visits to the hospital and have been told I have cancer in the lymphs in my thorax, neck and under arm, both ovaries (they are 6.5cm diameter each), in the peritoneum and 6 or 7 small tumours on the outside of my bowel. As you can imagine, I feel as if it's curtains for me. Also, the hospital oncologist has never had a case where the lymphs have trapped the cancer cells from the ovaries and are not associated with breast cancer. This makes me nervous too. I don't have any secondaries in my lungs, liver or spine. A bonus there then. I have a small benign brain tumour which I've had for 5 years.
As I live in France and it is August, the hospitals are on skeleton staff as France closes down for August, so I have been waiting two weeks already to start chemo and have to wait another week until 22nd. My bowel is now starting to block up and the fluid build up in my pelvis is making me look pregnant and my clothes are tight. I'm in constant pain and discomfort too as one ovary is sitting on my bladder, so I need to pee constantly, and the other has worked its way towards the bowel and is restricting the movement of you-know-what.
I saw my GP today and he looked very glum. Not a good day. He's given me shed loads of laxatives to keep my bowels moving. I'm just wondering if anyone out there has ever been in this situation and can give me some good news. Although I'm 68 I'm a very young pensioner and still have plenty of things to do in my life before I shuffle off. I'm not afraid of dying but I just don't want to do it yet.
To have an ovarian cancer buddy - or more - would be wonderful. My husband is magnificent even though he's a skin cancer survivor himself. But, sometimes I just want to scream and shout and swear and I need to keep a lot in for his sake, although we've just lost our beloved dog of 14 years so we are both very raw at the moment.
I'm sorry this post is so long but I needed to just tell you the facts. Thank you for listening.
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Kryssy
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Hi Kryssy, Welcome to the forum. You sound in need of a big hug, sending you a virtual one to keep you going xx You sound like you are going through so much. Has surgery been mentioned at all? Dont write yourself off just yet I was diagnosed stage 3 OC and despite two recurrences am currently in my tenth year. There are lots of different treatments out there. If you feel the need to rant, scream, shout and within reason lol, swear, this is the place to do it . We are all here for one another another so if you have questions hopefully someone will reply. Sorry about your dog. We currently have an aged lab who we wonder whether he will last much longer bless him xx Kathy xx
Hi Kathy, Lovely to meet you. It is also lovely to hear that you are 10 years down the line and still enjoying life. 10 years will suit me, to be honest. Our Alfie was a black lab - the best dog we ever owned. He was also our last one. He's buried in the garden and we sit with him every day. Sometimes we cry, sometimes we just sit and reflect. Time will heal in the end.
The gyny consultant, whom I saw first, got his team together to discuss how they would tackle me. They decided on chemo first with surgery afterwards if they could. The oncologist said that if they decide on surgery afterwards then they would only be able to take the ovaries. The consultant was more positive and stuck his neck out and said that he thought they could get rid of all the cancer in my ovaries and arm lymphs, but that was before the PET scan showed up all the other places. The oncologist isn't so optimistic. He's a lovely guy, but he's being extremely cautious about what he tells me. This just makes my imagination work in overdrive and I can scare myself witless quite easily. Hearing my children crying on the phone is not good either.
I'm having some sort of receptor put into my chest on Wednesday with a tube connected to the vein above my heart. That will take the chemo every 3 weeks for 6 sessions. On Thursday I'm seeing the specialist nurse and she will talk me through everything. I notice that a lot of girls here know exactly what chemo they are having and I know each one of us is different but at the moment it's all a jumble to me. I wouldn't know one chemo drug from another. I was told that with the chemo I would also get another type of drug which would continue for 18 months after the chemo stops. Haven't a clue what that would be. I will lose my hair after two weeks following the first chemo. That doesn't really bother me to be honest. I just want to live a bit longer.
I suppose I have the added worry of language here. I try very hard to understand everything that's said to me but sometimes I may miss something important. I've stopped Googling too as that only made things worse. I'd rather hear from others, like you, that have been there or are going there and have the T shirt.
My family and friends are coming apart at the seams but keep saying that I am a strong person. I'm not. At the moment I feel like a frightened child caught in the middle of something horrendous and there's no way out.
Hi Kryssy. Wise decision to stay off google, it cant tell you what will happen to you, statistics you may read are simply that, statistics. You arent a statistic, you are you. I remember well the feelings you are experiencing right now and they are awful. I only really felt 'better' once treatment was underway and at least then something was happening to get rid of the beast. From what you describe it sound like you are having a port fitted for your chemo, much easier, at least they wont be poking around looking for veins ! I wonder if its Avastin you will be having alongside the standard chemo and for 18 months after? If you have any questions ask away, sending you a big hug, Kathy xx
Hi again Kathy. I've just read your post about the anti-sickness pills. I've been given something called Emend which contains just three pills. One taken an hour before the chemo and the other two taken for two days after. They are supposed to stop the nausea and sickness. Has anyone heard of those or has experience of them?
Guess I'm going to be a Penelope Puke then. I just hate being sick and I think that's going to be the worst thing for me, more than the baldness. I'll stock up on ginger. To be honest, I've always been a "good" eater and tried to get things in that will keep me well. I've stayed away from conventional medicine, unless I'd die without it, and gone to great lengths to stay healthy as I have a few other medical problems. I'm a great believer in alternative therapies and the power of mind over matter. Yes, I like a drink now and then, but this cancer has hit me like a tsunami. At the moment I'm wondering is it worth having a life without sugar, bad fats and gluten. It's been a waste of time.
What day do you get your results, Kathy? I'll keep everything crossed for you as you sound a great lady and by reading some of your posts I can see that you've been a great support for the girls here.
Hi Kryssy I'm not currently waiting for results. I have a check-up every 12 weeks and a scan every 24 weeks as I am on a trial for Olaparib. My next scan is on 13th September with results on 20th. Time will tell xx
I have a tumour in my neck, deep cervical lymph node, in my pelvis. Mets in my abdomen peritoneal area and bowel. Liver met results due next week.
It does present differently in everyone but I would really try not to worry. Once you start chemo you will notice improvements in your symptoms. To be honest at my hospital 50% of consultants are away too.
Thank you for those encouraging words. Here's hoping I will be at the party and stay for a while too. Are you also in France? I'm in Haute-Vienne, Nouvelle Aquitaine, formerly known as Limousin. We merged with the posher areas in the south earlier this year. Been here 15 years and grateful to have excellent medical care - despite the slow down in August.
Fingers and toes crossed you get good news next week. I was pooping a brick thinking I'd have lung or liver problems. After the positive results for them I really didn't care what happened - but that feeling only lasted until the end of the day.
I'm not in France, but my brother-in-law and his wife are in Pluviers, and my husband's aunt is in Montignac. My husband's best friend (from school!) married a French woman, they live in a tiny village called Montigny-en-cambresis. We go there for chill time, I can leave all my stress behind. So are frequent visitors.
I know there health care is good because our friends tried to encourage me to go there for the treatment, and offered to translate! However my team have been really good so there was no need.
I wish I was waking up to fresh croissants and coffee this morning!
So pleased you get to visit France. It's a beautiful place. No croissants and coffee this morning but hubby's just making me some porridge so everything is right with the world. Yes, I know it's late for breakfast but hubby doesn't do mornings very well but he's the porridge maker so I have to wait. Tomorrow he'll be a zombie as we have to leave at 7am for the hospital. Poor love.
I can only tell you that I was diagnosed 2 years ago with stage 4 Ovarian ( lymph nodes, lungs, bowel and Ovarian masses) and did chemo and TAH...leaving me in remission since Feb 2016.
Don't know what the future holds but I also thought it was curtains for me 2 years ago and I'm still here.....xx
Lovely to meet you and so sorry that, like the rest of us, you have this dreadful disease. Wouldn't it be wonderful if forums like this didn't exist because there was no need for them. But on the other hand, thank goodness they do as none of us should have to face this without someone to share and understand how we feel.
Sorry, but I don't know what TAH is. But, as Jenny says, I'll become an expert at it soon. Did the chemo get rid of the cancer in your lymph nodes?
Hi, So pleased that you have joined us, as it will make such a difference to you having somewhere to cry, let off steam and rant and rave. Personally, living on my own as I do, it's a life line. The usual first lot of chemo is Carbo Taxol, but I didn't know that until I started, so don't worry, you too will become a cancer expert!
I had Avastin added along the route, and sounds like they are thinking the same for you. I have my last infusion later this week, then the following week I go on holiday, putting all thoughts of the end of treatment scan out of my mind, at least for a short while.
There are many ups and downs along the route we have to follow, and having the support of this forum along the way certainly has he!ped me.
Thank you for writing to me. So sorry you have no-one to share your life with. Do you have good friends close by? My husband has been like superglue these last two months but I think I would have disintegrated without him. We've always been very close and loved up, if that's still cool for pensioners, but we don't seem to be able to stop holding hands and cuddling now. He gets upset sometimes but he's trying to hide it from me. I don't think that's good for the soul. I wear my heart on my forehead so it's hard for me not to show my feelings. I feel guilty sometimes that friends are crying for me but I have to just let them feel what they have to feel. I don't tell my children every detail as they are far away and I can't hug them close.
Where are you going on holiday? I envy you. Even our weather - SW France - is rubbish at the moment. Feels more like autumn than summer. Have a great time.
Hi Krissy, I am off to Menorca with my daughter, her husband, two granddaughters and my daughter's in laws. We have rented a large villa with a pool so I am expecting a relaxing/exhausting time!
Yes, I have good friends and family, but it is in the quiet, lonely times often in the early hours, or just before dawn that the panic mounts and I could really do with a cuddle or a hand to hold. 😥
Once you get your cancer plan you will feel that you have more control over the situation. I too practised "healthy living" and thought I would live for ever. Now I alternate between eating sugar washed down with prosecco and considering going over to a vegan diet. (I have been vegetarian for many years) They say that diet makes no difference but I am still not convinced. Food affects so many other illnesses like heart disease and diabetes...........?
Anyway, let us know how your treatment goes, you will have a lot more questions once you start and someone here will be able to help I know. I will post back with the results of my scan. Fingers crossed for positive news. I could do with a break from treatment!
Wow. Sounds wonderful. Have a great time in Menorca Jenny. Perhaps a little holiday romance will come your way. Lots of cuddles etc. - no commitment.
They say vegans live the longest. When the children were growing up we used to be vegetarian all week and just eat meat on Sundays as it was cheaper to feed us all that way. Trouble was, every Monday morning we all had tummy upsets so I swapped the meat day to Saturday so that we had Sundays to recover. Should have learned the lesson and stayed a veggie. Love my fish too much to be honest. I should have been an Eskimo.
Hi Krissy. So glad you've found our little community. It's been a huge comfort for me over the past year when my ovarian cancer reappeared after eight years. Even with loving family support, it can be a lonely time but sharing our experiences really helps. I finished chemo in January and the remaining disease in my abdomen is being monitored. I'm due to see my Oncologist on Tuesday for the results of a CT scan so anxiety levels are rising. All the very best for your treatment. Keep us posted. Sending you a virtual hug Jo 🌻🌻🌻🌻🌻
Hi Jo. It's a great community. Took some time for me to take the plunge and join but so glad I did. I've some hope that I'll be around a bit longer to see my new grandson grow up a bit. I also promised our darling dog Alfie, who we lost just a month ago, that daddy wouldn't lose us both in the same year. Got to keep that promise.
Wishing you all the luck in the universe for next Tuesday.
Well, if it's any comfort, this time last year, I thought I wouldn't survive a year but here I am, not cured but reasonably healthy and enjoying every minute I spend with my two little grandchildren. What a blessing xx
Hello, just a quick reply! TAH is total abdominal hysterectomy! They take cervix, uterus, Fallopian tubes and ovaries out through a cut in the abdomen. I had one on 20th June. Thankfully there was no evidence of disease, just large fibroids and cysts on my ovaries. Hope everything goes well for all of you xxx
Welcome Krissy, It is really hard coming to terms with a cancer diagnoses I thought it was the end for me in May 2014, but once I started chemo a week later, I felt more positive. my first line was carbo/taxol which I had every 3 weeks, started losing my hair soon after, but didn't mind as I was sure the chemo would work. I had total radical hysterectomy after 6 sessions. It was 14 months before the beast came back then I had 6 sessions of gem/avastin, (the first 3 included carboplatin, but I became allergic to that and had to have it stopped) I then went on to avastin alone as maintenance ever three weeks ti it stopped working a couple of months ago, I am now on Caelyx ever 4 weeks and find I am having an easy time of it so far, So it seems that even when the beast comes back, there are plenty of other chemo choices for the oncologist to select for you. ( I was 69 when diagnosed am now 72) I have had 3 new grandsons born this year and I intend seeing a lot more of them (travelling permitted, I live in Spain) so dont you give up, do what we ladies do and pull up the big pants and give it hell!! lots of hugs. xxx Jeanette.
Hi Kryssy, You are certainly welcome on the forum. I think we come from all over the place but wherever we live we have a common bond. We like to help each other where we can and support our ups and downs.
I have similar bowel problems as you as my tumour was stuck to my bowel and the cancer had spread to it. I still have my bowel, luckily but I have lots of help every day to keep things moving due to the amount of damage.
Once your chemo starts you will start to feel a bit better in yourself because you know that something is being done. I'm sorry I can't help you out with the other problems but perhaps deal with one thing at a time.
I'm stage 3C and had my op and chemo 4 years ago so there is definitely hope for everyone. There's always someone that will survive even the worst of things and why shouldn't that someone be you.
Welcome to you! Echo all the support from our trouper family!
You will always have understanding from us as to what you are going through.There will be lots of ups and downs! Make as much as you can with the ups!!
My OC was diagnosed at a late stage in April 2004 by which time it has metastised to the lungs , with a small growth rate. No chemo since Dec 2014, but will be restarting soon after hospital procedure to insert a stent through my kidney which has a blockage
Hoping as we all do forcontinuing control and maintenance of this vile disease!!
Sending you a virtual hug Do keep in touch with your progress
Welcome Kryssy- So glad you found us gals and decided to post. There is a collective wealth on this site and everyone will jump in and help you. Feel free to rant and rave as needed. We all react to chemo differently. I never threw up and was rarely nauseous with chemo. If I was it was because I failed to eat anything. The steroids made me sick so on the days I received only the Taxol, thats all I got. Infusion and off to work. I never took any of the anti-nausea drugs I have at home. i never needed them. i did get constipated so be prepared. Drink drink drink water as much as you can handle as it flushes the dead cancer cells and water out of your system. this is so so important.
The port is a godsend. It takes a while to get used to but at chemo time its great. Saves the arms. i still have mine(10 months post chemo). It becomes the new normal for most of us. Keep us posted on your journey and remember we are ALL HERE FOR YOU. Hugs, Carol
Everyone is being so kind and supportive to me and I will get around to replying personally but today I don't feel great. Lack of sleep and blocked bowel is taking its toll. Public holiday here so nothing open but hubby being a super star and making me laugh, especially when I release the most horrendous farts. At least something is coming out. He's keeping me away from all naked flames. Love and hugs to all of you. Xxx
Welcome to the group. Very sorry to hear you lost your doggy. We took on a very difficult Husky a year before I was diagnosed. He bit me half way through my chemo and my husband now has to take him to work. We love him dearly but it has made life very difficult. I don't have any advice as have a lot of difficulty getting information about my op from the hospital -I have a scan this week. Please let us know how you get on, Wendy
Sorry you are having a rough day today. I am from the USA but love this group of fantastic ladies. Those blocked bowels are a problem as I am dealing with them myself. The protocol that your doctors have you one sounds correct for your situation, from other stories I have read. Glad hubby is making you laugh and yes I have been told the "gas" is a good thing for us. LOL. I am sure you will find this group to be boundless in information and tons of laughs too. Wishing you well.
Glad, in a perverse way, that you have found our group who are all so supportive and who have developed such a good knowledge about this awful cancer. It's helpful that we all appreciate what all the ladies are experiencing as we are all in the same boat; often it is easier to "sound off" here than it is to our nearest and dearest! I myself have a rare type - low grade 3b. and am 3.1/2 years along the line. Currently am on taxol/platin 18 weeks - 6 treatments; I feel I have managed this with few side affects except starting to feel more tired after my 4th chemo. I am also requiring Filgrastim injections post chemo now for 5/7 days due to low neutrophils (immune system) but they are so easy I am injecting myself into my stomach. I also take the meds for nausea, etc. for two days after my chemo but am not needing anything else after this except meds for constipation which I use rigourously.
We have a villa in The Lot Department which we let out in the season mainly to English holiday makers. Our caretakers say the weather has been somewhat mixed. We love the area but have not been able to get over to France due to my treatment but can't wait to get back there.
Hi Kryssy, welcome to our "club". I'm sorry you've had this diagnosis. I had to wait four 4 weeks between the tumour being discovered and my surgery and I remember it being just as you described. That was 4 years ago now. Once you get started you will start to feel some improvement. Try and take things really easy in the meantime, no Navy lifting, you don't want to do anything to the tumours. I'm sorry about your wee dog, they do become part of the family. Take care. Ann xx
Hi Kryssy, just wanted to say a quick hi from Seattle, USA. I found this board to be the best of the lot and the UK ladies and the rest are fabulous (but not alarmist!). I have found much comfort, encouragement, and great information here. I have just completed 12 weekly treatments (4 rounds) of carbo/taxol. By far the worst side effect for me was the constipation. Definitely search that in this community (Search My Ovacome box) and get some great suggestions. As for the nausea, I tried to avoid the drugs if possible. One of the non-drug things that helped was those Sea-Band seasickness wrist band things. They worked best on the low level nausea that just seemed to linger. You can get them on Amazon or in most drug stores (pharmacy). By far, the beginning is the worst, most frightening, most confusing time. Take it day by day and know that you are supported. Hugs from across the world, Kathy
Welcome! This is a bits and pieces reply based partly on the whole thread.
Not surprised you feel a jumble and bombarded with a new language which makes French seem easy! We all did. But give it time, and you too will be speaking it like a native.
I've found a number of French forums, similar to this ( though not as good, of course!) which may turn out to be good ways of familiarising yourself with the relevant French vocabulary.
From when I looked last time, the care protocols are pretty similar to here. If you look at the NICE guidelines you may be able to match up the terms. Do you have someone to go to appointments with you? It's always helpful, especially if there's a language complication. There are a number of French speakers on here, including me, or women based in France who you can call on.
I was interested that they seem to have inserted what sounds like a portocath right from the start. Most of us have opted for them when our veins start pegging out. It will make treatment easier.
Are you being treated in Limoges? Did you/do you have a choice of centre?
I'm fairly often down your way- about 75 km south of Limoges, but no trip imminent.
I too had breast cancer before OC and one of the first questions was whether the new cancer was related to it on a new primary, so I'm a bit surprised at what your doc said, but perhaps this was just lack of experience.
If you search on this site, you'll find there are quite a lot of discussions about surgery and quite a lot of women seeking second opinions in complex cases. A few points perhaps to bear in mind: some women end up having less radical surgery with one surgeon than they might have had with a different one; ideally the surgeon will be a specialist; "debulking"- reducing the volume of disease as far as possible is desirable.
This has turned out to be a jumble in its own right, but I hope it's helpful.
Hi Mac27. Nice to meet you - as it is everyone who has taken the time to reply to me. I feel quite overwhelmed.
I'm having my chemo and oncology appointments at the Chenieux Clinic just south of Limoges and scans and gynecology appointments etc at Emailleurs in the centre. They are linked, even though they are seperate. I had a massive senior moment this morning as I went to Chenieux to have my port fitted only to find I should have been at Emailleurs. My fault entirely. I didn't read my appointment letter properly. Trouble was, hubby was half way to Bellac - about 70 kms away - before I found out as he had a physiotherapy appointment and blood tests. I had told him to just drop me off and come back when he'd finished. Panic stations when I realised I had to get across Limoges on foot. But, Chenieux was great and got me extra time at Emailleurs so that hubby could get back and sort me out. My port is in and although I'm a bit sore I'm happy that things are moving in the right direction.
I can speak French ok but when I'm stressed I am worried that I may miss something important. I'm not too good with medical terms or if someone speaks very quickly. Luckily, once I start to speak French the hospital staff tend to reply in English. I think they prefer that I make myself understood. I didn't think my accent was that bad but I have made some gaffs over the years. I was once explaining a problem with hubby's "cul" when I should have been saying "cou". He was extremely surprised when asked to remove his trousers......
I have a "buddy" from Cancer Support France and if I need someone to accompany me to hospital appointments etc then they are able to help. I speak to my buddy, Sue, every week. I doubt we'll ever meet but she's at the end of the phone when I need her and I can cry without feeling a wimp. Hubby has a buddy too. We don't discuss with each other what we talk about but it helps us both. I'm not saying it's better than Ovacome as here I'm with girls in the same boat and we'll paddle along together. It's entirely different.
Tomorrow I have an appointment with the cancer nurse. It's a long appointment - hour plus - and everything will be explained to me including how to get my wig. I can ask questions too. Afterwards we are going to a friend's 60th birthday party so another very long day. Only 6 more sleeps until chemo starts. Can't wait. It being August everywhere is short staffed so I'm having to wait slightly longer for treatment. Just my flipping luck. But, I've managed to poo and to be honest, the pains are slightly less today and I'm feeling quite upbeat. I think the ovary which was on my bladder has moved as the pain has gone from my bladder and I can now hold my pee for over an hour.
I'm going to do a separate post over the weekend about diet as I've found out some interesting facts and wonder how many of you follow a regime. For now I need to get some rest so I will wish you all a very good night, sleep tight and hope tomorrow brings good health and longevity.
Kryssy xx
All good to hear.
You did start my day with a giggle as I remembered our very boring French teacher practice vowels sounds and in particular the difference between "u" and "ou". He had a point after all! Good to hear the plumbing's unlocked.
You need all the help you can get with cancer, so having a buddy is great. But you're right, there's "cancer" and there's particular types.
I expect you'll learn a lot with the nurse. I've heard the wig arrangements in France are very good. And you'll find the specifics of which chemo drugs you'll be getting and how often. And then you can come back on here and find out how we all experienced them and tips for tolerating them better. We've tended to find the professionals tell so much and others can complete the picture
My tip: don't expect it to be bad. Chemo gets a bad press, but we're all different and we all react in different ways. I've had five different regimes and only one of them really conformed to the stereotype.
It's a bit like a vicarious road trip writing to you as Bellac is on our route..... St Junien....... etc etc...
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xx
New here - terrified about test results
new here 
Hello. I'm new here and just want to connect with other people and ask for advice and support
Having a bad day! In need of a bit of a boost.
New here 😍
