My Mum was diagnosed with ovarian cancer on Christmas Eve 2013. She has had 7 chemos and an op during 2014. I took her for her first 3 month check on 7 Oct 2014 and she was told the cancer cell count was ' back to normal'. Then on 6 Jan she went with a friend for her second 3 month check and her CA 125 count had gone up to over 300. She was stunned, as were the whole family. She had a CT scan and a 19mm growth showed up near pancreas and a 'small amount' of cancer cells in lymph glands. Also a recurrence of ovarian cancer. On 13 Feb she is due to start chemo with Liposomal Doxorubicin every four weeks. Then, after 6 months she may be able to have the original chemo she had. I suppose I'm looking for positive stories and reassurance. Mum is an active and fit person and I'm hoping that the fact she's still active will help her to keep going. Jane
Mum's battle: My Mum was diagnosed with ovarian... - My Ovacome
Mum's battle
What a worry for you both, and how nice for her to have you on her side.
In my experience, we are not adequately or realistically made aware at first diagnosis and treatment of the very high recurrence rate with OC. Or somehow we are, but we can't hear it.
You don't mention what stage your mum was diagnosed at, or what type of OC.
I was diagnosed 1c and was knocked for six when I recurred, admittedly after a bigger gap than your mum. Only at that point did I research it all and discover that something like 75% (some wise woman will put me right if that's not the correct figure!) of OC survivors will have recurrence and in many cases multiple ones and often after quite short breaks in treatment.
Ironically I did this research to try to get a script to give my mother when I told her!
This won't help your mum, but knowing she's part of a very big group of us may make her feel a bit better.
I hope someone else will be able to offer insight into the specific treatment proposed.
All the best to you bothxxx
Hello, thanks for your reply. I'm pretty sure that by the time Mum was diagnosed she was 3c and I believe that's quite advanced. I remember seeing the word 'serous' on the letters so perhaps that's the type of ovarian cancer. Gosh the recurrence percentage is high. I don't think Mum was ever told of that. Perhaps the medics think it's best not to mention it. I believe 1c is quite an early stage isn't it? I didn't do much research when Mum was diagnosed - ignorance is bliss and all that. But now that it's recurred I want to know as much as possible. The appointments seem to take a long time to come through considering what's going on inside there. Mum was told her CA 125 had gone up from 14 to 355 on 6 Jan and her first chemo isn't until 13 Feb and it scares me to think how the cells are multiplying. You must have been so shocked with the news of your recurrence. Mum has been told she has to live with the cancer now and just manage it. I'm hoping she is able to manage it for some time to come. It's been such a blow hearing that it's come back. So, I'm looking forward to hearing other stories. I've signed up for the 10k Race For Life on 12 July and I donate monthly to Cancer Research UK. Best of luck with your treatment. Jane xx
One of the things I found the most helpful when trying to get my head round recurrence was someone saying it was living with a chronic condition, like diabetes.
Thinking about you being so far away, I wondered whether there might be other women with OC near where your mum lives. There do seem to be clusters of us of all sorts of ages and shapes and sizes..... the other thing she might like to do is to go to the next Ovacome members'day - see the website. I went for the first time last year and it's a great way to feel less alone and meet people. Target OC also has Being Together days around the country - see their web-site.
Have a good day!
That's a really good way of looking at it and I'll mention that to Mum.
My Mum is involved with the church. She sings in the choir and she has a lot of friends in the village where she lives which is fantastic. One of her closest friends has been through breast cancer twice and she has also become close to another lady who has been recovering from secondary cancer but I'm not sure what kind of cancer that was. I will tell Mum about the Ovacome Members' Day and suggest she looks at the website. I think now that the cancer has recurred she'll want to actually know more about it, whereas before she didn't really want to read too much. That's why I've registered with Ovacome to try and get as much information as poss. I'm finding it so useful talking with people like you. I have copied and pasted some of the positive stories in emails to Mum and she has enjoyed reading them and it is helping her to feel more positive.
I'm away for a couple of weeks from tomorrow just in case you wonder where I've gone. So catch up when I get back around 15 Feb.
Best wishes and take care. Jane x
Have you thought of applying for the NAEDI Conference. It stands for National Awareness and Early Diagnosis Initiative and it is under the umbrella of cancer.org.uk It is on 26th and 27th March inLondon. Application is open to anybody undergoing cancer (or those close to them). We apply to get a bursary which covers the travel fares and hotel accommodation. I can send you more details if you want to know more.
Gio xx
Hi Gio. Sorry for delay in replying. I've been away for a couple of weeks. I'm not sure if I'd be able to travel to London at end March as I have two children and quite a few things around that time but I'd really appreciate more information if possible and I'd like to go if I could. Many thanks. Jane x
I think that NAEDI were a little overwhelmed with replies, those of us who accept our illness want to do anything to help ourselves so that they got too many replies to attend the conference is a good thing. Myself and another user of this site have kept in touch and neither of us have heard anything but let's hope there are other things that we can take part in. Anyhow, it is certainly worth being aware that there are such initiatives.
Cheers for now,
Gio
Hi Jane. I'm sorry your mum is facing treatment again so soon. I was diagnosed as stage 3b. At my first meeting with the oncologist she advised me that they could not cure me, just manage it and it would return. I did tell everyone this but apart from my daughters and husband, everyone else dismissed what I told them. Mine came back 8 months after treatment finished and what a shock everyone had. My mother in law just couldn't take it in that it was back. I was glad that the oncologist was up front with me at the start, it was a difficult day for me and my husband but at least we knew the reality of what we were dealing with.
I don't know anything about the treatment your mum is about to receive so can't advise you on that. I do however want to remind you to look after yourself. Make sure you have some 'me' time and get out and enjoy yourself occasionally with friends/loved ones. This disease is difficult for you all. Your mum is very lucky she's got you in her corner. Keep posting on here, we will be here to listen and help in any way we can.
Ann xo
Thanks for your reply Ann. I'm so sorry you are having to live with this awful disease. My Mum is 78 but a very fit and healthy 78 year old (well the cancer has caused a lot of stress for her). It's so sad that cancer has intervened. You are obviously much younger. Mum will have to just manage the cancer now as she's also been told it will never go away. I just hope she will be around for some time yet. I hope your treatment goes OK and I guess it's just a case of adjusting and trying to stay positive. I'm over 200 miles away from Mum and I find that difficult but I go down and visit as often as I can.
Best wishes and keep in touch.
Jane x
Hi Jane
I just wanted to say that it is possible to live with this disease. I am younger than your mum but was diagnosed with 3C serous carcinoma in March 2009 and I also had a short remission period. I have been on treatment of one sort or another since but am here nearly 6 years on and have welcomed 3 grandchildren during that time !! Some of the treatments can be difficult but sending hugs and best wishes to you and your mum and hope she responds well to her next treatment.
Good luck
Janice
Hi Janice, thank you for responding to Jane. Your response is so encouraging to others like myself. Thank you again. Ann xo
Hi Janice. What a lovely positive message. These are the kind of stories I want to hear. Thanks so much. I will copy these messages for Mum and I think it will help to give her hope as the recurrence has really left her feeling quite stunned. She was so pleased when the first three month check went so well. Thanks so much for getting in touch. Best of luck for your continuing treatment. Jane X
Hi again Janice. I forwarded your message to Mum and she found it really reassuring. I'm away for the next two weeks and probably won't have access to WiFi so catch up when I'm back. Take care. Jane X
Dear Jane, my story is very similar to your Mum's, although I was 65 when my cancer was diagnosed in May 2013. After 4 sessions of Paclitaxel with Carboplatin followed by a big operation and another 2 chemo sessions I had a brief period of no chemotherapy, but in that time the cancer became active again and I had to have my right lung drained of fluid. The oncologist then put me on Liposomal Doxorubicin last February which finished in July. Almost straight away the cancer was active again and the fluid was back in my lung so I have been on weekly Paclitaxel for the last 15 weeks which seems to be keeping the build up of fluid at bay. I know that my cancer is being treated and that there is no cure, so I try to find something good in every day. I try to walk every day to keep myself as healthy as possible. I've stopped singing in my choir due to problems with breathing properly which is a shame, but you learn to adapt and enjoy what you can. I wish your Mum all the best quality of life. She is very lucky to have you supporting her.
Best wishes - Pat
Hello Pat. Yes, your story is very similar to my Mum's. I'm pretty sure your chemo is the same too in both cases. Mum had four chemos then the debulking surgery then three more chemos. On 7 Oct 2014 I took her for her first three month check and the oncologist said her cancer cell count was 'back to normal' so you can imagine how thrilled we were. So, it was such a blow when, during the next three month check on 6 Jan, she was told there was a recurrence of the ovarian cancer plus cancer showing in her pancreatic region and lymph glands. It has been such a blow to her and she is struggling to keep positive. She hasn't had the fluid on the lungs like you. Perhaps that will happen.
It's such a shame you've had to give up singing in the choir. The church and church choir is such a huge part of Mum's life and if she has to give up singing she will be so sad. Do you think the chemo has affected your breathing? Mum is due to have chemo (pretty sure it's the same as yours) four weekly. First one yesterday. How are you finding the side effects and are you still feeling OK health wise and able to lead a relatively normal life? Mum has been told to keep as cool as poss and her skin may peel so she's been prescribed 'udder cream'!!
It's good that you are being positive. I've heard some positive stories of people living with cancer for years and years, controlled by chemo. So I guess it's worthwhile if that's the case.
I've just had a long chat with Mum and she's feeling a lot happier now. I'm going down to see her for a long weekend next weekend. (She lives over 200 miles away which is difficult). Anyway, best wishes and keep in touch. Jane x
Hello Pat. I've just had an email from my Mum and she had her first Lip Dox on Friday and is worried because she doesn't seem to be having any side effects as yet apart from a bit of a reaction from the steroids. She's worried that this might mean the chemo isn't working. She asked me to contact you as I had told her that you about your similarity with the chemo drugs. Can you give any advice at all?!!! Thanks. Jane X
PS. Pat I can see you were only on the Lip Dox from Feb to July and I was wondering why the medics changed your treatment. Oh, I think Mum was told that in six months time she can go on the original chemo again - Paclitaxel with Carboplatin - so perhaps they have to change it after 6 months. Any info would be great. Thanks. Jane xx
Hello Pat. My Mum has had a bit of a set back. She's been having problems having to pee constantly and a real bad burning. She has been diagnosed with a urinary infection and has been given strong anti biotics. The trouble is, she'd due to have her second chemo on Friday and this may delay it. She's regretting not going to the doctors sooner and is really upset. We don't even know if the Lip Dox is working yet as she's only had one chemo so far. If the chemo is keeping things at bay do you think a delay could make much difference? I know she will be really upset and worried. I know everyone reacts differently but I think I'm looking for some reassurance!! Jane x
Dear Jane, I had a couple of gaps in treatment due to bloods not being right, but the chemo keeps working for longer than just a week, so one missed treatment won't be a problem. I feel that having this illness diagnosed is the start of an obstacle race. Be prepared for anything and have faith in your oncologist. Wishing your Mum all the best. Love Pat.
Thanks for that reassurance Pat. The thought has crossed my mind that Mum might have some problems with bloods. During first line chemo she had to have those injections in her tum due to low white blood cell count. They made her really ill one time so she dreads that happening again. Thanks again. It's so useful to be able to compare notes!! Love Jane X
Hi Jane, I was diagnosed at stage 4 so everything that happened after that was a whirlwind and I didn't take in half the info I should have. I had my first 3 cycles of chemo and an op, was half way through the 2nd lot of chemo and thinking I was going to be in remission when the high risk of reoccurrence conversation took place. It knocked me for six. Once I had time to get over the shock I was able to research and then have a meaningful chat with my Clinical Nurse and Oncologist who both explained it using the chronic illness terminology. This really helped me understand and get back the positivity that I had been feeling previously.
There are amazing stories on here of ladies some in their 70's and others that I've met personally that have multiple reoccurrences and are still battling on. They are an inspiration. Julie xo
Hi Julie. Sorry for the delay in replying. I've just returned from two weeks away. I didn't realise how high the recurrence percentage was. Mum was never told that from the start. Not sure if that's a good or bad thing. Mum just had her first lot of line 2 chemo yesterday and I had a positive email from her. But I know she is struggling to accept that she has got to live with the disease, after the first 3 month check was so positive, and I'm obviously hoping that she can plod on with the chemo and have a comfortable life.
I'm finding it a real comfort reading the positive stories.
I really hope your continued treatment goes well. I think everyone reacts in different ways. My Mum is healthy and fit for her age and she has been told that the fact she's still active is good. I send the positive stories to her in emails. I didn't want to read about it during her initial treatment but now that it's recurred I want to research it as much as possible.
Anyway, keep in touch and fingers crossed for your continued treatment.
Best wishes. Jane x
Spread of ovarian cancer to the Brain
Battle over
Ca125 rising on caelyx
