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For Ovarian Cancer Awareness Month, we hosted a web chat hosted by Macmillan Nurse Heidi Lindenstock, who answered your questions on the disease, screening programmes and genetic risk.
I’d like to say a massive thank you to Heidi and Jane Murphy for their time and amazing efforts, and a big thank you to all those who took part. If you’d like to read up on this topic, we have more information in our ovarian cancer section.
I have Ovarian Cancer Stage 4, and already have fluid in the lungs - is there treatment or this, or is it too late?
When cancer has spread outside of the ovaries, treatment may still be possible, although the aim of treatment will be to try and manage the disease as opposed to curing it.
Can they continue to drain the lungs all the time or would this impede treatment? I’ve already lost my mum to ovarian cancer in 2009, but now we have just heard that my sister's mother in law has it - at stage 4. It seems that it is always so far advanced by the time we catch it!
I'm sorry to hear about your Mum, it can be very hard when you've been in this situation before not to think the same will happen to your sister's mother in law. However, cancer affects everyone differently and she may have a very different experience to your mum. Ovarian cancer doesn't always cause obvious symptoms and sometimes it can go undetected for a long time. Perhaps, if you would like to talk through your own feelings around risk, you could call the helpline on 0808 808 00 00. One of our cancer information nurse specialists would be very happy to talk this through with you.
I am concerned about the return of the cancer. My mum and I were diagnosed at the same age and they think there is a genetic component. Her cancer returned about 1 year after the surgery and chemo. I am now 1 year after surgery and 7 months after chemo with a good prognosis but the doubt stays with me…
I’m sorry to hear both you and your mum have been diagnosed with ovarian cancer. As we've been saying everyone's cancer is unique to them and what happens to one person may not necessarily happen to another. We do know that adjusting to life after a cancer diagnosis can be very difficult and it's natural you are finding that uncertainty hard to cope with. You may find it helpful to look at our information on adjusting to life after cancer.
What are your thoughts on taking the trial drug Cediranib? I have been taking this since Decemeber 2011 after my cancer recurred within 6 months of chemo and op.
I imagine you are enrolled in the Icon 6 trial to be receiving this drug. As you may know with clinical trials, the aim is to compare newer treatments with standard treatments to see if this offers an additional benefit at all. So, the answer to your question is, as yet we don't know.
Do you think it is just vanity to be hung up about a wonky stomach (sticks out more one side than the other since surgery) and is it worth talking to the docs about 'having it fixed' to assist with self image?
These are the things that can affect how you cope with a diagnosis. Do speak with your gynae clinical nurse specialist (if you have one), or your consultant about how you feel after your surgery. They can talk through whether something could be done to make things a little more acceptable to you. We also have a section on coping with body changes for more information.
What checks are available for Ovarian cancer?
At the moment we currently don't have a screening test that is reliable enough to use for ovarian cancer in the general population. Clinical trials are looking into screening for woman at high risk and, women in general. Until we get the results, we don’t know if screening tests work or not. But, if anyone is worried about symptoms they should speak to their GP.
It concerns me greatly that screening is not considered for anyone with ovarian cancer in their background whether or not there is more than one.
I'm sorry to hear how difficult you found it to get screening given your family history. If anyone is concerned about their family history, they can speak with their GP about onward referral for genetic assessment. The most important thing for everyone to remember is, if you are symptomatic and your symptoms don't go away, go back to your GP - don't leave it. In regards to screenings, firstly we need the results of the clinical trials regarding the most reliable way of screening women. We are awaiting these results. But, yes it will be good to see the introduction of a screening programme in the future.
If you’re concerned about a risk of ovarian cancer in your family you can use our online risk assessment tool – OPERA that will give you a personal assessment which includes personalised information and support about your inherited cancer risk. You can then print it out and take it to your doctor to discuss the information if you wish.
How successful is risk reducing surgery for those people with a faulty gene?
It would appear in carriers of BRCA mutations, risk reducing surgery might be associated with an 80 percent reduction in ovarian cancer. The benefit of risk-reducing surgery decreases with advancing age.
What about the other way round, risk reducing surgery to 'prevent' breast cancer for those with ovarian?
In those with BRCA mutations, risk reducing gynae surgery (removing both ovaries and the fallopian tubes), seems to offer a reduction of between 30 to 75 percent of breast cancer.
My wife died from ovarian cancer in 2007 and I am interested to know of improved developments in the early detection.
I am sorry to hear about your wife, again, it comes back to being able to implement a reliable, national screening programme and continuing to raise awareness of possible signs and symptoms amongst women. I wonder if it would be helpful for you to talk this through with one of the nurses on the helpline - 0808 808 0000, where we would have more time to support you with any questions. The helpline number if you're overseas isn't free, but if you did want to call, the number you need is 020 7840 7840.
Sorry i missed this session as i am OC. stage 2A and been in remission for 19 months.
I am sorry to have missed this discussion too. I am 55 and post menopausal (3 years) and had a complex ovarian cyst diagnosed by ultrasound in January 2012 but a low CA125 blood test. I have symptoms (since mid November) which have been diagnosed as suggestive of IBS but I have never had any bowel problems before and they have coincided with the finding of the cyst. My gynaecologist did the Malignancy Risk Index (as per NICE Guidelines) and assessed me as "low risk". However, he has told me the cyst cannot be ignored and the CA125 blood test is only an indicator and has recommended I have both ovaries removed, but I am still waiting. My auntie died of ovarian cancer.
Has anyone had a positive ultrasound but negative CA125 blood test and still been diagnosed with ovarian cancer? I feel my concerns about the cyst together with the bowel disturbances, constant bloating, etc are being ignored by the NHS because of a low CA125 test and I am still very worried but no one is reassuring me.
I am 52 and have been menopausal for about the last year! I also had a cyst diagnosed by ultrasound last sept, was 12cm so quite big. The CA 125 blood test showed no concern & I eventually had the cyst & right ovary out 6 weeks ago & there was no follow up appointment arranged, so I thought that was that! Then the Friday before last I had a phn call from hosp asking me to attend 9 oclock Monday morn, so alarm bells rang & I guessed there was something wrong with the histology of the cyst & was right! It showed it was borderline cancerous? So this week I have had a CT scan & chest x ray & I was petrified of what the outcome was going to be as you can imagine, but was luckily told the following day that the scan was ok, phew! But I now have to have a total hysterectomy, other ovary & omentum out on the 24th!
So I would push for the ovaries being removed (or at least the 1 that has cyst on) as I did. IBS is often wrongly diagnosed with the similar symptoms of ovary problems & as you say, you have not had bowel problems before & this is where the confusion leads to many women being left too long & its wrong! So be a little pushy to be on the safe side.
Screening should be a must really with this being known as the silent killer!?? We have smears for Cervical cancer checks (although you get specific symptoms to make you weary, unusual bleeds etc) so get it checked out, We have mammograms from the age of 50 onwards and also have symptoms with lumps, so this is checked a little easier also. But this ovarian cancer is often diagnosed too late & is not taken as seriously, because the small symptoms you do get are too often passed off as something else? What woman doesn't think that a bit of bloating is normal as they get older?? Rant over, but that's how I feel!
Hopefully you might have heard by now and an appointment has been arranged for you to have them removed, but if not, remind your gp or gyno. I am sure all will be ok for you too though but as he said, the cyst shouldn't be ignored. I have requested you as a friend so's we can stay in touch & let each other know how we get on :-)
Good luck & all the best
Hi. My Mother is undergoing her second round of Chemo for Ovarian Cancer (1st Round of 6 sessions went great in 2009). However, this time has been riddled with complications, including a blocked artery to bowel resulting in 10 days in ICU and and illeostomy bag after the 1st session of chemo in Feb this year.
She took another mild reaction to the 2nd session and now they are looking at a process called 'de-sensitisation'. Can anyone tell me about this ? How successful is it ?
Also a more minor matter my daughter (the apple of Granny's eye !) has just come out in chicken pox. My mother has definately had chicken pox as a child so is she at any risk from contact with my daughter ?........ their time together is so valuable to both of them !Many thanks
Also a more minor matter my daughter (the apple of Granny's eye !) has just come out in chicken pox. My mother has definately had chicken pox as a child so is she at any risk from contact with my daughter ?........ their time together is so valuable to both of them ! Many thanks
I am a 59 year old post menapause who has had symtoms of bloating, sickness, IBS type symtoms, had a scan last week they found a cyst on left ovary, the women who did it said it was 3.1cm, I found her very dismissive, I was terrified and had had a malignant tumour removed from my face 6 years ago, I know its unlikely to have gone to my ovary, but you are not thinking straight when in pain. I had to go to hospital last week in pain right side. am having a CA 125 test today, but do no have a lot of faith in blood tests. cate
I'm sorry to hear you had such a scary experience, and that your concerns weren't taken seriously. If you would like to talk about your symptoms in more detail, you can give us a call on our free Macmillan Support Line (number below). One of our specialist nurses will be happy to talk to you about the tests that you are having.
If you would like to talk to other women who may have been through a similar testing process, you are also very welcome to join and post in our Ovarian Cancer group.
I am 63 years old and diagnoised with OC in January, 2012. Had hysterectomy in February, started chemo in March, the first treatment was ok, second treatment had a reaction anyway have had 4 treatments and none have been without problems. Had a scan last week and an oncologist apt on Monday and ......cancer has returned. Scan showed patches on my liver. Can't have treatment this week as my immune system is low but oncologist has recommended a new chemo treatment to be given weekly - topotecan which, I am told will hopefully shrink the cancer but not cure it. Anyone out there had similar experience, anyone tell me how to cope with my feelings of not knowing how long I have to live. Right now I feel all sorts of emotions
my mummy has had a full cycle of treatment successfully operated but now only three months after finishing chemo they say it may have come back. they have seen strange nodules in her base line chemo and we are waiting for results. she is very depressed. she won't speak to anyone. i don't know what i can do to help her. any advice ?
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