I started getting pains and swelling in my stomach in May 2011. I went back and forth to the local doctor for a few weeks as the pain was getting worse. The doctor I saw at the beginning diagnosed me with constipation which was then moved onto fibroids. As the pain grew worse i decided to see another doctor as i felt that the first doctor wasn't taking me serious about just how much pain i was in , I was then referred by him for a CT scan the following week.
The doctor informed me that it was not what he had anticipated and that the mass could not be identified accurately as he could not see from the scan where the mass started and ended. At this point he referred me to a consult at the Victoria Hospital in Kirkcaldy.
After doing her own investigation and looking at my notes, the consultant said she was 95% sure it wasn’t cancer as I had had a clear smear test earlier in the year and she wasn’t worried but decided that a full hysterectomy would be the best option for me. While they completed the operation they would do a wash and biopsy to be on the safe side.
As I am a self-employed singer I had to take a break from work as I was told after having the operation that I had to take at least 8 weeks to recover.
I had the operation on October 11, 2011 and all seemed to go well. I waited three weeks on the results of the biopsy. I was then called in by the consultant to give me my results. We (my partner and I) were taken into the consultants room and were informed that it was not good news, that it was in fact cancer. She then went on to explain that it was clear cell cancer, and it was one of the worst types which was very hard to detect. She explained that they could not tell by looking at the mass at the operation stage that it was diseased and needed further biopsy to confirm the disease. She explained that the type of cancer I had doesn’t always react well to chemotherapy but that was the treatment that they recommended for me to take. To say that we were left in pieces was an understatement as we really didn’t know what kind of future I had to face, if any at all.
I was then referred to the Western General Hospital in Edinburgh where they told me that I had been so lucky as I was diagnosed at Stage 2c and was not as bad as first thought. The doctor explained how they planned to go about curing the disease rather than containing it. I can’t tell you enough how relieved I was to hear this news. It gave us hope and strength that we needed to face what was coming next.
I started my chemotherapy two weeks later on the 22nd November just six weeks after my hysterectomy. So i settled into my regular hospital trips for my 6 sessions of chemo and finally got the all clear in April, i would love to say that this was where my story ended but unfortunately i can't .
I started experiencing pains in my stomach again that resembled period pains but as I had a full hysterectomy that is impossible so I mentioned it to my consultant at my first 3 month check. She decided that a scan should be done just to check everything was ok , I then had to go back for my results. That’s where things take a turn for the worst. I am sorry to say that the cancer IS back, unfortunately they can’t do any more surgery because of where it is, and at the moment they don’t want to do anymore chemo as I feel well at the moment and they don’t want to make me feel ill too early so they are going to wait till I start to feel unwell due to it then blast it with more chemo, unfortunately we are now talking about containing it rather than curing.
Please all women out there I can’t stress enough how important it is to know the symptoms of ovarian cancer for it IS a matter of life and death and the earlier you catch it the more chance you have of making a full recovery. It seems I have won the first battle now it’s time for the war …. x
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Shazican
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So sorry to hear that the OC has raised it's ugly head again. It is hard when hopes have been raised to have them dashed again. You will find strength to fight again I am sure, you sound like a fighter.
I don't have the same type of cancer you have and don't know how your type behaves. However each type is individual to ourselves , we do react differently to the disease and to the treatment.
I was diagnosed 2a in 2007 and am now just completing my 6th line chemo. Seem to need annual doses! I have tolerated the treatments quite well, and even during treatment manage to LIVE.
There is always hopeAnd all the wonderful supportive ladies on this site arwe always here with that support, advice, love and laughter.
I'll endorse what Soapsuds has said. Information on the type and grade of cancer we have is based on statistics - but this cancer finds a route of its own for each one of us. I know a member of this site who was diagnosed with Stage 4C 10 years ago, She's been leading an amazing life, and is still clocking up impressive marathon finish times. Others less lucky have a less worrying diagnosis to start but the disease has progressed more rapidly.
The main thing to keep in mind is that we're all individuals and not statistics. I have a cancer that is very aggressive, responds well to chemotherapy but has a tendency to come back very quickly. I've now enjoyed 9 months remission in amazing good health despite the statistics and have enjoyed every moment.
One of our friends on the site advised 'hope for the best but prepare for the worst'. I think that's good advice. Don't be bogged down by statistics. Enjoy every moment.
Let us know how you get on. This site is for you to let off steam, to ask questions, or just to be companionable. We're here for you.
Wishing you love and luck with your treatment. xxxx Annie
I know someone with clear cell OC. The major problem, according to an oncologist I spoke to, is there are only about 200 women a year who get it, so it's difficult to research. But recently a couple of drugs have apparently shown promise - irinotecan and sutent. Also there has been some success with radiotherapy. There's a web site run in the States called Libby's Hope - google it - that contains a lot of information. Please keep on hoping. I don't know if there's an expert at the Beatson in Glasgow who is up to date with the latest developments. (I am Scottish.) You might find it worthwhile to go to one of the major centres in England. Please call the Ovacome help line - they will give you expert advice.
And stay in touch with us. My thoughts are with you.
What you describe is the current best option treatment according to my local hospital support group. If you want to discuss it with someone who really knows, give the nurse helpline a ring at Ovacome. They are great with info and have all been through an experience of OC. The number is 0845 371 0554, Mon to Fri, office hrs. Goof luck with your treatment, keep in touch.......there's lots of us on here who can share in your good and wobbly moments and help a little bit, maybe
Keep up the fight our love and hugs are with youxxx
Dear Shaz
You really have been put through the mill, physically and emotionally, haven't you. I can relate to what you have been through to some extent. I was dxd with Breast Cancer in 2010. It was caught early and I was told it was curable and I had "decades" ahead of me. Even then going through chemo and radiotherapy took its toll, but with a positive outcome ahead, it seemed doable.
I felt better and my husband was offered a contract in Singapore and we embarked on a new adventure, putting the whole episode behind us. I was followed up here by someone recommended by my Oncologist in England. In early 2011 I started to have very slightly irregular test results and by summer I had stomach pains and extreme weight loss. I had scans done which showed I had cysts on my liver. To cut a long story short, by Feb this year I developed acute symptoms which led to a diagnosis of stage iv Ovarian Cancer, containable but not curable. I was devastated as I imagine you were.
What has helped me, and Annie is so right here, is learning that within the stages and types and grades of this disease are the individual stories of women who all have different journeys, and some are very hopeful. For what it is worth two of the women in my support group have clear cell. One was recently in a magazine for a race she did here in full, baldheaded glory!
Oh my dear! What a horrendous experience! Youdo not mention blood tests, are they moniyoring your CA125? I am lucky in that my 2nd mass was operable and was removed last year when it did not respond to the chemo.
I was 3c at diagnosis sohave known from the start that it was tratable but not curable. I was advised to treat it as a chronic condition I needed to live with and I do but it was haard at first?
It must be horrendous for you and I endorse what everyone else has said about the Ovacome help line. If, however, you are keen to be involved in raising awareness then I suggest that you look up Target Ovarian Cancer?. I have been to a couple of days that they organised lately, have helped on a stall at a conference and distributed leaflets about symptoms. Thet also produce training materials for Drs that count towards their CPD points. The days are free, the sessions helpful and you get to meet fellow sufferers in your area!
Another thing I do is talk about the condition, tell the checkout assistants at the supermarket the the reason I am slow is the after effect of chemo and then tell them about the symptoms and how keen I am that others with similar symptoms should go and get checked out and get a CA125 test. This, of course, because my voice carries (exteacher! LOL!) others waiting in the queue hear it too! I bore for England on the subject but I am anxious that younger women get treated early while a cure is still on the cards!
Thinking of you and sending positive thoughts in you fight not to let this thing take over your life! This site is Brill with lots of support when you need it!
Love
Margaret xxxx
Your Dr made the classic assumption that a clear smear meant no cancer! Smears do not show up OC or other abdominal and uterine cancers and this is one of the things Target O C stresses.
I am featuring in one of their new leaflets on living with a stoma!
Sorry about your experiences. I had been attending a gynae clinic because of bleeding Oct 2011, had clear smear and uterus biopsies, but they did not scan me. I was already fat and preganant looking, though at 59 that wasn't very likely, and had had a mastectomy because of breast cancer in my 20s. I really feel they were incompetent. At diagnosis June 2012 I was 1c with an aggressive form of oc, so undergoing chemo now. Why did they miss all these warning signs? My age, bleeding, pregnant look, previous history of breast cancer all make oc more likely, but they didn't even a ca125 at that stage. I'm trying not to think of 'if only...' as it's stress inducing.
Good luck- but you already know by now that it's extremely unpredictable how you personally will progress. After all, in the slightly changed words of The Prisoner 'You are not a statistic'.
I, like you, am playing the waiting game. They don't want to give me more chemo as it's too close to my last lot and want me to start "feeling ill". This time last year I was blissfully unaware of what shocks life had in store, cancer plays havoc with the lives of those affected as well as their family and friends. I try and "do my bit" to raise awareness by talking (I'm good at that to anyone and everyone about the symptoms - vague though they are! I can't stress strongly enough how important it is to pay attention to bodily changes and not just dismiss them as age or menopause related.
As you enter the "war" remember Winston Churchill's quote "Never, never, never give up!"
Wish you all the best. As has been said before, don't get bogged down by the statistics. This time last year, I didn't know if I'd make it to Christmas.
Thank u all so much for ur lovely messages , it is so gd to know that there are people out there who are experiencing the same as me and to know that there is hope .... i am a fighter and will continue to be , i am still working singing and will do for as long as i feel well enough , but knowing i have all u here to ask advice from is such a relief x
MargaretJ , i did get some blood tests done but apparently i'm one of those that it doesn't do any gd my CA125 has been at 7 since i got my hysterectomy and still sitting there yet my cancer is back , that's why some doctors say doing the CA125 blood test isn't always a very gd indicator for diagnosing cancer . x
Sorry to hear about all your issues, can all be hard to take in at times, all the ladies on this site are positive and great, I was diagnosed with 3c 2008 and thought all the worst things, now going into my fifth year and feel pretty good, minor things but better than the alternative, do what you feel you can do and enjoy it, the goal posts change but stay positive, use this site whenever, always some one to talk to and get advice. xxx Jorja
Thanks everyone for your supporting words .. well have been engaged for the last 4 years and been putting it off due to work and family loads , but there is nothing like getting news like this to put things in motion , we have finally set the date for 16th Feb 2013 , Life is so precious and u have to grab happiness when u can , Live life for today that's my new motto , instead of only having more rounds of chemo to look forward to , i now have a wedding to organize , so excited x
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to anyone and everyone about the symptoms - vague though they are! I can't stress strongly enough how important it is to pay attention to bodily changes and not just dismiss them as age or menopause related. 
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