I was diagnosed with Stage 4 OC in May 2023 with the cancer migrated into my colon. I had been feeling unwell for 6 months and was assured by my doctor in February that it was acid reflux. This was despite my mentioning I have gynaecological issues in the family. The symptoms were bizarre as they would disappear for a couple of weeks then reappear. Cramping, loss of appetite amongst others. A couple of more doctor's visits and I was told it was constipation, depression.
End of May came and I was working from home still. I had to ring my husband to come home and take me to hospital as I felt so bad. After many tests I was diagnosed with Stage 4 OC. My tummy at this stage was huge. My CA125 was 390. I had 9 pints of ascites drained and subsequently 2.5 pints take from pleural cavity.
Anyway, I've had 6 rounds of intensive chemo as consultant wanted to contain the cancer before surgery. I managed chemo okay with a few issues. Proliferal neuropathy in fingers and feet but got through it reasonably well. My CA125 levels dropped to 27 and she said the cancer had shrunk. She consulted with the surgeon who agreed to operate. I saw him in January. My husband and I were going crazy as time was going on with no operation date. So......I have been given 5 March as my operation date.
To say I am terrified is an understatement. But, the alternative is worse. My pre-chemo symptoms have started up again. My CA125 is now 55. Back pain after eating. Pressure when weeing and small accidents. No energy.
So many fears. I don't want a stoma but may have no option. Was told I will need more chemo after operation.
I feel like my femininity and personality has been washed away with all this and am struggling.
Just looking for some reassurance.
xxx
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Leopard2018
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I think we would all recognise that fear and the what ifs…
You should be feeling reassured that your ca125 has come down but instead you are having to worry about this surgery. As your date is not so far away now I would suggest that you aim to keep it.
Debulking surgery does what it says on the tin and gets rid of solid disease, which in turn helps chemo and other treatments work better on the microscopic remains.
Another good thing about surgery is that you will gain information about what the cancer actually looks like in there and what course of action is going to be best.
You seem to have doubts about your treatment to date, particularly the wait for surgery.
In my experience you do need to trust your team, if you don’t it might be time for a change.
Once the surgery is done, I would suggest you get a second opinion from a specialist centre. Potentially you might also look for a trial rather than going straight back to chemo.
Giving yourself some options might help you feel a bit more in control.
I have to say that if your surgery is delayed or cancelled (God forbid) I would be ready to complain in the loudest terms!
All the very best with it, I hope your surgery goes well xx
Hi just thought I would answer your post I am 3c ovarian cancer I had to have 2 drains which they took 16 litres both times had 8 lots of chemo and had 18 lots of avastin and on olaparib tablets too I had my operation on 2nd November 2022 and got a stoma too which was so shocked with but I never thought I could cope but I am doing brilliant with it its just part of me now and cannot notice with clothes on still wear the same things has I did before the operation I recovered realy well I still get very tired just waiting for my scan results and hoping there is NED which it was last time hope I have helped to put your mind at rest it's one hell of a journey but you take one thing at a time sending love
Yes they say I may have a stoma I had some cancer on my bowel the operation wouldn't have been so successful if I didn't have it it is a big operation but we'll worth it good luck hope all goes well xx
Please read my story below which may help. My surgery was very extensive and I have a stoma which initially I hated but now it is part of me and I am grateful to it. I call her "Charlie". Best wishes to you.
My Story
I was diagnosed with advanced ovarian cancer in July 2022 and was deemed suitable for surgery following four rounds of chemotherapy in October. A TAH and BSO was booked in for November 2022.
Unfortunately when they started to operate they realised that the disease was more extensive that the scans had shown and involved both the pelvis and the upper abdominal area, with the result being that they could not operate at that time and instead required a multi-team approach.
While I was very upset about this, I was quickly reassured that they would look to operate again when the required surgeons were all available. After this I had another two rounds of chemotherapy and received a new date for surgery in February 2023.
I went to see Dr Lindsay at Stobhill for my pre-surgery consultation to go over the more advanced surgical procedure that was potentially now required and re-sign consent forms, etc. She was very reassuring and went over all the potential surgical interventions and risks involved.
Fast forward to the end of February and upon entering the Glasgow Royal Infirmary for my surgery I was made to feel completely at ease by the professionalism of all the staff involved - from admission to being taken to theatre. I also got to meet Professor Jamieson who was the HPB surgeon. Like Dr Lindsay he was very reassuring, but also very direct and straightforward, ensuring that I was totally aware about the risks involved, however to me the risks were worth taking.
I was in surgery for around 12 hours and had a distal pancreatectomy and splenectomy, cholecystectomy, en bloc TAH and BSO, anterior resection and formation of end colostomy.
When I was diagnosed I was told the cancer was stage 3C, but I now know that I had widespread stage 4B high grade serous tubo-ovarian cancer with extensive metastases to the whole peritoneal cavity and metastases to the pancreas, the spleen and the colon. Thankfully the surgery was a complete success with complete macroscopic resection.
Following surgery I was admitted to the high dependency unit where I stayed for two weeks. Unfortunately, I had to go back into surgery after the first week to resite my stoma as it was not working properly but following a second, much shorter, surgery this was resolved.
The only real post surgery complication that I encountered was that due to the nature of the pancreas I have a persistent pancreatic fistula with a small amount of pancreatic fluid leaking from the remaining pancreas through a small abdominal wall drain which at the time of writing this some one year post surgery it is still in due to leakage of pancreatic fluid. During this period I have regularly been attending Professor Jamieson's pancreatic clinic at the Glasgow Royal Infirmary, and while on occassion I have been upset and frustrated about the drain being in he has always been very open about the risks of early removal and has always taken the time to reassure me that it will be removed in time.
3 months to the date of my surgery I took part in the 5k race for life in Glasgow to raise funds for Cancer Research with a group of family members and as a group we raised over £1,500.
It is fair to say that if I had not had the surgery and Dr Lindsay (Gynaecology Oncology Consultant), Professor Jamieson (Consultant HPB Surgeon) and Professor Roxburgh (Professor of Colorectal Surgical Oncology) had not joined forces to operate on me that the tumour deposits would have grown bigger, invaded other organs and made me sicker, showing the clear benefits of different specialities joining forces for Ovarian Cancer surgery.
They have given me back my life and I intend to live it to the fullest
Hi, goodness, what a story and so glad your surgery was successful.
You may already know this, but there is a very active Facebook page- Scottish Ovarian Cancer Support Group. It was started in response to delays to surgery particularly in the West of Scotland. Some of the group have had their stories published in Scottish media and met with MSPs to raise awareness of the issues. It’s mainly just a great place to support each other, and includes regular lunches in Glasgow. Apologies if you’re already a member !
There will be nurses around to reassure you and help you throughout the preparation for surgery and the recovery afterwards, and you'll find it's much less scary than you expect. Let them know you're anxious, they won't be surprised. Hope all goes well for you, and yes, do consider getting a second opinion from a major cancer centre. Where do you live?
Hello Leopard - so sorry that you are going through this. Warm hugs are sent your way. I totally identify with a lot of what you have said - about the fear and about your femininity being washed away. I had a radical hysterectomy March 2023, followed by 6 rounds of chemo. It felt like for me, I got on a train that I didn't want to board and off I went with appointments, surgery, scans, chemo - another scan.......I felt totally out of control. It was incredibly scary and my world was suddenly filled with uncertainty. But I did get through the year. Personality wise - yes, it changed me but in many ways - for the better. It sounds like a platitude I know, but I actually did realise that I was a lot stronger and resilient than I thought., My partner often says - I don't know how you did it all. And yet - I did. And you will. I literally just took one day at a time - I used to say to myself that I have the present, that is all any of us ever have. I will worry about tomorrow - tomorrow. It takes a lot of self care and finding ways to reduce your anxiety - but you will work out what helps you and what gets you through each day. On the days you need to cry and get angry - whatever,. Then that is what you do. x
I went from working on Friday to being diagnosed on Saturday. Went from bossing my team around (not really) to being flung into hell. As you said, on the journey goes. The last 9 months have felt like 9 years 😕
It's when people say "I can imagine how you feel" I get mad. Nobody but you ladies know what it's like.
Thanks a million. Will remind myself of what you said.
I would just like to agree with you - my GP practice did not take any of my symptoms seriously. This meant that I could have been diagnosed in 2017 but wasn't until 2020. I would say 'Only trust your team if they prove trustworthy'. Mine didn't, hence I didn't have tests or scans at the right times, making it difficult for anyone to judge what is normal for me.
Have not had a stoma and would be terrified like you but my Dad did have one, in his late 80s, and he (not a traditional coper) coped amazingly and went back to playing tennis. Hoping your surgery goes well and that you take heart from the responses from our comrades so far. xx
Thanks. I am NED at mo with a scan on 4 March so fingers crossed. It sounds to me like you did all you could. Sometimes GPs (often male) dismiss women's complaints completely. But not always - as the GP who finally referred me was male. Then the female oncologist and nurse I had would not believe there was anything wrong when I had a recurrence, refused to scan me even as they admitted that my form of OC was 80% likely to recur. We just have to be vigilant and as everyone on this site agrees, be our own advocates. xx
I can totally understand your apprehension as your GP let you down badly. I had a similar experience with my GP, despite the fact I’d had breast cancer before. I can only say that my experience, when eventually I met my surgeon, has been totally positive. I had complications after surgery, but I was well looked after in hospital. I’m 3 years down the line now and I’m able to contact my team via my specialist nurse if I have any worries or troubling symptoms. I have a check up every 6 months. Unfortunately I still don’t trust my GP, but I’ve become much better at advocating for myself when I need to see one.
Dear Leopard- First of all, I’m so sorry that these doctors didn’t seem to take you seriously and blew you off. Typical of male doctors if it’s a “female problem. To them I guess we’re all hysterical hypochondriacs. Anyway, I’m glad you finally have a surgery date. When I had my total abdominal hysterectomy, even though I was no longer of childbearing age, it was still mentally concerning, losing all my female parts that I had identified with for so many years. But everything went OK and it really wasn’t an issue when all was said and done. There are groups or individuals that you can talk to regarding these concerns….. Probably at your cancer center.
I wish you the best of luck with your surgery, and if they suggest further chemo, I urge you to take it. Praying for you.
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