My lovely Ann (not her real name) passed away on 2nd July and I am broken. She went to a&e with abdiminal pain and bloating 22nd Oct, had a CT scan which revealed a large complex mass on her ovary, probably cancer. Ann had debulking surgery 4th December, full hysterectomy, omentectomy, removal.of some of small bowel mesentery, appendectomy, some other nodules. On 21st Jan, which was an awfully long wait, she had her follow up appointment which confirmed her diagnosis of grade 3c clear cell ovarian cancer. She was told it was incurable but treatable. Ann started 6 rounds of carbo/taxol on 7th Feb, so over 2 months after surgery. Ann was supposed to have Avastin alongside but the oncologist decided she wasn't well enough. Whilst waiting for chemo she developed very painful build up of ascites and had 4.5 litres drained prior to stating chemo. She also started losing masses of weight and was vomiting constantly and was clearly and frighteningly very unwell. I'm tormented by many things, one being the length of time between surgery and chemo- don't others think this was too long? The length of time between surgery and follow up- too long? Basically the cancer really got a grip in that period. Why not chemo/surgery/chemo? [Edited by moderator] Can I ask for some kind of debriefing? Can I complain?
Too long between surgery and chemo?: My lovely... - My Ovacome
Too long between surgery and chemo?
Dear Joystur
I can’t offer an opinion on the wait for chemo but I can offer my heartfelt sympathy to you and you family. Ann’s illness and death must have been incredibly traumatic.
I know clear cell can be unpredictable and aggressive. I often say that OC does not play by the rules and that can be very hard when you are on the sharp end of it.
Take good care of yourself.... I am sure Ann would have wanted you to do that. Maybe ring the Ovacome helpline as they can talk you through whether or not the waits you encountered are within guidelines xx
I am so sorry for your loss and for your upset.
The timing of the post surgery chemo depends mainly on the condition of the patient after surgery. It can be as early as 4 weeks and can extend to 10-12 weeks afterwards or even more (not ideally). To be precise the sooner the patient has had a good recovery, chemo can be prescribed.
Ascites immediately after surgery are not necessarily due to cancer but most probably due to the surgery itself. Debulking surgery also known as the mother of all surgeries due to its extent and the required aggressiveness in dealing with a very difficult type of cancer and aiming to remove as much of it as possible.
Before you go through the complaint process, asking for a debriefing is good idea and it is important to establish whether your friend, RiP, has perhaps developed post surgery complications rather than a very soon to recur cancer? do you know if they were able to remove all the cancer?
As for your question why not chemo/surgery/chemo, debulking surgery, as I understood it, is what they normally do first for advanced stages ovarian cancer. There are occasions when they do chemo first due to the size of the tumours, for example, they'd want them to shrink them so they can operate on them, or simply because they were not operating during Covid and for a period of 4-5 months.
Look after yourself and as we all hope it might happen after death, we pray that your friend is now in a better place and pain-free.
Dear Joystur,
I send my sympathy, as many who read your post will, although it is hard to find the right words.
There is a limited number of options for advanced Ovarian Cancer but there are enough for us all not to follow the same path, without one being right and another wrong. You can read many personal profiles on this site to give you some idea.
It strikes me that you have unanswered questions and need to seek a professional explanation. I hope you have the status to seek and be awarded the explanation you need. Should you not receiver it from your beloved’s health professionals (perhaps a cancer specialist nurse rather than the surgeon or oncologist would be more approachable?), maybe you could ask the admin staff of this site?
Should you still feel uneasy about the care you’re loved one received maybe talking to an arbitrator might help. In the UK that would be the hospital’s Patient and Advice Liaison Service.
Maybe you could seek some help from bereavement counselling, there is no quick way to ease the agony you must be suffering but please don’t try coping with it alone.
I hope you can find some kind of peace eventually and wish I could offer more.
Iris x
So sorry to read your post. I cant add to the very helpful posts other than to say get in touch with the hospital's PALs service I have used ours a couple of times and they have been very helpful.
My sincere condolences to you. I’m sure you must be shocked and grief stricken at the sudden loss. You’ll have many questions you would like to ask about her treatment. I can only say that decisions about surgery and chemo can take sometime to make depending on how well they can be tolerated and they are not easy choices for anyone. It sounds like the debulking surgery was extensive and thorough. Chemo can be very debilitating and may be deferred to allow for recovery from surgery and 6-8 weeks is not unusual for major surgery even without any added complications. I don’t know if Covid had any influence in the decisions.
I hope you get the answers you need to help you process your grief. Look after yourself.
Cheryl
I would just like to express my sincere condolences for your loss you must be feeling absolutely devastated and I feel your pain and wish there was something I could do to help you. With regard to the tine in-between the surgery and chemo all I can say is that my oncologist said not to delay it more than six weeks after I had my debulking surgery but this may have been just her decision. I had it four weeks after but I must admit I did struggle as I was still being sick 8 weeks after. I do hope you find the answers you are looking for and I think you need to do this for yourself as to give you some peace if mind and closure. Thinking of you at this very sad time and prayers to you.xx
Hi Joystur,
I'm so sorry to hear about your loved one. I hesitated before replying, because I don't know if it will help or not, but here goes. I followed a very similar path to Ann the year before - diagnosed in Oct, debulking in December, then chemo at the end of February. To be honest, I didn't think I was strong enough even in February to begin chemo. I just about coped with it and have been in remission for over a year now. Looking back, and bearing in mind the risk, I think the waiting period was just about right for the operation I had, which was very similar to Ann's, plus colostomy formation. I didn't get ascites.
Sadly, my sister got diagnosed with pancreatic cancer soon after me (we have the brca 2 gene), and has since died. This was partly because of the time it took them to diagnose her. While she still had time, my sister complained to the hospital, who carried out an investigation and changed their procedures as a result. This helped me come to terms with their part in her death, if not her death.
Definitely ask for a debriefing, I'm sure it will help. Best wishes, Jacky.
So sorry for your loss, you must be going through a very difficult time, trying to come to terms with what has happened.
There are situations where a surgeon decides that surgery first is the best option - for instance, if they think they can remove all identifiable tumours - then give chemo to mop up any remaining disease not visible during surgery. I was in this position, so had surgery first, which staged mine at 3c, then when I had recovered sufficiently from what is a very major surgery, started chemo 7 weeks later. I was told that it can be possible to start chemo 4 weeks after surgery, but it depends on the state of health of the patient, and mine wasn't up to it.
I asked about Avastin with my chemo, but I was told it wouldn't be helpful as surgery had removed all visible tumour and Avastin was used where the surgeon was unable to fully remove tumours.
You could tear yourself to pieces wondering about all the "what ifs", and you may find it helpful to speak to someone really knowledgeable - as Lindy suggested, you could call the Ovacome helpline, or Target Ovarian Cancer also has a nurse-staffed helpline. After all, though we can understand and empathise with your feelings, the majority of us are not healthcare professionals and we are only fully informed about our own cases. xx
I have stage 3c clear cell. I had successful surgery on 1.12.16 and my chemo started in February 2017. I tnought that was a long wait. However the chemo failed completely and the cancer grew back everywhere including the liver. It is more the fact that chemo often doesn’t work for clear cell that is the problem rather than the timing of the chemo- however- had she had the chemo earlier they could have found out quickly that it wasn’t working and then tried something else. I was given all 6 rounds of chemo which damaged my kidneys for nothing. I decided to get a second opinion in London and have been on a trial fir the last 2 y1/2 years. So I believe that the delay in Ann’s case may not have affected the outcome of the chemo but almost certainly prevented her from getting alternative treatment as she was then too weak. Hope this helps.
Hi Neona, I somehow found myself reading a post from you 9 months ago when you told us your chemo had failed miserably and the cancer spread everywhere including the liver. Would you mind telling me which trial you were/are on as my cancer has spread to my liver and gall bladder and a Fes lesions in the peritonean. I’ve had my 3rd infusion of Carboplatin today and presently just clutching at straws hoping for a good result. Love from Angela x
Will pm you.
Hi again Neona. Just read your profile which stated the trial you’re on. It Looks very encouraging Love Angela x
So sad. I’m truly sorry for your loss, Joystur. Such an unpredictable stage in life we go through. I can’t comment on the wait time but hope you find the answers for peace within yourself. Stay strong, Joystur!
Love and prayers 🙏
Evelyn xo
Deepest sympathies on your loss Joystur, I underwent surgery in January of this year and was due to undergo chemo within 4 weeks, however it was pushed back a few more weeks, this was because the wound from surgery had to be fully healed even the slightest opening in the wound meant they would not undertake chemo, as the chemo would not allow the wound to fully heal, and could have resulted in infections. I underwent 6 rounds of chemo finishing the last one in July. I would ask the team why chemo wasn't undertaken within the time they said but think it may be just stated as a guideline depending upon how well the patient recovers.
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