If my onc was male, I'd call her the strong but silent type- despite saying I might have questions as time went on, every one I have ever asked sort of gets ignored or qualified to the point of meaninglessness- so my question is has anyone's oncology team ever explained why ovarian c has overall such a high rate of recurrence? Is it something unique to it or is it down to delays in diagnosis and thus late staging- or lack of research funding unlike say breast cancer? Just curious really as I knew it could come back but wasn't aware until coming on here, just how frequently!
Why such high rate of recurrences?: If my onc was... - My Ovacome
Why such high rate of recurrences?
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Coldethyl
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Hi Coldethyl, this is EXACTLY the question I want to ask....have asked my CNS & I don’t think they know! But there MUST be a reason!! Other cancers that are removed don’t come back like OC! Why is it? I am dying to hear the replies!
I have a theory....vivid imagination I know ☺️.....that because they are germ cells (from a reproductive organ), they’re very strong....what do others think? Lx ☀️🌸
My own type of oc has much lower recurrence rate ( though I am still undergoing tests for it coming back!!) as it derives predominately from atypical changes in endometriosis- but yes do wonder if what you say plays part- know bladder cancer keeps coming back and it's an organ with rapid turnover of cells( hence why it is b*ggered up by chemo) so wonder if ovary the same as eggs maturing rapidly and lots of cellular activity with all those hormones- gald it's not just me that wants to know- I will ask reg if I see her again as she is more open to answering.
Yes I will ask (a few) people at my appointments too.
me too x
There are many reasons. Cell types, tumour types, hormones. Also the way they cells move around the body and the seed and sow pattern they use
With breast cancer the curative rate is 4/5 in OC it is 2/5 although finally they have started ten year data instead of five. There was a research paper that identified we are living with cancer for longer but it was disproved by pointing out actually we are diagnosed earlier so our demand for better info and second opinion has helped us get treatment quicker.
Speaking to a rep from one of the big DCs I was told the research is going on but so few make it past phase one and that phase one recruitment is difficult to get enough uptake
LA xx
Hi LA, sorry for silly question - did he mean so few people or so few drugs make it through phase one? Interested in this as on phase one trial - had read that most trial drugs are abandoned ?
Drugs and participants He said trying to get funding for phase one leg 2 can be difficult as the first leg is about doses and that usually requires hospital beds for obs. Drop out rate is quite high too. People prefer phase 3. There were lots of reasons for why they don’t pursue some drugs even the promising ones. Sometimes because they won’t be able to sell them if they got to market as the cheaper established drugs are guaranteed sales. Carboplatin only costs £18 which says it all
Xx
Many factors, I think. My own layman's thinking goes like this:
a) OC is often detected later than other cancers due to lack of symptoms and truly accurate tests. By that time the disease may already have reached an advanced stage and has spread outside the ovaries, which goes hand in hand with higher recurrence/lower cure statistics.
b) Most of the OC tumours are comprised of high grade (badly differentiated) cells, which might be more prone to proliferating/spreading.
The other factor to consider is that less women fall prey to OC than say breast cancer (not to mention the rare forms of OC like low grade, clear cell, mucinous). So more of the research and trials is focused on the more prevalent illnesses.
Still, more research is coming, so let's hang in there.
Maus
To add to this good summary, I think we may be told 'no evidence of disease' but this does not mean there is no disease - microscopic cell activity cannot all be detected by the scanner. And cells mutate. In my case, most of mine went running from first line treatment, but some clever ones mutated to be platinum resistant. After a period of stability, they are going walkabout.
Agree with you 100%, Christine. The question is how long they stay dormant, and when/where they rear their ugly heads again.
It's the how long is a piece of string question again....
Touching on what everyone has said also it’s pot luck for example you can get a group of women all with same cancer same type of tumour same stage etc and you’ll have loads that’ll reoccur 1 maybe 2 of them will be the ‘lucky’ one(s) and not get a reoccurrence. Xxx
I have my appointment at Christie tomorrow with my oncologist to find out if I have a recurrence. I will ask the question and try and get an answer for you all 👍
Great! 🙂 Hope your appointment goes well Bee. Linda xx
I’ve always thought that ovarian cells must be ace at replication because their purpose is to make new babies...but this skill is far less helpful when they are mutated copies proliferating in our abdominal cavities! Dunno if that’s true but it seems likely to me x
This might be too much detail but I was googling my consultant (as you do!) and found this recent lecture she did for ovacome. You might not want to watch it all but I think in first ten mins or so she talks about how it spreads which I think helped me understand why it’s such an evil sly beggar of a disease and also prob why recurrence happens more?
If link doesn’t work google ‘Dr Marcia Hall Ovacome 2018’
Very interesting, Dr Hall is my oncologist too!
Hello. I love her! Although I’ve only met her twice to be fair. Are you at Mont Vernon? I’m a fairly recent member of this gang being diagnosed at start of Feb.
Well that was absolutely fascinating, thanks for telling us about it. The link didn't work so I googled and watched it right up to the questions. I wish to god my own oncologist was even vaguely like Dr. Hall - the one I saw had all the charm, receptiveness and conversational skills of a refrigerator -her boss was marginally better, but really, not much improvement. Having a good oncologist whom you trust, I think, is absolutely critical - one of the reasons I turned down chemotherapy was precisely because the one I saw did not appear to have any human qualities, and I most certainly did not feel any sense of connection or trust.
It was a very informative clip - and she certainly came across as full of vitality and dedication - my own onc is very competent but lacks the human touch and spark that I’d like to see in the person dealing with my life or death - my own type falls under the type 1 bracket so its genesis and prognosis varies from the usual but the clip gave me a good explanation as to why type 2 oc is a recurrent disease and why good surgical intervention may merely reduce risk due to invisible spread - thanks for sharing
Hi Coldethyl, that is a very sharp question you've asked. My wife was diagnosed a year ago with stage 3c high grade serous OC. She responded very quickly to the chemo, but all her oncologist ever told her was that it would recur. The only question was "when", not "if". When it recurred (confirmed on CT scan 3 weeks ago). He reassured her several times that the recurrence had nothing to do with the fact that she declined repeated offers of surgery.
This provokes two questions. What does surgery do to prevent recurrence? Why is no research being done into the benefits of "maximal effort" surgery (as they so delightfully call it)?
Cancer is a very large number of cells which multiply and mutate and move around. So, cancer is not a single thing, but many different things.
Chemotherapy kills the cells that are sensitive to it. But the cells that are not sensitive to it and have escaped the surgeon's knife carry on multiplying and mutating until they cause symptoms again.
Mutations happen randomly, so the effects of a mutation are random too. One mutation might have no effect. Another mutation might kill the cell. And, an unlucky mutation will make the cell resistant to a chemotherapy drug.
This cell will survive treatment with the chemotherapy drug it is resistant to, and will carry on multiplying, mutating, and moving around until eventually a recurrence becomes noticeable. The time to a recurrence is a matter of chance, or luck. If you are unlucky, it will come back quickly. If you are lucky, it will be 10 years or more before it comes back.
Delays in diagnosis and in starting effective treatment give cancer cells more time to multiply, mutate, and move along.
(Knowing this, and that my wife's symptoms came back about 12 weeks ago, and that there is a 3 week wait for the chemotherapy to start, and that it will take 8 - 12 weeks before we can tell if the Caelyx is not working and 3rd line chemo is needed, is the perfect recipe for high grade anxiety.)
A cure for cancer has to kill 100% of all cancerous cells --- without killing too many non-cancerous cells!
I think that oncologists and surgeons need a lot more pressure from OC patients to provide the support, information, and research patients need.
Wishing you, and every cancer patient, the best of luck.
Michael
Well said, Michael. You underline that we are indeed up against a biggie. The surgery question is an interesting one. I belong to the minority of patients who have not had surgery - I was always advised it would be more risk than benefit 'because the cancer will come back anyway'. They thought I was better enjoying the quality of life I have rather than risking stoma or internal bleeding (cancer cells very close to major blood vessels, and also very diffusely spread, so they would never have got them all). I had two excellent years living a normal life, but now we are in the 'progression' phase where the clever cells that survived are going walkabout. Like your wife's oncologist, mine also said 'when' not 'if' right from the start. I didn't really like that, as I felt it took away my power. So I used 'if' and lived as healthy a life as I could in the hope of keeping it away. We can all choose the words we use - often they are the important thing to keeping psychologically on top of things.
Having to go through the chemotherapy in order to find out if it works or not is outrageous, frankly. I recently discovered that, in Germany, it is possible to take samples of one's cancer and test it in petri dishes against various forms of chemo to see what works prior to giving it. Not something that happens here, presumably because its labour intensive and costly, so no, here, we have to go through the toxic treatment in order to find out if its effective or not. I decided against chemo in the end - the lugubrious senior oncologist I saw, whilst better than his understudy, very clearly said he 'couldn't say' to lots of questions, like how long till it comes back with or without chemo, will it come back and so on. However, he did say, later, we give you chemo now, and when it comes back we give it again, and when it comes back again, we give it again... so the clue's there! He was, though, honest enough to admit that they have quite a few patients who come for one treatment with chemo and then never return - but he 'couldn't say' why they did that, and also said they could not predict how well someone would do even with all the treatment, because patients don't always respond to their expectations of the treatments they give out, no matter how successful those treatments seem to be. Clearly, they don't know why patients drop out of chemo because no one asks... hmm, not very useful is it. Fact is, if you don't take the chemo, my cancer unit completely loses interest and simply takes bloods every 3 months, unless you report symptoms and want chemo later.
One of the worst things about having cancer, especially ovarian cancer, is the complete loss of autonomy and lack of engagement with one as a human being rather than being just a walking disease... I found it intolerable, frankly. Lots of room for improvement there, well, at Queen Charlotte's anyway.
Our experience has been like yours —- major opportunities for improvement at every step (and at little or no cost).
Laboratory testing of cancers for their response to chemotherapy drugs seems so obviously useful. It is done for infections and antibiotics. I suspect that the reason this is still very experimental in cancer is that there is little money to be made by a developer, and money to be lost by the drug companies.
Unfortunately, cancer treatment is one of the major 'conveyor belt' areas of medicine - they shove you on one end of the belt and you just passively go along until they let you off at the other end, unless they need to start the process again for a recurrence. But it's not surprising really, so many people, so little time. limited resources, and the usual lack of 'whole person' approach, using allopathic methods only. It's a great pity that's how the system works...
I agree with you totally. I am furious that I was given 6 cycles of carbotaxyl that didn't work when it is known that it very likely won't work for clear cell cancer and they have the technology to test the tumour. Not only was this a waste of money and a waste of several months of my life but I now have kidney damage that is effecting the more useful treatment that I am getting after going for a second opinion. This is really a fault of the present system and guidelines rather than the fault of the oncologist.
I'm so sorry to hear that Neona. Of course, the amount of facts, figures and info they give you prior to treatment is miniscule - unless you garner some knowledge via research and ask penetrating questions. And of course, that terrible sense of urgency, bowling you along like a hoop, and one's own fear at the start of the process means we're not always able to take the time to do some research, especially given we'd never imagined having cancer at all, never mind ovarian. And we are all prone to assuming the doctors know what's best for us ... which I guess they do to a degree, but they don't share lots of stuff unless you ask outright. I was told I was rather difficult, very unusual, and that I asked questions and expressed feelings about the situation that most patients don't - 'you say out loud what everyone else is thinking/feeling'... Well, I still made them wait and carved out some time to research and commune with myself to see what I wanted to do, what felt right. But my approach is not right for everyone - for those at earlier stages and younger than me, with families, I fully understand why women just go along with the process, because it's about trying not to die, and if you want not to die, frankly, you'd take snake oil if they said it would work. As for problems with and after medication, any medication, I learnt a long time ago that there's always a price... and sometimes that price is worth paying, and sometimes it isn't.
One thing still strikes me as very curious; when I was persuaded by my surgeon to have the debulking surgery, one of the reasons given for needing it was 'typing for chemo'. I stupidly took that to mean they would check the chemo treatments available to see if they were appropriate for the cancers I'd got, once they cut them out. I still have no explanation for precisely what he meant when he said that.
Yes this is curious as they give everyone carbotaxyl as front line anyway. In this day and age hit and miss , suck it snd see treatment really isn't good enough.
But sadly, its more or less all they've got - they follow the same old routes with the same relatively old drug treatments. And it takes years for medics to try/do something new.... for instance, it took the NHS over ten years to announce it was okay to eat eggs because they didn't increase cholesterol, when many out there knew that right from the start. Good luck with the rest of your treatment...
Thank you all - some interesting replies - I’m sure late diagnosis plays a huge part in it as by then the cancer has had time to seed and go about it’s business throughout the pelvis and abdomen as well as more distant spread - and treatments have not yet caught up with the advances made in breast cancer though recurrrence there is actually much higher than we tend to think - it can be as high as 50% for Er + but over much longer timescale - obviously a forum isn’t representative but I was surprised at the high stage and grade of most of us ( I am high stage but low grade) which must have bearing on the mutation / resistance to chemo of our cells -whatever the reason it’s depressing reading - after optimal debulking surgery my surgeon mutttered about prognosis depending on how quickly it returned after chemo and I thought he was just being pessimistic -now I’m thinking he was underestimating it all !
Hi again. I agree, many of us don’t receive a diagnosis until we are Stage 3/4 but even ladies with Stage 1/2 have the problem of recurrence....the cells are very sneaky & seem very resilient. I wouldn’t have thought that “poorly differentiated cells” had the ability to cause such havoc! 😶. I think drugs that stop the DNA replication etc will be the way forward (not that I really understand it all) but because the drugs are so fierce, I think they are bound to have side-effects eg. PARPs.
My oncologist is at Memorial Sloan Kettering in New York and in his bio, on his list of research projects in which he is involved, "Why recurrence is so prevalent in OC" (or some similar title) is among them. Research can take years but I was pleased to see it is something being questioned in this particular type.
When I had my first recurrence, my daughter asked what were the chances of it recurring again. We were told the chances were very high, as the initial tumour had ruptured during surgery. I guess that, even if they wash out the abdomen, they can't be sure of getting all the stray cells after a rupture. Michael asked in his post what does surgery do to prevent recurrence? I don't know whether it does prevent recurrence in some cases, but certainly doesn't always. In my case, I needed to have a very large tumour removed at diagnosis, but that surgery seems to have made recurrence more likely.
I’m guessing that surgery reduces the risk of constant seeding from the main tumour as well as reducing risk to surrounding tissue and organs from something that shouldn’t be there - our own immune systems have a chance at mopping up odd mutated cells and I’d think removing rumours that are a drain on body’s resources must help give our immune system a better chance. That said radical surgery is not without risks of spreading cancer and I recently read article suggesting women who have breast cancer surgery should be routinely given anti inflammatory medication to support immune system as it becomes involved mainly in repair post surgery allowing cancer cells to migrate and grow unchecked - without radical surgery I’d have been staged at 1b at worst but biopsy revealed I was in fact 3a and also harbouring a primary in womb
Just wanted to say hello! (You know who this is)! How are you doing? Missed the group - can't manage to log in so i'll PM you if that's ok on here. (Sorry to go off topic)! Good question - Coldethyl - and one that deserves answers! xx
Just worked it out - yes pm when you get chance - will try and get you logged in - hope you’re ok x
This is such a great conversation and makes me feel that I am not the only one who sometimes thinks that the way this all works (or mainly doesn't) is madness, at times. Why would I want to go on a clinical trial that has severe side effects, after I have said I am interested in the quality as well as the quantity of life. Why suffer through months of pain while the research says it probably won't work for me anyway as I don't have genetic cancer and maybe, if I'm lucky, give me 3 more months of remission? They really don't know. Then I would have to go back on 'normal' chemo for another 5 months if it doesn't work.
I know we all make different choices but having to make a treatment decision now with no idea of the outcome, is near to impossible, especially when my new oncologist, whom I like is wanting to give me carbo/calaeyz which I don't want. Who would of thought that I have to fight for the dreaded carbo/taxol on my 1st recurrence! Oh dear. Hugs from Oz.
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