Hey everyone, I hope you are well. This is going to be a long post – go grab a cup of tea!
I wanted to bring up a somewhat controversial but pertinent discussion on why survival rates are irrelevant. The first thing I did once I knew my mothers’ diagnosis was turn to Dr. Google and search survival rates, the results were dreadful. I was filled with anxiety, doubt, and fear. It seemed that regardless of being trained in research (for psychology not oncology), my healthy level of skepticism towards research disappeared. While I know a lot of you ladies already understand how irrelevant those damn stats are, hopefully this can provide some relief to those newly diagnosed or soon to be diagnosed.
First, before I go into the skepticism I have of the survival rates given; I want to mention some of the more obvious complaints.
The current rates are based on a different grading scale. Ovarian cancer was originally classified by the TNM (tumor-node-metastasis) scale, however, it has since changed to the FIGO scale in 2014.
One a side note, the TNM scale is a rather poor indicator for ovarian cancer, particularly epithelial tumors and there is room for error when discussing how omentum and abdominal involvement translates to metastasis. For example, one oncologist may have viewed intestine involvement as a metastasis, while another did not. While I find there are a lot of faults with the FIGO system too, (too many to discuss in this post!) it is a better alternative. However, the survival rate statistics are based on the old scale and the stages between the two systems do not entirely line up.
Furthermore, the stats that are given are based on individual who were diagnosed in 2007! That is 10 years ago. Do you know how much has advanced in ovarian cancer treatment since then?! IP Chemo, Dose-Dense (weekly), Parp inhibitors, maintenance drugs, and so forth. The last 10 years have provided a lot of advancement in treatment options which have been clinically tested!
The way organization often label the survival rate figures, are deceptive. The stats often look worse than what they truly are. I suspect this is done intentionally to try to booster funding or donations.
What do I mean by deceptive?
The 5 – year survival rate for (epithelial cancers) shows individuals who were diagnosed with a particular stage of OC and were alive after five years. For example, say the 5-year survival rate for a particular stage was 60 percent; we often think that 40 percent of individuals diagnosed have died from ovarian cancer – that’s not the case. Individuals who make up the alternative statistic (the 40% in the previous example) have passed away – it does not specify the cause of death. While, sure, unfortunately, individual do pass away from this disease – individual can pass away from other causes too – such as an automobile accident or accidental drowning.
The first thing you learn when conducting research is to have a healthy level of skepticism. What am I skeptical on these rates? The limitations they have!
One of the main limitations I see is that the survival rates lump all epithelial tumors together, instead of showing them by their own subsections! The epithelial tumor includes serous (low and high), mucinous, endometrioid, clear cell, brenners, and unclassified!
First, while these tumors might behave similarly to each other, there are still distinctly different. They have differently pathology and (while it’s just beginning to be tested in clinical trials) different treatment options.
Second, I cannot for the life of my understand why unclassified tumors are put under epithelial. Unclassified tumors are uncommon, sure, but may include an extremely rare type of OC (that has not been identified yet) or where testing could not be done (typical due to a patient’s death). Why include something that is unknown as a type of epithelial tumor!?
On a plus side – I do believe that the subcategory distinction on epithelial tumors, as well as the issues I have with the current FIGO scale, will be modified in time. Well known, and highly publicized cancers, such as breast and lung have specific subsection stats; as well as clearer staging criteria. Once OC becomes more publicized and known, I feel the ambiguity will be corrected.
I know ovarian cancer is a deadly disease that can take an women’s life – I am no way trying to insult individuals who have passed from it. Instead – I am trying to bring assurance to newly diagnosed women, that 10 year old statistics that are poorly defined, should not discourage them. Women diagnosed have enough to deal with through treatment than to become anxious or disheartened by crappy stats!
Kris
P.S. I decided not to post any references. I did not want to cause any anxiety for individual reading (since I think the stats are full of crap)!
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kristinaapril
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Hi I regularly tell newcomers to the forum to stay off google as the statistics are scary plus we aren't a statistic we are individuals and the statistics cant say what will happen to an individual just scare the wotsit out of us, Im nearly 10 years on from diagnosis xx
I'm a former researcher and unfortunately disagree with some of your comments having spent a considerable time dissecting the figures which come from reputable sources and not my dear friend Dr Google. FIGO scoring was recently reviewed and amended but that only indicates level of spread it is not actually relevant to survival as OC presents differently in each person making cure stats poor. Many other cancers have a pattern. OC is very controllable in a Petri dish but this has been almost impossible to convert to live situations. It's a luck based outcome unfortunately and the best we can do is hope today luck is on our side and take appropriate steps to help ourselves as much as we can.
Stats are all based on 5 years as there has to be a limit on research. So even if you survive 5 years 1 month stats say you are a survivor.
Many follow and search figures purely because there is a general lack of information around despite a demand for it
Thanks, LA. I particularly believe there is still a lot to be desired regarding the FIGO scoring, particularly between the later stages. It appears to me, though I could be wrong, that 3C tends to be vague and a lot of individuals are lumped into that category - despite having vastly different disease progressions. I still prefer the FIGO scale to the TNM, though that just may be my bias due to my comfort with the FIGO scale.
I understand that the rates are always going to be outdated, though, I think a 10 year difference is quite significant. I am guessing that it will still be a few years until the stats are updated. The last cohort was followed in 2007-2013. Assuming the new cohort started in 2014 (after the FIGO change), there is still over 2 years left in the follow. I don't expect an update until around 2020 (leaving in time for compiling and reviewing).
I'm not so sure ten years makes a lot of difference, at the moment I am writing a psychology paper and we refer back to mental health studies in the 1980's, however the treatment has not changed for the particular group, as despite many experiments and research opportunities, the original results are still the most effective. The only thing that has changed are the ethics rulings.
If you look at OC drugs, Cisplatin is back in play more frequently, yet Carboplatin was intended to replace it as the side effects are not so harsh. These are both old drugs, but we do not ignore their value just because they were introduced more than 30 years ago.
Thank you, Kris. I hope it will make a lot of people feel better - and I hope that reading I'm still here after ten and a half years will do, too. Didn't expect that many months, let alone years. 😊 Best wishes,
Thankyou so much Chris , I haven't got ovarian cancer ,mine is ppc ,a rare cancer in the peritoneal ,lineing of my stomach. I am believing I will have another fifteen years ,to see my youngest grandchildren grow up . God willing I will be . Julie
Quite right re long term stats though I don't think they're necessarily wrong, just always inevitably out of date. Seeing how long you might live will never work from those.
Thanks for your positive post. If I believed the Dr Google prognosis of my stage 3 high grade serous PPC 6years ago I would now be residing in a corner of my nearest cemetery since 2013 !
i'm sorry but I've not seen such a long list of excuses for 'sand bucket' option
poor Google deserved thanks from ALL of you for whiteout it a lot of you wouldn't made it here in the first place. and where exactly did you do your so called research? I bet it was on Google!
secondly, majority of us get 'nasty' stats from our doctors at the time of diagnosis and not from poor old G. if they were irrelevant, doctors wouldn't be allowed to tell such information. and stats stand as they are despite your wonderfully faulty so called research.
thirdly, PARPs aren't tested for 5 year survival only for extension of PFS.
you could have at least mentioned drugs approved post 2007 that we use now, but I don't think you've bothered did a longer research.
IP didnt' show much difference, doze dense is in it's juvenile state of studies, immunotherapy is still at embryo stage.
the FIGO updates will inevitably change the stats, that's not a rocket science, but the more people prefer to hide from the facts, the harder it's going to hit them when they are NOT going to make a good stat. and YOU will be responsible for that.
instead of wasting time writing this, you could have done a proper job gathering info on latest drugs and procedures that prolong PFS and 5 year survival rate to give people real hope. and BTW I would LOVE to see how you're doing to do this research without Google LOL
Dear smileNwave, it is possible to disagree with a post and to put your own point of view, all without being quite so sarcastic. We are here to support each other after all.
Yes but there can be an element of denial which does not help everyone....of course you can die of something else...years ago my GP was not keen on giving me statins because research showed people got more depressed and had more accidents....I've just read these posts again...if people really want a debate let's have one. Some people really want a prognosis...others...including me not!
This is written in such a horrible way. I think you could have put your point across in a much better manner, I think your response is more upsetting than the post.
I agree with the others who seem to find your way of expressing yourself too abrasive, SmileNwave.
Ok I get it you have OC and you're angry, you have lots to say and want to express your views strongly. Fine. Just remember that we are all in a difficult situation here and things are tough enough without having to face the sort of flak you seem to feel is your right to fling out willy nilly. Maybe pause and reflect before you send out a post or reply.
i must say you are being rather rude. No one on this site is a time waster! We are all here for support through difficult times and I think that should be respected whether you agree with a post or not.
First – I want to apologize if you find this post offending or upset as that was not what I envisioned. Your animosity towards me seems alarming and I am not sure what has caused it. While you may just be cynical by nature, I tend to be an optimistic realists.
Also, I’m not sure if you understand the point of the topic. This discussion was not to discredit the seriousness of the disease; or make it appear that the current treatments are “the cure”. The point of this discussion was to bring some awareness, specifically to those newly diagnosed who turned to the survival rates – that they are dated (10 years old) and for the majority of ovarian cancers (epithelial) somewhat deceptive.
While different geographical oncology teams may do things different – in my region, neo-adjuvant chemo therapy is standard care for individuals diagnosed with stages 3 or 4. The three chemo oncologists who we have spoken to were unable to give us survival stats. The two oncologists who are in our team – along with the gynae oncologist – stated that it was impossible to give estimated survival rates until treatment began. The only ‘stat’ given is that without treatment she had less than a year. That is why I resorted to Google.
Yes, I found this site from Google. Google can be a great resource for finding information – though again, just try to verify if that information you are linked to is from a credible source. Besides Googling the statistic to look for the references used – my research came from the SEER program at the NCI along with published clinical trials (which were found using EBSCHOHost).
No – I did not do a comprehensive treatment review to include all the drugs and schedules that have shown improvements (from first-line) in the last 10 years. This topic was focused on the faults of the statistics not systematic advancements in treatment.
IP Chemotherapy has shown a longer PFS and OS in randomized clinical trials (GOG 104, GOG 114, GOG 172, and S0009). GOG 252 Trial, published in 2016 (which you may have been referring to), did find no overall difference (between iv and ip). However, oncologist note that taxol and cisplatin doses were reduced to lower toxicity – which may have compromised the efficacy.
While Dose-Dense Chemotherapy (DDC) is rather new, clinical trial JGOG-3016, has shown that DDC has longer PFS and OS. While I admit, there is still more completed clinical trials that need to show this phenomenon – it will take time (some are currently recruiting). There has also been retroactive studies done that compared standard and DDC in neo-adjuvant chemotherapy which DDC has been linked to a higher pathologic complete response and no residual disease (after debulking). [doi: 10.1016/j.ygyno.2016.04.539.] In my location, perhaps due to the fact it is a university hospital, DDC is first-line treatment.
PARP inhibitors for ovarian cancer are a rather new discover. Niraparib and Olaparib are all rather new – so yes, they only have PFS.. for now. These trials that have found longer PFS are continuing to follow up with individuals to see if their OS is better. However, with the PFS in BCRA gene individuals on PARP inhibitators being roughly 14 months longer (15 in Niraparib and 14 in Olaparib); there is a real possibility that OS will be better too.
I am sorry, that at the possibility of hoping for a better outcome, has triggered you so negatively. I hope you can still find joy in life.
Harsh comments. We often have posts here where we disagree but this does not make you, smileNwave or the original poster right or wrong, just looking from the other side of the fence. In terms of study dates, research is carried out regularly, if the results are the same as a previous study they are not published as this requires additional funds and would be of no value. So a study from 1979 could have been redone in 2016, but if it returns the same the original 1979 study will be the one available and will be referred to.
I personally love the ostrich approach, but I am also very up to date with what is going on not just for OC but other cancers too, as my research background was the health service.
I however wouldn't dream of suggesting someone must face facts, we are individual people and our outcome is individual too, the data is there to be shared but only for those who wish to read it.
We don't need 'real hope' we need 'real money' invested in us.
i'm now 9 + years since diagnosis, aiming for 10 years at the beginning of next year. Would like to be still around when my soon to be 2 year old granddaughter leaves school. How's that for aiming to beat the statistics?Di
Thank you for your efforts, I totally hear what you have said, and agree that we should all take stats with a certain amount of scepticism! Good to hear from someone else what I have thought for a long time! Thank You. Bx
I agree with Katmal...many survive but many don't however positive their attitude. The last thing those who do die need to think is that it was their 'fault' for not fighting hard enough/taking the wrong supplements etc.
I have a healthy scepticism about research too.. but without it we would not have many of the drugs we do have. This web site gives the best but also most realistic information in my book x
I don't want to stir up any flames but I, like many I read on here, have come to accept:-
1. Doctors who treat us (GP's to specialist oncologists and surgeons) all want to be honest from their experience and perspective.
2. Every medic (doctor or nurse) has expressed delight when 'Actuality' is better than the 'Prognosis' shared after surgery and conclusion of chemo.
3. Most of us 'know', or like me, eventually realise, that 'Stats are history' and that we are making tomorrow's history.
4. Positive thinking and focusing on growing healthy cells cannot cure cancer. But there is evidence to suggest it can, in some cases, prolong remission or make the remainder of our life happier through the balance it brings.
5. Life is the 'luck of the draw', a matter of chance. As one of our ladies shared so wisely a few weeks ago, (think I've recalled it correctly?) "Thinking life will treat us well because we have been good is a bit akin to thinking a bull won't charge us when we walk across its path because we are a vegetarian." A moments reflection will, I'm sure, bring to many of us that overwhelming feeling of...thank goodness I wasn't at the Manchester concert, in Borough Market, didn't live on floor 22 of Grenfell Tower or was driving a car on my holiday in Portugal and got caught up in their forest fires, etc. etc.
Apologies to anyone who knows of people affected by either of these recent tragedies; I don't want to offend anyone.
Hope everyone is finding shade or some other way of coping with the heat (if you live in the southern parts of UK!)
I was mentally preparing myself for my operation this time last year, when Jo Cox was murdered. Although I hadn't ever heard of her until then, her death hit me like a tonne of bricks, and I remember being thankful that I *only* had cancer. So I think I agree with with your point no. 5!
In regards to number 4 - I often tend to think of happiness with lowered levels of stress and anxiety. While it is unknown, there have been studies looking at stresses affect on a multitude of grounds: body (cardiovascular, diabetes, etc), mind (irritable, depression, anxiety,etc) and behavior (substance abuse). While, there is no correlation to cancer (at least where I am aware) our team advocates to reducing stress levels regardless.
Thank you, I'm newly diagnosed and have consulted Dr Google every night with very tortuous results meaning I am stressed and terrified! Decided a few days ago to stop doing this to myself and let my oncologist be the expert who guides me
Your post makes perfect rational sense and has made me more determined to not consult google apart from when I need to find somewhere or fix a PC problem xx
It is good to discuss and view things from all angles.
I personally think we are all on a different journey,there are so many different facets to our disease and life, I wouldn't know what to recommend,apart from don't look at the stats and don't google.
3 years ago, I nearly died and I have been NED for27 months,why? I don't know,but a positive attitude and keeping going and supportive for others and not giving in are key for me.
I would be the first to say I hide my head in the sand,but I get regularly checked and I would be the first to get advice if I felt unwell.
I have just been lucky,I was diagnosed early and I am grateful for every day,we all have to go sometime,but Im damned if it's going to be down to OC,
We've all been there with Dr Google when first diagnosed before finding this wonderful website, then wished we hadn't like everyone else I tell quite a few people stay away from Dr Google he's not the most up to date Dr. I hope everyone is well? Xxx
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