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Not right. Just not right. Re: funding

evolo58
Posts: 293
Joined: Dec 2017

https://moffitt.org/take-charge/take-charge-story-archive/federal-funding-lowest-for-gynecological-cancers/

Ovarian, endometrial and uterine cancers kill far too many women for funding to be this low. And while I read encouraging reports of survival re adanced stages in endometrial, uterine and ovarian cancer, the percentages are still far too low. I've YET to read too many recent reports on endo cancers that give the same encouraging news as breast and prostrate cancer. There was a recent study showing that 25% of advanced-stage ovarian cancers have been hitting the 10-year survival mark, and that's great, but not enough. Not nearly enough. And our cancer seems a long and hard fight just to hit the first five-year benchmark. 

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

Another article about the same report, with some more numbers, and also a little mention of the limitations of the study. Sad. But good information, as I've been told lack of research is because fewer of us are affected. But this shows that that's not necessarily the whole answer.

www.medpagetoday.com/meetingcoverage/sgo/71980

pinky104
Posts: 574
Joined: Feb 2013

I read the article you mentioned, and then I saw the nearby article about the unexpected outcomes in minimally invasive hysterectomies.  At the time I had my first surgery, I was supposed to have it done robotically, but I couldn't as it had spread too far.  I was upset to have to have major surgery at the time, but now I wonder if having the kind of surgery I had actually was a blessing.  Yesterday was the one year anniversary of my second surgery and May 11 will be the 8 year anniversary of my first.  I'm very lucky to have survived at all considering I was stage IVb at my first diagnosis. 

Thanks, LIsaPizza and Evolo58 on providing both your links.  I always feel like nothing much is being done for research on our cancer (especially as compared to breast cancer) and this just goes to prove it.  I admit I'm surprised that prostate cancer is ahead of breast cancer in funding.  That probably has something to do with the number of male physicians versus female physicians who want the studies.

Tamlen's picture
Tamlen
Posts: 207
Joined: Jan 2018

pinky104. Two months out from robotic-assisted and now this very scary data. Thanks so much for pointing us to this.

evolo58
Posts: 293
Joined: Dec 2017

I had a total laparosopic hysterectomy, and I'm a Stage 4B UPSC. I read several reports previously before my surgery that did not show a significant difference between open and MIS procedures in endometrial surgery, so now I'm really confused. Again. (It seems that so many times, I'm more confused than less confused with this beast.) As the article indicates, though, there may be different variables that could affect results, and I have to remind myself that a study or two in either direction is not definitive. And it's not as if the surgeon is going to re-open me up again to take out a second set of female parts!

And once again, some of the data includes some older data from more than five years ago. If MIS was that commonly-adopted in 2006, that would be only four years from 2010; the earliest year when that one  research team gathered data. There is a strong possbility that procedures, treatments, training (we have no idea how many gyno-onco surgeons v. general surgeons are included in the results) and technology have improved since then; hence the need for studies years into the future. However, if the percentages hold up, even though this is cervical and not endometrial cancer, this is disturbing indeed.

I'm just going to have to hope and pray like mad that the surgeon did the job well, and hope and pray this for all of us who had laparoscopic/robotic surgery. It may be something we can ask our doctors at follow-ups, however. I know my doctor has been practicing for at least a decade or so, and I would hope she'd personally notice such a difference. I really hope all our surgeons would have ... that is quite a gap!

One thing I cannot dispute, though ... unlike other certain cancers (many which have also used laparoscopic procedures, so this really needs to be looked into), endometrial cancer statistics are sobering. 

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

Studies so often contradict each other, due to so many issues. That's why it takes so long for medical guidelines to change . You can't just find a study with a particular result and take it for fact. Especially smaller studies. Still, it's disturbing, especially because for us the problem is REAL, not academic.

Hopefully, the same isn't true of MIS for most of us, since cervical cancer surgery is a radical hysterectomy and our surgeries usually are not, and of course it's a different cancer with different behavior. But I sure hope for the very best results for all our gyn cancer sisters. 

I know for breast cancer, the surgical standards have changed a lot over the years, from really radical mastectomies, to modern mastectomies, to lumpectomies with radiation for some. I hope our research catches up. But I think hoping isn't enough; our involvement is needed. We can't just trust the industry to do what we need. Breast cancer research didn't progress as it did without a lot of activism.

evolo58
Posts: 293
Joined: Dec 2017

And I think we should take strongly into consideration that most Stage 1 endo cancers (the cervical cancer sturdies focused on Stage 1s) have an 85-95% suvival rate, regardless of type. Type 2s are on the lower end, but the prognosis for an early stage is still not dire. I think ladies who read these posts should be aware of this. We have seen many, many Stage 1s here and on other boards thrive for years and years without problems, regardless of surgical method and type of cancer.

Survival rates for Stage 1 cervical cancer is about 93% for 1A and 80% for 1B. But of course in either cancer, there are variables in those as well. So ... many ... variables. And so much older data being used.

I would lean more with the cautious doctor in the study. Without pathological details and breakdowns, as well as a focus on more-recent results, it's hard to tell whether these studies will hold up for cervical cancer patients. Generally, DFR and OS depend on a few factors; not just one. And even looking back at 2010, there are many procedures surgeons did back then with cancer that they do not do anymore. But still, cervical cancer and endo cancer deaths should be a great matter of concern. The percentages for those are stubborn.

So many studies on endo cancer are scattershot and contradictory that I've stopped looking at most of them. In one example, there were about a dozen studies concerning mixed UPSC and pure UPSC. (Mixed had a percentage of endometrioid cancer in the tumor, pure did not.) Three studies seemed to indicate that patients with a mixed endometerioid/serous tumor, with the serous being less than 25% of the tumor fared far better than the pure serous. Both doctors I talked to about this said this was not the case. Nine studies agreed with the doctors.

One thing I do agree with certain researchers is that the medical profession needs to separate Type 2s and 1s when staging endo cancers. One researcher strongly recommends breaking Stage 1 UPSCs into four stages, not three. Another recommends taking a look at advanced-staged endo cancer stages. Even my doctor admitted that endo cancer stages were pretty odd. Maybe then, we might get better answers. But again ... both endo and cervical cancer (and ovarian, too), need far more research than we're getting. It seems like we get random crumbs.

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Soup52
Posts: 902
Joined: Jan 2016

Unfortunately I can’t access these links. I do know that most of the time my Gynecholigical oncologist does laparoscopic surgery, but it depends on what he sees in tests before hand CT’s etc. I had the robotic laproscopic in fall of 2015.i almost immediately felt so much better. After that and radiation and chemo I am currently NED. Remember you are a statistic of 1. Yes much more research for our cancers needs to be done .

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