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An article for thought.

evolo58
Posts: 293
Joined: Dec 2017

Yes, this article concerns a breast cancer survivor. And it's an older article. God Willing, this woman is still alive and giving this thing !@#$. But some of the points make me think.

Are we so focused on what doesn't work that we don't focus enough on what does?

The bit about trials and five-year survival rates are interesting ... does anyone, particularly drug companies, focus on quality and quantity of life AFTER the magical milestone? If drug companies don't do this for breast cancer and the more-obvious ones in the news, it's kind of scary for us endo cancer patients.

Why aren't we "studying the planes that stay up in the air?"

And why must we gyno cancer patients ever think not studying this is acceptable?

http://www.nytimes.com/2010/04/27/health/27case.html

And I agree. There is no such thing as false hope. All hope is valid. May no doctor ever kill that hope for any of us. That is a horribly cruel thing to do.

May the time when people say, "17 years? 22 years? Great!" echo more and more often when it comes to any advanced-stage cancer. 

(EDIT ... Unfortunately, she passed away in 2012. But this person fought her cancer for more than two decades ....  at a stage with a bleak prognosis, like some of ours. She was an amazing, amazing woman who brought so much hope to others. Again ... may the time come when surviving any Stage 4 in general be much more common when looking at ten and twenty-year survival rates.)

saltycandy13
Posts: 167
Joined: Dec 2017

Great article.  Thank you Evolo

 

The thing that bothers me is that (and I am not discounting) breast cancer at all, but not enough is done for uterine cancer and awareness.  Ovarian cancer is just about not heard of yet women die from this all the time.  My grandmother was only 56.  

 

Pink ribbons galore, but what about us?  What about us with a ribbon for uterine, ovarian cancers??  When I started menopause, I had such a hard time trying to find information.  Gynocologists seem to be only interested in women of child bearing age and then once you become over 50, you can just sit back and die from whatever afflicts you.

I would like them to find a CURE for these things, a cure for hot flashes, and stop calling us insane because of the emotional highs and lows that go with menopause, abnormal bleeding and uterine and ovarian cancer.

evolo58
Posts: 293
Joined: Dec 2017

Even if more is done for ovarian cancer, since it's apparently the cousin of us Type II uterine cancers, that would be so beneficial to women suffering from both.

It appalls me that gynos didn't pay more attention back then to women like me who had serious issues with menopause beyond the usual symptoms. Going through a pad and a tampon (both!) in an hour was NOT normal. That should have been a red flag. There should have been more testing beyond the biopsy, just to be sure, as well as follow-up testing. Fortunately, more attention is being paid to that now, but it wasn't then!

Endo cancer, whether Type 1 or 2, is one of the Top 5 cancers affecting women. It's nothing to sniff at.

saltycandy13
Posts: 167
Joined: Dec 2017

When I first started menopause, there was nothing that worked for me.  They gave me birth control pills, Premarin, Enjuvia, and Prempro, and nada.  I was burning up with hot flashes and I had a specialist tell me to go home and die because he was sure I suffered from Carcinoid syndrome.  He told me to go get an xray of my lungs.  He was sure there was a cancerous tumor in there. Idiot!  I had had Bronchitis a month before and had an xray and it was okay.  No tumors.  Doctors are stupid.  And menopause, from what I heard is one chapter in their medical journals.  They just are not interested in us.  But a pregnant woman?  Oh sure.  they jump at that.  Sometimes I think it's just $$$$.  My neurologist even told me the FDA is corrupt!

evolo58
Posts: 293
Joined: Dec 2017

Breast cancer again, but apparently, others are not wondering why more research is NOT being done re longer-term survivors, and if there is anything in common that we can glean from their stories. The sample size of subjects is impressive in this study, as well:

https://community.breastcancer.org/forum/8/topics/859814

I like that the authors do not poo-poo integrative or complmentary medicine. In fact mistletoe, a supplement I know a couple of you ladies use, actually is presented favorably here as an example. We need MORE studies like these for different cancers, including ours, and we need larger, more-current sample pools of patients, broken down by a few factors (the paper mentions previous health problems and drugs taken for them. as well as the patients' backgrounds and attitudes). Fifty or one hundred patients in total are nice, but by the time you break down sample sizes in groups (age, previous health issues, etc.), the sizes are way too small to reach an adequate conslusion. Imagine how many lives can be saved if researchers found out that black seed oil and mistletoe actually DO make a difference in DFR and OS (random example)!

And yes, I hear ya on the menopausal ladies, saltycandy13. Maybe there isn't more money to be made from us, either.

I guess drug companies don't benefit from this sort of research, though. Mistletoe, tumeric, black seed oil, yoga, other forms of exercsie, etc. would hardly enhance their profit margins, would they?

SF73
Posts: 277
Joined: Oct 2017

Studying the exceptional responders, exceptional survivors, and rapid progressorts is a marvelous idea. It is disappointing to see the medical community paying attention either to the median response or go to the other extreme of personalized medicine. Response to treatment is a distribution and patients in the both tails should be studied. I think empirically I am doing the same thing on this forum by trying to learn from the experiences of some exceptional survivors of either stage 4 or recurrent endometrial cancer with my histology - endometrial type - (takingcontrol, Kaleena, and oldbeauty for instance) I am so thankful that they come back to tell us what treatment they have received, and how they have responded to those treatments.

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