Ovarian/Uterine cancer--how to have a chance at beating "The Murderer."

[DFW]

One of our best friends is dying. Her chances of surviving until the end of the year are slim. We have known her for over 30 years. She should have had a chance. Her doctors blew it. Don't let this happen to you. Know what might be wrong, and don't EVER accept the answer "it's nothing" when you feel it isn't.

Our friend was in good health all her life, rode around on a bicycle for most of her life, as do most in her flat country (the Netherlands). About ten years ago, she started having minor problems with her digestion. A colonoscopy turned up nothing, and she was told it was "nothing." Her digestive tract problems got gradually worse, but the G-I doctors kept checking and telling her it was nothing.

It wasn't "nothing."

Problems with the digestive tract or urinary tract in women 50 or older CAN--not necessarily, of course--mean they are signaling ovarian or uterine cancer. With my wife it was two bladder infections coming in rapid succession. Her urologist was sharp enough to recommend a routine uterine exam. It turned up three small dark spots. All three were immediately biopsied. Two turned out to be nothing. The third one was "The Murderer," a rare and almost invariably fatal form of uterine cancer that typically strikes elderly or very slender women. She was sent immediately to a clinic that specializes in treating such cancers. The top specialist said it would require a long and brutal operation, but we had grounds for hope, as he said he had never seen a case brought to him this early. If there was such a thing as stage ½, this was it. The operation took over 5 hours, and they took out a lot of things, and sent in 84 biopsies to see where it had metastasized. We had to wait a week. Then they came back: ALL negative! The surgeon gave us an option he said he never gave: chemo or no chemo. This was the first time he had given the option of no chemo after discovering this form of cancer, but he said he had never seen a case where it was discovered this early. She had been through chemo the last time she had cancer (2001). She said no chemo, and the surgeon agreed. He said this one time, he thought her chances of good health were better without the chemo than with it. Two years later, she is still (as far as we know) cancer-free. No guarantees--we know only too well. But most women in her family (including her mom) have had cancer twice, and all lived to the age of 90 at last.

Our friend in Holland did not look further than her G-I's diagnosis of no obstruction. What they SHOULD have looked for--and known--was that urinary problems or digestive tract problems that seem to have no cause are often warning signals of ovarian or uterine cancer, especially since they had started when she was about 60. German medical journals have written about this, but our friend's doctors in Holland never checked her out. If her problem had been examined yearly starting ten years ago, her cancer might have discovered and stopped, or even put into complete remission. Instead, by the time it was discovered 18 months ago, it was already hovering between stage 3 and stage 4. She had chemo, a big operation, and then more chemo, and her diagnosis was temporary remission, but they warned her to expect it to come back, and not gently. Since two weeks, the "not gently" part has set in. "The Murderer" had done his handiwork before being discovered (she is very slender, like my wife).

So, if you are female and over 50, and you suddenly are having inexplicable trouble with either the urinary tract or digestive tract, and the urologist/G-I doc says they can't find anything--that does NOT mean "it's nothing." Get checked out for uterine and/or ovarian cancer. You might well not have anything, and I hope you don't, but you owe it to yourself to find out. It might just buy you another 30 or 40 years.

[cyclonefence]

1. I'm so very sorry

Ovarian cancer continues to be one of the most deadly cancers, partly at least because of the story you tell about your friend's experience, as well as the historical tendency of the medical profession not to take women's health complaints seriously. It is awful to have to say this, but I would add to your advice, take a man with you to your doctor appointments. Women who are accompanied by a men have a better chance of receiving appropriate treatment.

There is some hope for earlier detection of ovarian cancer. Blood tests are being developed which show great promise in detecting ovarian as well as other deadly cancers, like pancreatic cancer, and early results are very heartening. https://www.cnn.com/2018/06/01/health/blood-test-cancer-screening-intl/index.html

[DFW]

4. Progress is slowly being made

No thanks to Republicans who want to defund everything except the Defense Department and their own expense accounts.

My dad died of pancreatic cancer 18 years ago. He was 78. At 77, he was still beating men 20 years younger at tennis while this evil thing had started growing inside him. Knowing what we know now, we might still have been benefiting from his wit, but at the time, even Johns Hopkins' best couldn't save him.

Our Dutch friend and her husband are two of our closest friends. This is gnawing at all of us. Though they live over in the Netherlands, it's only a 90 minute drive from our house, and saw each other frequently. They would accompany us to Berlin and Barcelona, and get together for dinner at our favorite places after the women explored and we worked. After decades of this, it will NOT be easy to accept that this is over.

[Fla Dem]

7. Pancreatic cancer is a death sentence.

Am so sorry for your friend and you and your wife. Losing a valued, dear friend is as hard as losing a family member.

Long time(30 years), good and close friend started with belly pain, when it wouldn't go away, they went to the doctors had all the tests done; pancreatic cancer. 20% 1 year survival rate, 7% 5 year survival rate. Gave him 6 months, was gone in 4. Was a healthy, active young 60. This was a tough loss for our circle of friends. He was always the upbeat, positive, fun loving dude you'd want to hang out with and would do anything for you.

My Mom died of breast cancer at 62.

F*%K cancer.

[DFW]

15. Tell me about it.

From time to time, I have posted my dad's last column, where he said good-bye to his readers of over 50 years (he was a D.C. print journalist). He lasted 11 months after diagnosis where most last less than half that.

But there way no way out--a death sentence indeed.

[Ohiogal]

2. Thank you DFW.

This is absolutely vital information for all of us women over 50. I wasn't aware of any of this. Thank you for posting.

You'd think that our doctors might warn us to make sure we're checked as your wife was, if any of these things happen to us, but, alas, most don't.

I'm so sorry about your friend.

[pnwest]

3. Echo Ohiogal - I'm also a woman over 50

and did not know this information. Thank you for posting.

[DFW]

5. You would think that in the internet age, that medical knowledge was less fragmented

But it is still very fragmented. Doctors often do not read about things beyond their immediate specialty, and sometimes that which seems like basic logic to an outsider with reason to know seems superfluous to the doctor who thinks he has no reason to get curious. My wife had good luck. Our friend in Holland did not.

Due to high cholesterol and a high white blood cell count, I have to take a blood thinner daily for the rest of my life. No big deal, as I suffer no side effects, but I do have to do this. In 2011, I was having my routine every-five-years colonoscopy, and they said to cease taking blood thinners ten days before the procedure. What did I know? So I did. The day of the procedure, about an hour after I was done, I felt weak, and was barely holding on to consciousness as my friends in Dallas drove me to the emergency room. I had my very first (and so far only) genuine U.S. certified bona fide heart attack. A cardiologist came down, asked me all sorts of questions, and went ballistic when I told him the colonoscopy people had told me to go off the blood thinners for ten days. It seems that for people like me, it takes exactly ten days (!!!) for the white cells to build up enough to clog an artery after discontinuing blood thinners. They called up the colonoscopy people, and sure enough, two years ago, when it was "my turn" again, the form said "five days." At least they learned their lesson, and as a consolation prize, my heart attack turned out to be so mild that it barely registered, and I suffered no muscle damage.

But the unfortunate moral of the story is that even today, with advanced knowledge, doctors, and specialists in particular, do not always inform themselves about areas outside their specialty, but possibly connected in a vital way. We patients always risk being crossed off as hypochondriacs for asking too many questions, or requesting exams they consider unnecessary, but look at the two cases. In Holland, they didn't think to look farther, and our friend will soon be dead as a result. In Germany, my wife's doctors DID think to look beyond their narrow area of expertise, and as a result, she is fitter than most women 20 years younger.

[Coventina]

10. Your point about specialization is SO TRUE!

My story:

July 2016 I had abdominal surgery to remove a 4.5 lb. tumor. (I won't even go into the time it took to trace THAT problem down!).
Fortunately, it turned out to be benign.

My surgeon assured me that after the surgery, I would be up and feeling great within days.

Well, guess what? After being slit from sternum to groin, which destroyed all of my core muscles, my back and hips were in AGONY!
Even though I am young, I have severe arthritis of the back and hips.

What happens when you can't use your core muscles to move?

Your back and hips have to do everything!

I've lived in agony ever since that surgery. I regret it every day of my life. I would have rather lived with the side effects of the benign tumor than live in this pain. Even though I've worked and worked to get my core muscles back, the damage seems to have been done to my back and hips.

Maybe if doctors would look at the entire medical profile of a patient (like having severe arthritis) maybe surgery isn't the best option.

All I can say is that after what I went through, I would rather die than have major surgery again. It was that bad.

[DFW]

16. What a horror story!

And how could they NOT detect a 4.5 pound tumor???

[Coventina]

18. It's a long story, but the short of it is is that

it grew REALLY quickly, which is why they advised me to get it out.

It made every sense in the world at the time. And, maybe since it was growing that quickly it really had to come out, benign or not.

I still regret it, though.

At the very least, they could have taken into account the need to have more bedrest and intensive physical therapy immediately after the surgery to get my core muscles working as quickly as possible, and to minimize the damage to my back and hips.

[malthaussen]

6. My mother had that.

She survived for about 50 years after having her uterus removed.

-- Mal

[appalachiablue]

8. Thanks for all this important info. about medical care & testing.

Hearing about people's own experiences, what they've been thru and what to look for is invaluable.
-------
The Amer. Cancer Soc. has recently recommended earlier COLORECTAL CANCER screenings beginning at age 45, not 50.
This cancer is rising dramatically in younger Gen X and Millennials, which is Not stated in the headline of this OP I did that's not receiving much traction. ~ Young people b. 1990 have twice the risk of colon cancer, and four times the risk of rectal cancer as adults b. 1950. It's a very serious issue and people should be aware.

- Washington Post, 'Colorectal Cancer Screening Should Start at Age 45, Not 50, American Cancer Society Says,' 5/30/18

"But since 1994, there has been a 51 percent increase in the rate of the disease among those younger than 50, and the death rate also has begun to rise. A recent analysis found that adults born around 1990 have twice the risk of colon cancer and four times the risk of rectal cancer, compared with adults born around 1950, the cancer group said.
As they age, younger adults will continue to have an elevated risk, compared with previous generations, studies suggest...cont."

https://www.democraticunderground.com/114219581

[DFW]

14. Considering the junk food diet of the 60s and 70s

This makes perfect sense. They started telling me right around the time I hit 50, but that was back when Zachary Taylor was president.

[RandomAccess]

9. Another important symptom not to ignore -

lower back pain. This one's tough because it could be due to any number of things, BUT it shouldn't be ignored.

[dixiegrrrrl]

11. Thank you for this info.

I'm sorry you had to share this from personal experience, tho.

[CaliforniaPeggy]

12. My dear DFW...

My heart is breaking for you and your wife over the imminent loss of your dear friend. I am so very sorry.

When I had my hysterectomy, even though there is no history of ovarian cancer in my family, I said to my doctor: "Let's make one trip in." He pondered this a moment, and agreed. So my ovaries came out along with my uterus and I was content. I was in my late 40's then.

Being a nurse and being aware of the dangers of ovarian cancer made me want to do get my ovaries out. It's so hard to detect in time for a cure and I wanted to avoid that scenario.

Remind me to hug you when we arrive...Here's a virtual one till then.

[DFW]

13. Just a few weeks.

If I haven't done so before you arrive, I may have to run down to Bern for the day, in case you want to tag along and feel the real thing

[CaliforniaPeggy]

17. I may just do that!

It depends on what else is going on.

[The_jackalope]

19. My late wife's first symptoms were GI problems and some spotting.

She noticed them when she was 64. However, she deliberately ignored them, because she'd been ready to leave for a decade due to other health problems, and she suspected strongly that it was ovarian cancer. When she finally consented to an ultrasound on her 65th birthday, it was entirely too late for intervention to give her anything but more misery in her final days. The cancer was already approaching Stage 4. She died four months later, with complete grace and most of her dignity intact, in a medically assisted death.

We had no children, which made her choices easier. I supported her decision not to seek diagnosis earlier, because that was her informed wish, and I knew how much she wanted her life to be over. I also supported her choice of death. On her last day she radiated serenity and relief.

I know this post swims against the tide of this thread, so I will add that if your desire is to go on living, please don't ignore such symptoms. My wife was unique in not sharing our culture's rejection of death in favour of life at almost any cost. Most of us do not share her views, especially at the tender age of 65, so please check out those symptoms and follow up on your suspicions.

[DFW]

22. If she had been suffering for ten years prior, then I can understand her choice

But that's what it should be: an informed choice. An uninformed choice is never one made with full free will. My wife and I have two fabulous daughters (and now one granddaughter as of ten days ago), and, after 44 years, we are still very happy together. Neither of us can imagine a life without the other, and she looks and feels wonderful again.

You don't have to state that your post swims against the tide of the thread. Your wife made her choice after being fully informed, and left no children to give her a guilty conscience about leaving. I respect that, as you obviously respect the choice of others in different situations. If one feels their time "has come," so be it. But my post was for those who do NOT feel they want to exit this life just yet, and to give them some information they might not otherwise have had on how to stick around.

[ccjlld]

20. I am recovering from Uterine cancer

First let me say, I have been incredibly lucky.

I was diagnosed with Uterine cancer in January. I was referred to my doctor and he performed a complete hysterectomy in March. When they removed my ovaries they discovered that I also had a very small tumor in my left ovary. It was staged as 1a, however they discovered a genetic abnormality in the tumor. This prompted my doctor to run some genetic tests to determine if I had Lynch Syndrome. The test came back with a Variant of Uncertain Clinical significance or VUS in the MSH6 gene, so technically they could not diagnose me with Lynch syndrome, but now I know to be hyper-vigilant, especially since my Mother has had bladder and kidney cancer and my father has had prostate cancer, all cancers associated with Lynch.

All of this started because when I became pre-menopausal, my cycles became extremely heavy and unpredictable. My Primary doctor insisted on testing after several years of problems, and they caught my uterine cancer at stage 2. It was Endometrioid Adencarcinoma which is very slow growning. That in turn caught the ovarian cancer.

My treatment consisted of the hysterectomy and some radiation treatments to lower the rate of recurrance. As I said, I have been incredibly lucky. My doctor calls me a survivor of 2 types of cancer, but after seeing what other cancer patients go through, I don't feel like a "Survivor", just really lucky.

If you have the option, I highly recommend going to doctors associated with a teaching hospital. They tend to keep up with the latest. I had my treatments at University of Missouri hospital and am not sure I would have had the genetic testing if I had gone somewhere else.

[DFW]

21. I wish they did genetic testing as a matter of course here

The expense would probably be overwhelming.

The slow-growing uterine cancer is the more common type. The one my wife had, "the murderer," only strikes, according to the oncologist who oversaw my wife's treatment, women who can be considered "elderly," or who are very slender. My wife is 5'10" and weighs about 58 kilos, or just under 130 pounds. WHEN it strikes, it grows very quickly and silently until it is too late. Since she had gone through a whole round of cancer treatment 15 years before, they were very thorough with her, or it might not have been detected until she was terminal. We dodged a MAJOR bullet. The specialist reminded us that practically no one dodges this one.