How does modern medicine miss cancer for 15+ years? How does cancer spread?

In My Humble Opinion
1

We just found out last night that my fiance’s paternal grandmother has cancer everywhere - bones, brain, some organs. We’re awaiting final tests to determine the full extent and life expectancy. If there was any way of treating it, she’s not going through with it. She’s just going to let it take her, mostly because she’s been sick for so long she doesn’t want to deal with it any more.

She had breast cancer and a mastectomy in 1984. No follow up chemo or radiation (not sure what the protocol was back then). About 5 to 10 years later, she started complaining of a series of maladies, and was eventually told she had osteoporosis, fibromyalgia, it’s all in her head, etc. Turns out they were wrong, and they hypothesize that the cancer in '84 has slowly spread throughout her body.

First, how the hell do doctors miss this stuff?

Second, how does one type of cancer become another?

2

I can give you an answer to your second question: it doesn’t. It’s still breast cancer, because it starts with one cell and that original cell that started copying like crazy was a breast cell. But it’s now breast cancer in the bones, brain, etc.

I’m sorry for your family. I’m all about information in times of crisis, too.

3

Sounds like they didn’t test for it and assumed her cancer couldn’t be related to her more recent problems. There’s really no excuse for that, it sounds flat-out stupid.

Other times there just aren’t any obvious symptoms of cancers and nobody happens to look in the right place.

Tumors do sometimes change for reasons I definitely don’t understand. What you’re describing just sounds like a tumor starting in one place and spreading to others (like Helen’s Eidolon said).

4

I don’t know all the details, but my sister-in-law died because of undiagnosed cancer. She started having stomach pains which her doctor insisted was just indigestion. It kept getting worse and she started having other problems. By the time they got around to testing for cancer it had spread to the point where it was untreatable.

My brother sued for malpractice and won, but that wasn’t much consolation.

5

There also aren’t a lot of simple and inexpensive tests for cancer. Where there are, we do them (mammograms and pap smears and prostate screenings). Since cancers are often asymptotic - or have symptoms that can be attributed to more common causes, doctors often look there first - while the cancer clock is running.

However, in this case with a past history, she probably should have been getting regular cancer screenings.

Another thing is that sometimes (and this doesn’t appear to be the case here, but it was the case with my own grandmother) the patient doesn’t want to look too hard for cancer. My grandmother died this fall - she had lung cancer (something else killed her - she was in her 80s, but she was dying of lung cancer). We suspect SHE suspected lung cancer for a LONG time, but I was with her when she was first admitted to the hospital emergency room for what would turn out to be her cancer diagnosis (she had fallen) - while she told the ER doc that she did not have emphysema, did not have any heart problems, and had given up smoking years ago. All untrue. If you are going to lie to your doctor, you don’t get a good diagnosis. But I think she didn’t want to know.

I’m sorry about your fiance’s grandmother. I hope she gets a good death, if that is what she is choosing.

6

Have they identified a primary source? It’s not necessarily a recurrence of the previous cancer, but possibly a completely unrelated occurrence possibly with a different origin site.

My mother, hospitalized with a *respiratory problem–and who had never had cancer, but was a high risk–was scanned head-to-toe for any sign of tumors and came out clean. A year later she went back to the hospital with a respiratory problem, and was riddled with cancer. She was so consumed that treatment was not even discussed, that they would probably lose her on the table just trying to do a biopsy. She lived 9 days after that, mostly mercifully drugged into La-La Land.

Her case was the topic of a hospital staff meeting three days after her admittance. They pulled all the records from the previous year to see if they had missed anything. Nothing showed up. What one of the doctors told me was that that didn’t mean that there were absolutely no cancer cells in her body at that time–but if they were, they were too small to form a tumor that would show up.
*Turned out to be an allergic reaction to a change in her medication.

7

I think this is part of it too - she has been in denial for years and probably wasn’t honest with her doctor.

No, they’re still doing testing. We might now in a week or so.

I’m pretty removed from this all - I’ve only met her once - and my fiance isn’t super broken up about it. He’s upset, but I think we’ve all seen this coming for years. She’s unhappy and is ready to go, I think.

8

Sorry to hear that.

Many people are discharged from formal cancer follow-up at 5 or 10 years disease free.

Bony mets and brain mets can develop over months, or over years. It’s hard to know. To diagnose them you need xrays, bone scans, CT or MRI scans, ultrasound scans, lots of other tests.

IF she had these tests at the time and they showed no cancer, it is possible there was no cancer to see at that time. If she didn’t have the tests at the time, it needs to be determined whether she should have had them and didn’t, or was offered them and refused, or something else.

Hindsight is 20-20, and unfortunately you can’t give everyone who complains of “just not feeling right” a full body scan, so perhaps AT THE TIME her doctors were justified in not carrying out more detailed tests…hard one to call without all the facts. Could be negligence, could be a judgement call that just didn’t work out.

Sometimes we know there is probably cancer, and we just don’t go looking for it- say an 85 year old with anaemia and an irregular bowel habit comes to me. Now, I know the most likely cause is a colonic tumour. But perhaps the patient isn’t very fit (lets say a couple of strokes, a heart attack and lung disease), and I know the surgeons would never operate and the chemo and radiotherapy wouldn’t work very well or for very long and might kill her.

Meanwhile, all she complains of is a little constipation and diarrhoea…

Now, do we opt for colonoscopy and go down the road of treating an elderly person aggressively, or do we sit down, say “your symptoms don’t seem too bad, but there could be a major problem like cancer- would you like to have the tests, bearing in mind you might not be well enough for the treatment to give you a benefit, or would you just like to wait and see how things go”.
A lot of sick, elderly people would rather just wait it out, and many of them will die of their heart disease or dementia or emphysema long before the cancer kills them.

9

I of course can’t make any definite pronouncements about your grandmother’s individual case, but I think there is some poor communication here on the docs’ part. Generally speaking, anyone who really had clinically detectable metastatic breast cancer in 1989-1994 would have already died long ago. Nowadays, we do fortunately see some people who live with metastatic breast cancer for years thanks to the new treatments out there, but back in the 90s it was expected that metastatic breast cancer patients died within 1 or 2 years even with treatment (the prognosis is/was somewhat better for women whose cancer only returns to the bones and not the organs, but even then most died within a few years).

Yes, any good doctor should always keep in mind the chance of a recurrence when evaluating a former cancer patient for new symptoms, but I think what happened here is that her prior symptoms may truly have stemmed from other issues like osteoporosis, and that those issues were separate from the cancer.
Something I’ve learned in my own medical training is to never forget that someone who has one big problem may very well have other problems that are totally unrelated (like the psychiatric patient who complains of a sore foot - yes, the foot pain could be a delusion as part of their mental illness, but you still have to check them out to be sure that they don’t really have a broken foot, because psych patients can still get sick or injured like anyone else…same goes for cancer patients, they get sick with unrelated things too - it isn’t always the cancer). Elderly people often do have more than one complicated medical problem at the same time.

When the docs say that the cancer has been there since 1984, what they probably mean is that microscopic cells from the cancer have been lurking in the body all this time, but may not necessarily have been clinically DETECTABLE or been causing any problems until recently when they started growing into tumors big enough to cause these new problems.
It is unfortunately not unusual that women who have an early breast cancer, are treated and declared “cured”, but then show up years down the road with a late recurrence of widespread disease. Unfortunately, with the current limitations fo science and cancer treatment, we have no way of being certain that every little tiny microscopic cell of cancer was truly destroyed with the initial treatments. This is why oncologists tend to prefer using the term “in remission” over “cured”. You hope for the best, but you never really know.

If you would like to get some more info on late stage breast cancer, I highly recommend the mailing list at http://www.bcmets.org It is very active and you can find a lot of women with personal experience to share about this disease, whether it’s about treatment or about the issue of comfort care if your grandmother does indeed continue to feel that she does not want to pursue treatment.
Best wishes to you and your family.