Painful Question

[Mkeman]

As one might expect on a cancer site, there are many references to pain and discomfort. I am fortunate not to have reached that stage but I know it likely lies ahead. My question is why, with all the pain treatment modalities available today, patients still have so much pain. Do physicians under prescribe.....do treatments lose their effectiveness....or do patients tire of the side efffects and accept the discomfort? I would be interested in hearing from some of you who are dealing with pain....it might help me prepare for when it comes.

[ctarleton]

I was in morphine level pain in my lower back and abdomen at original diagnosis Stage IV about 4 1/2 years ago, due to mets to an area of the spinal bones and a lymph node the size of a golf ball. The usual hospital pain medications knocked that pain down, and systemic ADT treatments have kept pain away since then. So I cannot (yet) report personally about pain management at later stages. However, here are some other thoughts that come to mind.

Charles

I would say that an individual's pain management could probably benefit from expanding the treatment team, particularly if a doctor or oncologist does not seem as empathetic or as interested as may be needed. There are several different modes and corresponding treatment themes for advanced metastatic cancer, particularly of bones. Some of them are mentioned here:

mcancer.org/bone-metastasis...

Knowing when and how to "call for reinforcements" sometimes has to be driven by the patient and caregiver if the oncologist or general primary care physician may be reluctant to get outside of his set of treatments and/or gets tunnel vision on just your medical chart rather than you as a whole, feeling person.

There are Palliative Care specialists at many hospitals who can be added to the team, earlier rather than of later. They are often better with the drugs options and management and day-to-day stuff than the oncologists, particularly when things may start to transition into the home with increasing disability. Of course, the same can be said for Hospice Care teams, too. So often, "the sooner, the better", when considered in hindsight by many patients, caregivers, and families.

Referrals to Radiation Oncology specialists may be useful for spot treatment of painful mets. Or for coordinated use of radiopharmaceuticals that might treat from within.

When bone mets cause bone failures, or collapses/pressures onto nerves, that can often be helped by Oncology/Spinal Surgeons to help stabilize or fix such things, and hopefully alleviate the pain.

If other internal organs or systems are affected by metastases, Internal Medicine specialists or Surgeons can sometimes do things that relieve pain, such as placing stents in blocked anatomical pathways, or draining buildups of fluids in certain parts of the body or around certain organs. Etc.

Knowledge can be power, and also a key for better quality of life. Patients and caregivers who are bold and persistent in building their team, and expanding their team when needed, may do better in some circumstances along the way, including in pain management. If in doubt, report all pain symptoms, request/demand relief or referrals, and keep looking to maximize your options for an improved quality of life.

[Mkeman in reply to ctarleton]

Thank you for all the info. The idea of adding a Palliative care specialist to the team is something I will discuss with my MO at the next meeting.

[Shooter1 in reply to Mkeman]

Orthopedist on my team favors going in and numbing specific nerves to see where pain is coming from and then going in and cutting specific nerves. Kind of drastic but as last resort type of relief it can work.

Doug

[cesanon]

I left a post somewhere on this forum that had a long detailed quote from a quora.com answer to this question.

It was detailed and good. I would encourage you to do a search for it.

[Mkeman in reply to cesanon]

Thanks. Will look for it.

[cesanon in reply to Mkeman]

Here it is:

healthunlocked.com/advanced...

quora.com/What-happens-in-t...

Gary Larson, MD - Have Treated Over 10,000 Prostate Cancer Patients

Answered Feb 22 · Upvoted by Margarita Orlova, I am biologist in profession and a frequent patient myself

I currently have a patient taking the equivalent of 3,500 percocets per month to control the pain from stage IV prostate cancer. (1) PEOPLE ARE FOND OF USING THE TRITE EXPRESSION THAT MOST MEN DIE WITH PROSTATE CANCER RATHER THAN OF IT. THIS IS WHAT IT CAN BE LIKE TO DIE WITH IT.

Prostate cancer preferentially spreads to the bones, although now that stage IV prostate cancer patients are living longer with chemotherapy and newer treatment modalities, we are seeing spread to visceral organs as well (lung, liver, brain, etc.). They also have more time to develop the conditions described below.

Bone metastases are usually asymptomatic when first discovered, but over time, they erode the healthy bone, destroying nerves, and causing excruciating pain. Men will often have dozens or even a hundred metastatic sites that each hurt just like a broken bone, not to mention compressing spinal nerves, causing pain in the entire distribution of those nerves. Some bones do break in the process.

Skull base metastases deserve special mention. Compressing the cranial nerves as they exit the skull base, may paralyze cranial nerves causing the inability to use the eye muscles, facial muscles or swallowing muscles. If one’s facial muscles are paralyzed, they can’t blink, which leads to keratitis and blindness (unless the eyelid is partially sewn shut - or weights are surgically implanted in the eyelid to allow it go down all the way. If one can’t swallow, they need a feeding tube (these men are fully awake and functional, but will starve to death without the ability to swallow food - not the situation where a feeding tube is placed to keep comatose patients alive, which is a completely different issue). Not being able to swallow saliva means they must spit 1–2 liters of it every day, or have a fistula placed so it drains out of their neck. Compression of the trigeminal nerves cause pain in the distribution of that branch or branches - it’s like having a toothache in all your teeth at once - or that same intensity of pain in the upper part of the face.

While cancer spreads to the rest of the body, it’s also progressing in the pelvis, where it started. Bladder invasion causes intractable spasms and a constant painful feeling of needing to urinate. A catheter becomes necessary - usually placed through the abdominal wall directly into the bladder, which is less uncomfortable than having it go through the penis for months or years. The cancer can grow posteriorly to close off the rectum, requiring a colostomy - or just causing death from peritonitis. (A colostomy doesn’t do anything about the constant feeling that you have a butcher knife stuck up your ass.) Obstruction of the ureters requires nephrostomies (urine draining out of the back - from where the kidneys are). A well informed patient may refuse nephrostomies and die a relative painless death from renal failure in the next few weeks or months.

What about Hospice, you might ask? Hospice is generally reserved for patients with a 6 month life expectancy - these men may live for a year or two with these problems.

Not all patients get all these symptoms, but just pick a few of them and imagine living with them for 2–3 years.

Many men who die “with” prostate cancer may have liver failure, bone marrow failure, heart failure, renal failure, etc. listed as the immediate cause of death on their death certificate. Listing these diagnoses as being secondary to prostate cancer may or may not result in them being counted as a prostate cancer deaths.

The 27,000 men officially listed as dying FROM prostate cancer last year may, in many respects, be the lucky ones. They have come to the end of living with it.

You can see why I support PSA screening for prostate cancer. 90% of the men who are cured of prostate cancer had their disease caught early by screening. Those who don’t are playing Russian roulette with fate described above.

It may be necessary to place a weight in the eyelid or sew it partially shut due to facial nerve paralysis caused by skull base metastasis from prostate cancer.

A nephrostomy tube placed due to kidney obstruction by prostate cancer.

Spinal fractures due to prostate cancer.

Aside: I didn’t mention the morbidity from treatment - living without testosterone for years, side effects from chemotherapy and a variety of newer side effects we are discovering from the newer drugs that are now available to treat prostate cancer.

(1) 320 mg of oxycontin per day + 240 mg immediate release oxycodone = 560 mg/day X 31 days = 17,360 mg/month - which is the equivalent of 3,472 Percocet-5’s per month.

[StephjoeSteph4197]

It is my experience, with my husband’s progression, some daily pain is to be expected. It now seems to be at an acceptable level for him. Doctor told us some pain meds work better for certain people than others. It was true for my husband. A palletive team was helpful in working with us on pain meds. Documenting pain and meds gave docs useful info too.

[Mkeman in reply to StephjoeSteph4197]

Thanks for sharing. It seems like everyone finds and tries to live with “an acceptable level.”

[MelaniePaul]

Very interesting question indeed.

I think that some pain can't be controlled because it isn't actually physical pain that we are trying to control. It may be a psychosomatic pain, a pain that has no cause as such in the body, if you know what I mean?

I also think it is possible that some of even our strongest pain medications are not strong enough for certain types of pain. And, if you gave them in the dose that they are necessary to make you pain free, that would cause other complications.

There are so many different types of pain and pain responses by the individual.

My husband, for example, had a chronic pain around his stomach area for almost all his adult life. It was never diagnosed, because nobody knew after all possible tests had been done, what it could be. I observed over the years that it got worse when he was under stress. It could suddenly arise in the middle of a wonderful afternoon - as if his system believed that "too good can't be", "there has to be something going on with me". In fact, I came to see this pain over the years as a pain that was an expression of "I need to feel myself", almost like a control of his deepest self, not to let go to much, not to be in the moment to much, out of fear of what would happen then. His pain was quite well under control with Methadone. But it never really went away. In where that is concerned I think it didn't go away because it could not go away, for him that pain was very important for survival, do you understand what I mean?

[leo2634]

My pain was in my right pelvis area just below the buttock. I can only say that now knowing it was due to a bone met the pain and discomfort it caused was excruciating. I never knew what a bone met was until APC all along I thought it was a pulled ham string until my tests showed them on the scan. I suffered for months on end with the pain could not get comfortable no matter what many sleepless nights walking the floors I received my first Lupron shot and pain levels immediately dropped I still have pain in that spot but tolerable just a little pain in t he butt now ( pun intended) I thank my MO for the quick treatments that finally helped me. Leo

[Mkeman in reply to leo2634]

In this day of “modern medicine” no one should have to walk the floor all night in pain. Perhaps we are not as modern as we would like to think. I am glad Lupron helps.

[leo2634 in reply to Mkeman]

At the time of the sleepless nights I didn't know I had PC.

[Rmanns]

If you have bone mets you're likely to have pain. Sort of a given. My pain can be a little unpredictable and l wake some mornings with more or less pain.doc and don't wait until The most important thing I've learned is to stay ahead of the pain. I'm hesitant to take any more meds than the numerous meds I already take. But if I listen to my doc and don't wait until I'm very uncomfortable I'm more useful during the day and a much happier camper. The second thing I've learned is morphine causes constipation always. Drink water all day every day, more than you want. Sucking on ice is helpful. Metamucil helps a lot and includes more water.

The pain continues and gets worse over time. If you relax accept it and don't try to be a hero it can be managed. I'd love to tell you better news but truth is pain is most likely coming and it's not fun. But be smart don't fight it and you can continue a happy life.

[Mkeman in reply to Rmanns]

Thanks for your insights. I have often heard of the need to stay ahead of the pain, But so many of us re taking so many meds I can understand the reluctance to add more. I read today that there is a very critical shortage of morphine in the US. Even foreigners are questioning how could that happen here?

[Rmanns in reply to Mkeman]

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