pain in hip/back - ignored by docs

[Jpburns]

My cancer diagnosis started with hip/back pain, and yet I’m unable to get my primary care doctor, 2 urologists, my oncologist, a surgeon, nor my radiation oncologist to agree it has anything to do with my cancer (Gleason 9, prostate and pelvic lymph nodes).

I went through physical therapy, an X-Ray, a lumbar MRI, and a consult with a neurologist, looking for the reason, but while I have a history of back problems, this just feels different. It comes and goes, and seems connected with activities like using the bathroom or sitting “wrong.”

I’ve seen quite a few people report similar symptoms here, and on other forums.

Look at page 4 and 5 of my ongoing comic for details…

(burnscomics.com/cc)

Oh well… maybe the EBRT next month will make it magically go away.

[God_Loves_Me]

How many session of EBRT ?

[Jpburns in reply to God_Loves_Me]

28 fractions in 5 weeks.

[Still_in_shock]

Look at the positive. You can enroll in Medicare in less than a year. You wont need referrals, just pick a specialty, and see if they can help!!! Make sure you get Part G, and the doctors wont cost you a dime.

[Kittenlover50]

did you have a pet scan? What is your PSA trends?

[Jpburns in reply to Kittenlover50]

Yes, PMSA Pet scan in December, after the biopsy, after the pelvic MRI. Showed high avidity in sections of the prostate as well as local lymph nodes.

[Kittenlover50]

sorry if I missed something.. why the radiation next mo.

[Jpburns in reply to Kittenlover50]

Errrrrr… prostate cancer? Gleason 9, stage 4?

[Kittenlover50 in reply to Jpburns]

Got it. Best wishes on a long positivevoutcome

[DJBUNK]

For me, knowing that I had cancer turned me into a fledging hypochondriac. When I began experiencing back and hip pains, my doctor assured me that it was most likely arthritis or mild joint degeneration that comes with aging. Unfortunately, most of us diagnosed with prostate cancer are also at the age when arthritis and other odd pains begin nagging us. I was also G9 with lymph node involvement, diagnosed at 56 followed by surgery and then radiation 8 months after surgery. Within a year of my diagnosis (before and during ADT), I began experiencing back pains that I never had before. I was worried it was the cancer lodging into my spine or pelvis. But eventually the pains would subside, sometimes returning for a few weeks before subsiding again. With my PSA remaining undetectable and the pain coming and going but never increasing in intensity, I eventually came to the conclusion that it was arthritis or joint pain, just like my doctor told me.

I'm 61 now with no recurrence so far. I've been off ADT for 2 years and the pain has actually disappeared for the most part, so I now wonder if some of it was from the ADT (which caused weird pains in places unlikely to me initial metastasis such as ankles, shins, wrists, etc).

I'm not saying your pain is definitely not related to cancer, but hopefully that's the case.

[j-o-h-n]

I like many of us believe every pain we feel is due to Pca (even the pain brought on by my ex-wife). I am not doubting your reaction to your pain, but sympathize with you trying to describe and to convince "people" that your pain is Pca related. Seems like you're touched all the bases yet you still have pain. From 1 to 10 how painful is your back pain? You may have already described your pain ordeal in one of your "strips", if so, show it to the docs (and to us)...Pain takes over your life....(I've had many passing Kidney Stones).... As they say "I feel your pain".....

Good Luck, Good Health and Good Humor.

j-o-h-n

[Jpburns in reply to j-o-h-n]

It can be crippling, but goes away quickly. In this way it is totally unlike any back pain I’ve experienced before.

[j-o-h-n in reply to Jpburns]

What do you do to make it go away?

Good Luck, Good Health and Good Humor.

j-o-h-n

[Jpburns in reply to j-o-h-n]

Mostly positional. Pull my knee up to my chin. Sometimes it will ease off after I walk a bit.

[j-o-h-n in reply to Jpburns]

It's good that it goes away... but I too would think it's my Pca. You need to find/see a compassionate MD....Take care and keep cartooning...

Good Luck, Good Health and Good Humor.

j-o-h-n

[skiingfiend in reply to j-o-h-n]

I took away her credit card, 3 months later she was gone.

😀

[j-o-h-n in reply to skiingfiend]

😉Thanks pal............... now I got her.........

Good Luck, Good Health and Good Humor.

j-o-h-n

[NecessarilySo]

I've developed a reliable test for my pain in spine. If it goes away after drinking some V8 juice, then it's cancer.

[j-o-h-n in reply to NecessarilySo]

hmmmm V8 juice....What's your Doctor's reaction to that?

Good Luck, Good Health and Good Humor.

j-o-h-n

[NecessarilySo in reply to j-o-h-n]

My doctors have no interest in the subject of lycopenes and use against prostate cancer. I think it is generally "out of sight, out of mind". Vast areas of science regarding prostate cancer are unexplored and beyond scientific interest...imo.

[j-o-h-n in reply to NecessarilySo]

Their egos get in their way..........

Good Luck, Good Health and Good Humor.

j-o-h-n

[Seasid]

My sister is a doctor and she said that at the University they thought them that if someone has a cancer you should exclude first that the cancer is causing the health problems.

Therefore you are correct. You should investigate that possibility first and not just believe that the problems are age related. Why don't you ask your doctors why they didn't believe it is cancer related?

[Jpburns]

I think they rely on tangible evidence, ie, test results. So when I didn’t have mets to that hip or spine on the PSMA PET scan, that meant it’s something else. Plus I do have a history of back problems. But again, this feels different.