Serious Pain in my Ass: Hello Brothers... - Advanced Prostate...

Advanced Prostate Cancer

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Serious Pain in my Ass

DMohr011 profile image
DMohr011

Hello Brothers,

Started a couple weeks ago. Once a day this sharp stabbing pain comes on, builds up and gets really fricking bad for about a minute, then fades and is gone. Like nothing happened. Would occur at different times of the day in the same place.

After a week these pain flashes get more frequent and sharp, Pain scale 8, i guess. It is the most intense pain i have ever felt. Still only lasting a minute or two of extreme pain, then it works it way down and gone. I have tried squats, stretching, walking to get it out. Just sitting comfortable seems to be the best, and just breathe it out.

The location is on my right side inside cheek, up to the bone.

When my tumor was first discovered it was big and was pushing into my rectum. Big buldge can be seen from the sigmoid pics and I could feel it. It wasn't painful, but could feel the pressure. After a few months on ADT the buldge feeling disappeared. ADT is doing it's job and has shrunk my tumor a lot. The scans still show attachment.

This current pain is right from that same area, and man, it just not getting better.

Oncologist thinks it may be damaged nerves and has sent the referral to the pain clinic. TBD with this visit. ( Pain Clinic, wtf is a pain clinic? )

Anyone ever had similar experience and how did you deal with the intermittent pain?

This beast is restless!

28 Replies

Funny title ,if not true .. an apt description of APC ..... a royal pain in the arse..You must find a fix? I’m trying not to get aboard the pain med train right now myself . Doc gave me Celebrex and gabatin for nerve and joint pain.But reading the side effects turned me off . Many are on pain meds ,sleeping aids and anxiety pills . Unfortunately for us with no t or using adt there is no rebuilding muscle or joints . I’ve been in osteopenia and taking prolia shots for over two treats. (Now ) my rib is fractured ? . Nuke scan shows all joints hitting the bricks . Lots of fleeting pains .. Severe pain? Give me the good stuff . Body can’t heal when in pain . Others should guide you better . I wish you an end to this ASAP.

DMohr011 profile image
DMohr011 in reply to Lulu700

Sorry to hear Lulu. At least my pain comes and goes. If it were steady I would be pressing the pain med button quite often.

Maybe I should focus more on meditation rather than medication.

After I posted I realized most if not all of us in the forum have some serious PIA issues. I'm just sharing my whine.! The best is probably yet to come.

Lulu700 profile image
Lulu700 in reply to DMohr011

We have a large choir .. I’m one of the ring leaders in whining . So many here suffer so much it is hard to take . I’m lucky 😳

Hailwood profile image
Hailwood in reply to Lulu700

Sorry to hear about the worsening pain. Be strong and look for the good stuff!

Lulu700 profile image
Lulu700 in reply to Hailwood

Thanks . Compassion is a wonderful thing . We try to tip the scale in our favor to the”good” side .

This sounds like pudendal nerve pain. That nerve sits on your pelvic floor and brings sensation from the head of the pênis, the scrotum and the area around your rectum. Commonly NOT recognized by clinicians, easily diagnosed when recognized and usually treated with injections .

You need more careful assessment of the situation. Would request an MRI of entire pelvic area. Is tumor impacting a nerve that accounts for the pain? Pudendal? Sacral Plexus? May need a neurologist to weigh in on that. Then a radiation oncologist to see if the problem is targetable with SBRT. Go from there.

DMohr011 profile image
DMohr011 in reply to MateoBeach

Its just got to be the tumor impacting this.

My MO just made a referral to Radiation for this pain and I bet that might be the plan.

Crazy fluctuations. Yesterday made it till 8 pm before an 8 scale occurrence. Then all night 3 or 4 times.

Lulu700 profile image
Lulu700 in reply to DMohr011

That RT could drive that pain away . Good luck

I had similar pain but not so bad, way back over nine years ago. It was for me at the time that I began HT, which was in December of 2011, three years after RT in 2008 In my case it was precisely at the end of my tailbone, i.e. coccyx. At the same time there was a pain in my rectum, like a swelling. These were the same locations as my biopsy, which was prior to RT. The HT seemed to eliminate both, during January 2012. But also it wasw during that time that I discovered that I could temporarily eliminate the pain by consuming spaghetti dinners. It led me to take lycopenes frequently, in one form or another: pizza with marinara sauce, burgers with a lot of catsup, thousand island dressing, tomato soup, V8 juice, etc. By the end of January, after taking HT and the lycopenes, the spots had become obliterated. I never knew if they were cancer but I am pretty sure they were. Anyway the pains seemed to migrate to my lymph nodes in my back after that, and one by one, with HT and lycopenes, they gradually went away. I am now unable to detect any pains from lymph nodes. I had to cut off Orgavys lately due to high blood pressure and long QT (bad heart symptoms overrule cancer in remission).

Spaghetti therapy! Mmmm love the lycopene

My bone Mets were in the pelvic region and they hurt like 12 on a Pain Scale of 10 and I said to myself self if this is what the cancer is going to be like I'm ready to check out now but luckily that was when the flare from the casodex and Lupron first starting happened and it hasn't been as bad since since the bone Mets have stabilized

DMohr011 profile image
DMohr011 in reply to Boywonder56

I just had scans done in May and no bone Mets.

When this stabbing pain is at the top, I can do nothing but breath deep and wait it out. Seems more shit is going wrong lately than right.

Suckadoo.

Lulu700 profile image
Lulu700 in reply to DMohr011

No bone Metz great ! Pain no bueno . You’ll find a fix . 🤙🏽

Lulu700 profile image
Lulu700 in reply to Boywonder56

I was the same. Let’s not go back there again!

Boywonder56 profile image
Boywonder56 in reply to Lulu700

That's why I think every time we get a even a phantom pain is like oh no here we go again

Lulu700 profile image
Lulu700 in reply to Boywonder56

I still have my prostate.. At times I get a pain as if a cheese grater slowly grinding on me . Somehow even with no signs of pc or Psa I know pc isn’t done with me yet .. truthfully I’d rather go any other way . Such as a heart attack . I’m not wishing it , but end stage ain’t no joke . Pluck the day .

Boywonder56 profile image
Boywonder56 in reply to Lulu700

Stilll have my walnut too.....im doing this adt treatment as i have for 4 yrs when it fails....time to get affairs in order...

Lulu700 profile image
Lulu700 in reply to Boywonder56

I’m the same . I’ve got two years on ya .

Lulu700 profile image
Lulu700 in reply to Boywonder56

I put my affairs in order upon dx .

Just read your bio d h and we're in the same boat I have that ductal differentiation to with the Gleason nines I think you're right we're not like a .4% of cancers prostate. Yeah there's good and there's bad right now I'm riding a good wave psa's been just barely slowly creeping up from undetectable to still undetectable with a higher rate hang in there brother

DMohr011 profile image
DMohr011 in reply to Boywonder56

Hello fellow ductal fighter! You are much more seasoned than I. Sorry!

Boywonder56 profile image
Boywonder56 in reply to DMohr011

Nothing to be sorry about bro I don't know what you're doing but I'm doing the Lupron and early de I got in the Titan trial right at diagnosis and I really think the double pronged approach ta knows the name of it is the way to go especially if you're non-metastatic

DMohr011 profile image
DMohr011 in reply to Boywonder56

I too am on the Lupron train along with Zytiga. Plans are to radiate along with immunotherapy, Keytruda. But I have to wait till September for that fun to begin.

Glad to meet ya, Boywonder56.

Could be protalgia fugax. Talk to your family medicine doc. Can be treated with topical nifedipine.

Hello DMohr011,

I think you've got a number of good suggestions that I hope you're able to pursue. In the meantime I'll add a simple and dumb suggestion that sometimes an ice pack, or even a heating pad, can reduce pain at a single spot. Might be worth a shot.

Good luck.

Alan

Bone mets in the pelvis are tough on nerves. Pain would run down back of thigh, calf and foot. ADT, Lupron and abiraterone, quit working 09-2020, PSA at 7, PCa unchecked until 04-2021. Recent bone scan, April showed the rt. half of my pelvis solid black, PSA 69. Pain got severe, 7 to 9 and taking 3000 mg of aspirin and acetaminophen per day to stand it. MO scripted opioid to allow surgical procedures, biopsy and port for chemo, aspirin is blood thinner. MO referred me to radiology for pain management. I did not get there.HERE IS THE GOOD NEWS. I had started off-label drugs and supplements in March. Started docetaxel, 04-18-2021. On 05-11-20, PSA was 26, a drop of over half in less than a month. The severe pain from pelvis mets was almost gone. Everything I have read about docetaxel, it was not supposed to do that. I think the drugs in combination with it making it work better and putting a whoopin on the bone mets. I still have sudden, sharp jabs of pain, like you describe, nerve pain. They are getting less frequent. This would be awesome if something would work on bone mets.

Met with the pain doc today. He is recommending a impar ganglion block along with some topical cream, 1000mg of Tylenol with meloxicam for 7 days. For starters anyways....

Practicing medicine.

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