Pain in the lower tailbone?

[Callbox]

Just receiving my diagnosis post MRI and biopsy and don’t yet have a Gleason score but doc says 99% sure the tumor found in my prostate is cancer. For the last few months I’ve been experiencing pain in my lower tailbone (coccyx) but every doc has said that is not a symptom of PC. This leads me to worry it’s spread into my bone… Has anyone else experienced this too?

[Tall_Allen]

Many have experienced the kind of worry you are going through. I know I was always fearful that every lower back pain was due to PCa. A new mattress fixed it.

[Callbox in reply to Tall_Allen]

Thank you so much for your response.

[dylanfan1962]

Responding to your concern about pain in your tailbone. I was diagnosed with PC this October. I too was experiencing acute pain in my lower back, hips and pelvis. My team at Mass General Hospital ordered a full body bone scan with contrast (nuclear medicine) and also another MRI of my lower spine, hips and pelvis. This seems like a very logical, non invasive approach. I recommend you speak with you oncology team about these 2 tests. Peace.

[Callbox in reply to dylanfan1962]

Thank you for this, very helpful.

[Callbox]

PSA shot up to 17 in 6 months. Had Prostatitis (or so we think) which was treated with antibiotics. PSA still clocking in at 7. My father and grandfather died from PC at or around my age (57) so doc sent me for MRI which showed a lesion; biopsy with ultrasound - results pending but doc said 99% certain it’s PC. I’d been having the lower tailbone/rectum pain for a few months but all docs say it’s not a symptom and brush it off.

Thank you for your reply. Tremendously so.

[Hidden in reply to Callbox]

Easy for the doc to brush it off!However , I don’t think that is right to do . Worry won’t help . Why that pain , if you never had it before . ? You’ll feel much better once you know the full story . My dad had this too.

[Hidden]

Hello Callbox , it’s quite normal to fear the unknown . Until you know fully don’t project anything on yourself . The doc doesn’t want to speculate . If you get proven metzs then take action . It’s a terrible thought to not know .. Very soon you’ll know what to do . Then there is no loooking back . Drop all bad habits ..In the meantime it’s easy to go nuts with ( what if”?) If I had done only what the docs had told me I would not be here almost 8 years after a really bad dx . One guys doctor told him” You’ve picked the best time in history to get pc , so many new drugs and treatments . “ well? There is never a good time . Simply put , no man has figured stage#4 hormonal cancers out . We are looking for a miracle . For now they take your testosterone #1 then put some poisons on you to kill the pc . I was beyondd surgery ,I did 8 wks imrt with Lupron and a now defunct adt drug that kept me clear over seven years . I just dropped that test drug seven months ago . Pc can fight back . The best point to knock it back is in the first round imho . Once diagnosed we fight this in one form or another ,for life . We trade off a lot if we are to stay aboard this ship . Like the band on the Titanic “ we play through ” We can ask each other anything here . Band of brothers . We will tell you more than . the doctors ever will . Nobody wants this club but welcome aboard . Good job finding this cite early on . ,! do whatever you feel will save you ! I’ve Done boatloads of strict diet nutrients and alt med… I’ve tried alot of wild stuff . I stay on the no sugar holistic diet . For me it has made a difference… Take care CB! A year from now you’ll be past this ! 🙏🍀

[Callbox in reply to Hidden]

Thank you and the very best of luck and health to you. I know everyone’s journey is different and I’m grateful so many people are willing to share theirs. Learning more everyday…

[Hidden in reply to Callbox]

Just keep asking questions . The more you know the better you’ll feel mentally . 👍

[JimmyStart]

Hi Callbox,

Not sure if this will be helpful but I've suffered pain in the same area for nearly 5 years now. It was eventually diagnosed as pelvic floor dysfunction and completely unrelated to the prostate cancer I was diagnosed with about 12 months later. It did impact my treatment options as I have never been able to relax my pelvic floor muscles enough to do the exercises required to prepare for surgery. The pain I experienced following attempts to do kegels was almost unbearable, despite plenty of attention from a physiotherapist. As a result, I chose a focal treatment which didn't work and 2 years later, SBRT which I'm hoping has done the trick.

I still have the pain intermittently but it will usually go away after stretching exercises. My urologist once categorised the pelvic floor pain as part of chronic pelvic pain syndrome (or prostatitis) which can also play around with PSA levels.

You didn't mention what your pain feels like but mine always starts with a dull ache which increases in intensity, hitting a peak within 15 mins, and seems more likely to start around bedtime.

I can't blame you at all for worrying about this, particularly given your family history but, just like my pain, you will hopefully find it is completely unrelated to PCa. All the every best with your upcoming results.

[Callbox in reply to JimmyStart]

Thanks for the reply and I’m sorry you have to contend with that. Mine is a constant ache that started the same time my PSA shot up a few months back, but we do think I had/have prostatitis so it could be a result of that. Otherwise there seems to be no pattern or relief and it just doesn’t feel right. I’m worried about metastasis because I also lost weight this year.

It’s hard not to think the worst because I’ve seen the worst, having watched my own father die from this 30 years ago. They removed his prostate and lymph nodes and told him they got it all… But they didn’t. And it was aggressive. So I’ve been super proactive about screening but as we know that sometimes doesn’t matter. And now I worry about my son since this is so obviously genetic for us. This is all not very good for my mentality! But I’m trying to be positive until I have all the details, as everyone says.

Best of luck to you in your journey and thanks for sharing.