Persistent unilateral hip/pelvic pain - could it be a met?

was the MRI of the hip? your description of the pain sounds like you might have some type of nerve entrapment, or pyraformis syndrome, have you seen an orthopedist? I would think if  there is a met in the hip the xray would show a lesion, but it should be evaluated further I know you don't want any more CTs or PET scan but maybe an orthopedist can shed some light also have you had alkaline phosphatase lab test, if it is high,they should do alkaline phosphatase isoenzymes, they will show whether it is high from liver or bone, it is an inexpensive test but can provide some insight, my husband is a survivor of melignant melanoma, and his doctor monitors the alkaline phosphatase because of the potential to metastasize to the liver and bones, just a suggestion hope you get some answers we all know how it feels to worry about a met you are in my prayers

Zsazsa, you are an MD so you are likely the best equipped among us to pursue your issue.  That said, you requested feedback about anything similar we have experienced.  I will relate that, in 2005, after my hysterectomy and EBRT, I had a few episodes where I was incapacitated by sudden pain in that region.  I remember being paralyzed with pain on taking that initial step forward from a standing start.  After imaging, I was advised that there was evidence of radiation-induced insufficiency fracture in my sacral area.  Then, leading up to my dx of my first recurrence, I suffered hip/pelvic pain in action and aching at rest that was not relieved by heat, NSAIDs, dry needling, etc.  That turned out to be the malignant para-aortic node that was pressing on my psoas complex.  Radiation solved that.  Following chemo in 2017, I complained of persistent hip/pelvic pain on my left side.  Neither screening CTs nor MRI of the region showed anything, and one of my caregivers referred me for myofascial release therapy (MFR).  MFR has been revelatory for me.  I haven't written about it because I have only a cursory understanding of what it is.  During my first treatment, I lay there and thought this is sheer quackery! I pursued it bc Medicare paid for it.  I've been going for 2 years for various complaints, and I have learned self-help techniques to employ with simple tools.  The relief of various symptoms has been undeniable.  I was most fortunate to be referred to a skilled practitioner, whom 2 of my doctors described as having magic hands.  I do also have piriformis syndrome on that side, but whenever I get a twinge, I can relieve it on my own with the techniques I have learned. I hope you rule out a recurrence, and that some form of complementary therapies will give you relief.  I think it's hopeful that the pain is not present at rest.  Of course, you will pursue this diligently to conclusion.  Best wishes, Oldbeauty

zsazsa, my hip/groin pain actually predated my hysterectomy.  It was intermittent  -  sometimes weeks with no pain - and as you mentioned, often relieved by moving around.  In my case, it was the worst at night.  Two years after my surgery they did a CT scan and found nothing.  Thereafter, even though I mentioned it at each appointment, the intermittent nature as well as the clear CT scan led them to believe it was arthritis.  I remember being told, "Cancer pain doesn't stop."  Well, I guess that's not right.  Eventually there was a night when I did not sleep at all.  I could find no position that I could stay in.  When it began to get light, I went out to walk and within 20 minutes the pain was gone.  I decided to see my orthopedist, who did an x-ray which revealed nothing useful, so he sent me for an MRI.  The MRI showed the pelvic mass invading my acetabulum.  PET scan revealed mets in both lungs.

My orthopedist explained several things in the hip joint that could cause the pain, including the pain in the groin. In my case, there was indeed damage to the iliac bone and acetabulum, but it was caused by the cancer invading the joint.

In your case, the MRI was negative so I'd think that's a good sign.  Good luck tracking it down!

My right groin pain started during an aerobic exercise class and was intermittent.  However, my multiple MRIs were showing what the reports described as stress reactions and/or stress fractures.  I assume if you've had hip x-rays and an MRI that were normal, your problem is not likely orthopedic.  However, if I were in your situation, I would get another MRI.  You said the last one was in September, and it's now December.  You also said that you've had the pain for perhaps three months.  So your prior MRI would have been around the time you started to have pain?  From what I've heard over the years of my hip saga, there can be a lag time between what's going on in the body and what shows up on the films.  Now that you've had the problem for several months, I would want a current right hip MRI to see if there have been any changes since the prior test. 

After about 5 years of intermittent pain, which once went away for a year and a half, I ended up needing a new right hip and I've been fine since I had my total right hip replacement in 2011.  However, between the onset of my groin pain and the hip replacement, I was put on crutches for multiple times and multiple weeks.  I also had PT multiple times.  But the intermittent pain eventually became more frequent and I ultimately had to pick up my right leg to get it into the car!  The orthopedic surgeon said that he doesn't think I ever had a stress fracture, but that the MRIs were actually showing stress reactions to arthritis. 

Good luck in getting to the bottom of things quickly!

oldbeauty said:

MFR

My cursory understanding is that the interior body is sheathed in a fascia layer.  This layer is an organ itself.  It has blood vessels and capillaries and nerves (lymph also?, dunno).  This fascia is capable of bearing down on nerves, muscles, ligaments, etc. at some unbelievable pounds per square inch of pressure.  With that picture in mind, I could compare MFR to trigger-point massage therapy where the therapist exerts very firm targeted pressure, consisitently, until the muscle knot or whatever releases.  I have been a huge fan of deep tissue massage therapy.  But MFR, in my experience, is targeted, but very light, consistent pressure intended for the fascia to release its grip. I've had relief for both my neuropathy and perhaps adhesions left over from my hysterectomy (I had an open incision, not robotic), as well as persistent shoulder problems following successful rotator cuff surgery.  It's important to have a skilled practitioner whom you trust.  I say this because one of the most dramatic treatments I had for neuropathy involved "internal" work, with one or more fingers (gloved) pressed against the vaginal wall.  At one point, I experienced a palpable release on my left side from my iliac crest down to my toes; I felt it release all the way down (sometimes it makes sense to approach a deep area from inside the vagina rather than the skin-side of the groin).  I tell you, that was the beginning of marked improvement of my neuropathy.  Since I began these treatments, I have been able to wean myself from 225 mg of Lyrica daily to 75 mg daily. And for my shoulder, I got a lot of relief from the pain caused by a bone spur that has developed at the top of the humerus.

I've learned also that part of this therapy includes removing scar tissue by application of electrical stimulation (there's a device that's called a Dolfin sp?) along incision scars.  This not a TENS unit.  I've had this done on my 15 year-old open hysterectomy incision, as well as my scars from arthroscopic surgery to repair a torn rotator cuff.  And my therapist's newest toy also struck me as insane, but it worked for me also.  It's an electrical stimulation device that tailors patterns of therapy based on a "diagnosis" of trouble spots by a device.  Unfortunately, I've exhausted my Medicare benefit for the year, but I will return next year.  This machine stimulates an established acupuncture meridian useful for peripheral neuropathy.  I can feel the electrical stimulation gently down to my toes, which will twitch during treatment.  I get tremendous improvement of neuropathy symptoms for a few days but it hasn't been permanent for me.  The device (conceptualized by a German quantum physicist, no less!) costs over $1,500; otherwise, I'd buy one for myself.  Anyway, enough with the promotion.  All I can say, MFR has really improved my quality of life.  Best wishes to you, Oldbeauty

 

I had a related treatment about five years ago after a foot injury was diagnosed as a peroneal tendon tear that doc wanted to do surgery on. I was unsure doc was right (and didn't want to be in a boot for 6 months) and found my way kind of by accident to someone who did a form of fascia release. I thought it was going to be hocus pocus, especially when the doctor didn't spend an ounce of energy on my damaged foot and instead focused on the fascia running down my leg and to/from a multiple-surgeried knee. Within two weeks I was running again, no surgery ever.

I've been thinking about this lately again because I've had a fair amount of hip pain in the same leg and have been worrying it's mets. Unlike in your case, zsaazsa, mine is worse at night when I try to sleep on that side, but also noticeable when I hike uphill. The pain for me is on the outside of my hip and I think it may be my trochanter -- I have a long history of IT band problems in that same leg, which the release work helped tremendously. I've been feeling like all my tendons are really tight all the time in recent months (arms, legs, feet, hands), wondering whether the AI I'm on might behind it. It's odd.

My next PET scan is in January so I'm kind of sitting on this until I see what it shows. I know you'd like to avoid a scan but agree with MoeKay that sometimes it's what we really need to get to the bottom of something. Please keep us posted about what you find -- keeping you in my thoughts.

zsazsa, I certainly hope you don't end up having metastasis to your hip or anywhere else.  I'd just like to clarify that the CT that did not show the pelvic mass was four years before the MRI that identified it.  The PET/CT scan they did subsequently that identified the lung mets also showed the pelvic mass and hip lesion.

If I miight ask, what blood markers would go up with a bone met?   I've never had a CA-125 and I don't remember them mentioning other markers that would indicate bone mets.  Thanks, and good luck!

zsazsa1 said:

Alk Phos, LDH, Calcium.  They

Alk Phos, LDH, Calcium.  They all have to do with bone remodeling, which happens with a metastasis to bone.  They've all been normal for me thus far. 

It seems so strange that you could possibly have had a bone met causing the hip pain four years beforehand.  How are you doing now on the Femara?

Well, I would have to go back and check for sure, but I think those were normal.  However - and I don't know how this works - the metastasis was a pelvic mass that invaded the bone, not a metastasis originating in the bone. Maybe that would have a different impact on the labs.  All I can figure is that the original pain was arthritis or other orthopedic problem, so we all attributed the subsequent pain to that.  It wasn't generally very bad so it was easy to write it off.

Guess I should go update my bio here.  Summer of 2019 the CT scan showed possible disease progression.  Insurance wouldn't allow a PET.  They sent me for evaluation for the clinical trial of Keytruda/Lenvima, but about the time they said I probably wouldn't qualify, it was approved for clinical use. At that point they recommended switching to Megace and holding the Keytruda/Lenvima in reserve for future needs.  As of my last CT last summer I still have stable disease, or chronic metastasis.  Next scan coming up next month which I'm trying not to think about yet.

Long story short, I guess I'm doing okay, at least until next month.  ;-)

Hi ZsaZsa

I too have been having a lo to left back/hip pain and pain on the outside of my left thigh.   I was concerned because I ended up with a fractured right humerus a year ago just leaning on my arm.   I explained this to the doctor who once again did a Bone Scan.   It did not show any bone mets.  The bone scan revealed however an unusually large left L5 transverse process and the left side of the sacrum which is why they believe there was an uptake of the tracer.  Of course, I am still concerned so I will just keep an eye on it.   It also said I have gout and other degenerative things. (Thoracic Spine, feet)   

Recently, I have been having stomach problems and my recent CT indicates some type of inflammation at my ceccum.   See my doctor on the 15th.