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

zsazsa1
Posts: 557
Joined: Oct 2018

I'm a little bit worried, and hoping I might get some feedback.  I've been having right sided hip pain for perhaps three months.  It's intermittent - occasionally I'll have a day or two without it.  It is not present when I'm lying or sitting down.  Starts up about 15 minutes after I start walking around.  It is sharp, twingy, seems exacerbated by standing on the right leg alone, or when I step up on the right leg.  The pain feels as if it is in the socket of the hip (meaning it's in the pelvis, not the femur).  It began in the right groin, now can sometimes move around to the lower posterior buttock.  It's always from use - never at rest.  I suspect that it is ligamentous in nature, since putting stress on the joint by carrying weight, or stepping up, or standing on just the right leg, or raising my left leg while sitting can all cause the pain - but never consistently.  The pain is not the problem - I can totally live with this, especially since it seems to be relieved by walking around.  I can go for an hour long walk in the park.  What has me worried is that it is a pelvic recurrence of UPSC/clear cell.  I had surgery in Oct 2018, was stage 1 but had isolated tumor cells in one sentinel node.  I completed carbo/taxol/trastuzumab, plus pelvic IMRT radiation.  Ca125 has been stable since then at around 12-13 range.  Last calcium was in September, normal.  I'm having bloodwork again next week.

I had a normal MRI in September, and just had a normal hip x-ray.  Not losing weight, Ca-125 not climbing.  I am heavier than I've ever been in my life - about 176 lbs at 5 ft 6 in.  Bloodwork is essentially normal, although my uric acid was up a bit, at 7.4.  My indolent splenic lymphoma has responded well to rituximab antibody treatment, so I don't think it has anything to do with that.

My local uterine cancer doc, who does GYN and breast, says she feels that if it were a bone met, I'd have pain at night.  Haven't yet been able to get in with the lymphoma doc.  The rad onc says he doesn't think that it could be a sequela of the pelvic radiation.

If I can possibly avoid the radiation of another CT, PET/CT, or bone scan, I'd like to.

Has anyone experienced a bone met?  From what I read online, it can be intermittent like this, and relieved by exercise, but it just seems so odd that I have NO pain at rest, wake up and walk around without any pain for a bit, and then again it's relieved by rest, or by walking the dog.  And just last week, I think I had three days without any pain.  Just odd.

Frances081920
Posts: 28
Joined: Aug 2020

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

zsazsa1
Posts: 557
Joined: Oct 2018

The MRI did cover that area, and I spoke with tech and radiologist - they said that the area was imaged, and they saw nothing.  Alk phos was done last Sept, will be done again next week, I'll make sure.  

oldbeauty
Posts: 317
Joined: May 2012

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

zsazsa1
Posts: 557
Joined: Oct 2018

Old Beauty, you are an inspiration.  Fortunately, the pain is not too bad, and isn't present at rest. My major concern is whether it's a sign of recurrence.  I'll have to look up myofascial release therapy.

oldbeauty
Posts: 317
Joined: May 2012

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

 

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Tamlen
Posts: 319
Joined: Jan 2018

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.

Fridays Child
Posts: 214
Joined: Jul 2019

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!

BluebirdOne's picture
BluebirdOne
Posts: 454
Joined: Jul 2018

but deeper, near the bone socket as you describe. I also have had arthritis for many years, spine, hands, wrists, knee, shoulder. This was last December, about a year ago but had started as a small pain and gradually increased.  The pain was slightly there during the day while moving around, but mostly was at night and was enough to keep me awake. I went for my normal oncology checkup a few months later (the pain was never acute) they wanted to rule out a recurrence, but thought the location was odd. I had a CT scan, showed it was not a recurrence, most likely arthritis. CA125 remains at 6, not changing in two years. I believe it was caused by walking and hiking, which I was gradually trying to increase. Once I switched to bicycle riding, the pain has gone away, so I that probably was it. That is what is so tricky about this cancer, is that without full blown scans, MRI, CT, which no one wants, we are always at odds with trying to figure out our aches and pains. Good luck to you zsazsa! 

xxoo

Denise 

MoeKay
Posts: 349
Joined: Feb 2004

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!

zsazsa1
Posts: 557
Joined: Oct 2018

Thank you all for your replies.  I spoke with the lymphoma doc yesterday.  She feels it's definitely not from the indolent lymphoma.  She suggested PT, and it occurred to me that a good PT who does a lot of hip work might be able to test the various muscle/tendon groups and be able to isolate which is causing the pain (which is NEVER there at night, and only intermittently during the day, relieved by both rest AND by brisk walking, so weird).  So I'm going to go to see PT next week.  Meanwhile, on Monday I have the last maintenance rituximab infusion for the splenic lymphoma, so I'll have bloodwork, which will include the markers that would go up with a bone met, and a Ca-125.    I think that because there is never any pain at night, I will try to stop worrying.  I'm not going to push for another scan right now, since I must have had the pain for a few weeks before that MRI at the end of September.  I recall making sure the tech imaged that area, and discussed it with the radiologist who read it - who said it had been imaged, and that he saw absolutely nothing.  The party line is that CT is better than MRI for imaging bone.

Friday, thank you for sharing with me what you're going through, especially the information that the met showed up in the bone on MRI, and not CT.  That's exactly the opposite 

Fridays Child
Posts: 214
Joined: Jul 2019

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
Posts: 557
Joined: Oct 2018

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?

Fridays Child
Posts: 214
Joined: Jul 2019

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.  ;-)

 

 

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

ZsaZsa, this is so interesting to me.  I have had low Alk Phos for years now, along with high calcium.  Haven't had LDH tested. The calcium has been attributed to a parathyroid adenoma, as it is accompanied by high pTH and low D, but no one has been able to give me an answer about the low Alk Phos. Would the bone met be indicated by high or low levels on this test?

Similarly, I have had significant hip pain on my right side the past several months.  It happens only when I move my right leg certain ways. I've assumed it was structural, as I have a 20% curve in my spine and that leg is over a cm longer than the other, and I've always had IT band tenderness, long before cancer.  But I'd like to mention this to my onc next visit.

Praying all works out well for you and you get some answers.

zsazsa1
Posts: 557
Joined: Oct 2018

High alk phos would imply bone met, so not to worry.  But your high calcium, and likely parathyroid adenoma, are of concern.  I just re-read your bio, and congrats on NED Oct 2020.  What a ride you've had! 

Are there any plans to have surgery for the parathyroid adenoma?  I was involved in diagnosing this in my husband when we first met (we were 34).  He had it removed - it was an easy, quick recovery.  Oddly, one of his sisters also developed this at about age 50, a very rare occurrence for siblings to both have this, and no other endorine issues.

bluehyacinth
Posts: 50
Joined: Feb 2016

High alk phos is not necessarily indicating mets. First of all it is a high indicator of osteoporosis which radiation and aromatase inhibitors will quickly give us depending on how much radiation of course. I got an extra boat load due to malignant peri-aortic lymphnodes. When noticing the high alk phos. I was quickly diagnosed with osteoporosis.

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

When ZsaZsa posted this I was also having hip pain bilateral intermittent, pain on my iliac crest, and back pain, pain going down the front of my thighs.  I didn't say anything because I was waiting for appointment with my Primary Care to get an order for an MRI.  I had the MRI on Thursday. I got the results today.  I have severe narrowing of foramina bilaterally at L5S1.  I also have torn tendons on bilateral gluteus minimus and medius muscles.  This is a result of physical therapy during COVID.  I was doing PT for back surgery. I quit going in February to protect the people who HAD to go.  I had a list of exercises I was supposed to work up to 20 reps, but I was doing them every day and not every other day.  I had an MRI of the pelvis and it was normal.  Of course I was worried about a recurrence too becuase my symptoms were so strange.  But the Lumbar Spine MRI explains all the pain I was having.   So ZsaZsa, my hip pain was not due to recurrence.  I hope you are continuing with NED.  And congratulations on your son getting into Harvard.  What a happy day!

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Kaleena
Posts: 2064
Joined: Nov 2009

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.

zsazsa1
Posts: 557
Joined: Oct 2018

Kaleena, I am hopeful that it is something benign in the cecum.  It isn't that unusual to have just normal old inflammation there.

I am happy to report that the hip pain seems to have finally gone away, after about 3-4 months.  I guess it was just muscle strain of some sort.  Med onc sent me to Gyn Onc, who did an EXTREMELY thorough internal exam, couldn't feel anything on that side, so between Ca-125 of 12, normal MRI 3 months ago, and normal internal exam, it was determined to be just musculoskeletal.   And then it went away.

Fridays Child
Posts: 214
Joined: Jul 2019

Such great news. Zsazsa! 

 

(Encouraging as I sit here drinking prep for my CT scan this morning.)

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Glad it went away ZsaZsa!   I have my appointment with my surgical onc on Friday, Jan 15th..   I want to ask him too that I had high calcium in my blood.  Also my RBC, Hemocrit and HGB were high, although the ER doctor didn't mention it.  It also said I had immature glandulocytes.   I never had these before in any of my blood tests.   my PCP said it was ok too.   But they don't know my history.   Hopefully, it is nothing.

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Tamlen
Posts: 319
Joined: Jan 2018

I'm glad you had relief in two ways, zsazsa -- good news from the scan and the hip pain resolving. I still have mine but my scan this week was clear and I think mine is mostly joint pain from the AI and tendon problems in that particular leg.

ConnieSW
Posts: 1576
Joined: Jun 2012

But it always drives me crazy not to know what was shat. Guess I am the curious cat. 

zsazsa1
Posts: 557
Joined: Oct 2018

Interesting update.  I had been treated with rituximab, an antibody against B-cells, to kill the lymphoma cells, from about mid-March 2020 until Dec 9th 2020.  Hip strain/pain went away about a month after the final rituximab treatment.  Recently, I saw some conversation on FB among patients who had developed joint pains and tendon strains while on rituximab.  So I suspect that was the cause of it.

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

Thanks for closing the loop on this, zsazsa. This is good information for others who research using this drug.

Tamlen

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