PAIN and clean PET scan - now what?

Esmerelda · February 2014

hi ladies,

I've been hesitating to write because many of you talked me off a cliff last week (baby in NICU, awaiting PET results and drowning!), but I have been experiencing a lot of pain and feel so discouraged. So I'm returning to you all for some wisdom, guidance - whatever you've got!

A week ago Friday I received good news over the phone from my onc that my PET scan was "fine." This came after blood work that week which was all within the normal ranges (this was the first time we've ever done blood work, FYI). We did these tests because I have been having growing left hip/groin pain since December. Our newborn baby was born at 30 weeks gestational age, by our niece (who is our gestational carrier) on January 10th. So, to say that there has been stress is an understatement!

If we back up, I was diagnosed almost two years ago (stats in signature), and have had two clean bone scans, a clean x-ray, a clean CT scan all within the first year and half after diagnosis... And now, the clean PET. All of these were done after my urging due to left hip pain, left rib pain, and left scapula pain. (I try to remind myself of all of these outcomes when the anxiety is out of control...but my pain is increasing!)

When my onc gave me the PET results on Friday, that were "fine," he then asked how my hip pain was. I told him it was bad. He then said... Lets re-scan in 3 months. (???) I asked him doesn't it make more sense to send me to an orthopedic surgeon and do an MRI? And he didn't really answer this... I then asked him whether he expects to find cancer through a PET in 3 months (because, what?! Does he think it is HIDING?) and he said, "it would be highly unlikely." He also said the could see some sort of possible "congenital" issue in hip...(honestly, at this point, my mind was in a fog, having gone from enormous relief to confused and scared in about 30 seconds...)

I struggled with what felt like "mixed" news all weekend and finally left a message with my nurse practitioner this past Monday questioning the choice of scan... It's been a week and I'm STILL waiting to hear from them. (I will call and harass tomorrow.)

My mind races with my pain... Could it be that I had a FALSE NEGATIVE PET? How likely is this? I keep asking myself what are the odds of having totally normal blood work AND and false negative PET scan? Like, really low, right???

My pain is bad: left hip is constant, yesterday my left knee starting hurting with a sharp, burning sensation whenever I would bend it (this is new), and then of course there is the subtle left rib, sternum and upper vertebra aches... This sounds really bad, right?

When I consider my scans, I think... Could the pain be from the tamoxifen? Could it be this random and supposed "congenital" issue? (what does that even mean?)

Incidentally, I have been taking 1000mgs of Alleve with little to no effect for the last two weeks. That worries me as well...

Any words of advice or support would be so welcome! Thank you so much.

Solen · February 2014

I have had hip pain, blamed it on growing old! I have done two things that have helped it tremendously.

1, cut out gluten from my diet (can, for some people cause inflammation and joint pain)

2 Pilates. I swear by it for my joints, muscles, range of motion issues.

If you doctor mentioned a congenital issue, I would go to an ortho dr and get MRI and see what is up first. And sometimes physical therapy helps. My hip pain was unrelated to cancer, I have a 12 year old and am 54. my life runs at supersonic speed. I think I push myself hard, but with the two changes above I have found relief without pain meds. Everyone is different, but I would start by seeing ortho and feel good that my pet was clear and it si probably something else causing you pain.

And congrats on your newborn!!!!

Esmerelda · February 2014

Thank you, Solen. It is so good to hear of others who have had similar experiences and have had good outcomes! I just went back to my accuouncturist last week and have started manual massage, twice a week. I also started back in therapy and plan to inquire with my onc about anxiety meds (if they ever call me back!) I did not think about gluten and I have been totally sedentary for several weeks. I love Pilates and will definitely consider giving it a go again. Thank you for sharing what's worked for you. It is so helpful!

pajim · February 2014

I wonder if it's stress? If you have tightened up the muscles in your back to the extent they are pressing on various nerves, could certainly cause shooting pains down your leg, hip pointers, etc.

Have you had problems with back/leg pain before? Massage, stretching, hot tubs, etc. might help. Anything that can help you relax. I'd guess you aren't getting any exercise with all this stess.

Esmerelda · February 2014

no, definitely have not been getting any exercise these days. Of course the stress has been crazy. When I was diagnosed in March of 2012, I complained of left hip pain and had a clean bone scan and X-ray. I was told at that time there was a "lesion" there but that it was not cancer... Ok, so what is it? And what is a congenital issue?

I'd like to go with the thought that if this pain was there two years ago (albeit on and off then, but constant now) and all tests have come back clean since then - then it is most certainly something but NOT cancer, right? That's rational, yes?

Esmerelda · February 2014

bump... Anyone have words of support regarding the accuracy of a PET? Or whether this could possibly be from tamoxifen? And what exactly is a congenital condition in my hip?? Thank you!

encyclias · February 2014

Esmeralda, you really need to see an orthopedist since bones and joints are their specialty. Your family physician can make an appointment for you.

Hope you get some relief.

Carol

Esmerelda · February 2014

Thank you, encyclias. I agree. My family practitioner recently closed his practice, so I am currently without one. Hoping my onc will refer me. I will be bugging them again today!

J9W · February 2014

Esmerelda, the tamoxifen gave me horrible joint and bone pain. I quit taking it and a year later most of it was gone. Read the side effects for T - my doc kept telling me that it couldn't possibly be from that drug but I didn't agree and so quit. Before taking it, I ran a few days a week, rode my bicycle to work a few days a week, and did yoga a lot but on that drug, I could hardly move. Maybe they can switch you to a different one? Good luck finding answers and great news that your tests are coming back clean. (BTW, I did all those tests too when I was hurting - everything came back good too). Janine

Solen · February 2014

Congenital means something you were 'born with"

For example, my husband's rib cage has a hole in it at the sternum, as if the bones didn't finish growing in that spot. It is a congenital "deformity" of sorts, yet it causes him no problems because of it's location, just looks a little odd!

So you may have something that an orthopedic doctor can explain to you. He may tell you to do PT or something depending on what it is. Most of us have some congenital abnormalities to our skeletal system, be it one leg longer than the other, and other things that don't bother us ever, or start to bother us as we get older.

Yoga is also good to stretch the hip muscles, some of us hold our tension there.

So I would got to dr first and talk to him about what to do. Be aware that if you go to orthopedic surgeon, they may suggest surgery first, some are very quick to jump to it, others are more conservative and will send you for physical therapy. (I had a "frozen shoulder, dr sent me for physical therapy to "free" it, it was on y cancer side so of course my first thought was............LOL! but it took awhile to get it back to functioning) That is why I am so set on doing pilates, it is like physical therapy for my whole body. But as with all exercise, start slow and carefully if you have been inactive, and talk to dr first!

Good luck, I know how much chronic pain is..........well a PAIN!

Lojo · February 2014

Hi - I don't have any answers, but I was curious about the false negative rate of PET scans. Here is an article discussing it

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC266757...

It looks like most of the false negatives come from really small tumors <1cm and ones that have low metabolic activity. It dosen't post the rates of false negatives, though.

As to hip pain -- yours sounds similar to my experience. In my early 30s after my first child was born I ended up with excruciating hip pain - mostly on one side, for several months. Hurt to lie on my side in the bed, hurt to walk, etc. Went to the orthopedist and he took a plain old x-ray, which showed some arthritic degeneration which the doctor diagnosed as bursitis. (The x-ray revealed something on my ovary too, which triggered an MRI and laproscopic surgery, all for a benign cyst that had resolved itself by the time they got in there. Oh well).

Anyway, the bursitis. I had always been very active pre-pregnancy, but after kid#1 was born, I struggled to lose the baby weight, and at about 1 yr postpartum was still about 10-15lbs above my pre-preg weight. And very inactive. All the sitting while nursing, plus less activity that comes with a newborn. The doc was shocked at the atrophy in my quadriceps. He offered to do a cortisone shot, but strongly reccomended I tough it out with physical therapy first. PT mostly consisted of stationary bike riding to strengthen my quads, lateral flexibility / strength building (stand on a giant rubber band, and lift one leg sideways with tension) plus some sort of electro stimulation to my hip (felt weird but good). I have no idea if what you're experiencing is bursitis, but the symptoms sound familiar, and it hurt a lot and OTC pain killers did nothing for it. I lost 10 lbs, kept my strength in my quads through biking and yoga (and have continued to 10 yrs on) and it has not come back.

pajim · February 2014

Esmerelda, first thing is that if you're in pain even after 1000 of Aleve, you need better pain control. Are you taking the Aleve regularly? By which I mean 800 every 6 hours? (That's what it would be if t'were Advil -- so don't exceed the recommended daily dose).

It takes a while for the pain meds to work. Take them without fail and they will work -- needs a day or two. I know whereof I speak -- I had back surgery and wanted to get off oxy so I could drive. Advil on it's own didn't work, but taking it every 6 hours did the job about 3 days later.

If you do a search here on the boards, there are several good threads with tips for pain control.

Next, PETs only pick up tumors of a certain size. They don't pick up micrometasases. BUT. If you had a tumor big enough to cause this kind of pain, the PET would find it. Ergo, no cancer. Definitely an orthopedic or inflammatory problem.

Your onc may not be able to help. You need a good GP or an orthopedist.

Lastly, I've heard of women who have joint pain with tamoxifen. Don't stop taking it without talking with your onc, but maybe they could switch you for a while? If you took Lupron you could try one of the aromatase inhibitors.

I hope things calm down soon.

Lojo · February 2014

Esmerelda - I agree with pajim, don't stop the tamox without your onc's knowledge. You need to get to a doctor who has experience with orthopedic issuse - the oncologists don't. I'm not sure they really even "see" arthritis issues. I also just thought of one other thing. Do you have scoliosis (even mildly?). I have mild scoliosis and have noticed since my MX that I get postural pain, which includes some in my scapula. My orthoped when he diagnosed the bursitis said it was likely due to congential issues like the scoliosis, which means I'm not entirely even and can put strange pressure on my hips.

In addition to pain meds, have you taken any anti-anxiety meds? They might help, and I know anxiety can be a nasty feedback loop with pain.

Esmerelda · February 2014

thank you for the responses! So much wisdom and experience here! I won't stopping taking the Tamoxifen. I'm so paranoid of recurrence, I think I'd rather be in pain from T (if that is what's causing it) then quitting cold turkey!

Pajim and Lojo, thank you for the perspective regarding the PET. I was hoping someone more experienced then me would chime in and say something along the lines of what you've said - if it was mets, the pain I'm experiencing would certainly show on a PET (because it would need to be large-ish to cause pain...) and so TRUST THE PET.

Pajim, I am currently taking 500mg of naproxen twice a day. I think it's been about two weeks thus far, and I honestly can't tell if it's doing a darn thing - but I'm afraid to quit just in case it is!

I do have slight scoliosis as well... Hmmm...

I will be hearing from nurse practitioner tomorrow (they were in clinic all day today, but left me a message), and I'm going to ask for the following:

- a referral for a PT

- a referral to see an orthopedic doc

- a prescription for an anti-anxiety/anti-depressant

- I'm also going to talk to them about my pain (what more can be done?) and ask whether they believe Tamoxifen could be the culprit... I'm curious to know whether Tamoxifen can negatively effect pre-existing "degenerative" issues (I.e. this supposed congenital issue in my hip - could Tamoxifen have made it worse? I seem to remember reading that Tamoxifen does not positively impact pre-menopausal women's bones, like it does for POST-meno gals' and in fact it can have a bad effect on pre-meno gals. Does anyone else remember reading anything like this?)

And YES to getting back to Pilates, yoga and swimming... I HAVE to prioritize this. My life is crazy right now with a 5 year old at home and a preemie baby one hour away (whom I drive to see 6/7 days a week) - but it doesn't matter, I know my inactivity is NOT GOOD.

Solen · February 2014

Yes, you have your hands full!

Before I started pilates, I would do a 20 min yoga routine first thing in the morning, VERY gentle stretches! This was helpful for my hips as well . It doesn't need to take a ton of time, and once a PT shows you what exercises/ stretches help your particular situation, you can just do a few minutes here or there. I roped my kiddo into yoga some and now we use deep pilates breathing to stay calm.

Having a preemie is a stressful situation, and having her so far away is also, so give yourself a break on all things house cleaning laundry, dinner. Make it easy on yourself and don't worry about the little stuff.

Are you going to be able to bring your baby home soon?

Esmerelda · February 2014

Solen, thank you for the encouragement! Unfortunately our baby will not be coming home soon. She has three birth defects that must be surgically corrected (esophagus, spine, and colon) - but she needs to be 8 pounds before they can do it, and she's only 4. Thankfully, once these issues are addressed she will be a healthy and "normal" baby!

I saw my PET results today and spoke with my nurse practitioner. She agrees that I should get to an orthopedic doc and get an MRI. And since the hip issue was seen as a 2 cm benign lesion in an X-ray two years ago (and since I've had clean bone scans, CT scan and PET since then...) she does not at all believe this is cancer... Here is what the radiologist's report said:

Osseous structures: Physiologic FDG uptake within the osseous structures. There is a well corticated, lucent lesion in the left femoral head without increased FDG uptake.

IMPRESSION(S):

1. No metabolic evidence of active neoplasm.

2. Lucent lesion in the left femoral head is likely benign given the lack of increased FDG uptake. Radiographic follow up is suggested to ensure stability.

Does anyone want to help interpret these findings for me? Anyone have any experience with this - a "Lucent lesion." Could this be arthritis? Bursitis? I still feel sort of stumped. I'm only 40, and it doesn't feel like I should be falling apart like this, though I did get cancer, soooo... Heh.

I REALLY value you sharing your knowledge, ladies. Thank you again!!!

Esmerelda · February 2014

bump. Thank you!

Lojo · February 2014

Hmm. Never heard the term lucent lesion before. Found this on investigation

http://www.merckmanuals.com/professional/musculoskeletal_and_connective_tissue_disorders/tumors_of_bones_and_joints/benign_bone_tumors.html

it is still pretty dense, and I can't make much of it, but if you've got something (benign) pushing on your bursa, it can cause pain. Good luck with the ortho.

Esmerelda · February 2014

thanks, logo. I saw that too - informative AND confusing. I'm REALLY trying to trust the outcomes of my scans - even going back to my diagnosis when the lesion was first seen, but for my PAIN! Ugh!

What are the odds of an X-ray, 2 bone scans, a CT scan (all taken betwwen 1-2 years ago), and now tumor markers and a PET/CT Scan ALL indicating nothing but a BENIGN lucent lesion - being wrong (being cancer?)... Like, incredibly low, right?? But this pain is unrelenting.

PAIN and clean PET scan - now what?

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