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Pet Scan today- update ...hip fracture- mets confirmed

jen2012
Posts: 1607
Joined: Aug 2012

My husband is still having a lot of pain in his legs - he hasn't been able to walk without a walker in weeks.    All bone biopsies have been negative and the  soft tissue biopsy was negative for cancer but showed that he had myositis ossificans that is causing the pain.  He's been on prednisone and celebrex for weeks now and still can't walk.   The onc is suspicious that there is cancer lurking....so pet scan this afternoon and brain MRI tonight  to see what they can find.  

Prayers and positive thoughts are always appreciated.

Trubrit's picture
Trubrit
Posts: 5218
Joined: Jan 2013

Prayers and healing thoughts are on their way. 

And you know we'll be on pins and needles waiting for your update. 

Blessing to your dear husband.

UncleBuddy
Posts: 1019
Joined: Aug 2013

I'm hoping that everything comes back fine. Let us know how it goes.

Lin

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TheLadySkye
Posts: 195
Joined: Oct 2013

I hope and pray everything will look well on the scans.  

*tight hugs*

janderson1964
Posts: 2215
Joined: Oct 2011

I will definately pray for your husband.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

coming your way, Jen.  And to your DH as well.

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johnnybegood
Posts: 1122
Joined: Oct 2008

with you in my prayers hoping all tests come out good....Godbless...johnnybegood

Chelsea71
Posts: 1170
Joined: Sep 2012

Will be anxiously awaiting the results.  It's time for some answers.

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Annabelle41415
Posts: 6547
Joined: Feb 2009

Prayers are on the way.  Hope that they can find a cure for his discomfort and hoping they can find out some info on the scans. 

Kim

 

jen2012
Posts: 1607
Joined: Aug 2012

Thanks everyone - we cancelled the MRI.  Two outings in one day were too much.  Hopefully we'll get some answers soon.

jen2012
Posts: 1607
Joined: Aug 2012

Well we ended up in ER last night when the pain got so bad that he couldn't move.  Had to call an ambulance and it took them an hour to get him in the ambulance.   He has a fractured hip...where the femur meets the hip.  According to the ortho doc, he has a met there.  The same one that has been biopsied 3 times and been negative.   So I guess bone mets are confirmed.   They still want to do a surgical biopsy to make sure this is a CRC met and not a different kind of cancer  - which they say is unlikely to be a different cancer, but it would change the course of treatment so they want to be sure.  

 

smokeyjoe
Posts: 1428
Joined: Feb 2011

Wow Jen,  so what are they planning on doing for him??    My mother fell recently in front of the nursing station at the nursing home, and she had a fracture in her hip.   The put in a plate with screws and fixed her back up, a far less invasive surgery than hip replacement .    How big is this met, have they given you any details.     

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johnnybegood
Posts: 1122
Joined: Oct 2008

im so sorry for this latest news i hope they  can get him fixed up soon and at least out of pain...Godbless...johnnybegood

jen2012
Posts: 1607
Joined: Aug 2012

According to the ortho resident, there are two options.  If it is a CRC met, then they put a pin in and he could stand on it same night.   She said the pin could spread the cancer, so if it's CRC and already in the system they don't worry about that.  Easy for them to say.   If it was some other early stage cancer, they wouldn't want to spread it, so they would do another procedure - which we didn't get into that.   I'm so confused about it all at this point and hoping the doctors are making the right decisions.  Neither his onc or the ortho onc that she has been discussing his case with are on this weekend, but they have already been in contact with the on call doctors - so stuff is happening behind the scenes, but we don't know all of it yet.  They have not said how big the met was.  I'm kind of surprised they didn't suggest keeping him after the pet scan - they must have seen it and they saw the pain he was in...

UncleBuddy
Posts: 1019
Joined: Aug 2013

We depend on these people for our lives, but sometimes, I just don't know. I hope you are able to speak to his own doctors. Maybe you can have his service call them and ask them to call you at home. You shoud have input directly from them, it will make you feel better. Sit down and write a list of questions you want to ask each of them, then call their service and ask them to call you. I think it will make you feel better. Good luck and I hope he gets the treatment he needs quickly so he'll feel better.

Lin

janderson1964
Posts: 2215
Joined: Oct 2011

I am sorry Jen. That sounds so frustrating.

Chelsea71
Posts: 1170
Joined: Sep 2012

Jen, I think the only thing you can do right now is put your trust in the professionals and hope they know what's best for your husband.  People, both patients and caregivers, who have joined CSN are typically people who want to take an active role in their treatment.  Generally speaking, we want to be informed, do our own research and make our own decisions.  This situation sounds very serious and very complicated.  I would just let the doctors figure out the treatment and hope for the best.  In my own situation, I have spent a lot of time blaming myself for outcomes that could have been different but as time passes I gain perspective and realize that all I could do was follow the advice and recommendations of the professionals.  We aren't doctors (at least most of us aren't) and we just have to put our faith in their hands.  Which is not to suggest that we shouldn't raise hell when necessary.  They need to get this figured out and begin treatment.  I think you and DH will both feel much better once on a solid treatment plan.  Thanks for the update.

 

Chels

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annalexandria
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Joined: Oct 2011

that the person who would have seen the met was the tech, and they, of course, are supposed to pretend they don't know what they're seeing.  I know my scans have sometimes not been read by the radiologist until the next day, if they're busy.  It's ridiculous, though...you'd think even a tech could tell someone else about the situation, but it's the whole "it's above my pay grade" and chain of command mentality that exists in a lot of medical institutions.  It's hard as a patient or caregiver, no matter how much of an advocate you are, to do much about this.  I think you've been doing absolutely everything you could, Jen.  No one could ask for a more dedicated care giver.

My only other thought is that if they put in the pin, you should start him on cimetidine asap, just in case it helps.  What studies there are suggest that it somehow stops cancer cells that have spread from attaching to healthy tissue, and it's just heartburn medication, so it can't hurt to take it for a while.  I did 800 mg a day, split into 2 doses, and you can just buy it OTC.

Loads of hugs and love coming your way.

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Lovekitties
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Joined: Jan 2010

I know how you are feeling...with my sister it finally got to the point where we were going tnsist that she be admitted for pain control even if they didn't know the cause.  As it turned out, the last ER visit was where they could see the fracture in her pelvis and determined it was bone mets from her uterine cancer.

The brain MRI was done to determine if there was a differnt cause for the pain being so bad.  In her case, all was clear there.

The ER doctor said that bone mets can cause pain from pressing on a nerve long before they can be seen on the tests.  Odd I know.

Have they done a bone scan?  I would think they might before a biopsy.  In my sister's case they did neither due because of other indicators making any treatment beyond radiation of questionable use.  And of course radiation does not care what kind of cancer the met is.

Prayers that they can soon get hubby's pain under control and be done with tests and on to treatment.

Hugs for you both.

Marie who loved kitties

bailee2012
Posts: 61
Joined: Jul 2012

So sorry to hear that its a met but happy to know that they finally figured out what the problem is.  atleast now they can try to get him some relief.   its too bad that somethings have to get to a critical point before they are able to figure it out.  Last year my husband was having bleeding at his osteomy and we chased doctors and tests for three months and nobody could figure it out until he bled so much that he had to be life flighted to the hospital and then wow they finally got it.  I was so aggravated cuz I was like we have been tellin u guys this for months but nobody took it serious enough til it got to this point.  Try to hang in there.  Sending prayers up.

rls67
Posts: 127
Joined: Nov 2012

You and your husband have been through so much. I hope he gets some pain relief and some much needed good news soon. 

Trubrit's picture
Trubrit
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Joined: Jan 2013

I am so sorry for this latest development, though it has to be somewhat of a relief to know what the problem is thats causing him so much pain and inability to get up and about. 

You both continue to be in my thoughts and prayers. 

Here's hoping you get some more answers and soon. 

smokeyjoe
Posts: 1428
Joined: Feb 2011

Sheesh,  yes if they did see it on the PET scan and knew about the severe pain  why wouldn't you have heard from someone before you had to make the trip to emerg.     This makes no sense.    Maybe a breakdown in communication between radiology and oncologist is all I can figure.    I just get the impression sometimes that they are all so busy that we get lost in the shuffle.   

Anonymous user (not verified)

that the radiology tech seeing the scan did not call for a radiologist for an urgent interpretation of the fracture.  He should have never been moved from the scanner board until paramedics arrived to immobilize the leg and transfer him to the ED of your hospital.  It borders on negligence which must be proved by 3 conditions: the person knew something was wrong, had a duty to act, and an injury or worsening occurred due to the failure to act.  The fracture could have easily been made worse just by moving him without proper immobilization.

And then for the on call doc not to make an effort to contact your personal oncologist despite him being off that weekend is deplorable to me.  Your personal physicians not only have a vested interest in your health, they should have a vested interest in your relationship. If they could have contacted him/her and he cares, he would have come.

I'm sorry I went off on this, but my thoughts and prayers are for a good outcome.

Dan

  

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wolfen
Posts: 1326
Joined: Apr 2009

My heart breaks for you both. You've already been through so much.

It also makes you wonder who, exactly dropped the ball and why wasn't this discovered sooner? As Chelsea says, don't ever second guess yourself. You have been doing all the right things and you have done the best you know how. I'm just so sorry the medical care has not been better. Been there, done that! I hope his team will become involved ASAP and a course of action will be taken.

You are in my thoughts.

Luv,

Wolfen

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fatbob2010
Posts: 467
Joined: May 2012

Prayers and hugs steaming your way.  Our modern and evolving medical system is seemingly moving care of lovd ones back to the famiy, without education or training :-(

I hope he feels better soon and you can get some rest yourself.

Art

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thingy45
Posts: 633
Joined: Apr 2011

So sorry to read about al the trouble. At least you know now why the severe pain. Let's pray for  pain free days and moving ahead with a treatment.

all is so frustrating, my prayers are definitely with you both.

marjan

jen2012
Posts: 1607
Joined: Aug 2012

Surgery will be sometime tomorrow.  I questioned why we are relying on biopsies and was told that because this is his second cancer, they need to know what they are dealing with.  I guess that makes sense.   Xray today shows he also has a stress fracture on the left femur.   Both have lit up on MRI and the onc said last month that it's really unusual for bone mets to be symmetrical like that and that was another reason, besides negative biopsies, she was questioning it.  

Thank you all for your comments and support.

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devotion10
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It has been months since I have been on the site after my husband passed. I came back and have been reading all the tremendously difficult things that you and your husband have been going through. Sometimes there just are no words for how challenging life can be ... I just wish you peace as you travel this very difficult path.  -- Cynthia

 

jen2012
Posts: 1607
Joined: Aug 2012

Biopsy confirms Mets.  They set the right leg.  They want him to recover a bit before doing the other leg.  Not sure how long before they can start treatment.

herdizziness's picture
herdizziness
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d@mn it, I'm so sorry that it's mets, but glad he is getting the care finally that he needs.

It is amazing what does NOT show up on scans, I've been through that myself lately.  You've done all the right things, unfortunately our medical system isn't infallible, but when they finally catch what is wrong, it's a relief to get it fixed.

I send you both my heart and nothing but good thoughts in a speedy recovery for your husband.

Hugs and Luv,

Winter Marie

Cathleen Mary
Posts: 827
Joined: May 2011

 

Oh, Jen, I am sorry that you are both going through so much once again. This disease is so insidious. Hopefully, now there will be pain relief.....pain is a horrible thing to go thru and to watch.  Know that you are in my heart and prayer.  

Be gentle with yourself.

CM

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

that's tough news to hear for sure.  You have been such a great caregiver throughout this, your husband is lucky to have you.  I hope that your husband is able to get the treatment he needs and soon.  Traci

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YoVita
Posts: 590
Joined: Mar 2010

my prayers and hugs are out to you and your husband.  

jen2012
Posts: 1607
Joined: Aug 2012

Thank you all for your kind words and support.    It's really helpful to "talk" to people who understand.  And not say things like "oh a broken leg - he'll be fine" ....or the opposite with the doom.   People do say strange things.

He's recovering from the first surgery and was moved to a private room on the oncology floor.  Surgical was not used to dealing with the amount of pain meds he's requiring.  We know the oncology nurses anyhow and they are all wonderful - and it's a slow week -only 4 or 5 patients on the floor, so he's had 2 nurses since he's been moved.  Plenty of attention, but they've been sensitive to the fact that he doesn't want to be bugged all day either. 

She did send him yesterday for the brain MRI - I'm not thinking about that, just hoping it's fine.

He will have the 2nd leg set on Tuesday.  Another rod from the knee to the hip.   So Thanksgiving will not be at home   and our youngest is not allowed to visit :(   That's going to be difficult for him.  (though I just got an email from the social worker to see if she can work out an exception for Thanksgiving)  

The oncologist thinks he'll be starting chemo two weeks after the next surgery, but is waiting for approval from the ortho surgical onc.  Folfiri I think.   I assume that avastin will be added after several more weeks.

janderson1964
Posts: 2215
Joined: Oct 2011

I am sorry for what you are both going through. You must be exhausted. The caregiver always seems to get neglected. I hope his mri is clean. I hope the social worker can make arrangements for you youngest to see your husband on thanksgiving. I am sure that will really boost his spirits.

jen2012
Posts: 1607
Joined: Aug 2012

Got the okay on bringing the 2 yr old for Thanksgiving   :-)

janderson1964
Posts: 2215
Joined: Oct 2011

Thars great. I couldn't imagine them not making an exception considering the situation.

Happy thanksgiving

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Sometimes it's the little things in life that have the biggest impact.  I'm so glad to hear two year old gets to come on Thanksgiving.

I think several of us have spent the holidays in the hospital (Christmas for me), what makes it a special day is the family, and the fact he's in the hospital getting the care he needs, and with the youngest coming on Thanksgiving, it will be special for you all.  

Thinking of you both,

Winter Marie

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Glad to hear your child can visit on Thanskgiving!  Hope your husband gets some relief fromt eh pain with setting the second leg.  Happy Thanksgiving!  Traci

Trubrit's picture
Trubrit
Posts: 5218
Joined: Jan 2013

What an ordeal.

Its obviously no fun, but it sounds like he is in excellent hands (yours) and I'm glad that he's getting the right care on an Onc ward. 

It will be a different Thanksgiving for sure (I spent last years Thanksgiving drinking goup and sitting on the loo becasue my bowel resection was the next day), but you have each other and the children.

Blessings and healing thoughts continue your way.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

So sorry all that you and family are going through. At least you got some explanations for all the pain going on and can start working on the fix. I will be thinking about you and your family over the holidays.
Sandy

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