I need hip surgery which STOPS my chemo!

[Chelee]

This is just too much! It's bad enough I recurred...then thanks to this HMO crap I had to wait forever it seems for my two 2nd opinions. I was suppose to be starting my treatment this coming Tuesday. I get a call today (Saturday) that my rt femur with the bone mets could fracture & needs fixed before I start any chemo. That's more time for my cancer to spread!
It's been recommended several times to MRI my hips to rule out mets long before I recurred...but they always said it was my bursitis or something else. This really upsets me to no end...I could of had this femur fixed while I was NED for the last 3 plus yrs. It's bad enough I had to fight to get the MRI done. And I believe she ONLY OK'd it because she knew I was seeing Dr. Slamon.

Now they (HMO/Doctors) will try to delay me getting this hip fixed while my I have no treatment expect Herceptin. I don't even know how bad my femur is? If the bone is destroyed from cancer...how can they fix it. My Mother went thru two hip surgeries and it was a long recovery. So how am I going to fight my recurrence now? I am beyond stressed & feel like I have no chance at all.

Chelee

[Jackie07]

Oh Chelee,

How disheartening! 'When it rains, it pours!' But, but at least everything has a remedy. Come to the board anytime you feel stressed. Even if we can't help, we are lending our ears.

Sending prayers and good vibes your way.

[Midwest Alice]

What? I am so sorry you are going through this. Did they say how soon can you get the femur fixed? I am praying for you. You will make it through this and we are all here with you.

[Cal-Gal]

Dear Chelee-
I am so sorry-

All I can offer is positive thoughts and prayers to get you through this-

[Midwest Alice]

Chelle,

What were your symptoms with your hips? Were they kind of frozen? No rotation?

[Rich66]

From a previous post
"I also have questions about this increased activity in hip area...that showed up on baseline 3 yrs & 8 months ago after first cycle of TCH but they weren't worried about that either since I do have problems with scoliosis and both hips. (I have brusitis in both) How do I know for sure it's really mets?"

Man..difficult issues cropping up. What test determined bone mets? Did other docs review that information?
Probably should hold off on more Zometa until it's resolved..if it's a bone issue requiring surgery. How long of a delay are they talking about?
If you have to delay other treatment through surgery and recovery, maybe Lapatinib or some bone neutral Endocrine therapy could be added. Tamoxifen is thought to have more than just ER+ effects...not sure if it has effects on bones like the Aromatase inhibitors. I know radiation is often used on bone mets but maybe not applicable to what you have going.

[Chelee]

Alice I have always complained about hip pain since day one. But prior to my dx of bc I was seeing a neurologist and he dx me with the bursitis in both hips which can be very painful. So my onc brushed it off as just that. Plus with the scoliosis there has been more wear & tear on the right side which is the hip with the mets to femur. My biggest symptom was pain...and off and on the bottom of my foot felt numb..it would come and go. But the last 5 months or so my foot & ankle has been swelling and painful. Since being told I had bone mets to hip I asked if that was causing my foot to swell. She just said "I don't know". (She's a big help.) Obviously that is what's causing the foot to swell. But I've been very active, and range of motion was good and no problems getting around. Some days it didn't even hurt. I'm actually surprised they say the right femur...because the left one is killing me all the time and it has numbness and tingling. I hope that one isn't ready to fracture too? I better see if the MRI did both sides?

Chelee

[Cannon]

Chelee,

I am so angry on your behalf. I am not one to encourage lawsuits, but these doctors (your onc in particular) seem to have DONE YOU WRONG.

You have been fighting so hard just to get proper care - it's not fair. Is there anyone, either friend or social services, who can serve as an advocate for you? I wish you had someone to fight the system, so you could just concentrate on getting better.

Wishing you all the best,
Rebecca

[Chelee]

Rich, I had questions too because of my other medical problems. I had my onc run a PET/CT which showed increased uptake in my right hip...so she sent me to have a X-ray of that hip. She said that verified it was bone mets. I was NOT happy with a plain old X-ray especially with my scoliosis and dx of bursitis. She asked what I expected her to do? I said run a bone scan or MRI like most onc's would do. I just had the MRI of femur and ilium last Thursday...so it has to be bad if she is calling me on a Saturday. (She never calls me.)

I didn't get to talk to my onc today since she called early and left it on my machine. So I don't know how much delay there will be? That is a BIG concern to me. Dr. Slamon wanted me started on something soon. So did my onc...and now this. I know my Mother had at two seperate times rods put in her hips and each time it was a 3 month recovery...so I am beyond stressed. I might try calling Dr. Slamons office and see what he suggest? I can't imagine going another 3 months or more with nothing. I do know the Herceptin loading dose alone did drop my markers...so if I could add tykerk or something...that might work? What a nightmare.

Chelee

[Midwest Alice]

Thanks for answering my question. I also have back scoliosis but to a lesser degree than yours. My left leg is shorter so over the past 5years I have been having my left shoe built up a half an inch. My right hip I think is worse. I am very active walk alot the trouble is like when I climb up into a van. I have little rotation in my hips. Maybe started in the summer. Nov. 15 I will see my back Dr for a follow up no my progress with the PT. I had a pet/ct last week. I would think my hips may light up showing some kind of something.
Its a good idea to check to see that they did MRI both hips. Do some people have both hips done at the same time? My Dr. told me if cancer goes to the hip a replacement does work. It works for the femur too. This is good. Do you take any meds to help with stress? I do and if you aren't right now, you may want to think about taking something to help you through this rough patch. Hugs

[ElaineM]

This is a bummer !! I am upset for you !! They should have taken care of your hips sooner than this !!
I would tell them to "bring on the treatment" while I am in the hospital recovering from the surgery. How do I know this? I did that in 2004. I had an accident and smashed my right hip, so bad I needed a total hip replacement. I got done with the hip surgery at 12:30am on a Wednesday morning and had my treatment as usual on that Friday afternoon. I figured I was in bed and could rest after my treatment anyway. It is not like I would have to take a shower, get dressed and go anywhere. The oncologist, and a nurse showed up in my hospital room with an I. V. pole and my treatment as I requested that Friday. The following 3 or 4 Fridays they put me in a wheelchair and in a van and took me from the rehab place to the oncologist's office for my treatment every Friday. Everything worked out just fine.
Good luck. I have my fingers crossed for you. Keep going no matter what.

[Chelee]

Alice, I would like to think they MRI'd both sides? It took 2 hrs so I hope so...especially since my left one hurts & had numbness and tingling It might of been just the right side of femur & ilium though? I'll sure find out Monday!

Elaine how did your body have a chance to heal from the hip surgery when you started on chemo right away? Chemo destroys all the good cells in the body. I would be at high risk for infection also...but if its possible to do chemo right after surgery I'm sure up for it. Like you said...since I would be stuck in bed anyway...good time to do it. I'm really concerned about waiting any longer to start chemo...it's been too long as is! I'll certainly discuss this with my onc...I just assumed it would not be possible. Her message said something about "pins & screws" versas an entire hip replacement. Hopefully that's a faster recovery and will work as well? (I sure pray the Herceptin is doing it's job till I get on something.)

Chelee

[Rich66]

For what it's worth, my 76 y/o Dad had a broken hip repair a couple months ago. What I got out of it was that a partial or full hip replacement could get you moving almost immediately, albeit with ongoing restrictions in angle of motion. I think they rely more on adhesives and implanted hardware than typical healing process.
The pins and screws approach requires weeks of keeping weight off the leg as the bone fuses together. The benefit seems to be that if it works out, there is less (no?) risk of dislocation from motion angles.
So..off the top of my head, I wonder if the pins and screws approach is more susceptible to interference from chemo and bisphosphonates etc. Might be worth discussing this with your doc. Not sure if this article is helpful to you but...

1: Ortop Traumatol Rehabil. 2009 May-Jun;11(3):233-41.
Arthroplasty versus Internal Fixation of Femoral Neck Fractures: A Clinical Decision Analysis.

Aleem IS, Karanicolas PJ, Bhandari M.
Departments of Surgery, McMaster University, Hamilton, Ontario, Canada and University of Western Ontario, London, Ontario, Canada.
Background: The optimal surgical management of displaced femoral neck fractures in the elderly remains controversial. Treatment alternatives include arthroplasty and internal fixation. Options for arthroplasty include total hip arthroplasty and hemiarthroplasty, whereas options for internal fixation include multiple screws and sliding hip screws. We sought to compare arthroplasty and internal fixation alternatives and determine the key factors influencing final outcomes using a clinical decision analysis. Methods: We constructed a decision analytic model representing potential outcomes after arthroplasty and internal fixation alternatives. Probabilities of events following each procedure were systematically derived from a literature review. Relative outcome preferences were estimated using health utility questionnaires with surgeons and lay persons. Sensitivity analyses determined threshold values that would alter the preferred decision. Results: In the arthroplasty comparison, patients treated with total hip arthroplasty achieved higher expected utility values than patients treated with hemiarthroplasty (0.80 versus 0.74). In the internal fixation analysis, sliding hip screw fixation yielded higher expected utility values than multiple screws (0.76 versus 0.73). Overall, total hip arthroplasty achieved higher expected utility values than either approach to internal fixation. The superiority of arthroplasty over internal fixation was maintained over a wide range of probabilities and utilities. Conclusions: When outcomes and their values are considered in a systematic manner, arthroplasty results in better patient outcomes when compared to internal fixation in the management of displaced hip fractures in the elderly.
PMID: 19620741 [PubMed - in process]

[Lani]

Rich I don't think Chelee mentioned anywhere where in her femur her met is/where her bone is weak.

The treatment of a femoral head met can be different than a femoral neck met which can be different than an intertrochanteric or subtrochanteric met.

University teaching hospitals usually have orthopaedic surgeons who specialize in orthopaedic oncology--and there are FAR more metastatic bone tumors than primary bone tumors.

Since MRIs show soft tissue and marrow better than CTs and CTs show bony details better than soft tissue and marrow, it is possible that they may want to supplement the MRI with other studies (unless the CT done with the PET/CT and MRI together show enough to convince them of the right course to take).

As I understand it, since the advent of bisphosphonates there are a lot less impending fractures for orthopaedic surgeons to fix before they break.

Let's hope Chelee's HMO will let her see an orthopaedic surgeon with some expertise in which of these mets needs surgery and what type is best.

Best of luck Chelee!

[Rich66]

Yeah..I don't have no honest ortho-learnin'. (Breaking my ankle is hardly a qualification) But methinks it a good idea to ask whether there are different approaches to fixing the bone in case there are pros and cons Chelee wants to weigh. Sounds like communication and presenting all options hasn't been her team's strong suit.

[ElaineM]

Hi,
I don't know how I did it either, except to say when my mind is made up about something nothing stops me.
I had a total hip replacement and still had my normal weekly treatments plus the usual physical therapy after the hip surgery. I ate healthy and took all my usual medications and supplements after the hip surgery. The orthopedic surgeon did not want me to have my treatment for a couple months, because he thought the hip would not heal properly. He also believed the cancer would spread much faster after the hip surgery, so why bother with treatment, but I told the oncologist to save my life.I also told him here was no sense in having a great hip if I did not survive cancer. That was and is my priority. He told me he would go along with that and have a talk with the orthopedic surgeon. Xrays and scans afterwards all showed the hip replacement healed well. I see the orthopedic surgeon from time to time. I always remind him that my hip is okay and the cancer did not spread any further because of the hip surgery. Smile.

[Mary Jo]

Hi Chelee...

I cannot imagine how this all must be for you. I truly sorry. I am praying it will all work out for you.

Love......Mary Jo

[Lien]

Oh Chelee, this is just so unfair! Do you still trust your onc? It seems several things have gone wrong over the past few years, and perhaps you need another doc. You need to feel safe with your doc in the coming years. It seems to me that you are not getting answers to some very pertinent questions. Do you have any support from people near you? Is there anyone who could sort this mess for you? Or at least help you do it?

I find the fact that your TM's dropped from just Herceptin very reassuring. It seems it's doing its trick once again. I would ring dr. S's office and explain about your new diagnosis. Ask them if this changes your plan. Would they suggest the same treatment plan, or do they think something else would be better.

I know you are panicky right now, but a few days of phoning and talking to docs won't change the outcome much. You are already seeing improvement from your vit H. Take deep breaths and ask questions that you need to get answered before you can decide on anything. In the mean time: we are here!

Hugs

Jacqueline

[Chelee]

I'm trying to get in touch with Dr. Slamon's office since they said if I could not get into the TDM1 trial...their next choice for me would be to do Herceptin, Tykerb & Zometa. Which my onc & the COH onc both disagreed with?? They seem to think since there is no chemo in that combo it will not be effective? Herceptin alone has dropped my TM'ers...so adding Tykerb just might do it for me...and my thinking is I could still do that while dealing with this femur problem.

As to where the met is on the femur...my onc's message says the tumor is at the neck of the femur and that it needs to be supported with a pin in that area. I think I'll leave this decision up to the orthopedic surgeon and NOT my onc! Plus I don't trust her choice of orthopedic surgeons....she will find me the youngest newest guy on the block that needs patients. It looks like the sister hospital to mine is listed as one of the top hospitals in the nation for Orthopedic care for 3 yrs in a row. So I'm going to see if there is some way I can get my HMO to agree for me to be seen there?

Chelee

[Midwest Alice]

Bless your heart! You are my Hero.