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View Full Version : I need hip surgery which STOPS my chemo!


Chelee
10-24-2009, 04:36 PM
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
10-24-2009, 05:00 PM
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
10-24-2009, 05:31 PM
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
10-24-2009, 05:33 PM
Dear Chelee-
I am so sorry-

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

Midwest Alice
10-24-2009, 05:38 PM
Chelle,

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

Rich66
10-24-2009, 06:15 PM
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
10-24-2009, 06:40 PM
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
10-24-2009, 06:52 PM
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
10-24-2009, 06:56 PM
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
10-24-2009, 07:09 PM
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
10-24-2009, 09:25 PM
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
10-25-2009, 07:16 PM
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
10-25-2009, 09:15 PM
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 (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Aleem%20IS%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Karanicolas PJ (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Karanicolas%20PJ%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Bhandari M (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Bhandari%20M%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus).
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
10-26-2009, 12:32 AM
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
10-26-2009, 12:46 AM
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
10-26-2009, 11:18 AM
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
10-26-2009, 12:20 PM
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
10-26-2009, 12:36 PM
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
10-26-2009, 01:38 PM
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
10-26-2009, 01:47 PM
Bless your heart! You are my Hero.

Lien
10-26-2009, 02:14 PM
Dear Chelee,

Are you sure you want to stay with this onc? I haven't heard you say one positive thing about her. Is it at all possible for you to go somewhere else? Or would your HMO be opposed to that?

I hope you find a good ortho doc soon.

I think you are totally amazing! You are dealing with this crisis despite all the setbacks and you do what needs to be done. You're a champ!

Hugs

Jacqueline

Chelee
10-26-2009, 03:00 PM
Jacqueline, No I do not want to stay with this onc. It is a very longggg story. I have stepped on so many toes at this place due to my sub-standard care that I am not allowed to switch onc. No other onc at this place will see me. It got real messy when I filed a grievance with my HMO...turned into a nightmare.

I contacted every group, association, advocates, Dept of Managed care, several legal groups and even as far as an attorney. Depending on who I talked to things would improve for a short time and then my onc would go back to her old ways. All I can do at this point is wait for open enrollment and change groups. I am literally stuck. HMO's are only for people that don't get sick. Everyone thinks I can just switch onc...I can't...believe me I have tried everything in the book. I can change groups in January 2010 and with that change I LOSE my primary doctor of 30 yrs which I hate to even think of. I also lose all my other doctors in this group that I happen to like and trust. I am stuck and they know it...thats how they continue to get away with this crap. I have to fight for everything. I wish I could just change but it doesn't work that way unfortunetly for me. This is a nightmare for me in more ways then one.

Chelee

Jackie07
10-26-2009, 03:26 PM
Chelee,

Do you have a primary doctor now? You should have one because of HMO. If you've got a new one, it might be a good time to ask your primary for the many procedure/test you are needing.

HMO has some funny rules. I gradually realized that my oncologist was just going to ignore many of my complaints. (Perhaps he thought I was lucky enough to be alive this long already? Nah, he always thinks I am hypochondriac.) When I had irritable bowel in January and went to my primary physician, it was probably the first time I went to him (since getting him as primary in 2001?) for any ailment - I was always under the care of either oncology or neurosurgery. And then I started thinking that perhaps my oncologist 'couldn't' prescribe certain things because of the HMO rules (or 'quotas'.)

Anyway, now my primary is sending me to a neurologist (whom I was going to get from my neuropsychologist when my primary was reluctant to give me an MRI after my 'vertigo'.) I believe that my primary simply had no idea of my past brain surgeries. I think he probably 'freaked out' once he saw the huge hole in the center of my brain left by the original tumor and the three bright, shining marbles of recurrence. [Was checking with Neurology department about my referral. They looked at my situation and said I should go to Neurosurgery for appointment. So I called back to the nurse practioner of my primary physician - she left me a message, looks like they are going to get me a referral to neurosurgery. 'Managed care' really means that 'we' need to 'manage' our care, I guess.]

'Communication' is so important, yet our doctors just don't have enough time to listen to us. They constantly forget that we are the best 'informants' of our health condition. After all, we are the 'temple' these 'engineers' are working on.

Try the primary doctor route - they are the power center in the HMO system. If you don't have one right now, ask your hospital to assign you one.

ps. Just re-read your posting. My impression now is that your 'Group' might be hoping for you to change providers so someone else will be footing the medical bills as you have become an 'expensive' patient (as we all have by now.) Talk to your attorney first, as it might let your old provider off the hook too easily if you switch.

Barbara H.
10-26-2009, 04:37 PM
Hi Cheele,
I would still try to get into the T-DM1 and postpone the hip surgery for two months if that is not considered dangerous. Then you can take a two or three week break from the trial and resume it while you are recovering. Herceptin is not chemo. The small molecule in the T-DM1 trial is a chemo but it is injected into the tumor and very little gets into the blood stream. That's why it has so few side effects. I would not fear having these drugs soon after surgery once I was feeling up to it. I would certainly have an oncologist that you trust look into this issue. Good luck.
You are continuously in my thoughts.
Barbara H.

Nancy L
10-26-2009, 06:57 PM
Maybe the hip surgery doesn't have to stop your cancer care. I am sure you met Kimberly when you saw Dr. Slamon. I would e-mail her right away and explain the situation. It would seem to me that a non-chemo cocktail like Herceptin and Tykerb could be tried while you are getting your femur repaired. Are they talking about radiation on your bone mets too?

Hugs, Nancy

Rich66
10-26-2009, 07:38 PM
If you have a bad relationship with your HMOnc, do you think it would be possible to strike a deal in that the HMOnc would "coordinate" your tx in conjunction with an outside onc of your choosing? With the right onc, you might be able to negotiate a reasonable rate.

Lien
10-27-2009, 02:02 AM
Oh Chelee, I am so sorry. I live in the Netherlands, where healthcare is so much easier to deal with. We may not have all the trials that you do, although we can even go to another EU country to get it, but we can choose our doctors and medical facilities. And we pay far, far less for insurance than you do. I didn't realize how hard it is for you to change.

I hope you find a solutions that works with a minimum of stress and aggravation. This is very unfair.

Chris is right though about one thing: you can't change the past. So for now, if you can, your best option seems to be to focus on the future and your treatment. You are doing fine getting the best info you can and you have Dr. S's office to help and support you. That's a wonderful thing too!

Hugs

Jacqueline

Chelee
10-28-2009, 12:08 AM
Jackie, Yes, I have had my primary doc for 30 years...that is one of the things I mentioned I would hate to lose if I change groups. After the nonsense I ran into again today...I have to get into see my primary ASAP. My onc just isn't going to do anything for me...this is very clear. She was suppose to call me with a referral that specializes in orthopedic oncology Monday. Never happened. I made many calls and finally someone from her office calls me today with a orthopedic doctor which I looked up and he specializes in sports medicine...and repairs hands & wrist. His website is full of video's on how to repair different injuries to wrist & hands. (This does NOT seem like the type of orthopedic surgeon I was looking for!) I wanted a orthopedic oncologist that specializes in repairing bone that have mets.

I was down at my cancer center today to get my Herceptin/Zometa infusion. My onc walked in the infusion room twice and pretended not to see me. She knew I was there because she had other office manage come tell me to go see the orthopedic doctor she referred me to and come into see her on November 11th and let her know what he said. (I'm glad she isn't the least bit concerned about my hip and the fact I'm NOT on any chemo or anything to kick the crap out of cancer.) The least she could of done is walked over and talked to me since she is leaving me high and dry with nothing. I have no answers about my hip, chemo or what I should do...just watch time keep going by.

I got a copy of my MRI of femur/pelvic. There is a large heterogeneous mass in the intertrochanteric region of the proximal right femur measuring 6.4 x 4.7 cm. It also notes there are two borderline enlarged lymph nodes within the right inguinal region, measuring up to 1 cm. (The side of mass on femur is news to me...also she never mentioned anything about the enlarged lymph nodes to me.) I have to get my own reports to find anything out.

Chelee

Chelee
10-28-2009, 12:22 AM
Nancy, Yes I did meet Kim...she is so nice! She was in the room the entire time I was with Dr. Slamon. I called her several times over the TDM1 trials...she always goes out of her way to help if she can....she is a very pleasant person. Today I had to go do my Herceptin/Zometa infusion so didn't have time to call Dr. Slamon's office. I don't have their email as I was just there for a consult. I'm not a patient so I wasn't given anyones email. Kim gave me her card...so I just call and ask for her.

They were all for me doing Herceptin, Tykerb & Zometa...so I would like to see what they say now that this hip issue has come up? My onc and the COH onc were both against it which I don't understand? (Probably cost again since I'm in a HMO...she would never admit it but I can't help but wonder?!) With Tykerb I think the worse thing might be the problem with diarrhea I've heard everyone mention. With a femur repair I'm not sure how fast I can move...could get messy. lol :)

Chelee

Ellie F
10-28-2009, 09:50 AM
Hi
Please can someone tell me what a HMO stands for?
Thanks Ellie

Nancy L
10-28-2009, 10:08 AM
Here is the Wikipedia definition. HMO's have lower premiums and in turn, restrictions on services.

A health maintenance organization (HMO) is a type of managed care organization (http://her2support.org/wiki/Managed_care) (MCO) that provides a form of health care coverage (http://her2support.org/wiki/Health_insurance) in the United States (http://her2support.org/wiki/United_States) that is fulfilled through hospitals, doctors, and other providers with which the HMO has a contract. The Health Maintenance Organization Act of 1973 (http://her2support.org/wiki/Health_Maintenance_Organization_Act_of_1973) required employers with 25 or more employees to offer federally certified HMO options.[1] (http://her2support.org/vbulletin/#cite_note-0) Unlike traditional indemnity (http://her2support.org/wiki/Indemnity) insurance, an HMO covers only care rendered by those doctors and other professionals who have agreed to treat patients in accordance with the HMO's guidelines and restrictions in exchange for a steady stream of customers.

Nancy L
10-28-2009, 10:26 AM
Chelee,

I am sure cost is a huge factor for the HMO. By the way, are you on Medicare? I calculate that the retail cost of the three drugs is close to $10K per month. Of course, insurance doesn't pay that much to the oncs. I would love to know the wholesale cost of all these drugs but I haven't figured out a way to get that info on the web.

Diarrhea with Tykerb is a problem but can be controlled by taking a Lomotil every morning and a strict diet. There are a lot of things you just can't eat or drink while you are on this drug---when you do, you pay big time.

The DM-1 trial is attractive. Cost is not a factor for the HMO when they put you on a trial---the drug company pays. And I am sure they get paid for all the paperwork, etc. So it should be a win-win to put you on this trial.

How do they plan to attack the tumor---radiation???

I feel so bad that you have a double wammy going here. And from personal experience, I know how difficult it can be when you have issues with a physician but are stuck and can't change. I wish I knew some magic tricks to share but I don't.

Nancy

Ellie F
10-28-2009, 11:28 AM
Thanks Nancy
Being from England I sometimes struggle to fully understand the complexities of your system for paying for healthcare in the States.
Ellie

BonnieR
10-28-2009, 11:46 AM
Ellie, to add to the confusion, not everyone has an HMO plan.

Chelee, one thing I noticed was that you said the onc wants YOU to report to HER what the consulting surgeon tells you. Seems to me that should be done between the doctors themselves. That should not fall on the patient's shoulders. Although, of course, "if you want anything done......"

Chelee
10-28-2009, 03:06 PM
Nancy, I believe "cost" is playing the biggest factor in my so called care if you want to call it that. I did get my Herceptin/Zometa infusion yesterday...but that's it.
As far as my femur goes I am suppose to be seeing an orthopedic surgeon to repair the hip before it breaks. No mention of radiation. (It sure is getting painful though.) My onc gave me a referral to an orthopedic. But I told them yesterday he is a "sports ortho that specializes in wrists & hands"...period.

I called that ortho's office today since there is about 7 other ortho surgeons...but the lady in the office said one of the ortho doc's said they would not touch my hip and referred me USC for a orthopedic oncologist that specializes in repairs with bone metastasis. I will continue making calls...but no one seems to care...who do I call?!!! But in the mean time...I NEED to do something to stop my cancer from spreading. Last time my onc even said that I am SO strongly Her2 I HAVE to get started on something now. But yet she can't even call me back or give me the time of day. I have put calls into everyone today and no one is calling me back. So much time has went by since I've recurred & I'm still not gotten any treatment. I'm at my wits end with all this...I need my hip repaired and chemo now. But I can't even get a doctor or anyone to call me back. This is beyond cruel...since I'm stage IV I suppose they figure I'm costing them too much money so I should just go away and die.

I noticed in my MRI report it says my mass on hip is 6.4 x 4.7...and it also mentioned two enlarged lymph nodes within the right inguinal region. (Rt side is the bone mets side.) So I suppose its spread to nodes now too!!! My onc failed to mention this to me. You think if she cared even a little bit she would be calling me...but she's hung me out to dry. (I think I'll go have a melt down...I can't take this anymore.)

Chelee

Lien
10-28-2009, 03:12 PM
Chelee, this all sucks. I'm sorry, I'm out of polite language. Is there a patient advocacy organisation in your area? Could Kim refer you to someone who could help? I'm sorry that I can't help you from where I am, the Netherlands, Europe. I just don't know how things work in the US.

Sending you a great big hug and healing vibes and calming energy

Love

Jacqueline