I need some advise, please!

Hello Everyone;

I am so glad to find a site that is very active. I have been on several breast cancer discussion boards since my diagnosis September 1, 2010, but they are not very active.

First, let me share about my journey.

I had a by-lateral mastectomy with the sentinel & 9 nodes taken from both sides. They found what was left 2.5 cm of the cancer. ( the first surgeon cut right through the middle of the lump and was told everything looked good and no cancer, until the pathology came back), so who knows how big the original cancer was. I had both DCIS and Invasive Carcinoma, Stage IIB. My Oncologist said I was this stage and not Stage III because they did not actually find tumors in the lymph nodes. But, the pathology said that there was cancer traveling from the tumor to the lymph nodes and it had connected to the vascular system.
I had 4 treatments of FAC and 12 of Taxol, but she did not think I needed radiation. I finished Chemo on April 15, 2011. I started getting back to my daily routine and had started exercising again. I also, had started tamoxifen. In August, 2011 I was diagnosed with Pulmonary Embolisms, two lungs full. The Dr's think the tamoxifen caused them so they put me on Arimidex, blood thinners and Horse Shots to stop my ovaries from working . March, 2012 I had a total hysterectomy so I could get off the blood thinners and the shots.
This is my delima, after my first treatment of the Taxol my right hip started hurting. I hurts everyday, worse when I first apply weight on it after sitting for any length of time. ( I walk with a pronounced limp for the first 10 steps or so) This I can live with, but what I am having a hard time with is that at night when I lay down. I hurt so bad I can't fall asleep until around 2 and I get up at 6. Four hours of sleep is not what I can survive on, night after night.
I have had Physical Therapy and a cortisol shot to see if that helped, but it didn't. I had a X-ray of the hip in January 2010 when it first started hurting for no reason. But, since then the only thing the Dr's have done is a yearly Bone Scan that is not showing anything. I have seen a Orthopedist but he said he could not do anything else since the cortisol shot did not work. In the last 6 months my Alkaline Phosphatase (ALP) has been climbing slowly. It is not off the chart but it is 163 and normal women should be around 120 (50-136 ranges) but it has steadily climbing. I have read this shows activity either in the liver or the bones.
For the last week I have only had 4 hours of sleep each night. As soon as I slow down the activity of the day the pain gets so bad in my hip bone it starts radiating down my femur and into my lower back on that right side. I take amitriptyline for the neuropathy and ibuprofen by the hands full. I have sleeping pills and pain pills but I can't take then during the week because I have such a hangover in the morning it takes me 3 or 4 hours to get work up good. Besides it still takes me several hours to get to sleep even with the extra meds.
1) I would like to know if you have bone mets, is this the kind of pain you have?
2) Should I demand further testing on my hip?
3) How did they find your mets if not at your first dx?

I am so worried that I have mets in my hip and that it will spread to my organs before I am diagnosed.

Thank you,
Teresa

By ibcmets
Reply 3761687
January 31, 2013 at 10:33 pm
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Teresa,
The Pet scans lit up in the bones for me. I had invasive idc & ibc and some positive lymph nodes so I had all the test from the start,
Pet scans, bone scans, MRI & brain MRI. Request a Pet scan?
Terri

By Katie-Sue
Reply 3761689
January 31, 2013 at 10:35 pm
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Dearest Teresa,

First of all welcome! It's a mixed bag that you are here...but we're glad that you have found us. You will find so many wonderful, kind and knowledgable people on this sight!

On to your question...
I was diagnosed with bone mets almost a year ago. However I'd been having extreme pain prior to my diagnosis for 6 mos. My Dr. first did x-rays, then MRI, PT, Chiropractor, finally a bone scan after I really pushed for it. My advise...if you are in pain, keep pushing for more scans until you get your anwsers! You deserve peace of mind, an anwser, and resolution! Hopefully the news will be good news!

Best of luck, please keep us updated! Blessings! Katie Sue

By Cathyy424
Reply 3761739
January 31, 2013 at 10:52 pm
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I agree with ibcmets request for a pet scan.I was told in 2010 I had bone mets but I did not have pain. The only reason why we did scans is because my tumor markers were going up so that is how it was found it was in the pubic bone ha ha what a place to go to .Did a few different treatments worked for awhile but then they stopped working and the cancer went to other bones.I am not in to much pain.I am on Xeloda have been stable for a year but markers are up somewhat so we will be doing a scan in Feb my dr tries to get the full body scan as it lits up where the cancer is but insurance is giving a hard time now but we will continue fighting.So if I were you I would ask for further testing so you can have peace of mind.
Hope this helps and I wish you the best of Luck
This site has been a blessing for me it is so nice to come to a place that people understand .
We are one big family so welcome!!!!
Cathy

By tgt615
Reply 3761787
January 31, 2013 at 11:13 pm
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Thanks girls for answering so quickly.
I have ask my OCO several times for a Pet Scan, which I have never had one of at all. She said that a PET Scan was not going to give me the answers I am looking for. My Primary will not do anything that might pertain to the OCO area. That is why he sent me to Physical Therapy and to the Orthopedist. He said to ask my OCO. I live in Wichita Falls, TX which is 130 miles from Dallas where my OCO is. She is suppose to be one of the best Breast OCO in the US. But she specializes in Inflammatory and I had Invasive with very very Estrogen and Progesterone positive. ( 90 and 80%). When I started seeing her she said "if your were going to get breast cancer this is the one that you would want to get because it is the easiest to cure". HA!!!
With all the side effect from the chemo and the tamoxifen she said that I only had a 2% chance of getting. I got all of them,!!!@!@!
In this town there is not any Breast Cancer OCO, not one OCO specializes in any certain area of cancer (maybe 8 of them total) they treat all cancer and if you have something rear they will send you to Dallas or Houston. I choose to use one that specialized in Breast because I thought I would get the best care.

Maybe I should go to one here for a second opinion. I am so tired of all of this. The DR's, the drugs, the pain, and then to feel like I am the crazy one.
I have read on here that some that have been dx with mets after the inital cancer, some with bone pain and some without.
I don't know any more! I would like to find out what it is. I told my husband tonight at dinner that I was going to find a orthopedic surgeon and see if I can get answers that way.
What do you think? Second opinion or Orthopedic surgeon?
When the pain gets so bad at night the last week I thought of going right then to the hospital. But, then again I was also afraid that they would just give me pain meds that I already have and send me home.

AAAARRRRGGGGG!!!!!

I value everyones opinion of what direction I should go. Maybe someone has an experience that might give me a clue as to what direction to go.

Teresa

By itsallgoodforever
Reply 3762224
February 1, 2013 at 6:48 am
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"In the last 6 months my Alkaline Phosphatase (ALP) has been climbing slowly. It is not off the chart but it is 163 and normal women should be around 120 (50-136 ranges) but it has steadily climbing. I have read this shows activity either in the liver or the bones."

When my ALP climbed to 286 in June of 2012 (24 years after my original BC dx), my family doc sent me to liver specialist. Liver doc did a specialized blood test that showed clear liver; that left bones. Before any bone testing, I had a biopsy on a small bump on my neck; there were clusters of small bumps under the skin that I could feel but were not visual to others. That biopsy revealed the bc had returned. Bone scan showed evidence of disease in bones; bump area did not show up at all on scan or MRI.

I tend to "insist" when I want testing done. If onc has not ordered scan, I would insist. If onc says PET will not give the answers you seek, ask what scan or test will.

My January 2013 ALP score was 110; December bone scan shows no active activity. However, bumps remain. My original dx was lobular; it frequently hides. I use my ALP score as a "first check" on bone/liver activity. It has been more accurate than other tests. Unfortunately, it does not reflect the status of other sites.

By Painter
Reply 3762230
February 1, 2013 at 6:52 am
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I am so sorry that you are in so much pain and getting so little sleep.I have been living with stage 4 breast cancer for over eight years.
I get pet ct scans on a regular basis, from three to,five months, depending on how I am feeling and what the cancer markers are doing.

Sometimes the scans show improvement. some times they show a mixed response.They work on some things but not others.

They seem to be the main tool the Dr.Uses to see if the treatment needs to be changed.My treatments have been changed many times as things seem to work for awhile only...sometimes several months,or several years if I am lucky. Please try to get a scan.

about your sleep issues, I can relate...Itnis very debilitating to sleep so poorly.Sometimes it is trial
and error with various sleep meds

Which is very hard until you find something that works.I am very sensitive to sleep meds and hated the groggy feeling the mornings that lasted several hours.This happened on even low doses.

Then I tried some anti anxiety meds..different ones. Now I have started to sleep for around 6 hours...up from 4....This has made a big difference in how I feel. I am taking 1 mg of Ativan, around 10 at night. I might all asleep at midnight and awake at 6 or 6:30... ButI don't feel drugged. I think at night time our fear come out more and so I am not surprised I have more anxiety at night. getting a better night 's sleep can help a lot with coping with what you are dealing
with, so don't give up until you find something that helps you sleep better.

Good luck with everything.This is a wonderful site with many caring people and good information.

By frenchy50
Reply 3762400
February 1, 2013 at 8:13 am
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I was looking at google maps and it is quite a hike to MD Anderson in Houston....But I go to Sloan and people travel from all over the world to go there. I am impressed that you are being your own advocate, because that is what gets us the answers we need. I can't believe you have not had one PET Scan. although they are not definitive....the tumor has to be a certain size to be picked up. That can happen with a bone scan also. It did with me. When I finally had an MRI with/without contrast we found a tumor on my spine. Would never have found it otherwise and it was thru not just Sloan, but a neurologist at Sloan...not my Onco.

I see that Witchita is 6 Hours from Houston, but I would at least try to get a second opinion there. I know it's far but people travel farther all the time and set up their main Onco at MD, or Duke, or Sloan and get their secondary care from onco at home. Gosh, when you have the best in the world only 6 hours away, I'd say give it a try at least.

Have they given you an MRI with/without contrast for your hip? That can easily be done, no radiation and I feel it shows more clarity....you could have it done by ortho (who wouldn't have specialty in cancer) or get a second opinion for the world famous MD Anderson.
When I first was diagnosed at a clinic with breast cancer and they set me up with the NY State Breast Program (medicaid)...they said to me, If money wasn't a problem and if it were your child or mother....where would you go? And even though I had Medicaid, a spot opened up at Sloan for me....you never know if you don't try.

Good Luck in what ever way you go and come back to our little group and we'll try to help the best we can....but at the very least, I think it would be important to get an MRI with/without contrast at a reputable place.

(HUGS)
Frenchy

By Shoofoolatte
Reply 3762487
February 1, 2013 at 8:42 am
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Your hip pain sounds a lot like mine started. Last August I suddenly began having trouble putting weight on my right hip. I was ok sitting down, but when I got up to walk it hurt. I limped, I hopped, I took glucosamine and other things I could find in the drug store for joint health. The last thing I suspected was cancer. I went to an orthopedic doctor who took xrays that showed maybe some arthritis, but nothing serious. He also ordered an MRI (w/out contrast). While waiting to get the MRI I went to a chiropractor and a neurologist. Two hours after the MRI I got a call from my oncologist, who was incredulous and skeptical (I had been supposedly a low risk for recurrence, having been treated for tiny Stage 1 breast cancer 5 years ago). She said that the MRI tech reported lytic lesions and suspected bone mets throughout my pelvis with 2 fractures in my hip. A Pet Scan, bone scan and biopsy followed, which confirmed the MRI report.

Anyway, without that MRI, I think it would have taken much longer for me to get diagnosed.

I have had radiation to my hip and it helped the pain, but there is still a dull aching there. After using a cane for 3 months I asked for physical therapy. My dr. did not want me doing anything weight bearing (not even walking more than necessary) so all the physical therapy was done in the water. It has been wonderful. I was able to throw away the cane and I walk straight now. Still some dull aching, which is worse during chemo and while taking neupogen shots, but very bearable.

By Hebafd
Reply 3762494
February 1, 2013 at 8:44 am
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Hi ladies, we are all sharing the same pain. My onc described the bone mets pain that it wakes u up at night - and it definitely does. I describe it lime some is filing my bones with a metal file or someone is dripping acid on the bone. It is chronic agonizing pain. Ibuprofen relieves it if not chronic but you need something stronger prescribed for chronic pain. Go for a PETCT Scan - make sure it has CT - to see your enemy in the eye. Radiation sessions on the hip or damaged back vetebrae when identified by onc does relieve the pain. Usually bone takes 10 shots and is bearable and do-able and the benefit of being pain free even if temporarily is good.

Zometa IV shots will also be taken if bone mets appear which help bone heal. In the meantime, calcium, vitamin D, vitamin C on your plate everyday.

Be optmistic, share your smile. Hang in there.

Regards,
Heba

By cabbinj
Reply 3763634
February 1, 2013 at 2:07 pm
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Teresa, I'm so sorry you're here, but happy to have you. I would definitly get a second opinion. What concerned me about your initial post was that your doctor didn't think radiation was necessary. I believe that, as of late 2010 early 2011, studies showed that even with a mastectomy, patients have a better outcome when followed up with radiation. At least that is what my surgeon and oncologist told me. Of course, I had the radiation and here I am with stage iv. Oh well...

What I have learned is that you must advocate for yourself. Most insurance companies pay for a second opinion, so go ahead and get one. Can you get to MD Anderson? That would be my choice if I lived in TX. Good luck!
-Jennie

By Marciainnj (Inactive)
Reply 3763694
February 1, 2013 at 2:24 pm
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I had no pain until my vertebrae started to collapse due to the mets. At that point, the mets were everywhere, I light up like a Christmas tree on the bone scan. I even have a rib fracture, although for the life of me I can't recall having pain in that rib.

So the pain from mets can be variable. Even my back didn't hurt so long as I was lying down (and because I'd read that bone mets always hurt at night, I assumed for quite a while that the pain couldn't possibly be due to metastatic disease).

I think you should push for the bone or PET scan. If that's negative, it's the Arimidex. I've had all sorts of skeletal pain from the hormone treatments, so I wouldn't be surprised if that's the answer.

In the meantime, get a painkiller to help you sleep at night. There's no reason to be miserable.

By tgt615
Reply 3764491
February 1, 2013 at 7:01 pm
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Well I just got back from my primary. He has ordred an mri for next Friday. But, he wants me to call Monday and ask them to call me if they have s cancelation so I can get in faster. He will call Monday and get me an appointment with s local onocologist. The ones here don't specalize in any area of the body. But at this point I don't care. I will go in and tell to her what is going on. Telling her I have never had s PET scan and I want one.
I don't know how much more I can take. I will take a pain pill and sleep tonight.
I told my primary about the replies I have gotten on here. He was sympathetic and said if I didn't get results ( I.e. mets or something that will show up on the mri, her would find me a specialist.

I will keep you posted. Thank you all for your replies.
I am just worn out. I needed to feel like I had someone on my side. I also needed to hear from y'all to validate what I am feeling inside and out.

By Katie-Sue
Reply 3765209
February 1, 2013 at 11:52 pm
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So glad to hear that you have an MRI appt. ! I'll keep you in my prayers too. Sleep well and let us know how you're doing. Best of luck!

Blessings, Katie Sue

By AAFlygirl
Reply 3766214 · In reply to 3764491 by tgt615
February 2, 2013 at 10:55 am
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Just wanted to add to what others have said, first welcome to our group and hope things turn out on you scans so you have some answers. I have had two pelvic fractures due to bone mets that were not found in time to prevent the fractures. They have never healed properly even tho they were radiated. They are now called non union fractures and when pain gets worse than it is now will have to have surgery. Anyway my point is that I have been having acupuncture and it has lessened and at times taken the pain away entirely. So please look into having that done, it takes several sessions but so well worth the time spent. Good luck to you and do keep us posted, you are in my prayers.
Nancy

By JodieBaker
Reply 3766336
February 2, 2013 at 11:28 am
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MD Anderson would not do a pet scan on my mom because they said she only needed a mastectomy...she had severe chronic debilitating back pain and we begged for bone scans...up until they wheeled her away to bilateral mastectomy...2 weeks later...hospitalized with mets to spine collapsing vertebrae...pleural effusion...was horrible...I hope you can grab and hold attn of drs better than we were able to. Take care and good luck.

By tgt615
Reply 3766596
February 2, 2013 at 12:42 pm
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Good morning;

I am getting upset with my husband and I don't know what to do! He has been my rock this whole journey, but he I wish he would just keep his opinions to himself.

This morning he said you are going to go through all this again and I can't understand why when you only have arthritis.

I think the chronic pain is more than arthritis. From witnessing my parents with arthritis the pain comes and goes. This pain has been with me for two solid years, just varying degrees. But the hurting at night has been there every night. The weight bearing pain has been there about 9 months. I have been able to live with it until the last couple of months, were I only had a night or two a week were it hurt so bad it would keep me awake even after my regular bedtime meds would kick in. But when I have gone 6 nights were I only got 4 or 5 hours of sleep, it is time to find out exotically what it is.

I have been hoping that it is just arthritis, but I really have doubts about the arthritis and a very strong feeling it is probably Mets with so many of you confirming that you had this same kind of pain before the dx your mets.

I read that some of you have suggested that it might be the Arimidex that my be causing the pain as it does have that side-effect. The hip pain started after the first treatment of Taxol - Jan. 2011 but I did not start the Arimidex until after my PE in August, 2011. I was on Tamoxifen from April - August, 2011, changed to Arimidax because they think the Tamoxifen caused the PE's. I do have a lot of joint pain in all the other joints, my shoulders, my elbows, my wrist, my knees and my ankles. I know all this joint pain is mostly from the Arimidex because it did not start until after I started it, and the Ibuprofen works pretty well for it. But, the pain in my hip is all that pain rolled in to one and more at night.

Question- If you know what your ALP # were before your dx, can you please share? Also, What blood work does you Oncologist take at your visit? Some of you have said something about markers, what are those? My Oncologist only takes my CBC at every visit.

In September 2012 my ALP had made a 30 point jump, I told the Oncologist I wanted a new Bone Scan and a PET scan. She sent me for a Bone Scan, Liver Sonogram and a MRI of the brain. She does not ever look at the actual films herself. I have tried to take her some that I have had here in Wichita Falls, but she said she only wanted the written report. With the even my layman's eye I can see that the top of my femur is darker or light or lighter which ever contrast you are looking at than the previous one taken. But the report only said increased uptake in several areas further testing needed to determine. The Oncologist said that was just arthritis and no other testing needed. I just can't understand why she wont do a PET scan. Anyone else have this experience?
Thank you so much,

Teresa

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