Bone Mets or Not?
So I was diagnosed with breast cancer Christmas Eve of 2014. I had a DMX on February 15 of 2015. I had reconstruction and implants put in May 4th of 2015. July of 2016 I fell out of my RV and landed on my knee on concrete. It was quite painful. 2 weeks later I woke up one morning and my right hip was all hiked up on one side and I could hardly walk. I went to the chiropractor and my hip had shifted in 2 different directions. Had an adjustment and continued to see the chiropractor. I started having a lot of pain in my lower back, hips, legs, and eventually up my back and into my neck. I have fibromyalgia and according to the X-rays the chiropractor took, I also have degenerative disc disease in L5 along with degenerative arthritis in the same area. I was not getting any better and decided to go to an orthopedic Dr. For whatever reason, it never occurred to me to talk to my oncologist about this although I did tell her what had happened and what I was doing about it. The subject of mets never came up. I got the MRI and saw the orthopedic Dr. a month later. He showed me a spot on L5 and said it was suspicious for Metastatic disease. I had him send the results to my oncologist. The orthopedic Dr. also ordered 3 more MRIs with and without contrast. Took almost 3 hours for those and I could hardly walk afterwards. I had them send those results to my oncologist as well and I actually saw her before seeing the orthopedic Dr. again. She said they found 2 spots. 1 at L5 and 1 at L2. She said it was highly unlikely that it was mets but because the orthopedic Dr had put that in the results that she would have to do a Nuc PET/CT scan to rule it out. She also said that it was more likely cyst or blood vessel malformation. She also stated that she did not know what cancer looked like on the scan and is dependent upon her radiologist to tell her anything. She said if if showed up on the PET scan I would have to have a bone biopsy. I saw my Orthopedic Dr. 2 days later and he showed me the spot on L2 and the the spot on L5. One is dark and the other is kind of a light color. I told him what the oncologist said and his response was that it was not cyst. He said they see those all the time and that's not what I had. He also said it was not blood vessel malformations because those are rare and for me to have 2 of them would not really happen. He is convinced it is mets. So I had the Pet scan on Wednesday. I called my oncologist and spoke with her nurse. I asked that either the Dr. or the Nurse Practitioner call me back and let me know if was going to have to have a bone biopsy. The nurse called me back later that day and said the Dr. said everything looks pretty good and I don't have to have a bone biopsy but I absolutely cannot miss my appt. on Monday. She repeated this twice even though I was not asking to skip my appointment. The talk with the nurse happened yesterday. I did figure out today that I missed my monthly appt for a Lupron shot this past Monday. So I guess she could just be saying that because I did miss the shot. But she can't give me the shot on Monday because I can't see the Dr and have the shot on the same day since my insurance won't pay for the shot if I see the Dr on the same day and it cost 1700.00. So I have the MRI scans and can see the spots. I also have the report from the radiologist that read it for my orthopedic Dr. I do not have the report from the radiologist for my oncologist and won't see her till Monday. I am confused because 2 different doctors are saying different things and I am also confused because I see the spots. Could it be anything other than mets? Also I had a bone scan in march because my liver enzymes were elevated. Nothing showed up on the bone scan.
Comments
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sunseta
I have no advicefor you but I only wanted to offer my support. I think one of the worst things us bc patients have to deal with is the constant 'what ifs '. You have already been through so much and I hope you get some resolution very soon.
Hugs
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Sunseta - I've no insights to offer but join Shoppygirl in sending my support. You must be at wits end with the back and forth, endless testing, etc. (to say nothing of the pain). I know this waiting over the weekend for answers will be tough and hope that the results on Monday will be good news, rather than otherwise. Hang in there.
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Thank you Hopeful and shoppygirl. I am ready for answers and to get rid of some of this pain. But I guess part of me is scared that if my oncologist says it is nothing......or just the arthritis; I'm not sure if I trust that answer. I don't know who I would even go to for a second opinion. I work in a healthcare environment but we only have South Carolina Oncology Associates that I can go to. I think I would feel weird asking for another opinion in the same practice. But I also know that the pain is worse and not going away. I know things can't stay the same.
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On Monday when you seeyour oncologist, have her call the orthopedic so they can discuss it while you're there. Keep us po
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That's a really good idea KBee. Thank you. As you can see, I haven't posted much on here even throughout my breast cancer. But I have always been impressed by the love and support that I find when I come and read/or post. My BMX and going through the reconstruction and all went so fast. It was relatively easy in comparison to what so many others have gone through. So it is sometimes hard for me to reach out. I do appreciate everyone's replies and time.
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Can you talk to the radiologist that interpreted the scans and get copies of his/her report?
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cive, I have the copy of the reports and the MRI scans from the orthopedic Dr. It all says suspicious for metastatic disease. I can see the spots on the scans. I don't have anything from my oncologist other than she doesn't think it could be mets and she only did the PET scan because she had to since the other Dr said it was suspicious. And she thinks he only said that because I have breast cancer on all my medical records.
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sunseta, has your onc done any blood work since you've been aware of the "possibly suspicious" scan results? It's not always definitive, but changes (or not) to your CA27-29 or Alk Phos could be either reassuring or suggest a closer look. My other suggestion, depending on where you're being treated, would be a second opinion, preferably at an NCI-designated cancer center, if your onc isn't already at one. I'm suggesting that because, while what your onc has told you is absolutely correct -- radiologists do heavily weigh our past hx into their reports -- larger university teaching hospitals also see the most breast cancer patients and scans, so will perhaps have more experience than a local onc at deciphering your scan results. But you certainly need peace of mind going forward, and if your current onc hasn't given it to you, then a second opinion should help. Deanna
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Deanna, I have never seen CA27-29 on my blood work. My Alk Phos was high for several months and my oncologist did the bone scan in March because of that. The bone scan showed nothing. It had started to come down but is on it's way up again. It looks like the closest NCI designated Cancer Center for me would be in Charleston. I live in Columbia SC. Thank you for your reply. I may have to look into the center in Charleston.
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Well the Dr said the lesions on my spine are not cancer. So good news there. They don't know what they are and will continue to monitor. I will have another scan in 3 months and blood work in 6 weeks. Thank you to everyone that responded and sent prayers and positive vibes my way!
Amanda
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