u/Shot_Profile5317

Tomorrow is six months since my emergency surgery to put a rod and some other hardware in my femur to stabilize the femur and pelvis. I’m also meeting a new surgeon, as my surgeon is retiring at the end of the year and can only be seen during the week and I’m getting ready to go back to work Tuesday through Saturday and this guy is available on Mondays so I get to meet a new guy. I’m anxious to see the imaging because I just found out from my endocrinologist appointment a couple weeks ago that I actually have two pelvic tumors and one femur tumor. The surgery was for the femur and then I did radiation for the femur and pelvis metastatic tumors. Then I did a Bisphosphonate infusion that apparently really attacked the pelvic tumors, making them so painful that I was back to the same kind of pain that I was in originally with the femur tumor that had eaten away the bone so much that it was only a couple centimeters left. Now I’m struggling with organizing someone in the five oncology teams to take care of my pain. My endocrinologist tried to have the ortho guys prescribe, but they said they don’t, I think I’ve had three now say that they don’t and then I had the one medical oncologist drop me all together. So this endocrinologist is saying that he is going to refer me to Pain Management, which I hope is within their hospital. If not, I’m asking for a referral to palliative care and I’m also asking for a new medical oncologist because there has to be more than one in a hospital system right? I’m hoping so. I’m so terrified that I’m going to run out of my meds because I have no refill on it and be left with the two that are non-narcotic and might not even touch the pain. I’m very nervous about it because this bone pain is no joke. And I feel like nobody is listening to me. So, we will see how tomorrow goes and see if this new dude listens. Wish me luck! Everybody have a great Monday! 🌻

I’m looking for anyone who has received these infusions for metastatic bone cancer. I’m scheduled to get my first infusion on the 21st and I’m a little bit anxious about it. For reference, I was discovered to have tumors in my femur and pelvis caused by follicular thyroid cancer. I had my thyroid removed a week ago. No lymph node involvement, so rare, but not unheard of. I would love to hear from someone who has had a similar experience. TIA

My thyroid surgery is today and I cannot wait to have it done! Catch y’all on the flip side!!

I was diagnosed in May with metastatic bone cancer in my femur and pelvis and then they figured out it was follicular thyroid cancer. I don’t think I’ve met one other person who was diagnosed the same way I was. I struggled for a year and a half with horrific pain in my leg and was very close like a centimeter or two from breaking my femur. Had to have a rod put in my femur and now I’m going to have infusions to rebuild the bone in the femur and pelvis. I’m just curious if there’s anybody else out there like me. I get my thyroid removed this Thursday, I’m superduper looking ready for that.

So I am the one who found out I had thyroid cancer because they found a mass in my femur and my pelvis, and my femur almost broke because of the metastatic bone cancer that was caused by follicular thyroid cancer. I’ve completed surgery to install a rod in my leg and ten rounds of radiation on that leg and hip to try to get rid of that cancer and now I’m waiting for my thyroidectomy which is coming up in August. All this time, my surgeon has wanted me to have bisphosphonates infusions and for some reason, my general oncologist would not do it. I’m working with five different oncology teams at the University Hospital where I’m being cared for and it kept coming back to the general oncologist who kept saying it should go to someone else. Well, I finally just saw my surgeon for the second time since my surgery and he said I’m healing great and that bone is actually growing back already on my femur around the hardware so he’s really pleased with the surgery but he understands why my pelvic pain is so gnarly and is what he thinks Bisphosphonates would help with. And he was really upset to hear that the general oncology team was fighting me on it (and their nurse was really kind of rude to me about it) and he apparently went to the department chair and complained and I got a call today and I am now set up for infusions through General oncology. I will be there Monday of next week for my first infusion. Has anyone else had this type of problem? I have complained in the past in this thread about how much I’ve had to advocate for myself and how exhausting it is but in the end, I feel like I’m learning major life lessons at age 55, almost 56, that really in the end all you have is you. You have to advocate for yourself, no one else will.

Today is my PET scan, followed by my second follow up with my orthopedic oncology surgeon. He inserted the rod in my right femur. I was more nervous about the PET scan before today because I’ve never had one and I’m worried about what they’re going to find but I’m also nervous about talking to the surgeon because I’ve been in a whole lot of pain and I’m afraid to find out why. I literally can’t talk about it without crying. Just typing this makes me tear up and it’s driving me crazy. He wants me on Bisphosphonates but none of the oncologists (I have five separate teams of oncologist with different specialties) will prescribe them and I feel like I’m banging my head against a wall. Also, the pain in my pelvis and lower back is getting worse, not better. I am praying that it’s because I’m back to work and increasing my step count each day rather than because the bone cancer is not healing or is getting worse or is about to break my pelvic bones. If you don’t remember my story, I was having problems with my right leg and hip, and was limping really badly and everyone thought it was a pinched nerve and I was on pain management which was a freaking nightmare and long story short I went to a teaching hospital ER and they found a mass on my femur and my pelvis that turned out to be metastatic bone cancer from thyroid cancer. Then the thyroid cancer turned out to be follicular and that’s what we’ve been dealing with now. I had my surgery on my femur on May 11 so it’s been a rough couple of months, but I’m glad I’m finally getting somewhere with the thyroid cancer treatment. Any words of wisdom or encouragement for me are deeply appreciated.

Has anyone else here had follicular thyroid cancer that metastasized to bone? I keep reading about all these different thyroid cancers that metastasized to lymph nodes but I haven’t seen anyone else here who, like me had it metastasized to bone. I’m curious about other experiences.

So I finished the first week of radiation treatment and have two days down on this week so only three days left to go. However, in the middle of last week, I started sneezing. Randomly out of nowhere, different times of the day, I have no other symptoms whatsoever and I’ve done nothing differently other than staying in a hotel during the week to go to my treatment each day. I sneeze three times and then I’m done, blow my nose and then I’m done. I just think it’s weird. Is it recommended that I wear a mask out in public? Am I now immuno compromised? I guess these are questions I’m going to ask my surgeon when I see him for my follow up tomorrow to see how my femur is progressing. I think he’s going to be astonished at how well I’m healing. Just wanted to give everyone an update. The only negative that I’m having is a terrible aching in both of my legs. The right leg is the one getting the radiation on the femur and pelvis but both legs ache like I’ve run a marathon. I can’t wait to start exercising again. I hope all is well in your worlds and you’re all hanging in there!

I begin radiation therapy on Monday for follicular thyroid cancer that has metastasized to my femur and pelvis. They’re going to do the radiation on the femur and pelvis; they’ll do it five days in a row next week and the following week. They say it’s a low-dose of radiation so I likely won’t even have a sunburn type skin issue though I am very sensitive with skin so it may be a little different for me. And they’re hoping I won’t need chemotherapy. Then a week or so after that I meet with the ear, nose, and throat oncology team to come up with whatever treatment they have planned for the actual thyroid cancer. Has anyone here had this type of cancer and had it metastasize to bone? I’m curious if there’s anyone here who has had similar experience because I’m wondering if they are definitely going to take the whole thyroid because it’s already metastasized or what. Thanks to this group and of course my wonderful team at University of Florida, I am feeling so prepared and confident that I’m really not struggling like I was initially. I am, however, having panic attacks and nightmares so I do know there is some underlying anxiety that I am not trying to ignore but I really do feel pretty positive and confident. Thanks in advance for answering my questions.

Update: I had an appointment with the radiation oncology team today. (I had surgery two weeks ago to put a rod in my femur because they found a mass in the femur and pelvis stemming from the original cancer in the thyroid,) I was a little bit nervous, but felt well prepared. By the time I left, I was and am worried, disappointed, and confused. I initially met with the resident who told me everything they thought and were going to do and I thought I was prepared for that. I knew they planned to do radiation on the femur. I talked to her about Pain Management and she seemed a little bit confused and wasn’t sure who was going to be in charge of Pain Management but because I already have a Pain Management doctor (who is not affiliated with UF) she wasn’t sure if I should just let him continue. Then I burst into tears and told her that I want out of the Pain Management contract and would much rather have the people at UF handle the Pain Management because I do not like this Dr and his office. She said she felt sure that they would be able to take care of the pain meds, but she would make sure. Then the actual radiation oncologist, who has decades of experience and is world renowned, came in and told me that I would start treatment in two weeks and it would be very light radiation on my femur and when he was all done, I said what about the pelvis? And he looked at me like I had two heads and said what? And I explained that they found a mass on the femur and the pelvis when I initially came into the hospital and he said hold on and left the room for about 20 minutes. Then the resident came back in and said OK now we have to do another MRI and another CT scan because we did not realize that you were having radiation on the pelvis and it looks like you didn’t complete the MRI while you were in the hospital. I said no I freaked out (for the first time ever during an MRI) and had a panic attack and had to stop. So now I have to redo an MRI, do a CT scan, and then they’re going to do radiation, 10 visits. Initially she said that they were not going to be able to “cure” the cancer in the femur, but then he came in and said “our goal is to cure the cancer in the femur.” So I am just very confused and disheartened by the confusion. Tomorrow I’m going to get up and reach out to the hospital and see if I can speak to someone there who can be an advocate and see if I can get Pain Management on board to help me. And then I’ll go from there. That’s my update, thanks for listening.

So I was diagnosed last week with thyroid cancer that has metastasized to the femur and pelvis and haven’t begun any treatments or anything. My pain doctor has me on oxycodone for pain, I just switched from hydrocodone a couple of days ago. I woke up this morning with a brutal headache and throughout the day have just felt very nauseous. There is no reason I should be feeling that way, I don’t have a fever, I haven’t eaten anything bad or anything like that. I slept nearly 12 hours last night and then went back to bed today and slept for more. Yesterday I had two sets of visitors and I got 3000 steps in while I was trying to pick up the house and just make sure everything was OK,which I haven’t done since I’ve been home from the hospital. I’m recovering from a surgery where they put a rod in my femur because it almost snapped. Has anyone else had the experience of just feeling kind of off? Not related to any type of treatment, but just feeling very blah and a pounding headache and feeling nearly sick to my stomach.

I saw my surgical oncologist today who put the rod in my femur and got the results of the biopsy back. It is follicular thyroid cancer that has metastasized to the femur and pelvis. I’m now waiting to hear back from their thyroid oncology team, who will manage my treatment going forward as far as radiation, chemo, etc. The surgeon today said that that team will likely take over my Pain Management, but encouraged me to keep my Pain Management appointment tomorrow to make sure that I have enough pain medication to get me through until they can see me. So I have an appointment with him tomorrow afternoon. I called them today to see if they had received my medical records that I had called them about while I was in the hospital two weeks ago. The girl there told me that they had not sent over any request for the records, even though I called and spoke with someone and told them that the hospital asked that they send the request and mark the request “stat” so that they could get it back to them within three days. She said, “no we would have to have you sign a release” and I was like no one told me that when I called. I am so over this Pain Management office, it’s not even funny. So I’m going to keep the appointment tomorrow, I have the records on my phone that he’ll need to see to know that it is metastatic cancer and I’m going to request that he change my medication because the hydrocodone that he has me on has too many side effects and is not managing the pain properly. I’m trying to manage it with Aleve and the hydrocodone with acetaminophen with additional acetaminophen as needed. I got the levels that my surgeon does not want me to go over with the Tylenol or the Aleve because of my kidneys and liver so I now have a chart to keep track of when I take the meds, what kind and amount of each med, the pain levels before and after, and whether I’m being woken up with pain, which I definitely always am. So I told you guys I would give you an update and there it is. I really appreciate everyone who has reached out and offered advice and support, you guys are making this a little less painful.

I saw my surgical oncologist today who put the rod in my femur and got the results of the biopsy back. It is follicular thyroid cancer that has metastasized to the femur and pelvis. I’m now waiting to hear back from their thyroid oncology team, who will manage my treatment going forward as far as radiation, chemo, etc. The surgeon today said that that team will likely take over my Pain Management, but encouraged me to keep my Pain Management appointment tomorrow to make sure that I have enough pain medication to get me through until they can see me. So I have an appointment with him tomorrow afternoon. I called them today to see if they had received my medical records that I had called them about while I was in the hospital two weeks ago. The girl there told me that they had not sent over any request for the records, even though I called and spoke with someone and told them that the hospital asked that they send the request and mark the request “stat” so that they could get it back to them within three days. She said, “no we would have to have you sign a release” and I was like no one told me that when I called. I am so over this Pain Management office, it’s not even funny. So I’m going to keep the appointment tomorrow, I have the records on my phone that he’ll need to see to know that it is metastatic cancer and I’m going to request that he change my medication because the hydrocodone that he has me on has too many side effects and is not managing the pain properly. I’m trying to manage it with Aleve and the hydrocodone with acetaminophen with additional acetaminophen as needed. I got the levels that my surgeon does not want me to go over with the Tylenol or the Aleve because of my kidneys and liver so I now have a chart to keep track of when I take the meds, what kind and amount of each med, the pain levels before and after, and whether I’m being woken up with pain, which I definitely always am. So I told you guys I would give you an update and there it is. I really appreciate everyone who has reached out and offered advice and support, you guys are making this a little less painful.

I’ve been suffering with pain in my hip for over a year and a couple weeks ago woke up and couldn’t stand up anymore. A lot happened between when it started and when I went to the emergency room at a University Hospital about an hour and a half from my house. They took a CT scan and found a mass on my femur. Fast-forward to MRIs and all the other tests they did and they found another mass in my pelvis. My femur was on the verge of breaking so they performed surgery to insert a rod to stabilize my femur and hip. They also did a biopsy because they said it was metastatic cancer in those two areas. I got the news today that the primary cancer is in my thyroid. I have had thyroid nodules for 25 years. I have them monitored regularly and have had all kinds of tests done and nothing ever showed any problems. Now I’m looking at radiation in all three areas. I will discuss my plan going forward with my surgical oncologist tomorrow and he will refer me to the thyroid oncology department at that university, which luckily for me, is world renowned. Over the past year I became fairly active in the sub Reddit for chronic pain and pain management because everyone thought it was pain from a pinched nerve until I couldn’t walk anymore. So now here I am joining this community where I hope to find others who have faced what I am facing. I’m also here to offer support and kindness to others.

I will be seeing my pain doctor this week for the third time. The last time I saw him was for a change of medication and a cortisone injection because everyone thought I had a pinched nerve in my back. No one ever did any tests, they just all thought that’s what it was. A week after I got the cortisone injection, I woke up and couldn’t stand up. A few days after that, I ended up in the emergency room in Gainesville at a university Hospital, where they did one CT scan, found a mass on my femur and another in my pelvis. I had surgery that week to put a rod in my femur to stabilize everything because the femur was very close to breaking. I am waiting for the biopsy results to come back and seeing the surgeon for my two week follow up tomorrow. The day after that, I see my pain doctor. I hate the hydrocodone that he has had me on for three months because of the side effects (itching, fatigue, and constipation). I would love to tell him that I would like to take oxycodone instead because I have struggled terribly with the hydrocodone. (I took oxycodone in the hospital for a week and did not have nearly as many side effects.) Does anyone have any advice on whether that is something a pain doctor would consider now that we’re looking at metastatic cancer instead of a pinched nerve?

I will be seeing my pain doctor this week for the third time. The last time I saw him was for a change of medication and a cortisone injection because everyone thought I had a pinched nerve in my back. No one ever did any tests, they just all thought that’s what it was. A week after I got the cortisone injection, I woke up and couldn’t stand up. A few days after that, I ended up in the emergency room in Gainesville at a university Hospital, where they did one CT scan, found a mass on my femur and another in my pelvis. I had surgery that week to put a rod in my femur to stabilize everything because the femur was very close to breaking. I am waiting for the biopsy results to come back and seeing the surgeon for my two week follow up tomorrow. The day after that, I see my pain doctor. I hate the hydrocodone that he has had me on for three months because of the side effects (itching, fatigue, and constipation). I would love to tell him that I would like to take oxycodone instead because I have struggled terribly with the hydrocodone. (I took oxycodone in the hospital for a week and did not have nearly as many side effects.) Does anyone have any advice on whether that is something a pain doctor would consider now that we’re looking at metastatic cancer instead of a pinched nerve?