Concerned about bone metastases

Trailrunner4 · July 2018

Here I am again. I had my last scare in April 2018 when I found some lumps under my arm 6 months after my bilateral mastectomy and reconstruction. Thankfully those lumps turned out to be scar tissue from the surgery and a cyst. But now I am revisiting something I asked my breast cancer surgeon earlier in the year. I started having pain and weakness in my legs, arms, back and ribs in late 2015. I was diagnosed with costochondritis in 2016 and finally fibromyalgia in 2017, just about 6 months before my breast cancer was found. I had asked my breast cancer surgeon if it's possible that I don't have fibromalgia, but bone mets or secondary breast cancer in my bones. She said it was an excellent question, but she thought it was unlikely. However, after 7 months of Tamoxifen, my leg strength has improved a lot and I am back to running and exercising in a way that used to cause a lot of pain. My rib and sternum pain is gone. This is why I'm thinking about this again because my breast cancer was ER/PR+ and if the cancer did go to my bones, then it is likely to have the same hormone make-up (though it can change), so maybe the Tamoxifen is keeping it at bay in my bones.

I decided not to wait for my next oncology appointment. I'm going in on Wednesday to talk about it. It is difficult to face even the possibility of bone mets head on, but delaying treatment isn't going to help anything. I did have a CT scan after my diagnosis, but no bone scan. One of my questions for the oncologist will be whether or not a CT scan is enough to look for bone mets, or if a bone scan is also necessary.

If anyone has had any experience with this, I welcome feedback and words of wisdom. Thank you!!

muska · July 2018

Hi Trailrunner, based on the information you provided above I am not sure why you are thinking about mets to begin with. You had a low grade tumor, finished treatment very recently, apparently you did not have chemo or radiation - I assume there was no lymph nodes involved. Most importantly, you are now feeling much better. Why on earth would you start looking for mets?

Best

beauz · July 2018

Hi Trailrunner, i agree with your reasonings. Your surgeon should have paid more attention to your concern due to the fact that your IDC were in your BOTH breasts! My limited knowledge on CT and bone scan is that CT is more focused on organs and soft tissues in the torso while bone scan is focused on skeleton from neck down. I had ct and bone scan before I started chemo. My CT showed a spot in my liver which my MO said looked like a cyst. He followed that up by an ultrasound on my liver to make sure. Your concerns definitely deserve attention and actions from your doctors. I would ask for bone scan. Even if the scan result is clear, it doesn't necessarily mean you overreacted, it could also mean Tamoxifen might have worked. I am glad to hear tamoxifen eased your bone pain. Good luck with your appointment and keep us posted please.

Trailrunner4 · July 2018

Thank you so much for your supportive post. Not only did I have cancer in both breasts, but I think it had been there for a while (just my guess because it was a non-aggressive cancer). I had 5 tumors in my left breast that had also spread to the nipple and one tumor that had spread to the nipple in the right breast. My cancer subtype was Luminal A, which from what I have read is the subtype most likely to spread to the bones and it does not have to stop at the lymph nodes first. I also had a blood test that showed hypercalcemia in 2016, and I developed bowel incontinence in 2016. Hypercalcemia, bone pain, and even the bowel incontinence are all signs of bone mets, but could also be caused by other things (e.g., Paget's disease). So, given the bilateral breast cancer and the additional signs, I think it's reasonable to at least have the conversation with my oncologist and see if he too thinks we should check it out.

I will say, I am scared about this and I'm not trying to find bone mets, but if it's there, then I want to know so I can make decisions. I also recognize that having had cancer puts me in a state of mind where I worry about symptoms and what could be next.

Thank you for your support! It means a lot.

Trailrunner4 · July 2018

Hi muska, from the research I have done, low grade, non-aggressive, and Luminal A cancer (and ER/PR+) is the cancer most likely to go to the bones. I know it's counter-intuitive. I guess it's sneaky that way. And, even more sneaky, it doesn't have to stop at the lymph nodes first. It can get in the blood stream and get deposited in capillaries in the bone tissue. Yuck! I guess to answer your question, I want to talk to my oncologist about it because of my symptoms (bone pain, hypercalcemia), the type of cancer I had, and the fact that I have seen improvement with the Tamoxifen is why I am thinking about bone mets. If there's any chance, then I want to know because I would like to be on this planet for as long as I can.

sparklypink · July 2018

Hi Trailrunner: so did you and your oncologist decide to do a bone scan?

Trailrunner4 · July 2018

Hi sparklypink, thank you so much for asking! I did see my oncologist and we talked it over. He said the MRIs I had on my spine in 2016 and early 2017 would have detected bone mets if it was in my spine and then the MRI I had for the breast cancer would have seen it if it was in my ribs and sternum. He offered to send me for a bone scan anyway to check everywhere that didn't get an MRI, but for now I settled on a blood test to look for hypercalcemia and a few other markers. I got the tests results back and even though I haven't heard from my doctor yet, they all look normal to me. I'm going to let it go at this point. I told my oncologist that if he's not worried, then I'm not worried. Plus, he told me that even though breast cancer can go directly to the bones, it usually does spread to the lymph nodes first, so maybe it's time for me to just move on. I have a sense of foreboding abut this, but I think I've done everything that's reasonable. If I'm still thinking

sparklypink · July 2018

Hi Trailrunner: thanks for your thinking/logic. Makes sense to me. Curious what your symptoms were of fibromyalgia. I have a bone scan on Wednesday and have been researching all the possibilities re: my symptoms. And if I can help you in any way, don't hesitate to reach out!

Harborwitch · August 2018

I think I last visited this site in 2010 . . . we were in ND and getting ready for a 3 month journey in our motor home to visit family so I never really got established with my MO back there. It is now 2018, we are still living in our motor home and never made it back there.

Over the years I have been going to Dr.s but because my mammograms kept coming out clear they couldn't refer me to an MO for consult and didn't think it was necessary. There has always been that little thought in the back of my head "what if?" In the mean time I've had back issues, work, gut issues the little worry just got shoved to the back. Now and then I'd wonder if mammograms were enough . . . but my Dr. seemed to think they were.

I know the thought in the back of my head came from a good friend who's BC mets were in her spine. She had been complaining to her Dr about losing the feeling in her arm, eventually pretty much losing the use of it . . . she finally found a Dr. who ran the right tests and discovered the cancer. She had gone through all of the traditional therapies for lung and breast cancer and didn't want to go that route. She opted for alternative therapies . . . an all organic diet, including organic cigarettes (!?). Eventually they put a rod in her spine so she could sit up, and not to many months later she passed away.

I had MRI's on my back in 2015 and 2017 with diagnosis of stenosis, arthritic changes, and typical changes for a 60+ year old woman with back issues. My new PA sent me for a new MRI, a referral to Neurosurgery and PT. The MRI showed bone marrow changes that could be indicative of Mets. due to my history of BC. I am waiting, not patiently, for the appointment for a PET scan and a referral to Oncology. I am terrified and keep thinking about Eileen. I just turned 70, started a new job last December, and have too much my husband and I have planned. I run between anger at having my concerns being ignored, terror, and being pissed off in general.

I guess in general I'm wondering about survival rates, just needing to vent to women who understand. Thank you all for listening. Any thoughts would be welcome.

Sharon

KBeee · August 2018

Hoping the PET scan shows it to not be cancer. In general, most women who have mets to bone only can survive many years, though there's individual variability. There are many current treatments available to keep mets at bay for quite a while. I am sorry you're dealing with this, and hate that your concerns were ignored.

JoE777 · August 2018

Trail runner,wow, just read your post. I went down that road. Treated for fibromyalgia then physical therapy. No recurrence in breast. Mets to the lower back.

Hypercalcimia almost got me. Be firm but nice. It's your life. Hug

Harborwitch · August 2018

Thank you KBeee. I got my referral for the PET scan next Tuesday, Thursday is the Neurosurgeon, and the following Tuesday with Oncology. I'm worried, the pain in my lower back is pretty much constant now and I don't know if it's simply the stenosis and other issues along with the epidurals having worn off or something else. I just want to get this over with, I have a lot of plans and want to be able to go fishing with my husband and a lot of cooking to do.

KBeee · August 2018

Waiting is so hard, and you have had to wait so long. Thinking of you. Please keep us posted

Harborwitch · August 2018

Thank you again. I will keep you posted. This summer has been a riot, I've swallowed cameras and "smart pills" now all of this. I always chuckled at elderly people whose social calendars revolved around Dr. appointments. Now it appears to be my life.

Harborwitch · August 2018

Well today was step one - the PETct. It took 4 needle sticks to get the IV line going but after that all went smoothly. Now to wait for the answers next week. I expressed my concern that all they tell you to get is mammograms . . . and they only see your breast tissue. The phlebotomist and the technologist both said they wished someone would come up with a test.

Tomorrow is a Neurosurgeon about possible spine surgery for back pain . . . I wonder if this could be redundant?

Trailrunner4 · August 2018

Hi sparklypink! I'm so sorry I've taken so long to reply. I get overwhelmed by this topic sometimes and have to disappear for a short while and pretend like everything is okay.

My fibromyalgia symptoms are primarily in my hands, legs, and feet. I am still doing better overall, but sometimes I have to stop walking due to intense pain in my thighs (usually the right thigh) that cuts right down to the bone. I have to catch my breath and then try again. Other symptoms include muscle cramping and widespread pain in my legs that I describe as an intense ache that won't go away. In my hands, I get pain and weakness. I can't wring out a towel, for instance, without it causing intense pain that takes my breath away. The rib pain is just an ache, like literally the ribs hurt. I made the mistake of applying a heat pad to my ribs once and the pain and sense of swelling intensified significantly.

One of the weird things about fibromyalgia for me is that it feels difficult to explain the symptoms. They can be different every day. I find myself thinking "oh, so this is going to hurt today. okay." My oncologist referred to fibromyalgia as a "trash can diagnosis" because it's the diagnosis when all other possible diagnoses are thrown away. One thing that is interesting to me is that the intense leg pain that I get reminds me of the intense leg pain I had a child that everyone called growing pains back then. My rheumatologist said that it is not uncommon to have fibromyalgia as a child and have it resurface later in life.

Sorry I wrote a novel! I hope you are doing well and thank you so much for your support.

Trailrunner4 · August 2018

JoE777, thank you for your reply and sharing your experience. I'm thinking of taking my oncologist up on his offer to do the bone scan after all. After talking with him, it's probably not something I should worry about, but the concern won't go away. I can't help but think if there's any chance at all, then it's got to be fully investigated.

Trailrunner4 · August 2018

Hi Sharon, please continue to keep us posted. You are certainly not alone. I hate the waiting part in all this. I am keeping positive thoughts and prayers that you get good results and at least the results that will let you know you can keep all your wonderful plans!

Harborwitch · August 2018

I went to the Neurosurgeon today. He had the report on the PET scan and said it didn't indicate any metastice in my spine! I could hae hugged him. But there is a lesion on the inside of my right thigh that is concerning. He asked if I had a scab or sore, pain? No scab or sore but it is tender - I have chalked that up to a 17lb Pom wanting to stand in my lap to look out the window of the motor home.

I see the oncologist nest week for the most accurate information. The neurosurgeon has his scheduling staff setting me up for epidurals in my spine and told me to forgo PT. At some point I will probably have to have the spot fused but for now I am a happy camper.

Thank you all for your support. I think I will hang out here more. I miss love and friendship of all of you.

Trailrunner4 · August 2018

This is great news, right?! I'm very happy for you!

Concerned about bone metastases

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