My onco just called to tell me that my CT scan of two weeks ago showed possible bone metastases in my spine. Apparently they were in previous CT scan, but she said radiology did not make a big deal about it.
In her email yesterday she said it may or may not be bone metastases. She just called me and I said I am not going to fall apart, I said but quite frankly is it or is it NOT the breast cancer that spread to the bone (two spots in spine).
She said we would wait for three months and take another CT scan and if it increases or something, we will do a bone scan and then I will have another medication. I said okay, but in the future, I want to be told of this. I said I had to email you bc I did not want to wait for the scan results and asked you to call me if anything was off and if not I would see you next month.
It was just on a whim I emailed her and got the news. I said going forward, I want to know exactly what is going on and not have things hidden from me as apparently the previous CT scan mentioned something. Her excuse was that some radiologists are more detailed than others. I said well I should have been told then. I don't get upset easily I said, you know that, but I want to be better informed by you. She apologized. Will see her next month and CT scan in three months and then see if they grow or move and then a bone scan (Had one once before and hated how long I had to lay there so I told her until it is necessary, I do not want one). These new ones may or may not remain stable. Is this how it starts when they find it is spreading? Confused. Not really upset. I always remain stable (LOL) at anything I am told. Just annoyed that this was referenced in my prior CT scan but she never mentioned it.
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kearnan
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Yes and no. Glad for the clarity you got. Did those spots remain the same in size.? I started stage 4 with lung mets2 tiny ones, 2 in ribs, t7,t8. Had radiation to t7,t8 they were getting too close to spinal cord. I was on ibrance-faslodex-xygeva. My last mri in sept I insisted on because of severe sciatica showed more spinal Mets. Ibrance did hold them back but my allergic reaction to it resulted in stopping treatment.
I just got mutation tests results- my new was neg now is positive so moving on to Herceptin iv. Also am positive for pic3 but I don’t like the fact piqray causes diabetes and I am already pre- diabetic and on steroids.
You handled it all so well- admire you. Keep on going strong my warrior friend♥️♥️♥️
She first said in an email that it MAY or MAY not....I was angry and responded in the email. That is not an answer. Either you know it is breast mets or it is not. She then responded that she did not want to discuss in email. Just got off the phone with her and she said they probably are, they are on my spine but they look stable and we will see with my next CT scan and if so there will be another medication I can take. I said okay, but apparently this was referenced in a previous CT scan report. I said going forward, I want to know something like this. I had no idea something was seen in the previous CT scan. I said you see how I am, I do not fall apart but I do want to know what is going on. So we are going to keep an eye on it and if next scan shows they changed or got bigger, we will do a bone scan and then there will be another medication. I said that is fine with me but going forward, I need you to be more detailed and let me know. She apologized.
Yeah she called. It is two spots on my spine that are breast cancer mets and apparently they were referenced in the previous CT scan I had before. I told her do not hold things like that from me. So basically, she said we will wait until my next three month scan (bc apparently they seemed to remain stable from the previous CT scan but she NEVER mentioned it to me.) She said some radiologists put more information than others (she is always blaming somebody else). I said well going forward, you need to tell me these things. I should not have to email you to find out. So we are going to wait and see what next CT scan shows, if anything and then she said we would aid some new med. I DO NOT want a bone scan now. I had one when I first changed places and it was in the hospital and I had to drink something, come back in two hours (there is nothing around there) and then laid on a table where they basically tied me up even my feet and lay under the machine for 45 minutes. Only time I had tears in my eyes when that test was done bc I had no idea. So we will see in three months if they remain stable or if they changed. Another day, another dollar, I guess.
It bothers me that the radiologist saw the spots and “did not make a big deal” out of it. Not his/her decision to make. Glad you advocated for yourself. They just don’t get it.
Her response so that was that "some radiologists are more detailed than others when doing their reports." Quite frankly, (I have caught her in some mistruths in the past when she forgets something and blames the staff. I thought the CT scan was to find out about the new cancer tumor found in my breast far from the original after I was off the Ibrance for several months bc of the surgery and my wounds not healing. When I asked her at my appt. two Mondays ago well what was the result of the CT scan, she seemed a little startled (like she had forgotten). She then told me how bad radiology was getting in giving the reports on time (blah, blah). She then told me if I wanted to wait around for an hour and a half, I could and she would get the results. I said No.....I do not want to wait around. (Now, all of the sudden she could get them). I said call me if anything looks different, call me at home, otherwise I will see you next month. What I truly believe now (strong intuition) is that the CT scan report was on the computer, but that she had not reviewed it. I had the CT scan the Thursday before, she does not work on Fridays and on Monday I had my appt. with her. I think she lied to me and told me it had not come back (but then she could get the same day within an hour and and a half). I believe she had the report on the computer but she had forgotten to review it before my appt. so was taken aback and wanted me to believe she had not gotten it and wait an hour and a half so she could review it and then talk to me.
My Radiologist ordered a bone marrow biopsy of the leisions on my spine. This confirmed the breast cancer had spread there. They did the aspersions under Ct to get exactly in the spots. Having another CT with contrast in 3 months to see if these months of Ibrance and Letrozole have diminished the leisions. Lower white counts are my only side effects. You are right to be firm with your docs. It’s our bodies. Praying for you.🙏💕
Going forward I am going to suggest that you ask them for the report. I am being treated at Sloan Kettering and I read the reports on the patient portal. You should be able to access reports. This morning I had labs done before getting Faslodex. The Nurse Practitioner came in talking about my labs and I already had them pulled up on my phone from the portal and was reading them and comparing to the past. You have a right to see all reports on your tests.
I do that too; my results, including xrays, cts, labs are available usually late in the evening of the day I have them done. If it wasn't for seeing my lab reports, I would never have known my MPV and MCH values were elevated 10% in the last 4 mos. since I started ibrance, which indicates liver injury. I'm off ibrance now and only taking letrozole so my next bone scan is in November. What I'm saying is my onc never called about the bad labs and I would have waited to talk to him but then I started having chest pains two nights in a row from it. I know it was the ibrance because when I stopped it, the chest pains never came back and my blood pressure which had been going up up up went back to normal with my usual bp meds. I will do what the doctors take an oath to do, I will "first do no harm to my own body". I pray for God to show me the way, no matter what the dr. says, my Jesus is sovereign. God bless and heal us all in Jesus name, amen!
See, I don't want all that and I said that in the beginning so she may have taken it a bit further. I said to clarify, I don't need to know my tumor markers or the little stuff, but when it comes to something like the CT scan results, I want to know if it even mentions anything different. I know what I told you, but I did not mean that literally. I dont want copies of x-rays and stuff like that because I don't understand it but I did say going forward, I want more information about the scans especially if these two spots were "casually" mentioned in the prior CT scan result before my newest one. (I was so shocked when she mentioned two spots on the spine that I forgot to ask about the new cancer tumor.) Going forward, I just want copies of the CT scan.
yes, I like to read the doctor's remarks about my xrays or bone scans, otherwise, I don't know what I'm looking at just looking at the pictures. they only post their findings, not the pictures online btw ...
I'm going to agree with book lover. You should be given access to, or a copy of EVERY test you have. I am able to view mine electronically and print them out if I want.
There is a communication problem when your doctor doesn't share ALL test results with you. That's not her decision to make. I have my scans done a few days before I see the oncologist. Then during my appointment we look at them together. That system works very well.
It was also my decision (and I think she may have misunderstood) so I clarified it that in the beginning I said to her I don't want to hear about my tumors markers and all the other little stuff (seeing how upset women get about their markers after learning that they don't make a difference). I said I just need to know it has spread and we have to change treatment or you are stable. I don't need all the rest of it. So that was on my part. I said I know I told you that at beginning, but want to clarify.....I do want to know exactly what the CT scan results said (I was expecting news of the new cancer tumor, NOT that they found two spots on my spine) so going forward, I need you to be more informative with me and I also now want copies of my CT scan results.
I actually have a patient portal and my surgery reports were all on there. I asked her why no other tests are not on there. She said something vague about it is very time-consuming and really not necessary so I let it go at that. But now I have told her although I do not want to hear about tumor markers, and such that I do not want a copy of any scan results going forward.
Funny you mention that. I was complaining to a friend who had had stage ii breast cancer and just before treatment had a major heart attack (can you imagine). They then had to wait a year before treatment. She also had seen my doctor and said she also found her a bit flaky and that she turned decided to go to Sloan. I love my cancer center bc of the resources, social worker that has done so much for me, attorney that has done my last will and testament, power of attorney and has helped me set up getting into a pooled trust spend down (bc now I am on Medicare and the bills are piling in) so that I can get Medicaid as my secondary insurer. This way Medicare would be my first insurance, but Medicaid would pay my premiums which are $135.50 for Plan B and $37.90 plus loads of deductibles and copayments. It was alot of paperwork but finally the trust documents are in Medicaid now and I should receive a decision (expecting it will be approved) and then I will get my free car service back. I hate hate the thought of leaving Maimonides but I would feel bad asking for a new onco (since they all work on same floor) and making her look bad so I am considering Sloan also since this is life long treatment. I am waiting though for everything to be complete with Medicaid since then I will have no deductibles, copayments. Whatever Medicare does not pay, Medicaid will. So seriously considering Sloan though I hate the thought of starting all over again. I will wait and see.
I understand your annoyance about information being held back.
You should be told when they find something new.
I had a phone call from the neuro consultant who asked if i wanted to be told some news on the phone or come to the clinic. Obviiusly i choose the former.
He advised me i had a met under the skull and on the menges.
At first i felt disbelief. Then anger/upset. Then acceptance and lets get on with treatment all the normal cycle of feelings
I hope youve made your point now and in future you will be told good or bad news as it arises.
I always ask for the written copy of the report and to have the exam on a cd. I like you want to know everything and to have the ability to ask questions. I’ve gotten the same explanation about radiologists and how they read the scans. After each scan I compare to the previous scan and then can have any questions answered.
I would not want to start comparing one scan result from another bc quite frankly I do not understand and do not want to start googling and make my own medical determination what I have or don't have. But going forward, I now want them because she will have to be more forthright with me if I am going to get a copy of the results and in case I ever want to go for a second opinion.
I'm lazy. I wish we could do everything over the phone. I was annoyed with her response and said this is unacceptable. Either I have cancer mets on the spine or I dont. Her first answer to me was they found two spots that MAY or MAY NOT BE bone mets. I said that is not answer. They are or they aren't. (Yes, there was a tone to my email.) She then replied that she did not want to do this through email (liability) so she called me yesterday at 9 am. and I made it clear to her that I am not the type to fall apart or even cry, but I more detailed information from her for something like that and I actually had to email her to find out if the results were okay. She apologized. I much prefer over the phone LOL It was over the phone that she admitted yes they are breast mets to the spine but seemed stable.
I think when your onc dx mets to the lungs, she was more focused on that because it is soft tissue, and you gave her the impression you do not want all the details, and the lesions on the bones may have been too small to dx accurately. Half of the people don't want the burden of all the details and the other half want to research everything. Sounds like you are the former. Mets to the bones means there are lesions on your bones, which is hard tissue, not in your bone marrow. I look at it like barnacles on a whale. There are many on here that have mets to the bones only and I have two friends that have lived 15 & 20 years. I have mets to the bones only and I know I will worry if it spreads to my soft tissue (lungs, liver, brain, etc.) I have never seen or been offered to see my x-rays, but I get a hard copy of the report every time I see my onc and he goes over any important changes, if any. The report is easy to read for the most part, two pages at best; although I do not understand all the terminology. My favorite part of the report is when they say "unremarkable." I usually read it in more detail when I get home, since I only have about 15 minutes with the doctor. So, ask for a printout of the report next time you're there. The nurse always gets it for me before the onc even comes in. I also get a copy of my blood test. I have only recently signed up for the patient on-line portal, which may be a pain-in-the-you know what for the onc because they have to enter everything and probably really don't have the time. But, I'm not very techie and prefer the hard copy in my hands.
Kearnan I don't blame you for being annoyed that you were not told about the previous scan. I don't like hearing some radiologists are more detailed than others!!!! Medicine
requires detailed people. My scans show spots here and there and my dr says we wont react unless they are growing. He explained our body can have spots that are not breast cancer.
So far all my "spots" have turned out to be not breast cancer. There is one he is watching on my liver, but feels it is a "normal" spot. I have to have bone scans every 3 months till he is sure it is not changing and therefore will be pronounced a normal spot. He explained the inside of our body can very tiny spots that are harmless just like the spots outside of our body. But if it changes in size then it requires his attention. So I always put up with the bone scans. It is MRI's I don't enjoy. I hope this is encouraging.
Well, I went to see her Monday and she then said that there was two holes in my spine at T-15 and L-2. I am already on verzenio, getting falsodex injections (it spread to my lungs) so now she added the Xygevca(?) injection also that I got on Monday and will getting also now going forward and told me to buy calcium supplements (and I never took supplements in my life) to strengthen my bones.
The silver lining is that I can get the injections all the same day. I still feel no pain. As long as I am not feeling pain and can still be independent, I am okay with whatever extra drugs or shots I need. So until then, I will continue to live my life, not giving cancer any more time than I have to. When and if pain and discomfort comes, then I will make the decision that I am done. I have no family so I am not leaving anybody who depends on me. But to me, not feeling pain and being independent is important to me. So I am okay then with an extra injection. She said we will see more on the next CT scan. (Plus she is going to schedule an ultrasound to see about the new cancer tumor.) I want to transfer to Sloan Kettering as I live in Brooklyn, NY but I hate the thought of starting all over again. I will wait and see how the next CT scan goes.
So good that you aren't in pain from the bone mets! I just want to support you in the Xgeva decision. I was in a lot of bone pain when first diagnosed because I have lots of bone mets. Have been on Xgeva since Nov 2017...every other month...and all bone mets are stable without pain. I'm sure the Letrozole also helped as it backed off the cancer. Now I just have Xgeva every three months. I also make my own bone broth and have a cup of that each day, and take a calcium/magnesium/zinc supplement.
My oncologist trained at Sloane Kettering; I'd definitely check it out if I lived in Brooklyn. If you haven't had a second opinion yet, have you thought of going to SK just for that to start? I had a second opinion in May at Dana Farber in Boston and it was very helpful to review the five treatment options with another oncologist. I wouldn't have wanted to transfer to DF but appreciated the extra help.
Hang on ladies!! First off you need to trust and have confidence in your doctor! When I was first diagnosed with 4 th stage breast cancer, I went to Dana Farmer for a second opinion and was pleased with their overall assessment and presently my doc in Syracuse will work hand and hand with Dana doctor if my cancer changes? I have bone Mets on my spine and pelvis, several tumors in my liver and two small ones in my lungs. Presently my regime is to meet monthly with my oncologist, blood work done, I receive three injections, xgeva, and two in the butt of fluvestrant (spelling?). I have a PET scan every 3 months and she calls me within a day or two with results, I also can review those results on my patient portal. I have been on Ibrance for 1 year and 8 months ( started with 125 mg, dropped to 100, then 75 presently with no real issues except low white cells. I insist on being treated by someone that communicates with me about everything concerning this disease. If not, I would find a new doctor! Once you lose faith in your oncologist, you aren’t doing yourself a favor. We are all fighting for our lives with this ugly disease and we need to stand strong for the best information we can get! Continue to ask question and stay positive, since I DO BELIEVE that is half of our success! Good luck going forward. Keep them all honest! It’s your life to live the best you can. God bless! Kathy, Syracuse, NY
I agree, if the spots on your spine were noted in a scan/report, you should have been told straight away, it's totally wrong of them to keep it from you.
The reason they say could or could not be mets is because other things like arthritis can look the same on CT scans. They can only tell based on how it responds to the meds we're on (or maybe bone biopsy/scan but I was told that's more intrusive). When I was first DX I was told I had a spot at the bottom of my spine and I knew a few years before I'd been told I had degenerative arthritis so I asked the question, ie how do you know it's cancer -v- arthritis. That's the answer I got.
Also with regards to the scan reports, it's true, the report is only someone's interpretation of the actual scan! I find it frustrating because on my first one, they never mentioned my neck lymph nodes then on the 2nd one, they looked at the last report and compared the next one to that so the lymph nodes were missed off again. I've mentioned it to my Onc because I don't want them to be completely disregarding something - particularly as when she felt my lymph nodes one of the times, she said it had grown and was going on about changing meds - another story for another time but the point is, it's not insignificant so why weren't they reporting on it!!
It's a shame but the moral of the story is remain vigilant and as ever, be your own advocate!
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Women with bone-only metastatic breast cancer- do you see this as a chronic disease?
Does Fulvestrant Helps my moms MBC?
