Bone Mets Thread
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3 PET Scans? I've already had 5. That just doesn't seem possible!
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I've never had one. Between my doctors and insurance.
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I get a PET scan every 3 months. I noticed on some insurance paperwork I received recently that the hospital had to verify that the reason for the PET scan wasn't diagnostic, it was to check to see if treatment was working. It seems like anyone with cancer who is undergoing treatment, especially Stage IV breast cancer, would need a test at least every 3 months to analyze response to treatment, unless the person has been NED or stable for some time, which is only a dream for me at this point.
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My mo showed me the papers, I don't know what they were but I read the part about the Pet Scans. I will find out what they were from my daughter. She works in health care as a nurse and she confirmed what my mo said. My daughter says they are having training on the new health care cuts and restrictions.
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I agree with you TarheelMichelle. But according to my daughter and my mo there are a lot of changes coming in October.
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Well, this whole idea of 3 lifetime PET scans has got my panties in a twist. I have had a hard time finding anything that speaks to the specifics of treatment, diagnostics or testing limitations. Most things I've read are far more general. Here is a good summary of Obamacare from the Kaiser Foundation, but it too does not deal with specifics.
http://kaiserfamilyfoundation.files.wordpress.com/2011/04/8061-021.pdf0 -
I have to talk to my MO about the PET scan. I've never had one. She only orders bone scans, CT scans, and the occasional MRI. Maybe the hospital I go to doesn't have a PET scan but then I worry that I might be missing out on the best scan to find mets. Does anyone have any advice? Should I demand a PET scan even if I have to go to a different hospital than the one the MO is affiliated with?
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I think it is reasonable for you to ask your doctor why he thinks you do not need a PET scan. And, under what conditions he WOULD order a PET scan for you. Your MO works for you, and you deserve to know why he chooses certain tests and treatments. I've watched all those TV medical shows, haven't you, where the interns have to justify their diagnoses and treatments? Your MO was trained in med school to give those answers. :-)
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I am going to ask my mo about ordering a PET scan, if it's because the hospital doesn't have one that's not an acceptable reason. She'll probably tell me it isn't necessary because the CTs and Bone Scans can detect progression just as well. I'll have to go in there armed with the differences between the scans and why a PET might be needed. What we have to do to get the treatments/tests we need and deserve.
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My doctor only just ordered a pet scan because of mets, my insurance denied it, my doctor fought it, and insurance denied it again.
I swear between stingy insurance and incompetent doctors, they are going to kill me. I'm going to university of penn from now on.0 -
My insurance denied a follow up PET scan also. Said I had to have MRI's or CT's or bone scan first to justify another PET. My MO prefers the bone scans to check for progression since I only have bone mets at this time. I'm not really comfortable with that since my MRI's show more mets in the bone that the bone scan didn't pick up. We are doing MRI's next month to check against the MRI's from about 6months ago. I think these scans are challenging whichever way your MO goes. she says she is looking for the big picture of what the mets is doing. I see so often with others on here, how one type of scan shows things that another type of scan doesn't. I'm learning to roll with it and not get so uptight over these scans.
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This insurance thing has me very worried too, as I head into the world of medicare next year!
Bethcon1 ... do you mind saying who your insurance company is?
I hope this new health system isn't all about rejecting important scans for the chronically ill, like us stage IV folks. I'm wondering if this means they are tossing us aside, so to speak, as our care is expensive! Ugh.
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Aetna. I never had an issue with them until I needed a pet scan. I had a bone scan first, and that showed 1 spot on my spine. Then I had an mri which showed 2 more spots on my spine that weren't picked up by the bone scan, then I had a ct scan that showed yet another spot, plus a fracture, and a spot on my liver. Every test I get it's just more bad news.
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Wow, so sorry to hear, Bethcon1. Thanks for sharing your insur. company.
When I went for a second opinion at Dana Farber in Boston, the MO there said he has stopped using bone scans for checking progression because it's almost impossible to tell the healing bones from the active mets - said both show up & look the same. I've not pushed for a bone scan since, but have had mult. Pet Scans, MRI's & CT's!
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As to the New Medical changes and what it means for us Stage 4 ladies, I suggest we all talk to our Mo's, Ro's, PCP's about the changes that are coming. I am only repeating what I was told and shown by my Mo. I hope that those changes don't effect us in a negative way, as we need all the help, medications, diagnostics tools that we can get.
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Hi all. More bad news to add. It looks like the mri showed new mets on my spine. They are comparing to my old mri done in january and they will let me know next week. They are going to start me on Zometa. I have also been having blurry vision on and off so they want me to see an opthamologist. They might be changing my whole treatment plan and also its possible I'll need more radiation. This sucks! And my MO's PA is leaving the practice and she was the one I always saw and talked to and made me feel better. She explained everything so much better than my MO and actually took time with me. When it rains it pours
sorry for the vent
Deyla0 -
I'm still waiting for them to put me on something. Is zometa a pill? They've known about this for weeks and they still haven't done anything yet. I go to my new oncologist on tuesday, I hope they start some kind of treatment asap. Right now its just sitting in me, growing. Ugh.
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Beth Zometa is a infusion.
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Hello-
I don't post very often, but wanted to know if anyone has been in a situation similar. I was diagnosed from the get go in Dec 2012 with mets to sacrum, S1 & S2, as well as mets to T9 and 2 small areas on left side ribcage. These areas showed up on a PET scan that I had in Dec 2012. Instead of surgery they opted for chemo immediately. I had last treatment of TAC on 05/01/13. I then had CT scans on 05/23/13 and it showed "ill defined sclerosis" within T5 as well as left ribs and "mixed lytic and sclerotic changes seen to sacrum". My MO stated at this time that it appeard that areas were still there, but improved.
I then had my mastectomy on 07/25/13 and pathology came back completely clear even the area of tumor showed up negative for malignancy, so I was happy b/c appears that chemo did it's job.
I was then refereed back to RO who seemed to think it was a good idea to radiate area post surgery to prevent recurrence...even though it has already moved to bone. This did not make since to me. My MO was against this and they went back and forth letting me know that in the end it was my decision but neither would agree on how to proceed. RO then asked me to do another PET. She said that if my METs were still there, then we would not worry about radiating, if they did not show up on PET we would go ahead & Radiate.
I had another PET on 08/15/13 and it shows NED. All of my physicians are excited and to be honest shocked that I responded so well to treatment, but I am still scarred. MRI was showing that everything was better but still there plus new area on T5. I asked my MO and he smiles and says don't worry...look at the PET scan... Am I wrong to worry? MO now thinks I should radiate.
In the end I will take my little pill, do my radiation like a good girl and try not to worry, but I am still scarred. I am grateful for a little more time with my babies, but scarred.
Hope everyone is well...Thanks for listening... Jena
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jena- Congrats on the amazing news! So happy for you. I have not been in the same situation, but I become very anxious when I think there is disagreement among my tumor board or when I feel that a provider has changed his/her mind. I always feel better when I get a solid understanding of what information they have weighed and how they have arrived at their decision. Maybe some others will weigh in but I am wondering about a timeline about how quickly they can see treatment response on the different imaging. When was the MRI given compared to the PET? I know that my MO has said that comparing PET scans tell her the most diagnostically about my treatment response. i know we will always be scared on this journey, but maybe you could generate a list of questions that you think of or people in here raise and get them answered by your MO so you feel 100% confident with this course of action and can truly enjoy your good news.
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Jena, wonderful news, so glad to hear about your pathology, especially, wow!! What are they talking about radiating, your post surgical areas? If so, my understanding is once metastatic, no need. Just watch for local recurrence. The aromasin inhibitors should help keep the ca at bay in the bones, too. I also understand, if you are premenopausal they often recommend removal of ovaries. If I were you, I would seek out another opinion at a major cancer center.
If they were talking about radiating your spine, I've been told that's usually offered when it becomes painful or threat of fx (as in my case). I've also been told that you can only radiate the same area of the spine once because the spinal cord is "unforgiving"; but recently heard there was some possible variations to that from another woman on the boards.
Hang in there, sounds like you are doing great.!!
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Jena, radiation is a good tool for a mop up but in your case there is nothing to mop up. I would seriously consider not doing the rads as they do bring with them damage to your lungs as well as other tissue in that area. They are a good tool but at this point not necessary..........I am not a doctor but I know if I were you I would choose no rads.
Yay!!!! For your wonderful response to the chemo! That is truly amazing! You didn't say which little pill you will be taking but always remember, even though they are small they are very powerful.
Good luck with your decision.
Love n hugs. Chrissy0 -
Great news on meeting NED!
I would get a second opinion. I think some doctors are inclined to do more depending on how well they think a patient can handle treatment. I had two opinions regarding radiation after I was NED and both said to go ahead and do it, that is, the benefit would outweigh the cost. I was told there would be damage to the lungs but that it was reversible. I also had respiration-gated rads which would minimize radiation to the lungs and heart.
It's hard to say whether in the long-run this will have proved to be a good idea. But at the time I was only thinking I wanted a few more years to be with my 7-year old.
Good luck in your decision-making.
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Thanks for the advice guys. I'm going to go ahead and get a 2nd opinion. I should have been more specific...sorry..they want to radiate left breast and lymph nodes. My MO was against it in the beginning since i am already stage 4. Now that there's NED, he thinks that the benefits outweigh chance of possible damage. He is the doctor,and i know he knows best but I don't think it makes sense b/c i didn't even have lymph node involvement. Had to have moved through blood...right? I am on tamoxifen Chrissy and yes syrmom they will be removing overies soon. I have already had some radiation to areas that have now become necrotic.This type of radiation seems sensible...you have a target. Anyway thanks for understanding and keeping me from second guessing these doubts. If the other Dr is in agreement i will do it,otherwise i am going to tell them no. Thanks and have a great weekend.
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How many are in stage 4 and are NED for years? I am sosscared of my life at 32 and my 5 kids...Wish there was a cure
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NED, 2 years. Yes, it is scary, especially in the beginning and as the mother of younger children, it's even harder. Wish there was a cure too but for now, we work with what's available and hope that more treatments come down the pipeline. Thinking of you and please know that this is a great place for support and comfort.
Caryn0 -
Outlaw I've been NED for nearly four years. There a lady who used to post just once a year on her cancerversary and she did that for 19 years........there is definitely hope of being around for a longtime.
Love n hugs. Chrissy0 -
What a difference a day and a doctor make! I got my second opinion yesterday and I feel like a new person. My original oncologist (a radiation oncologist who felt I didn't need a medical oncologist, so he was my one and only) had basically told me that my chance of 5 years survival was close to zero, that the likelihood of 4 year survival was minimal, and that scans were a waste of time and resources. The way I'd know the treatment wasn't working was if I had enough pain to keep me awake more than 4 or 5 nights in a row; then we'd do xrays and possibly more radiation for pain. He told me to have my hospice care coordinated now so that I wasn't doing it under emergency circumstances. So, I've been doing my best to stay positive and upbeat and just deal with it, and for the most part, I've done pretty well. But with each passing day, week, and month, it's felt like time is moving so fast and the clock is ticking.
However, yesterday, I saw a medical oncologist. He's agreed to take me on as a patient through the public health system, which means that it will be free. He was appalled at the "no scans" policy, found it hard to believe I haven't had a blood test since February, and have been given such a dire prognosis. He has 10, 12, and 14 year survival patients who are still doing well. He said I don't need to coordinate hospice, I need to get scans and blood tests, which he's organised for me. He's up on world-wide clinical trials and state of the art treatments, and said there's no reason to feel that this beast can't be kept at bay for many many years. He thinks my prognosis is quite good and with new treatments coming on line at such a rapid pace, that there's a good chance for a long life.
I feel like a new person! I thought I was staying positive and hopeful, but now realise what a huge burden I was carrying. It's going to be a bit scarey to have the scans; hoping they bring good news, but realising they may not. But even if the news of the scans isn't good, he feels that there are plenty of other treatments to explore to get the cancer back in line.
As to Femara, I've been on it since February and other than fatigue, don't seem to have bit problems. I have a bit of joint/bone pain, but I also have oseoarthritis, so it's hard to tell which is which. Ibupropen keeps things under control. I also have a Zoladex implant monthly as I was pre-menopausal. Between the Femara and Zoladex, the hot flashes can be a bit much, but given that it's been winter here, I just look at it as something to help keep the heating bills down. And the flashes are subsiding. I've tried morning and evening Femara. I'm doing mornings now and dealing with the hot flashes and fatigue during the day time. I don't know if it was the Femara, Zoladex, or what, but when I was taking the Femara at night, I was having to get up like 5 or 6 times a night to hit the potty. That was making me even more tired! Since I've switched to mornings, that has abated. That may be just because the menopause symptoms have abated; not sure. Anyone else experienced this issue? (Bit embarassing to discuss, I know!)
Hugs and prayers to all of you!
Terre
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Terre - I was so happy to read your post. What a big difference!!
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Terre,
Doctor #1 needs to be flogged! Thank goodness you found doctor#2. He seems to be the right one for the job. I am so glad the gloom has lifted.
Caryn0
