If you are not Stage IV but have questions, you may post here
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Now that we all can read our test results online, the days of, "It's fine," should be over. The nurse should have read the entire report to you and explained the alarming details. Incidentally, I also went online and found the exact same, non-scary information as Zarovka. I hope you will "encourage" your onc to direct his nurse to always go over every single detail.
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Hi All, Just want you all to know how much I appreciate your replies...
You are like a lifeline to me....
The onc. called today and he told me that he is not at all concerned about my CT results...so it felt good hearing it from him...
I still have to have my bone scan on Monday...but for now...will try not to think about it...but. I know I will be back here all worried all over again!!!
Super tired because I didn't get enough sleep last night, so going to my 9 yr off to bed soon - so I can try to relax and sleep...
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Scared - awesome!
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Hi Scared-
I would have done the exact same thing as you re: googling. But why is a nurse giving you a scan result instead of a doctor? Is that what happens at some places? Only my doctors have given me results. So glad for that no evidence of mets! Hope your bone scan goes well
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Scared, I had ground glass nodules in CT before, oncologist repeated CT three months later with the intent of ordering PT scan if they were growing. As two out of three were the same, and one was gone, we just scratched to "something not worth worrying about".
OTOH, I am going this coming Wednesday for bone scan. New pain in breastbone, lower thoracic spine, lower ribs and right hip bone. I hope it's just osteoarthritis acting up. What gets me a little confused is that they will only do the uptake scan three hours after, no scan right after the injection. Last time I had a bone scan they did both.
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Hi All,
I am in the totally freaking out stage. I have had very bad back pain for just over a week (that's what I get for dancing the night away). My Onc ordered a bone scan as I have a history of crazy SI joint stuff. The results came in over the weekend. Seems my SI stuff hasn't changed and is probably the cause of my back pain but there are 2 spots on my ribs. One is on a rib and one is near or at my sternum. The radiologist has reported them as not suspicious looking (or something like that) but my Onc says "I can't be sure" so it is off for a PET now.
I don't have a very good feeling about this. I am almost exactly 3 years from initial diagnosis.
Any prayers or supportive thoughts would be appreciated. The waiting game is the worst.
Thanks,
Andrea
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Awnie - You are getting thoroughly tested by a conservative oncologist, but I suspect you are okay. If not, there are good treatments for bone mets. Hang in there and let us know what happens. There are a lot of options however, this goes for you.
>Z<
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Seachain - I'm sorry you're having to deal with those new pains...and the all the anxiety that goes with it.... I had my first bone scan today and it was done the way you described - scan done - three hours after the injection (no scan right immediately after). I hope that helps....
Georgia - thanks for the good thoughts... Yeah - I asked my RN - because my MD had not gotten back to me. All she said was "it was fine". But - what freaked me out - was when I read the posted results in my health portal...
Andrea - my thoughts and prayers are with you....
Z - your support on here is amazing....
Question - for the group - so - I had my first bone scan today - after the 20 min general body scan - the tech came back and said he had to "take 3 more pictures".
For one of these - he had me turn my head all the way to the left - while still laying on my back.
But - he didn't ask me to do that - for the opposite side.
So - I'm wondering - if maybe he saw something suspicious in the initial pictures that prompted him - to take another picture - with my body in that weird position (with my head turned all the way to the left).
Then - he took 2 more pictures - of my trunk area (this time he did both sides).
So - I'm freaking out because I'm not sure why he specifically wanted that view with my head turned to the left. I'm thinking maybe he saw something suspicious and needed another picture taken - with that specific view??? I'm so tired of being so scared (like my user name).
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The techs will do more pictures when they anticipate the radiologist will want to zoom in and see something more clearly. But some day you need to look at these scans yourself. It's a wonder they take only 3 more pictures.
You are scared for good reason. It's not this scan or that conversation. In this space you live daily with the possibility that the floor will simply drop out underneath you. That said, you are doing really well and even the worse case outcome for you is winnable fight. Let us know how it goes ...
>Z<
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Z - that's exactly what I'm afraid of - that they saw something that they think the radiologist will want to look at more clearly.....so that's why the extra pic of my head turned all the way to the left....
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Scared, the tech may have seen degenerating discs or signs of arthritis. I've had injections both ways, too, so I don't read anything into it anymore. I had a bone scan that lasted an hour and twenty minutes!! They actually let me up to go pee. That freaked me out. Then I've had many scans that go in for better shots and the last one this February had me sit on a chair and put my arms and hands on the scan bed!!! I know breast cancer doesn't go down an arm so I figured it was something else. I found out I have arthritis in every joint in my body including fingers and toes!!! I KNEW I was in pain!!!
I've had CT's where they say "that may or may not be real". Go figure. So a repeat scan will often have a slightly better view and discount the first one. For instance, my last CT showed a thickening in my frontal lobe that may or may not be real. As well, a thickening of my colon which may or may not be real. I just had a colonoscopy to see if the colon issue is "real" or not. Oh, what we have to deal with...sigh.
We get your fear. Trust me. We've had the other shoe drop and we know it will drop for others. This may sound weird, but I was kind of relieved when my other shoe finally dropped as the 8 years it took to recur were scary ones. Like you're going through right now. I just knew I was going to recur and finally did. It was easier to deal with than I thought. Now I know I'll be watched like a hawk.
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scared67 - during my last bone scan the tech did the same thing. She had me turn my head for an additional picture. When she finished I expected her to have me turn my head the other way and when she didn't I asked her why she wasn't doing the other side and she said that the machine is scanning from underneath so the other side was captured from the first picture. I have also had techs come back to take additional pics of other areas as well. they may need a different angle or depending on what facility I'm at for the scan they just follow different protocols. I always fret when I notice any variation in a procedure and then I ask questions. they are usually very nice and answer the best they can. Sometimes they say they don't know why - just that the direction was in the order. I then follow up with my MO.
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Thanks Everyone!! Your posts definitely helped get me thru these very scary scan experiences.....
I finally got my bone scan results no sign of mets!!!
I still have to do another follow-up CT in 3 months because of the nodule...and am already nervous about that but glad to have some good news for now..
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YaY for your good news, Scared!!! Many, many times something like a nodule is noted on a scan and never seen again! Hoping that will be your situation! Enjoy the holiday weekend -- celebrate the clear bone scan, and try to stop worrying!
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Yayyyy Scared!! Celebrating with you! Ride on the positive, it can overcome the negative! So happy for you
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Great news on the bone scan results, Scared! Yay!
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I'm glad for this thread to post my question. I don't have stage IV but since joining this site I read many posts from amazing women stage 4 who say they are living life, working, etc.. with triple negative I know there are target therapy to treat stage 4 and some women even have NED. Does their ability to overcome stage 4 is their strong emotional well-being, physical, their lifestyle, eating habits, chemo drugs, alternative treatment, or a combination of everything? Yet I still see a few cases on the news or in real life where the women have stage 4 recurrence and Dr said chemo is no longer working for them. So what does this mean? WH to target therapy drug? I can understand if the women chose not to continue with chemo or sometimes cancer cells are resistant to chemo. Have anyone knows about Fucoidan, a seaweed/mushroom herbal that were tested and proven in labs to kill cancer cells. They originated from Japan their known all over the internet but not many people know how or where to order. I just happen to have their website and phone number if anyone interested.
I have a supervisor whose wife was cancer free for eight years. Recently she got dx with stage 4 recurrence and her doctors said no more chemo no more cure. So she just died yesterday. I thought with the new and improved drugs people are surviving with bc. Am I missing something here? All the best to you ladies.
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Houston, didn't your supervisors wife want to try the mushrooms? Personally, I trust proven medicine but supplement with minerals like Magnesium and vitamins like B12. When my oral chemo stops working and I get progression, I will move on to an IV chemo until those no longer work for me. It depends where the mets are in your body as to how you can live "normally". If brain mets, you'd have different issues than with say, bone mets.
We are surviving longer with current meds, but even diseases like diabetes and heart disease cause death still. The body can only take so much of a treatment before it begins to break down and you have new issues. Some chemos cause heart disease for example. Starting new unproven treatments is difficult to accept unless it's a last resort. Doing so is like going back 40 years when it was all experimental. There are now proven treatments but remember, there is no cure for stage IV.
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Sorry for posting so late and not last Friday. All kinds of issues. The most important being that the nuclear medicine didn't fax the report until half an hour before my appointment. And me being all caught up in house renovations. By myself. I know. Crazy.
Anyway. The old suspicious spot (that appeared a little over two years ago) on the first rib - actually sternomanubrial joint - is still there. Still with uptake but didn't grow. There is a second area of uptake that the scan has picked, on the cervical-thoracic junction in my spine. It is under 1 cm and the report says "probably stable osteoblastic uptake". The oncologist is a little worried because, even if I do have osteoarthritis in my cervical spine, that spot never showed it, not before and not in recent Xrays or CT scans (I had that in the past 6 months). So as much as normally when the report says "stable" then it's most probably arthritis, the fact that it has appeared in less than three months from my last CT scan is a concern for him.
He said we will do a PET scan in three months to see if there is any growth and if it is, "we'll go from there", if it isn't, that means it's probably arthritis.
Soooo... hurry up and wait.
I hate this game.
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For those who didn't start out at stage IV, did your MO ask you to have periodic body scans? Like every 3-6 months, or only if you are having pain somewhere?
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I just watched for symptoms. Having a scan every 3 months would probably cause cancer. I was 7 1/2 years NED so that would have been 30 scans! I had 5 biopsies in those years and some scans of course.
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Thanks Barbe, makes sense.
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My doc also just watched for symptoms and scanned as a last resort. The docs have to keep in mind that over scanning can be a huge problem as each time we are scanned we are absorbing radiation which is dangerous in itself.
Love n hugs. Chrissy
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FYI from the American Society of Clinical Oncology guidelines:
http://www.choosingwisely.org/societies/american-s...
- Surveillance testing with serum tumor markers or imaging has been shown to have clinical value for certain cancers (e.g., colorectal). However for breast cancer that has been treated with curative intent, several studies have shown there is no benefit from routine imaging or serial measurement of serum tumor markers in asymptomatic patients.
- False-positive tests can lead to harm through unnecessary invasive procedures, over-treatment, unnecessary radiation exposure, and misdiagnosis.
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Thank you for the info!
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I, too, have been experiencing crushing fatigue and nausea. Today blood work show my liver counts way too high. Next is an ultrasound. Stress? It's the human condition. A symptom should be followed up.
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KayB, with extreme fatigue could you see your PCP and rule out a thyroid problem. Many woman, including myself have this, and the fatigue is incredible until you're treated with thyroid replacement. Its a simple blood test.
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kayb - many things can cause fatigue and it's good to check them all out, including cancer. personally, i'd get a scan. stress can be a factor in triggering cancer growth.
you don't want too many scans because they cause cancer themselves, so go with your gut. but you have my permission to get a scan ;-)
>Z<
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kayb, my first thought when I read your post is that the kind of stress you're describing -- especially stress over which we have no control -- can, in itself, be exhausting. So that -- and/or a sluggish thyroid -- certainly could be at the heart of what's going on. But I also wanted to mention that the CA15-3 might be the least accurate of all the tests for tumor markers. UCLA uses both the CA27-29 and the CEA, and my local onc uses the CA27-29. I think fewer and fewer oncs are rely on the CA15-3. Also -- when you have blood work, be sure they do liver functions -- ALT, AST, and ALK PHOS -- which can also reveal potential problems.
I'm so sorry about the stress, but I also think it's great that you are aware that your body is "off" in this way. That self-awareness is really important.
Good luck with your onc appt, and keep us posted! Deanna
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My onc did PT scans every 2 years, starting with a base right after chemo. Once I reached 5 years I wasn't supposed to have any more scans. This one was warranted due to new pain that didn't go away after 2 weeks, and at the recommendation of my spine and pain management dr whom I see every month. I was actually "upgraded" to seeing the oncologist only once a year, and he said he would see me once a year until I will be 10 years because of positive sentinel node with 3 mm micro-metastasis.
kayb, I also had the alkaline phosphatase shoot up a couple of years ago right before the PT scan, my endo also ordered a gall bladder and liver ultrasound but everything was ok (well except that uptake on my first rib). By my understanding a high alkaline phosphatase may be the sign of metastasis but the crucial word here is MAY. Anyway, stress WILL get your liver go haywire, it's the first organ that does that together with the thyroid.
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