How are YOU monitored for Recurrence or Mets?
Comments
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How are they going to treat the Bursitis? Do you know yet? I've got it really bad in my knee and I also have BONE METS.
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How are they going to treat the Bursitis? Do you know yet? I've got it really bad in my knee and I also have bone mets.
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Ladies - i came across this thread and catching up with the lists. Can someone tell me what TM's are & what do I look for on my final pathology report. More to follow. Thanks.
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warrior - If you are asking me - the trochanteric bursitis has been treated with physical therapy, and thought to have occurred with the muscle tears, which have since healed (injury was Nov of 2014). I continued PT for the better part of a year, just stopping recently, and it was a combination of strength exercises, heat, and myofascial release massage that was done in the Sports Medicine rehab at the University of South Florida. I still have discomfort on some days, but it is much better. I find that being mobile, and sleep position can impact how it feels day to day, but it has gone from quite acute to very tolerable.
TMs are tumor markers, a variety of blood tests given to detect metastatic activity. Many oncologists don't use them, others do, as they are reliable for some patients, but not all and inflammation, among other things, can give a false positive reading. Here is some info on the different kinds of TMs:
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No scans is bs. I complained that my left armpit (BC side - double mastectomy in 2012) looked "puffy" to me. I was reassured it was scar tissue, fluid....blah blah. Both primary care and onc did not "think" it was anything. Thank God my NURSE scheduled me for an US! It was back and on the move or at least trying to. My left armpit axillary nodes caught and were holding ground. 10/14. Rest of scans were clear. I did not have radiation last time so I did surgery, hysterectomy (get this crap out of me - it's STILL ER +) and 25 rads. Surgeon was confident she got it all as she biopsied fat tissue above below and grabbed the 4 nodes outside the axillary sac or whatever they call it and they were negative. Now I get 4 rounds of Taxotere or 6 of Xeloda next month. Going to see onc and flip a coin I guess. Arimidex is my new best friend. That and I start Zometa 2x a year to prevent osteo and there are early studies showing it can help lower chance of bone mets. If I don't get a scan later this year...and every year for quite a while (like, until there is a cure?) ...oh you bet I will have some pain or I will become one to insist!
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Wow 7 of 9. So glad you got someone to u/s you and you are on for tx. Best wishes!
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Hi Balthus, TM's are tumor markers. Its a blood test which is done following treatments, some docs do it and others don't. It can go up which is a sign that the cancer is back but there are other reasons for it going up. Best wishes Muriel
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Forgot to say that TM's are done usually every 6 months to check on possible recurrence. Another thing to add is that some people have mets and the TM's are normal!!!!!!!!!!!!!!!! Another reason to freak out and reach for the anti-depressants. Thank God for these boards!!!
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My MO doesn't due TMs. I have a lot of inflammation and this would be so skewed.
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Hi april. I agree with most of what you said except its NOT the way breast cancer is its the way the protocol is. As you said it goes from stage 1 to 2 to 3 to 4. Why can't there be a way to detect its progression before stage 1 goes to stage 4?? You are correct in saying at present there is no way but this needs to change. Many other cancers can be monitored for progression why not breast cancer? It makes me really mad. We need not just accept this. In so many ways breast cancer research is behind.....
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dtad, I said it doesn't go neatly from stage to stage. But, the fact remains you are right. They need to learn more about how BC DOES progress and make sure that people do not do so. They are definitely behind considering they are so well funded in terms of cancer types. But, alas, they spend it all on "educating" women on BC rather than where it is needed. A cure or a way to keep it from coming back ......EVER.
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Hi April oh sorry I miss read it! But the bottom line is we agree that we have a long way to go in this area. Take care....
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Lis, Had the biopsy done yesterday. Ct guided needle biopsy. It wasnt too bad, I dont remember much of it. Im pretty sore today but thats all. Anyway, they said they should have my results by Monday or Tuesday so I get to worry all weekend....will let you know how it goes.
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Pray for good news possible for you, themomoo!
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I just returned from my follow up after biopsy. Breast cancer has spread to my right lung. They actually think it has been there for awhile and that the Herceptin was not working. They are checking to see if I can have radiation to shrink the tumor and ease the pain then depending on that I will start treatments asap. I will be scheduling an appointment for a 2nd opinion tomorrow. Im trying to be positive but having a really hard time right now.
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themomoo: I am so sorry to hear about your results. I am in a similar situation. I have a suspicious mass at my right lung. I have had 5 CT scans, 3 needle biopsies at the lung and now I am scheduled for PET Scan on Thursday. Mine was detected due to CT Scans due to my pneumonia [Oct through March]. How was yours detected? Lisa
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I have had pain in the rib area for months and they finally did a pet scan which showed the mass in my lung. They kept insisting the pain was due to the reconstructive surgery I had. They actually admitted today that they missed it in the xray I had last summer when I first told them about the pain. I really hope your mass turns out to be something else.
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So sorry themomoo
Once you have a plan in place, you will feel a little better. Until then, huge hugs.
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(((hugs))) hate that you are deingvwith this, and that they missed it on the x-Ray. I hope they have aplan in place soon.
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Hope the second opinion gives you an idea of your future direction and makes you feel in control again.
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I see my MO every three months. He does routine blood work, no tumor markers, no scans unless symptoms. I am scheduled for my Mammo ultrasound and breast MRI in two weeks. I am a nervous wreck. This is the first MRI since diagnosed. Had Mammo and ultrasound last April right before reconstruction on my mx side and on good side
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Neither my oncologist or the UCSD breast specialist oncologist wanted to scan me (other than breast MRI, which picked up parts of my liver) because she said my tumor is not very large (like 4 or 5 cm) and the amount of cancer in the 1 lymph node was relatively tiny (4mm). Combined with a low oncotype, I guess the possible benefits of pet scan or bone scan are not worth the radiation exposure. Given that my brother has stage 4 breast cancer, I thought they would push more for scans. By the way, I tested negative for 17 breast cancer genes (2 tests were done), and my brother tested positive for BRCA2. A unique situation but by no means a situation anyone wants to be in.
She also doesn't believe that tumor markers are worth tracking, because they are pretty unrealiable. My brother's tumor markers went up after he had a positive response to taxol, so it doesn't always match up. So I will have a liver panel done every 4 months.
Having said that, do not listen to what radiologists have to say. The one who did my biopsy didn't actually feel like it was necessary because "it's going to be benign". He actually asked me if I still wanted to do it. Wonder what he would say now.
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my onc also doesn't believe in tumor markers. She sees me twice a year and orders an annual ultrasound of both sides. Meanwhile, she says be on the lookout for met symptoms that are both persistent and progressive. My gene test found an unknown variation of the BRCA gene. One day I might find out this means something.
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I get no labs, no scans unless symptoms (I've had one bone scan for clavicle pain that fortunately turned out negative). I think it's total bull**** that they haven't figured out a reliable way to follow us all.
Thinkingpositive - I remember my first MRI post (looks like I'm about a year ahead of you
- it was seriously no fun. I get them once a year for my pre-meno, super dense breast I have left. Hang in there, I have to say ativan was my friend during those couple of weeks, but I was glad for the surveillance. I did also have a finding, which turned out fine, but was quite the roller coaster.
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Yes....it does feel like that! Our diagnosis is similar but just one node. I didn't have adriamycin, but had bilateral mastectomy with sentinal nodes,Taxotere and Cyclo. X4 rounds, radiation x 33, ovarian shutdown and arimidex. I pushed for aggressive treatment. Even still im obsessed with worry of mets. I hope this gets better!
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Hello, this is my first day as a member of this post. I am one year out from Metastatic BC to liver, lymph nodes, bones and chest wall. Only had chemo and now on Herceptin and Perjeta. My doctor want me to have a CT=scan of the stomach, chest and pelvis, but I am extremely reluctant due to the massive amounts of carcinogenic radiation. Does anyone have any ideas about what constitutes effective and accurate alternative testing? I need to know where I stand right now with my cancer status, but am very uncomfortable with the idea of learning about it only by means of exposing myself to vast radiation. Any ideas?
Also, has anyone had a really bulging stomach along with the MBC? Mine is sticking out like I am 6 months pregnant, and I'm very concerned that this is significant. I have absolutely no symptoms whatsoever, am otherwise lean, and don't have "blockage" or anything like that.
Thank you in advance for any insights you can lend.
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Annawan-
We want to welcome you to our community here at BCO! We hope you find the support and advice you're looking for, we're sure other members will be along to offer their insights.
The Mods
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annawan,
You already have mets, so I am terribly sorry that you're joining those of us who are stage IV/metastatic. Some doctors do tumor markers, via blood tests, but these are not always reliable. Even if they are, an increase in tumor markers usually results in a scan, either CT or PET. Most of us on the stage IV forum do get regular scans, either at 3 or 6 month intervals, though a few have them annually. This is the most reliable way to monitor for progression, though I understand your concerns. Please come on over to the stage IV forums for more info and support. With respect to your abdomen, have you been checked for ascites?
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Thank you so much for weighing in on my concerns. I appreciate knowing what the "usual protocol" is, however, it is as I suspected. I guess I have done all the research, and am now just circling back to where I began: I am scheduling the PET/CT now. I will have to find out how to "come over to the stage IV forums," as you suggest.
I did my own research, and came to the whole new world of the ascites possibility. I am very aware of it, and of course, concerned about that being the case. I hope that my upcoming scans will shed light on what is going on there.
Thank you very much, again.
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I've just finished my main treatment (chemo and rads) and now will meet with my oncologist every another month and will have an annual ultrasound and manmogram.
My bone density will be tested every 2 years and intermittent blood tests. I won't have any CT or MRI scans, unless I have symptoms. My GP told me that the U.K. Is very reserved with scans, the US is pro scans and Australia falls somewhere in the middle.
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