Catching Mets Early? Docs say it doesnt matter?
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Sherryc ~ did you say Zometa was being used to prevent recurrence in pre-menopausal women? Because Dr. Google is saying the opposite? Says there was no benefit unless you were at least 5 years post menopause??0
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Sorry ... just saw your post! .. i will definitely check out!
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Susan yes pre menaupausal but read thru the thread I posted.
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Susan, no mets do not show up on a DEXA scan. I had one a couple of months before I broke my back and not only did they not show up, my DEXA scores improved a bit. Go figure.
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Sherry ~ Hmmmmm....it seems I would have to do ovarian suppression along with the Zometa in order to really benefit since I am still menstruating?
Sandilee ~ that's what I thought. Go figure indeed!
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Sherry (and Susan)my onc was going to put me on Zometa but then a study was presented at the San Antonio Conference (2010) months after she told me said it didn't prevent bone mets for premenopausal women so we changed course… now a year later another study presented at the 2011 San Antonio Conference says the opposite. I haven't discussed the possibility of going on it now with her. Not sure if I should even bother. This is a moving target of what does and doesn't work.
Barbe and Sherry yes I do find that *article interesting regarding low grade having late recurrence more often. I think that there are a couple of reasons.
- High grade tends to be treated more aggressively (low grade sometimes doesn't get chemo).
- Chemo tends to work more often on high grade
- High grade has already reoccurred earlier.
Still the jist of the article does say that most tend to think our recurrence chances are higher than they actually are. Hard not to think that way when we lose so many cisters here so often.
*Do note that the article doesn't account for herceptin and the aromatase inhibitors.
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I wonder if we have existing bone issues that give the mets a place to start? Any thoughts? Like damaged vertebrae, collapsed disks, etc. Would that be a logical place for mets as the area is already compromised with unhealthy bones?
I am a very black and white person with very little gray area. It causes issues in my personal life as I still haven't got social filters in place after almost 54 years!! I normally shoot from the hip and don't blow smoke up anyone's butt. If that makes me sound harsh when I post I apologize, but it's the only way I communicate.
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Barbe - here is the info that appeared on BCO concerning Zometa from the 2011 ASCO meeting. I was osteopenic for 10 years, but stable, prior to chemo/hormonal therapy. I just recently had a bone density scan done and it showed increased loss. My MO gave me an injection of Prolia to treat/prevent this bone loss. I believe his theory is that it is both necessary to prevent any further loss, and that treating the current loss may prevent bone mets from having a foothold in already weakened bone.
http://www.breastcancer.org/treatment/hormonal/new_research/20110603.jsp
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I just got through reading the Zometa thread. My bone scan that showed I do have osteopenia in a couple areas. So am I more at risk for cancer to land there? Like you are wondering barbe...it seems like the Zometa works by strengthing the bone and not giving cancer a chance to grow there. (my unscientific explanation of what I just read).
But then again..I'm still menstruating so would need to get O/S in order to benefit...but then doesn't O/S cause bone loss? And bring on a host of other problems? My onc didn't seemed too concerned about the osteopenia. Says we'd scan again in a year or so and see how it's doing...meanwhile let's check the vitamin D levels and make sure I take calcium supplements and exercise.
If Zometa strengthens the bones with minimal SE's...why wouldn't they give it to everyone anyway?
For the love of all that is holy. What's a girl to do?
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I think someone misunderstood the question when they said that finding mets early saves lives??? It is true that the earlier breast cancer is found that in the long run it can mean better outcomes for the individuals but I believe it all has to do with the aggressiveness of the cancer.
I think there is a difference in the QUANTITY of a person life if they find your disease early. But then you don't know for sure because who is to say if your cancer isn't aggressive if you couldn't have a tumor sitting for years that you don't don't know about? I guess that is why it's such a hard question.
What I was told was the longer the time between end of original tx and mets dx has an impact on how aggressive the cancer is. The longer the time the better chances you have of surviving longer with your mets.
That theory makes sense if you think about it but who is to say that is true. Bottom line if you are an early stage and something is bugging you and you want a scan all you have to do is complain of symptoms. As long as the doc has symptoms to write on the order for the scan, it gives the tech direction on where specifically they are looking for a problem and satisfies the insurance requirements for the scan being ordered. If all else fails then the ER is the place to go with your symptoms. I don't recomment this way but if no one will listen and you are truly afraid something is wrong then do what you have to.
I don't think onc's order scans on a regular basis post breast cancer even theough they should. Most give you a quick once over, some take blood work (not all) and off you go for another 6 months to a year. Hopefully most people can live in that blissful world! I will say this as someone dealing with Stage IV. Don't waste your time trying to analyze every ache and pain thinking it is cancer. Take your life back and LIVE it! Worrying about the what if's is something you can do if the worst occurs but in the meantime, try and go back to your life you knew. Enjoy and fret the mets part later down the line.
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I live in Canada where the health system is a bit different...
I was completely symptomless... until I discovered a lump during a self exam. My mammogram a few months previous had been "negative". I am an active person; in the week leading up to my surgery, I ran 25 miles and cycled another 20. I felt great. It was hard to believe I had cancer.
Although pathology indicated that I was "early stage", I was offered "the works"; dose-dense chemotherapy, radiation and Tamoxifen. Prior to starting chemo, I had a bone scan, a chest x-ray, an abdominal ultrasound, and all my blood work was re-done. I had several physicals, including breast exams by my MO and my RO. All my tests came back "clinically negative for distant metastasis".
Now that I'm finished active treatment, I will be followed up every three months for the first year, every six months for the second year, and then annually for the rest of my life. My first mammogram will be in six months, will be repeated in another six months, and then will be annually for the rest of my life. In future, every time I see my MO, I have to have a CBC done prior to the appointment. And I HATE NEEDLES!!!My mother - who has had two mastectomies - is being followed up in the same manner. Even though she has had the mastectomies, she is still called back every year to have the remaining chest tissue mammogrammed. When she reached her 5-year milestone, she underwent "the works" again; a bone scan, a chest x-ray, an abdominal ultrasound, blood work and an MRI... which revealed extensive arthritis in her spine, but no metastasis.
Neither of us will never be discharged from the cancer centre. We will be "tracked" for the rest of our lives.
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This was great topic for conversation. I have just finished chemo and will have follow up appt. with my ONC in early April. I have spoken with her several times and asked about follow up scans/test and tumor marker tests. I have been told they do not do this and I keep saying yes but I have good insurance and I want the tests. I like my Onc. and have great faith in her and I'm pretty sure if I had a complaint she'd order the test in a heart beat. Like so many on here I too worry about those aches and pains and what is real and what isn't. I have a high tolerance for pain so that doesn't help. I'm trying to listen to my body so that I can understand what is normal pain and what might not be normal. All tests/scan prior to surgery were clean but it would be nice to have something now that chemo is done just to ease my fears.
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After diagnosis my BS sent me in for a bone scan, MRI and CT (that is standard for all of her BC patients)....there were a couple of spots ^classified as too small to identify** I freaked (this was before BMX)....both BS and my onc at the time (big gun at md andersen) said no way do you need a PET...so I had BMX and then because Onc transferred to AZ to open new satellite breast center, had to find a new onc and he didn't think I needed to bother going through the hoops at MDA, so I found a local onc. She went berserk (how nice- freaked me out) when reading records and insisted on PET to further investigate and have a baseline. I landed up getting a combo CT/PET. Do I regret it? NO. Is it a guarantee of anything? No. Did it help me at least exhale since I had never stopped worrying about it since the whole thing came up. As both the BS and onc have told me, they can get scans ordered for ANY stage. For the BS had offered me one before the BMX if I couldn't calm down, but I let it go then. I have heard the arguments for radiation danger, but the whole semi peace of mind is essential for a worrier like me.
As for distance from DX making me relax....entering a safe zone...hmmmmm, not so much my way of thinking....more like my mind fills up with other things and I remain vigilant. It really is a crapshoot. This sh*tty BC has robbed entirely too many women of their lives. Even one is too many. When I allow the fear to creep in I have to mentally slap myself and understand do not squander. I'm still blown away by meeting two friends from this board last summer at a different stage...they were honest and open and well, what I learned that day, stays with me still. It taught me that pronouncements are probably not a good thing. That life has a lot of gray areas and those can be better than black and white facts. Yet they, who have been on journies far more harrowing than mine, asked about me. Really? One had travelled from across the world and was in the midst of a six-week adventure...and there I was flat out exhausted from a three hour drive for god's sake. That was a real slap in my self-pity whiny#ss pot .
I remembered my dad telling me that old saying about the man who complained he had no shoes until he met the man with no feet. In the miracle of human spirit...none of us were complaining of shoes or feet. We all gave and received comfort. And affirmation of life. Right then. Which is amazing.
It is a mortal sin (and this coming from me who is not a fan of organized religion!) for those of us who live in a time and place with the best of the best in diagnostics to not have access when they are in pain, never mind just a nervous type like me. MBJ was not given the choice or the option. It is subpar care at its worst.
My onc has a stroke if I go in there coughing, or groan when I stretch. When I lost weight she totally freaked until I convinced her it was the result of hard work. That I wanted to lose the weight.. She worries about the entire person....mind and body. She would not be every one's cup of tea. But I see how she is with all of her patients...of all stages...and I want a doc who feels and gives a crap.
We can't walk around in bubbles waiting for the other shoe to fall....but everybody deserves a friggin fightin chance. Then they can make their choices, not some idiot with an insurance company or an MD who believes he has mystical powers to decide who gets what.
Sheesh, I am sorry for going all over the place. My heart is hurting about all of this and folks *out there* just don't understand because that's not what is *out there* in the press. They've been deluged with the damn pink ribbons and don't get the reality.It's not like it should be some constant flow of morbid ads but its a hell of a lot more serious than the toothache it can be portrayed as.
It is a race...and dammit when the frigging finish line keeps jumping all over the place. I miss my friends. Every one of em.
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annettek, some days I really miss your baby (flying) mountain goat. Seeing it made me feel brave.
otter
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LuAnnH wrote:
What I was told was the longer the time between end of original tx and mets dx has an impact on how aggressive the cancer is. The longer the time the better chances you have of surviving longer with your mets.I think this might be true because the long time recurrence is slower growing… and like the article I posted on page one of this thread states, lower grade tumors have more of a tendency for long term recurrence.
SelenaWolf it sounds to me the reason why you were offered the works/so aggressive is family history. Your mom had breast cancer, twice.
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SpecialK, thanks for the link but I couldn't read the whole article. It talks about Zometa WITH other adjuvent treatment. I've had NOTHING!!! Nothing but surgery!!! Sometimes I feel like a time bomb ticking away and other times I'm positive my cancer experience is totally over (except for my flat chest). I find that most info about "extra" stuff always seem to mention that that patients had "rads, or other adjuvent therapy"...that's not me.
So I guess I AM a gray area....
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Barbe- here is a big fat hug for the hell of it and because you are YOU! Don't ever change buddy:)
Otter...let me see what i can do about finding that damn little goat....
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AWWW I missed him too!!! I thought he was a little lamb...remember? I wondered who threw him...
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barbe - it seems to me that it could still be a benefit even without hormonal therapy because the bone stregthening mechanism would still happen. I think the mention of hormonal therapy was due to the fact that the study built it into their parameters of inclusion. I think it is a question worth asking of your docs though, especially if you have some pre-existing bone issues it is a legit use of the drug with the potential of this possible side benefit. I share your feelings of time bomb vs all is well - I think we all do depending on the day, seems to be the nature of the BC beast unfortunately.
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Annette the flying goat is back!!!!
Regarding the Zometa- the way I understand is also that if the bones are strong cancer has a harder time invading it. I figure since I did not do chemo and sometimes wonder if I made a mistake because I was in a very gray area. I'll take the Zometa especially since I had no SE the first treatment. My MO was not sure if my insurance would pay since it has not been really approved for that use. The person in charge at the office thought it would take about a month to get approved. I have BCBS and when they called it in they approved it immediatley. I discussed it with my dentist as well (because of jaw bone necrosis) and she saw no problems with doing it and encouraged it.
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Annette - appreciate your heartfelt sharing. I agree that there is no better time to get cancer, and if we want a test, we should have that right, Everyone, insured or not. I did not 'meet' MJB but can tell she presented everyone she knew her enduring spirit.
Have read every word of this thread. I don't like to see that doctors rely on 'probably' and say things like, 'well, it should be like this' when it COULD be the other way because I am me and this is unique to me.
I fell betwween the cracks because I did not choose chemo or radiation or the prescribed mx... just a excisional biopsy of the mass and CN biopsy. I wanted and needed scans and tests in order to feel the peace of mind it could give, even though I realizze they are simply false security. But they can reflect changes when other scans and tests are done, much like the pap test. I just needed them and it took three full months after surgery to get them, not right at all but that was the path. I found an integrative md / pathologist / nuclear med dr who ordered them for me. Do I think I am clear? No, I don't. I 'feel' like cancer cells are all over inside of me, so I am acting aas if they are and doing all I can to remedy this with healing. My daughter reminded me today, don't own the cancer, it is not 'mine' nothing in the world is mine, and the cancer is not either. I wrote a novel that was about not owning the cancer and here I am lately owning it all over the place. We are what we say, what we envision.... and I do not want to be the cancer. I just want to heal it, let it go back to normal. But at the same time, I cannot stop reading about it, wanting to know more, hear stories and hope, do the scans and tests, learn how to heal, so it is literally seeming to 'eat me alive'. Therefore I hear the ones with Stage IV who are saying, go out and LIVE! But I also hear the ones who are saying, I would want to know so I would llive differently toward what could be the end. That means one thing to me. Perhaps I am not doing the work I would want to do forever in designing websites? Because that is the first thing I would change. Hmmmm. I just want to help people but in a way I may not be brave enough to do.
I am going to keep getting the blood tests, anything they offer, but I don't think it would make a difference much in what I am doing now, I am hitting iit with all I can afford now, insurance not paying for any of what I choose, only most tests and surgery.
Thanks for listening.
Barbe - I really like to read your posts, just so you know I only see the positive and realness of you.
SherryC - thanks for that link.
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Great thread! FWIW, my onc did a chest x-ray and full bloodwork panel at my first visit. I will now have bloodwork every other visit and scans for any areas of concern as needed. Would like a bone or PET scan but am not sure it would really ease my worries any...
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Awww... there's the baby goat again! Thanks, annettek.
I don't really think it's flying -- I think it's taking a giant leap, knowing Mom is on the other side of the chasm and everything is going to be okay. Either that, or the goat is leaping for joy, or playing with complete abandon. It sure does make me feel more, um, ... more optimistic, I guess.
I promise I won't beg for the baby goat anymore. You can put your regular avatar back any time you wish. I don't think I ever told you how great you look in that real pic (the one you had up until a few hours ago).
Maybe I need to stop reading about unexpected, undetected recurrence of cancer.
otter
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this is a great thread. been at this for 10 years; initially the first few years had scans. after three years had a good discussion with onc regarding keeping kidneys healthy...and the need to cut back on scans. last PET was 2008 because of broken ribs..(not cancer) and that is the last scan. i do blood work every 6 months; including tumor marker. the last year my marker has been elevating and in january was 34...up from 22. next appt is april and will do blood work early april. all other blood work good and no symptoms of cancer . still feel really good.
for me, i feel like if i happen to get mets; they will show up eventually. either via blood work, breast mri or via symptoms. i do believe that finding mets early would make a difference; however i also believe that cancer can mutate and become nonresponsive to chemo ; i want to use the big guns on big cancer.
quality of life is very important to me; (especially after finishing 6 years of arimidex...ouch) i often wonder how aggressive i would become with treatment if i did relapse. i didn't expect to still be doing this well 10 years later....i do believe that this is a crap shoot most of the time. cancer is just so unpredictable. there are so many variations of the disease. i guess no one knows what they will do if mets show up until that happens. in the meantime; talking about it...etc is helpful with other cancer survivors. i appreciate all of your comments and thoughts.
hugs*
diana
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I don't think finding mets early makes a difference,especially for lung and liver mets. I was 5 years out and suddenly had pain that felt like a gall bladder attack. I went to the ER and found out I had two liver mets- one was huge- 11 cm. I have now been NED for over a year because my cancer responded to treatment. There have been women who were diagnosed after me with one or two small spots and didn't respond to anything, and are now gone.
For the first 3 years after my treatment, I was scanned regularly. I had a ct scan less than a year before my liver mets were diagnosed,(because I having stomach pain) and it was clear. At my 5 year check up, my tumor markers were normal and my dr told me tht the chance of my cancer coming back was less than 1%.
4 months later, the liver tumors were found and my tumor markers were elevated. This was not growing for years, it was probably months. That is what is scary. You can have a scan, and it gives you some piece of mind for about a month or so, until you have the next ache or pain.
Laurie
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Lago... my mom only had breast cancer once. In the 1960's, when she was in her 30's, her new doctor "discovered" a lump in her breast. It had been there since my mother was 14 (the result of an accident), but he sent her for a lumpectomy anyway. I mean, this was the 1960's and only 1-in-3 women survived breast cancer in those days. The surgeon removed the lump, the pathologist looked at the tissue and wouldn't make a definitive prognosis either way ("... it doesn't look like cancer... but ... I can't tell what it is ...), so the surgeon did a complete mastectomy and AND just to be "safe". All the tissue came back from pathology as negative for cancer. No further treatment was offered - no chemo, no rads - and she never recurred. The consensus was - and still is - that there was no evidence for malignancy at the time, but - since they couldn't be sure - they "erred" on the side of caution. My MO agreed when I told her the story; she said that if it had been malignant, given my mother's age and lack of adjuvent treatment, she would have recurred... no doubt.
Fast forward 45 years, my mother (a retired nurse) - after 30 years of HRT - discovers a small lump in her other breast. This time, it is undoubtedly malignant: IDC Stage 2, no lymph nodes. It's diagnosed as a "primary" not a recurrence. She opts for another mastectomy ("... at my age, I may as well 'match' or I'll fall over..."), and refuses additional treatment. She won't even consider reconstruction. She's six years out now and doing well... She still receives annual mammograms on the remaining tissue because - as we all know - once you have had breast cancer, you are at risk to have it again.
Aggressive treatment was offered to me because of my age and single positive lymph node. My MO said that aggressive treatment at this stage had a good chance of being successful given recent study results, so... I went for it. She said that my mothers diagnosis wouldn't have made any difference to her treatment recommendations for me, especially since - on both sides of the family and in four generations - there is no other breast/ovarian cancer cases which suggested there isn't an inherited link. But she would have offered me the same treatment if she had been suspicious of a family "trait". In a way, this made me feel really good that she was seeing me as a single patient with a unique cancer rather than a file and statistic...
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Wow, laurie, your story is suprising. And, as you said, scary. I can't believe you were clear for years and then sundenly a huge tumor out of nowhere. That is so inconsistent with everything I have understood . . . .that mets will show up sooner rather than later. I have not checked your history, but I assume you had the original tumor removed years earlier. I wonder what kept it from growing for all that time?? Once again, the rule with cancer is that there are no rules. Ugh.
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Yes, I had a mastectomy 4 days after I was diagnosed, and had my lymph nodes removed, 2 which were positive. My story is rare, but yet it does happen. a 1% chance is low, but that still means one woman out of every 100 will be diagnosed with mets, even after the time when everyone assured them they were "safe".
I also did a year of Herceptin. It was approved for early stage a week before I was starting taxol, so I did 12 taxol/herceptin, then a year of Herceptin.
what kept it from growing is the million dollar question- my onc shrugs and says we don't know.
Laurie
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susansgarden - what a question you have posed. It has solicited great responses. I have taken the better part of the morning to read them all - the laundry will just have to wait.
Lots of different views & stories. It just goes to prove that cancer definitely has a mind of it's own and there are no guarantees whatsoever and it does not necessarily follow the same path for everyone.
I had a mx last June - lots of positive nodes detected. Prior to surgery a chest xray, US and bone scan were done. US showed something on liver so a CT was done a week after surgery. Onc was pretty sure that it wasn't mets because "mets usually appears in the bones first." Long story short - after questioning what it was and 2 biopsies later - liver mets was confirmed. I had no symptoms at all. It changed the course of tx from chemo/rads to tamoxifen & zoladex. I have f/u every 3 mos which include scans and bloodwork. I am grateful that I do live in Canada and do not have to fight with insurance to get tx or testing done. I cannot imagine the added stress that this can add. My primary dr is actually more proactive than my onc when any new symptoms do appear.
As far a being dx with mets earlier rather than later? I do believe that the earlier the better as I think that it leads to a better QOL,at least in my situation. I am hopeful that "so far so good" is a positive sign. (all mets are shrinking) I have always had a positive outlook on life - glass half full kinda girl. It is easy to tell someone not to worry about something that hasn't happened yet, but I do encourage everyone to find the good in life and enjoy the here and now whenever possible.
Sure, there are always doubts in our minds when a new pain or symptom appears. They are hard to ignore (and never should be) and should be addressed seriously by the medical profession if they persist.
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Oh right, I forgot to mention...falling in the cracks!!! I wasn't even assigned an oncologist!! My GENERAL surgeon said I didn't need one as I wasn't going to get chemo or rads (his decision!). It was only after being on these boards that I knew that was wrong. My own doc has given me all the tests I've asked for. We don't do PET in Canada on a regular basis - I had one doc say I'd have to be a rock star, and I knew he wasn't kidding!!! So I've asked for a yearly bone scan, and get an US when I get an ache or lump. I've even had more surgery to take away the rest of my thyroid as an ultrasound on swollen neck nodes picked up the 3 nodules! My doc is upset that my surgeon didn't continue to see me, so he's been great. I don't count on blood work to catch anything as I've read of women here having normal liver function tests and then find out they have liver mets! I worry that tests like that would give me a false sense of security.
When Konakat moved back to Canada, her onc in Ottawa was stunned at the amount of scans she'd been having!! Absolutely stunned!! You do have to wonder...don't you?
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