Catching Mets Early? Docs say it doesnt matter?
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Lago,
I'd much rather have them looking for stuff that is not there, than them Not looking for stuff that is there... I think it is great (and really as it should be), that your MO is proactive!!! Wishing you continued good scans (as few as possible!). :-) Going back to the initial question: In my opinion, it is (in most cases) better to find anything early and potentially stop "it" in its tracks, than find it later, when it has progressed to a stage that makes it much harder to treat or impossible to kill.0 -
Stress? I have a crazy stressful job.... Dang
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Just cleaning up my "favorites" in this new format and saw this one again. What interesting conversations. ... and Hi SleeplessinSeattle!! It was so great meeting you. I hope your last chemo went well.
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I am at Wake Forest, participating in a her2+ vaccine trial. They asked me when I had a PET scan. I told them that I hadn't, as my onc doesn't believe in them unless there are symptoms, for stage 1 people with less than 1 cm tumor. I told her was the one area we disagree on, and I was working on him.
Her response was that maybe I should start inventing some symptoms. LOL0 -
"Hi" right back at you, Susan! Hope you had a good Mother's Day yesterday!!! - Can you believe the beautiful weather we have had lately?! Lovin' it!
It was great meeting you and the other Seatlle ladies last month. I'm looking forward to another meetup one of these days!!! :-)0 -
I hope we get to meet again soon too! .. and in Vegas?
.. Happy Mother's day to you too... I hope you are recovering well from your last chemo.0 -
This has been a fascinating thread and the timing of it couldn't be better for me. I'm one of those worriers and could and sometimes do live at my dr's office - she is very patient with me :-)
I began reading this thread in the middle of the night when anxiety about a pain I've had in my lower leg cor a couple of weeks kept me awake. I'm still anxious but it's nice to know I'm not alone!
It is hard to know when to worry and when to let it go. Like so many of us I was totally caught off guard by me dx- I had been feeling great, exercised, ate right, no family hx, don't drink/smoke etc. and yet there it was. How do you ever get your footing back?
A friend of mine lost her sister to this *##% disease and she was stage 0! My friend has been hounding me, to the point that it's difficult for us to talk now, to get scanned. My oncologist doesn't order scans unless there is a symptom and says they don't improve outcome. I've wondered if I needed a second opinion but this thread has helped me see that I'm getting pretty standard treatment.0 -
If stress caused, or exacerbated cancer, I'd have been dead years ago!! Perhaps NEW stress in someone who's had a relatively idyllic life could be a bad thing, but really, who doesn't have stress these days? It's the human condition!!
I went to the ER with bad vomitting a couple of months ago and was just hoping for a needle to stop it, as I was throwing up Gravol. I got an IV, ultrasound, x-ray and the next day went back for a CT scan!!! I was very impressed....Canada doesn't normally do that in an ER and I know it was the "Cancer Card" playing it's hand. The CT did find some abnormalities which we are watching. I'm not worried as I tend to grow lumps and these are in my abdomen.
If I get mets, I'd like to find them before they destroy an organ...like my liver! Give me a fighting chance and a little bit of hope, please.
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Barbe, there are different kinds and degrees of stress. Most people deal with everyday and financial stresses. Most of us can manage these stresses by a walk in the park or getting the stress off our mind by finding ways to escape. If we don't do something to relieve stress then everyday stress can reap havoc on our immune system. Acute stresses as death of a loved one, moving or new job can put our system in a lock down surging Cortisol, the flight and fight hormone, through out your body. I've read cases where people who were in acute stressful situations, two years from the date, was dx with cancer or some major disease. I can pin point a few acute stressful situations that could have exasberated cancer cells causing cancer cell growth.
Stress doesn't cause cancer, but from what I read is a catytilst or fuels cancer.
I have a friend who was dx with brain cancer a few years ago. They gave her about 6 months to live. I suggested she stop doing chemo,(especially since chemo supposely doesn't cross the brain barrier) and just live the six months as she was so uptight about cancer. She did and her tumor shrunk. She lived more than 2 years past the 6 month prognosis. A month ago she took a stressful car trip (4 day road trip) with her husband and 3 grown kids. After she got back, she wasn't doing as well. She went in for a brain mri and the tumor within a few months had grown 3X's the size it was before going on the trip. A few months back the mri saw a small tumor that didn't effect her life that much, and now it's large and she has lost hope because it's effected her mobility. She is happy she got the family vacation she wanted, but the stress, was it worth it?
Back on track
Once we are dx with cancer, stage 0 and up, we need to keep a watchful eye on a recurrence. If I hadn't, I am sure I would had found out way too late and would had been dx at a advance stage. My six month screenings have been a life savor for me. Now that I'm IDC, I have to watch all the more for anything that resembles cancer. Watching shouldn't be consuming, just keeping a watchful eye for anything out of the ordinary, and to stay stress free (which is the hardest part
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In my mind I've gone to that place, that's new. Hmmm, could it be?
Dx in 2003 at age 32, stage I, grade 3, 0/2 nodes, ER/PR-her2. Lumpectomy, SNB, chemo, rads. Watched with mammo every 6 months for almost 7 years. 2 months before I hit 7 years, my onc says, Mammo looked fine, i think it's time to go yearly visits. Waaaahoooo! Right?
So I saw her, two months later see my PCP for a check up- boobs are checked. A month later see my gyn about female concerns- boobs are checked. So three sets of MD hands on me in 4 months. The next month I found my lump, just over a centimeter. Came out of nowhere really! But i felt like i'd been waiting for the other shoe to drop. Stage I, slightly ER+, PR-, Her2-, grade 3. Same breast but not the same area. So BMX, Hyst, Chemo, recon. I turned 40 and i'm worn out.
If mets are in my future, yeah I'd want the time to do certain things. Screw what the statistics say. I've proven them wrong so many times in my life and not always in a good way. I've put off doing a certain project because I fear completing it. Does that make sense? That's a first to admit that, and I know it's all just in my head. It's just something I have to come to terms with and I'm working on it.
As always thank you ladies (and gents, should any chime in) for the thought provoking topics and take care.0 -
mebemarj, second time around sucks I'm sure. Hope all goes well for you. I am finding that although I dread ever hearing that it has reoccurred or spread I will not spend my time regretting what I haven't done. If a opportunity presents itself I do it now. I figure that I may never pass this way again and so I don't say I'll do it next time I go ahead and do it. Just came back from going into some caverns that I have passed for years and I am glad I did. They were awesome. Good luck. Hope everyone is doing okay.
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I too am concerned about every little dull pang I get - be it from sports (after swimming the surgical site is really, really wonky, the skin stings, and the shoulder is "cold"). I carry a lot of bags, and grocery bags on my non surgical side (right shoulder) so that one will also respond. It's hard not to think about recurrence, and everything that hurts even a little bit is a mental issue.
I too am guilty of checking things, and rechecking: so far I have requested colonoscopy (turns out hemoroids from poor hydration), and thyroid scans (it turns out that 2-3 years post chemo your salivary glands will act out wonky and start tickling and secreting saliva, just to annoy you and give you anxiety. I am lucky, Ontario has insurance, on one hand. On the other hand, you CANNOT nag even the best doctors into scanning you. You litterally have to be in agonizing pain before they blink. They dismiss things easily. How many of you have heard: "that's just because your estrogen is depleeted" speach?
I even thought of inventing my own home scanner like on one of those sci-fi shows...
I love these forums, they are the only place on Earth where I feel human and normal!
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I'm sorry but maybe it's just me. Last year I had a long talk with my onc about stage iv survival etc and I told her that I don't want any scans etc. I would rather live in blissful ignorance.
Whilst I have tremendous admiration for our stage iv sisters, I just couldn't cope with living like that. I watched my dad 'fight cancer' and it was futile.
I would rather enjoy my life until the end than undergo a constant stream of chemos and scans. I just couldn't live like that, those who do are far braver than I. Until the stats prove massively in favour, I won't be undertaking any scans whatsoever.
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yuchick-I like the idea of a home scanner. Could use it right now on my aching neck
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Home scanner comes with a copy of "Interpreting Radiographic Imaging for Dummies"... LOL...but wouldn't that be handy to have!
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maltomlin, the fact that you are on this forum for the past 3 years means that you do think about breast cancer. I kind of know what you're saying, but again, I'd like to catch any mets before they start destroying my organs. I've seen too many ladies go downhill in DAYS...
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I'm with you barbe - Although my mets have already spread to the liver, I am glad that a scan found them when it did. Having no symptoms, the mets could have spread even more causing irreversible damage. There are tx other than chemo/rad and I have had a great QOL since dx a yr ago. I know that could change at any time, but I would rather throw what I can at the mets in order to keep them under control rather than let them go haywire on their own.
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I noticed this thread on the active topics and read back to the beginning. Thanks for such an informative thread. This topic is of interest to me because since my bc diagnosis, I have had major pains and aches that have caused Docs to re-scan a couple of times. I had cervical and breast cancer. After my bc diagnosis, I had complete scan workup and as mentioned, since then have had bone scans to investigate aches. I have asked my Onco many times about mets and he has said that the protocol for stage 2 bc is not to scan unless there are symptoms. I am due for my 6 mth checkup and have been having many aches -- last checkup We talked about another bone scan for a pain in left side but I said no--i had just had bone scan within last year. This time--aches still there--and will prob ask for the scan. My mind wont rest from it. I had cancer twice in a matter of 6 months so Doc thinks that I am hyper-vigilant.
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As someone who was only stage II for a few months ( hence, probably always stage IV but no reason to suspect it), I can honestly say I am happy to know exactly what my situation is. I guess you could say I'm "fortunate" to have a single bone met. I have attacked it with the reccommended tx and it is now necrotic (rads to the femur). I take Arimidex and have monthly Aredia infusions. I look great, feel great, work full time at a job I adore and became a grandmother 3 months ago. Would I look and feel as well if I didn't know about or treat my mets? Who knows but both my mo and RO feel there is a good chance that we can deal with this as a chronic condition and that I will have many years ahead of me. I choose to believe this and will deal with whatever else happens when it happens. You can know that you are stage IV and thoroughly enjoy your life.
Caryn0 -
Rachel, Tamoxifen can cause aches and pains, too.
Caryn, thanks for the hope! I just had an ultrasound this morning that the requisition from my onc said "rule out liver mets". Now I have to wait till next week for the results.....
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Barbe - A week of waiting for US results? How agonizing - any way you can get the results earlier?
Here's hoping that it does "rule out liver mets" But as Caryn said - one can still enjoy life while living with mets. Hope you don't have to find out though!
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Having spent many years working in a country where I have seen cancer left untreated or found very late, I'll just throw my two cents in that you really wouldn't know what you want until you experienced a scenario like that. I wouldn't want to make anyone upset with the descriptions of the agony and heartache I've witnessed due to advanced cancer in countries where basic things like lymphedema evaluation isn't available, or AIs, for that matter.
We have the privilege of high-standard medicine here. It ain't perfect by a long shot, but I know my lot would be very, very, very different had I been treated there (I am stage 1, btw). My colleague here "caught mets early". She is working on getting NED. I believe finding them early has bought her time. You can't discount the psychological benefit of being proactive, either.
Barb, I am with you. I was diagnosed with a new suspicious area in my breast, and have surgical biopsy next week. There aren't words to describe what it's like waiting. It is a parallel universe.
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I agree with finding mets early. I too have worked in a third world country. Cancer found at a late stage does not lead to the scenario, I think some may imagine, of going quietly into the good night. I would want to know of mets to be able to treat them and minimize pain and suffering. I understand survival times may not be improved but I think quality of life would be. Our quality of care in the "first" world is a galaxy away from the care in the "third" world. We are priviledged beyond what we can, or are willing, to imagine.
Love to you all
Gingerbrew
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I choose blissful ignorance. It's an easy choice. As far as I can see, stage IV means you are condemned. The less treatment and knowledge I endure, the better. I don't shoot for longevity (in which case I would opt for very active surveillance). Nobody really gains by my living more, least of all me. Treatment would probably kill me more quickly anyway. I choose QOL. No PETS for me unless I am in agony and surgery is an option. My signature says it all, really.
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Well, Athena, I gain from you living more, have for two years now.
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I don't know how much time I have and I am not a statistic. My QOL is great right now though it may not always be. I have few and very manageable se's from my tx. I have never, ever felt condemned, and I know that many stage IV sisters would agree (though we are not naive about our disease). My daughters, granddaughter, and extended family and friends gain from my living longer. My beautiful first graders gain from having a teacher who loves her job and truly cares about them. The list goes on and on but mostly, I gain because I love my life and I believe that it may be a good long while before I use the word "endure" to describe my tx and knowledge of my disease. My mo and ro feel,the same way. I know what the stats say but to heck with them. Caryn
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Treatments are managable for some & very variable. I'm trying to decide if I want to stick with my "no scans" "no labwork" MO. With scans potentially finding disease, leading to treatments that can hurt my QOL & may not prolong it. I do understand what Athena's saying. My appt is this month, after it's over, I think I go to the once a year plan & quit pondering it
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Wow, I am amazed and a bit insulted by how misunderstood stage IV is. Yes, I take meds everyday, yes, I get monthly infusions but I am a thriving, happy, productive member of society . I am not condemned nor do I endure anything more than many others with chronic illness do. Living for more years is of great value to my family, friends, students and me! BC will get me eventually but tx will probably give me many good years. Walk in my shoes for while and see what a full, worthy and valuable life I live. Caryn PS: my met was found by accident. 15 rads to the femur and it is necrotic. I am so grateful this happened. You will never convince me that waiting until I was symptomatic and had extensive mets would have been just the same.
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"As far as I can see, stage IV means you are condemned."
Just..wow. So, we should all just sit here and wait to die I guess.
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