Will 30% of Early Stage (1-IIIA) go on to metastasize??
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BB - I read so much different and sometimes conflicting information online that I need to depend on my medical team for what is accurate as it applies to me. Sometimes they don't know but then they'll tell me they don't know. It may not be an option for you but I did find it worthwhile to travel for my 2nd opinion and some of my treatment. For me it made a difference in the accuracy of my diagnosis and that was very important to my treatment plan. The information I have about the luminals is that Luminal A is lower risk but the risk continues indefinitely. Luminal B is higher risk but the risk drops to something similar to Luminal A after 5 years. Half of recurrences occur in the first 5 years and the 2-3 year mark is a time of higher incidence.
With that said, as much as I get teased about my ongoing process of self-education, I have educated my treatment team and influenced the course of my own treatment. We have to be our own advocates.
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This thread has made me cry... and has fed the fear of recurrance in me, as a newbie... not long after surgery.
Looking back I question the validity of the information contained within it and the motives behind it.
May hope and accurate statistical information prevail on a supportive forum.
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Never give up hope! Nancy Reagan was diagnosed with breast cancer in 1987 and died of congestive heart failure almost 30 years later
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wobbly, we are breast cancer patients, too! Why would we post things that are not things we have heard or read or been told by our oncologists? We are not here to scare anyone, but it's a good reality check.
I don't think you'll find a more supportive site anywhere else. If you want to talk about unicorns and fairies there are even posts for that!
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barbie I agree! Most of us are not medical professionals although Im a RN. This forum was created to share experiences and give us a pool of women going through similar issues to relate to. Its not meant to be a substitute for docs and other medical professionals. Its a safe place to vent fears, frustrations as well as success stories. Don't forget there is always Google if you are just looking for facts. We need to be honest on this forum and if its not suitable for some they don't have to visit!
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The first thing that should be noted when seeing this topic is the big question mark at the end of the topic heading. That tells you that the original poster is questioning the information and looking for clarification. Reading up on the replies, you see that how the statement was taken out of context, and responders have explained the matter.
We all know breast cancer is scary. None of us intend to frighten anyone, we are here to keep informed and to inform. If the topic scares you, face those fears. Do not run from them. Educate yourself. Arm yourself with the facts. As they say, knowledge is power.0 -
wobbly 30% statistic had been questioned by the professionals too. It's used by many breast cancer charities (to get more donations). Also note that includes all early breast cancer patients. Those who did treatment as well as those who chose only partial treatment or no treatment after surgery.
The best thing you can do to reduce recurrence rate is exercise, maintain a healthy weight. I also believe reducing stress will help too.
*"Short of resorting to such drastic measures, all women can reduce the risk of getting breast cancer by drinking less alcohol and losing weight. "Patients want to know what they can do," says Cobleigh. "It used to be you could say, 'There really isn't anything.' Now you can say, 'If you control your weight after a diagnosis of breast cancer, you'll be less likely to die.'" source linky
* she also now says exercise and asks her patients about this on their check ups. I know because I'm one of her patients. s
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wobbly - It is terrifying but as Mrs M says for our own mental health we to get to a point that we can move on despite our fear. You are at a very very tender time in your recovery. If you're like me the hardest part was after active treatment ended, when you feel all alone on a raft in the deep blue sea. It is a proven fact that this is the point when PTSD -like symptoms really kick it. I remember that fear - all day every day for months that damn BC radio played in my head. Slowly, ever so slowly I was able to accept all that had happened and start thinking about other things. A wise doctor told me it might take a year, maybe two, to move forward. Meds, counseling, and time pulled me out. You'll get there. We do understand. We love to help. It is all part of this crazy pay-it-forward thing we BC sisters have. Gentle hug.0
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another big thumbs up to Farmer Lucy as well as the truly Divine Mrs. M and all the rest of my ever-so-insightful and compassionate bc sisters.
Personally, I think it is better to be aware of the possibility of recurrence or metastasis than not. I would hate to truly believe I was cured, never to have it darken my doorway again, only to be blindsided again. But that's just me.0 -
l;ovely words Farmer Lucy
I do understand and see all the love and support shared on this site and I see voracious and avid researchers sharing information.which is inspirational.
Its the ruminatory edit upon edit nature of this thread that has got to me. I think it reflects the neurotic nature of my own recovery.
As dtad tells me , perhaps it doesn't suit me......
perhaps moving on means letting go of this bc record playing in my head and letting go of logging on....
can I do that.... I am a bit addicted...and still more than a little scared...
Peace
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Wobbly, I am seriously thinking about not logging on here any more for much the same reason. At this point, I have done everything my medical team recommended to eradicate this disease. I, too
, may need to let go of this site for my own mental well-being.0 -
Hmmm. I have found this site generally encouraging because it shows a community of women living their lives in spite of this disease. I knew little about cancer before my lucky number came up, but it was quickly apparent to me that we are all individuals and someone's story may not match yours no matter how similar the diagnosis. Keeping that in mind helps. But I think there is a lot of good information here that is --as always--a starting point for discussions with your medical team if you think it may apply to you. I see no harm at all in trying to parse out stats from medical studies. They can be confusing and it's good to get others' thoughts.
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Wobbly and Wildflowers are scared. I'm scared. Most of us are scared. It is completely understandable. I know for myself I want to be informed and prepared for everything. But, I also know that at some points it is too much. This site is wonderful and I am so happy we all have this amazing resource. However, I know for myself that I have had to take a break from loging on because I do get scared and overwhelmed.
I find it helpful to only go to the threads that pertain to me and my particular diagnosis. I avoid the stage four threads because I want to respect those who are on there but also because it would be too much for me to handle. But with all that said, I am thankful for everyone on here and the support I've received and that I've tried to give.
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while I still consider myself to be a newbie too I also feel a strong sense of the need to give back. Just as those that sent a hand back to me with experience sharing to help me get thru active treatment, I feel compelled to do the same with those newer to bc than me. BC is very frightening and I only hope I can someday post on here for the 10 & 15 year survival thread to keep encouraging others. I also still get a lot from the breaking news thread. I view this site as a place to come when the dark clouds loom and I want to find strength that I can beat this thing and then to help encourage others. Everybody handles the fear and coping of bc differently. I'm thrilled this site is available for those that want to use it and find it of value. Thanks to all who continue to share their story and experience
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I understand the need to wean yourself away from this site for awhile. I found it more helpful to "unfollow" occasional topics that I had marked as a favorite when they veered off track or I found I wasn't able to contribute to the information that was being posted. And that is OK and healthy to do. Sometimes they don't apply to me any longer. The general tone of all the topics is positive and contains postings from people at all levels of treatment. The important thing is to do what is right for you. Hugs.
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I'd be flying in the dark without this forum. Getting information for the treatment and management of this disease for a male is virtually impossible, since while medical professions are all more or less helpful, they are busy and mostly unavailable. Meanwhile BCO lights up 247 and I love it. The knowledge I've gained here, including stuff I might not want to hear, makes me stronger. I do block topics that don't suit my stage or those that freak me out, but there's so much positive energy here and I just love hearing from the "long-termers" since I'm planning to be one of them.
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lago, I have received the same advice to limit alcohol and “maintain a healthy weight” (easier said than done when already mildly obese at dx and now on an aromatase inhibitor). But I have to take issue with the assertion that early menarche is due to obesity. I began menstruating a month before my 11th birthday, and I was so underweight and anemic that my doctor prescribed iron tonic and advised my mom to encourage me to eat freely of the few foods I liked back then. (She would send me across the street for a malted but then would phone ahead to tell them to make sure I finished all of it and ate the cookie that came with it). For two years thereafter, I still had to buy the smallest size dresses and have the sleeves taken in at the wrist--even though I was an “early bloomer” up top. (Being a "busty beanpole" was not pleasant for a preadolescent). I am sure that estrogen played a role, and it may have been genetic, as my mom began menstruating at 10. I tested negative for the BRCA mutations and VUSes, but I can tell you that in my case, early puberty had nothing to do with body weight.
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I'm sorry, but what is mbc? I'm still trying to figure out all of the abbreviations. Thank you, Adina
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I'm sorry, but what is mbc & BMX? I'm still trying to figure out all of the abbreviations. Thank you, Adina
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Adina. You'll find abbreviations here: https://community.breastcancer.org/forum/131/topics/773727
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It's quite the blanket statement that "all women can reduce the risk of getting breast cancer by drinking less alcohol and losing weight". I'm sure that wasn't intended, as those of us who've never been overweight couldn't have reduced our risk by becoming underweight. Also, while it's statistically true that heavier girls tend to get their periods earlier, I'm like ChiSandy in that I was thin as a child but started menstruating early: I was 11.
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mbc- metastatic breast cancer
Bmx- bilateral mastectomy, same as double mastectomy
When I first learn I had a malignant tumor, my gynecologist told me not to go online and look up a bunch of stuff or i would scare myself. It was excellent advice.
I did a small amount of online research and in doing so, found this site. It went a long any to helping me cope those first few months. I shook in my boots seeing the stage four section. Scared me to death. But testing revealed that I was now dealing with stage iv bc. It was even scarier to open those links and read what others in my shoes were dealing with. As I did, I began to feel relief, and welcomed the camraderie.
We should all edit what we receive into our minds, not just this forum, but in what we books and magazines we read, what we watch on tv, and we spend time with those who add to our lives. And not just when it comes to bc but with everything
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Skinny girl who got her period at 10 1/2. Never overweight, social consumption of alcohol. Had 2 children, breastfed both for long periods of time. Stage IV from the start. Go figure
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I will keep coming back & am so grateful for everyone else who continues to post. Yes, a year after my BMX for DCIS w/large rumors, I was moving on with life. I knew there was never a "cured" for BC, but I put it away. Clean margins, no bad serial nodes. Thank heavens BCO was here when I had a recurrence in only 2 years and it turned up IDC w/node involvement. I also don't agree that the only people still here are problem cases. Lots of us hope to give back at least 1/10th of the knowledge and support that we received.
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I was so skinny growing up my ankles looked like they would snap - even while I had a 38D chest in grade 9. I started my period at 13, the same time I was so thin I could stuff my entire fist underneath my rib cage. I breast fed both kids who I had early at 23 and 25 years. I drank sporadically as it wasn't the highlight of my day and normally danced off any calories by last call.
I got breast cancer. I am a woman. I stopped on this board in November of 2014 thinking I had spent 6 years giving back and that would be it. Then I became stage IV in January of this year and I came back on looking for information on Arimidex and radiation. I've learned WAY more from the gals that have done it all before me than I've learned from Dr. Google.
Losing weight and not drinking is considered a "life style" change and is only to allow the patient to feel in "control". Bullshit. There are tri-athletes on this board who have breast cancer. Don't blame the patient. It's not her fault. I didn't drink alcohol for 7 1/2 years after diagnosis as God and I had a "deal". I've started enjoying a glass of wine or a drink of scotch now in the evening as my life is pretty stressful lately. How did not drinking save me? It didn't. Who failed? The people who said that or me for believing it? No one did. I lost the roll of the dice. Again.
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Barbe - I agree about the dice. When I first got cancer, I was the most healthy I had ever been. Walking 5 miles per day, working out 45 min on top of that, 4 years post quitting smoking & didn't gain weight, 4 years past drinking (because it made me want to smoke), Fighting trim... Glad you're enjoying a glass of wine again.
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I was also one of those tall skinny girls --5 ft 7, 68 lbs at 11, when I got my period. My mother used to stuff an Oreo into my mouth every time I opened it.
And I am not trying to scare anyone. As a Stage 1, grade 1 ER/PR+ woman, I know that I have a slight statistical chance of recurrence == about 2% a year -- but I have decided to live as though my cancer was lopped out with the lump.
That's why I emphasize that most women go back to normal, healthy lives. It's what we all want, and I have decided to live in that reality0 -
I can't say I'm scared. I was at the beginning but this site has helped me more than any doctors or providers of care have. The problem I think of letting go of this site is you find new info posted here first, if it even gets out elsewhere. This is like CNN of BC. All I do it unfollow the threads that no longer pertain to me or I can't really say much more than is already stated in there. And I do read the death and dying thread. Not because I'm morbid but you should see how those ladies think. We should all be like them. It's a life learning thread, not a death thread really. I would much rather be up on everything to do with BC including those who are stage IV and time's a ticking how they handle that because it's a tool to be used in other difficult areas of life, not just in the death process. I look for learning something beyond just the facts and people's straight up stories. This site is perfect if you open your mind and think about what is being shared beyond BC stuff.
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Well said, Artista. I read the D&D thread as well. I have learned a lot about planning and living and grace from the ladies on that thread.
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There is no way to prevent bc, even lowering risks are generally good health choices for any disease. We need to relax and enjoy the life we have. I can't tell you how the oncodx number made me feel, a 34. My God I used to dream about becoming condemned to a stupid number. There is much we can learn from our stage 4 BCO sisters. So many have overcome and told their stories. It is true many have died but they have taught me so much. Live life and enjoy. No doctor can tell you if you will recur or not, forget the statistics.
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