Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Shetland Pony, I think this is one of the most interesting features running through all of these discussions: to what extent does inflammation play in to the recurrence of cancer? I'm so curious about the aspirin studies for this reason. Was able to get them to use Toradol during my bmx though not, I suspect, pre-incision.
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Thank you all for your work trying to sort out "what's what " in this thread. I'm not good at understanding all the stats and implications when I read the studies.. and your discussions and explanations really help.
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sisters.....if anyone bothered to click on my Oct 6th post and registered at Medscape( if you haven't already)...it gives an excellent explanation of the Dutch study....the takeaway is that improvements in treatment and identifying tumors earlier SEEM to have better outcomes. Since the study was published, the few reporters that bothered to read the study are emphasizing that perhaps "catching" BC early through screening, IMPLIES better outcomes. That said, breaking down the data....and using it as a segue to answer Susan's original question....it SEEMS that you can identify those patients who are early stage that might have more or less chances of who will or will not be among the 30% who will recur. What is also interesting about the Dutch study is that they followed many patients over many years and have a better understanding of what kind of tumors the patients had.
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shetland...there was one and ONLY one study published a few years ago that said, now I am going to be very general in stating, patients who had lumpectomy and radiation did slightly better than patients who had mastectomy without radiation.
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VR - I'm a long-time Medscape user but had somehow missed that study, so special thanks for posting the link.
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Re VoraciousReader's referenced MedScape Article re the "Dutch" or Netherlands Study:
For those who aren't registered, don't want to register to MedScape, or forgot their password, google this title, and the full text MedScape article is the first non-Ad hit (full access):
Tumor Stage Still Influences Survival in Breast Cancer
These are the underlying BMJ materials:
Press Release:
http://www.bmj.com/company/wp-content/uploads/2014...
Article, entitled "Influence of tumour stage at breast cancer detection on survival in modern times: population based study in 173 797 patients"
http://www.bmj.com/content/351/bmj.h4901
Accompanying Commentary, entitled "With better adjuvant therapy, does breast cancer stage still matter?"
http://www.bmj.com/content/351/bmj.h5273
BarredOwl
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Voraciousreader, I have always appreciated your attention to research papers and your postings here on BCO. Your comments to my post about what we're calling the Dutch study here make me think I should clarify.
I was referring to the conclusion where it said "more conservative surgery is more favourable". I hope my post did not give the impression that this one study provides a definitive answer, or that I was advising anyone to choose their surgery based on it. The question of lumpectomy vs. mastectomy needs to be very individualized and carefully discussed with one's own doctors. While the authors of the study did adjust for age, stage, and adjuvant therapies, there may be other factors that went into the surgery decision for each patient that could have had an effect on their eventual outcome (breast density, family history, any number of things). That is why I said other patient characteristics might account for the finding. Still, when a person's doctors advise that either choice is fine, maybe clues from such studies could help with the decision-making. I will edit my original post to add these comments.
A theme of this thread is Asking Questions, and that is what I am doing.
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Hi all,
I want to apologize for my post about a month ago, after my 6-month MO visit. I was angry and scared and frustrated - and when that happens I tend to end up here because I feel safe and respected and cared for. :-) I thank you all for that.
I've spent some time processing my visit with a couple of BC friends, and my DH. I realize that the message I heard was not necessarily the message the NP had shared, but rather was clouded by my own fears. I understand that on the surface, my diagnosis is very good: early stage, smaller size, clean margins, node-negative. I mean, if I'm going to have cancer, I got lucky right? (*insert sarcasm here*) It's the more in-depth look that I'm stuck on, and where the root of my fear lies: high Oncotype, high ki-67, 4 nodes with ITCs, Luminal B, no Tamoxifen or AIs. I know these factors play a role in potential recurrence - but they aren't indicative that I will recur.
I'm not stupid; I'm an educated patient and understand many things about BC (thanks in large part to the community here). I know it's possible I'm "cured" but I can't know that for certain until - well, until I die of something else, right? I won't quit worrying about recurrence - probably ever - but I can't let that worry destroy my life. So I'm learning to manage my fears, embrace them and love them as a part of me. I can hold it's hand and walk along side it, but I refuse to allow it to overpower and control me.
This breast cancer - it's a part of who I am now, I can't change that. But I refuse to succumb to it through fear and worry. If it returns in the future I'll deal with it then. For now - I'm trying to focus on the greater chance that it won't.
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Wise words Nancy. That acceptance is tough to achieve. Thank you for your post.0
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Nancy! Your raw, sheer honesty is so amazing and spot on, IMHO! Breast cancer patient or survivor, as some may call it, is now and forever a part of us. I think one of the difficulties that so many of us have, is that breast cancer has become the de jour illness. Short of being on the spectrum of autism, I know of no other illness that gets as much media attention. Sadly, for many, it becomes a very painful, frequent reminder.
Two weeks ago, in the middle of Breast Cancer Awareness month, I attended a charity event honoring a lifelong friend. One of the speakers was a breast surgeon who was receiving a check for her good works. Before she spoke, the master of ceremonies asked if there were any breast cancer survivors in the room and asked for them to raise their hands! I was sitting at a table with friends I've known for 40 years, whom I HAVE NEVER TOLD I HAD BREAST CANCER. So, I sat there awkwardly with my hands in my lap!
Thankfully, I have the brain and emotional fortitude to ignore such comments. For most, I would think such an experience would interfere with them enjoying the rest of the evening.
Oh how I wish that our noble researchers found a way of eradicating all kinds of cancers, sooner than later. That said, for many of us, breast cancer is a very treatable disease. That is what I was initially told and with all the research I do, I have not found anything contrary. It is that hopeful opinion that soothes my mind and heart.
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VR, your journey and desire to share research has been an integral part of my (and many others') educational process. While you may not share your experience with others, I for one really appreciate that our paths have crossed. Thank you for all you do for us!
One of my dearest friends was dx two years after me. She is Stage IIIb, and I feel guilty about my worry and fear (some form of Survivor Guilt I'm sure, no pun intended). She shared a meditation with me about a year ago. While I'm not religious I am spiritual, and for some reason this meditation really resonates with me - I keep it on my fridge. It says, in part:
"Rest with me a while. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded in uncertainty. Look neither behind your nor before you. Trust that I will equip you fully for whatever awaits you on your journey. I designed time to be a protection for you. You couldn't bear to see all your life at once."
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Nancy, I mean this in the nicest way, please try your best to rid yourself of guilt. It is really a wasted emotion, serves no purpose. You are allowed to feel fortunate enough to deal with a lower stage bc (and that is enough to contend with). Feeling good about what you're dealing with in no way diminishes how badly you may feel for others who walk a more precarious path such as your friend. I've been dealing with bc for almost five years. I know that 80% of women diagnosed with metastatic bc do not live past four years and yes, my heart breaks for the women Ive met through this forum who've passed from this disease. However, I do not feel one iota, not one shread of guilt for my own stability and I hope to stay the course for many years.
The other thing I'd like to mention is a coping mechanism I use. I envision all breast cancer matters stored in a box no bigger than a shoe box, the lid is closed and I put it underneath my feet. That way, I am above it. And it is contained in that box, not wandering around. When I have to deal with bc, doctor appointments, treatments, blood work, bills, I open the box and take care of the necessary things. Then I put it back in the box and close it again and put it beneath me. I think they call this compartmentalizing, and it just helps to have that visual. Of course, bc is something I think about every day, but this way I do not allow it to overwhelm me and am able to move forward and live a full life.
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MrsM - thanks for the idea about the cancer box. Wonderfully visual process. I'll be borrowing your technique if I may.
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oh yes, if it helps you please do, that's my reason for sharing
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Nancy...at the ceremony was another speaker who has lived the life that you describe....90 years young, he said.... One has 3 stages in their life. The first as a child when you are carefree. The second.. middle age when you are steep in responsibilities... And the third...if you are blessed to get there...advanced old age. Then he said.... He could look in the rear view mirror and have regrets or worse...look ahead! He's said he chooses every day not to look back or ahead.... Instead he chooses to make every day special by giving of himself to make other people's day better....
As I left I approached his 90 year old wife and told her how special he was and what a terrific woman she probably is because they chose one another to share each other's life...her smile continues to warm me...
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30%? The percent that matters the most is when it happens to you...then it is 100%. I wish I had a dollar for every person who said to me "you will be fine". "They caught it early". Took less than 2 years for me to jump to stage 4
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Beatmon yes it does suck. I know a few women that are HER2+/hormone negative that are 5-10 years out. I hope they can get you to NED or at least under control till they find that damn cure.
Most recurrences happen in the 1st 2 years. Most oncologists don't discuss that. Mine did in a subtle way. She told me she wanted me to keep my port for 2 years because that's when most recurrences happen.0 -
lago - For all that I've read about BC, I never knew that most recurrences happen in the first two years. I was of the impression that the timing of recurrences is attributed to the type of BC. For example, Luminal B is more likely to recur in the 1st 5 years and if it does not it will be more similar to the recurrence rates of Luminal A. Luminal A, as I understand, has the lowest recurrence rates but can happen many years out. I follow this thread closely because like so many here, I am looking for every shred of evidence that can lower my anxiety and give me hope. One of the many things I hate, hate, hate about BC is there is no finish line. There is no point of declaring oneself cured with any certainty. I calculate every statistic in my head in an effort to predict my future. With that said, I am coming up on my 2 years in December. I'd really like to know that you're correct about most recurrences happening in the 1st 2 years. Is this common knowledge that I've somehow missed or does anyone have any references for confirmation? And what percent of recurrences happen in the first 2 years? My Onc always tells me it can happen at any time. Still, in my heart I still believe that the further out one gets the less her chance of recurrence.
NancyHB - I can relate to your experience. I too am stage 1A with a small tumor. But there are too many damn peculiarities to my cancer for me to rest easy...high ki67, mixed pathology reports, 2 NF1 mutations that nobody on planet Earth seems to understand and an intermediate Oncotype. The awareness that some women have far more concerning diagnosis doesn't lessen my anxiety. Thank goodness for this forum because BC really is a lonely experience.
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Warrior_Woman I don't think my MO would have said this if it weren't true. She is very well respected MO for her research in breast cancer/HER2 metastatic disease. This on the John Hopkin's site:
"The highest risk of recurrence for breast cancer patients is during the first two years following treatment."
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lago & kayb - Thanks very much for the follow-up. I did come across the Hopkins reports. I'm not sitting comfortably with them as they're written simplistically for lay people. All the studies I find point to later recurrence for certain types such as the luminal As. Stage, grade, size, hormonal status, etc. makes a difference of course. I've asked my Onc about whether or not I'm in a safer zone once I'm years out. His answer was that recurrence can occur at any time. I like the answer lago received much more.
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Warrior_Woman my oncologist still considers me high risk for recurrence due to tumor size. I'm pretty sure I was luminal B, being triple positive, grade 3 and very fast growing.
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More recent research that teases out Luminal A from Luminal B HER2- and Luminal B HER2+ and triple negative shows the 2-3 years out recurrence, but barely any in luminal A. The majority of recurrences in luminal A occur after the first five years with recurrences happening as long as 20 years out. Luminal B Her2- levels out after 2-3 years but continues to recur like luminal A after 5 years. The link to this was posted on BC .org by someone else. Maybe this Thread too? Not sure I saved the link, but I'll look.
Basically, this is a moving target with the addition of AIs and Herceptin to treatment and better imaging machines catching smaller and smaller tumors.
lago, you definitely are luminal B with triple positive. The data is often lumped together with luminal B HER2- data. This makes the analysis of the data less effective since treatment for these cancers is different as with recurrence timeframe.
I also suspect that one reason we get such different information from our MOs is that they are probably speaking more specifically to our specific tumor type.
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kayb I think fast growing cancers recur sooner because they are fast growing. Slow growing cancers may be so slow they they are almost dormant (sleeping) then something awakens them and if you aren't on certain meds like AIs or Tamoxifen they are free to grow.
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oh hell I hope not. I'm still not sure if I can do the 10
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Hi all. I haven't looked at your links (I'm one who needs simple words and lots of them pass over my head
- sorry)lJust wondering about the '2 years' (or 5 years) recurrence 'after treatment' - can you define 'treatment'? For those of us on an AI, after we come off at 5, 7 or maybe 10 years? Wouldn't that effectively put a 5-year'er with possibility of recurrence at about year 7? Hope I'm phrasing this so you understand my question. For instance, I'm still in treatment being on anastrozole for almost 7 years. If I continue for the full 10 years does that mean my risk of recurrence goes out until at least 2021 (2009 started AI+10 years on AI+2 years). Just wondering (maybe thinking too much?)
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lago, kayb & doxie - Thank you so much for this discussion and your posts. I guess I'm all over the place with uncertainty because my cancer doesn't fit neatly into one category. It's all so complicated. I just got switched to Aromasin as they don't think Tamoxifen works with my genetic disorder. Unfortunately, Tamoxifen was all I could take until now. Nobody knows if I'm Luminal A or B. It's such a crap shoot. I'll stay on hormonal therapy forever if it keep cancer away.
Patoo - The others may be able to add to this. Normally the clock begins ticking after the surgery. However, I've also seen studies looking at recurrence rates after hormonal therapy is completed.
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Thanks Warrior. I was just wondering as I believe, as you said, it's all a crap shoot. Nothing is a guarantee and the doctors do "practice" afterall! I refuse to stress over any of it.
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Warrior_Woman Having no nodes and a tumor under 5cm puts you at a substantially lower risk for recurrence. Right not they are recommending 10 years for node positive and those we tumors over 5cm due to the high risk for recurrence.
You have to remember that the statistic for recurrence is a general stat including all early stage including up to stage IIIA. The higher the stage (more nodes and/or larger tumor size) the higher the risk. Given your tumor size and node status you have a lower risk. I would highly recommend discussing this with your oncologist so s/he can give you YOUR specific risk.
The new way the are looking at cancer is based on individual biology per patient. It still has a way to go but that just proves how individual our cancer's are.
I too have always counted from surgery. BTW I have been on Exemestane (aromasin) for 1.5 years now. Much better than Anastrozole (Arimidex). Less physical side effects.
Kayb it is not unusual for HER2+ to be low ER+/PR+. I was 30% ER and 5% PR but my oncologist says it doesn't work that way. You can't be a little bit pregnant.
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Nothing much to say here, but no one's cancer fits into a neat model. It is the nature of cancer to be unpredictable. There can be general observations about cancers that share common characteristics, and clearly some cancers are more favorable than others. But, at the end of the day, everyone's cancer is unique to them. I just got diagnosed with cancer in a single node, with no local recurrence. They assume it is related to DCIS I had in the right breast 5 years ago. As far as I know it defies the generalizations. I had good margins, but scattered dcis. Supposedly, more aggressive dcis has a greater risk of recurrence, but whatever recurred for me doesn't appear to be aggressive at all. Recurrences after DCIS usually have a local component, but I had extensive surgery and a full ALND and the only cancer I had was in a single node and in no other tissue.
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