Are recurrence risks as high as they seem?
I was diagnosed with hr positive/ her 2 negative breast cancer in August at 38 and have been in a horrible mental place since. I thought a place like this would help me feel less alone, but instead I think it makes me more fearful. My doctors keep saying that I have the “easy” breast cancer, but after looking at posts, it seems like this type of breast cancer has the most recurrences. Was my less than 10% recurrence figure accurate or are doctors just trying to keep me positive?
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Hi @walsr014, Between 70% and 80% of breast cancers diagnosed are ER+/HER2-. The phrase "easy" was coined a while ago before effective treatments for HER2+ breast cancer had been developed. Herceptin was a game changer there. Triple negative is the most agressive type but if it is going to recur it usually happens within the first five years. The most common type like you and I have can recur 10, 15 or more years later. This longer recurrence window and the larger number of people with this diagnosis means that the majority of those with MBC were diagnosed ER+/HER2-. Also, most people who post on this site are under current treament of some sort. Many previous posters don't come back and are off living their busy cancer free lives.
If you were given a recurrence percentage of less than10% by your doctor that is most likely accurate. People with stage III ER+/Her2- may have a recurrence rate of over 50%. Sometimes all the recurrence rates are lumped together into one figure stating that in general there is a 30% risk of recurrence. There are people all along that percentage spectrum which yields that figure so everyone needs to look at their own personal situation.
It might help to view the information you were given differently: you have a greater than 90% chance of remaining breast cancer free. Unfortunately percentages are a statistical measure that looks at a large population so there is no way of predicting what will happen to you. We all hate uncertainty but have to learn to live with it. If you follow your treatment plan and live a healthy lifestyle you will most likely not have breast cancer again. All the best.
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So sorry that you find yourself here. None of us want to make anyone more fearful but many of us, having experienced bc in all its possibilities, are a rather honest lot and tend not to soft soap things( I blame the pinkification of bc on that!). I won’t dazzle you with statistics but suffice to say that recurrence is possible at all stages and grades (you have not mentioned your stage/grade) even with treatment. In addition to stage and grade, there can be individual factors that make recurrence more likely. Having said all of that, there isn’t anything very specific to predict who will recur and who won’t.
We are not trying to induce fear but rather support people in their understanding about bc so you can make decisions based not only on facts, but facts specific to your case. I’ve had stage IV for over 13 years and continue to be amazed by how complex and varied the disease can be. The pink stuff has certainly brought lots of attention and research dollars to bc but it has also lead folks to believe that bc is not a big deal and curable. It is not curable but many, many who are treated simply don’t face recurrence. again, predicting who will recur and who won’t is not something we can do, yet.Lastly, with respect to this site making you fearful, please remember that folks who are doing well, have no issues and no recurrence tend to stop posting. It’s human nature I guess so we don’t always see the “success” stories as much . Please take good care and try not to be fearful of the facts (which don’t change whether we mention them or not).
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Thank you for helping me to reframe this in my head. I knew it was the most common type of cancer but didn’t realize that it was 70-80%. I hate the lingering recurrence risk. I long to feel “safe” again and I suppose that is unlikely given that fact. Is there any truth to grade 3 and pr negative tumors being less likely to recur after 5 years?
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Grade 3 is considered the most aggressive as it is well differentiated from normal cells. I am not a medical professional but you can google research/articles regarding PR- tumors. I would urge you to further your knowledge using reliable resources rather than what you may have casually read or heard, even here! Knowledge really is power. I was PR- and only grade 1 yet was metastatic from the start. Yes, some things are more likely or less likely dependent on certain factors but there are never any absolutes or guarantees. I know this is a lot to take in but try to digest it in small bites and focus on what you know to be fact right now . Take care
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There are many factors which influence recurrence so it's hard to isolate just one aspect. Grade 3 tumors are more likely than other grade tumors to recur during the first 5 years but are no less likely to recur after the 5 year mark. Insofar as hormone receptors go the ER+ seems to drive the recurrence probability rather than the amount of PR. In addition to hormone receptors/grade, recurrence is affected by tumor size, number of affected nodes, surgical margins, genomic profile (as in oncotype), presence of lymphovascular invasion and treatments undergone. While higher stage tumors statistically recur more often I have seen people on this site who started out at every stage and grade including stage 0 and grade1 end up as stage IV. This is not meant to scare anyone, it's just being honest about what can happen.
The risk your oncologist determines for your specific situation is probably your best estimate but it is still a guess. It's strange how we worry more about this than some of the other things that could end our lives, probabaly because we are so focused on breast cancer while we are being treated. As time from diagnosis increases people tend to focus more on other things and worry less about bc recurrence. The chance is always there but if you follow your treatment plan and live a healthy lifestyle there is not much else you can do to influence the future. Someone who posted here once had a recurrence 28 years later. She mentioned her shock and surprise but also said that her life was busy and full, she had watched her children become independent and had welcomed several grandchildren during those years before her second diagnosis.
Time has helped me shift my perspective and accept my risk of recurrence as something that is there but in the background of my mind. Hopefully time will help you, too. Hugs.
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