Fill Out Your Profile to share more about you. Learn more...

Highest risk of cancer recurrence?

Waronbreastcancer Member Posts: 11
edited October 2019 in Stage III Breast Cancer

Dear all,

I was wondering if you know something about when the highest risk of cancer recurrence is when you are highly ER positive? Is the risk of recurrence just as high after two years? My oncologist was not too clear on this and therefore I hope that you can help me with this.

Kind regards




  • traveltext
    traveltext Member Posts: 1,050

    ER+/PR+ HER2- is the best diagnosis for long-term survival. With Stage III bc the percentage risk of recurrence decreases as you get closer to the 5-year mark. Once you've reached this goal, recurrence rates are pretty similar to those with Stage I and Stage II bc.

  • Waronbreastcancer
    Waronbreastcancer Member Posts: 11

    Thank you very much for your reply! Although it still feels a bit long to the five year mark, it's nice that the risk will go down eventually :)

  • wintersocks
    wintersocks Member Posts: 434


    Is that right that we go to same risk as stage i or ii? I haven't heard that before it seems a little unlikely? I know the risk of recurrence goes down significantly post 5 years but - I am surprised by what you say!

    Waronbreast - time goes faster than we think. I am coming up to 5 years and I remember being dx'd vividly. I can hardly believe where the time has gone. Just try to live as normally as you can and you will see the time goes. You have nearly done 2 years see!

  • traveltext
    traveltext Member Posts: 1,050

    Wintersocks. My breast surgeon told me that the risk of recurrence post treatment diminishes as we approach the 5-year mark at which time our recurrence rates equal those of lower stages. I checked this with my oncologist and she agreed that's the case.

  • kicks
    kicks Member Posts: 319

    I was told that it was being IBC was more 'important' than being Stage IIIC. Only about 1 out of 4 IBCers make it to 5 yrs. As far as I know today, I'm still NED (No Evidence of Disease) 7+ yrs post TX. When I hit a year post DX, all my Drs told me then that they never expected me to make it til then, 😏 Fooled them ☺!

  • Leslie2016
    Leslie2016 Member Posts: 121

    Ok, so the chances go down each year for a recurrence. Is it the same % for a new BC? Or is it higher? Sometimes I feel like the experts are playing a game...oh yes...your chance of a recurrence is very got it again? Well that's a new BC...we didn't say it was that low...

  • TectonicShift
    TectonicShift Member Posts: 102


  • kathleen26
    kathleen26 Member Posts: 10

    I heard almost exactly what TectonicShift heard from my oncologist. I was told that for Stage IIIC I would be followed for at least 20 years because of high recurrence risk, that would start dropping after 10 years. Even then I would not ever be totally in the clear, but the risk would start dropping considerably after 20 years. I also have heard years 5-10 for Grade 1 cancers were the years of most likely recurrence.

  • yatcomw
    yatcomw Member Posts: 57

    I am going to echo TectonicShift and Kathleen26.......

    The great thing about being ER+ is that there are good drugs.....the bad thing is that there is a risk of reoccurrence long term. My oncologist wanted me to be ER- because after 5 years you were greatly in the clear. Those that have a large tumor and many positive nodes have the greatest risk of late reoccurrence.....which is why I am never giving up my Femara.....

    Keep in mind that the risk is lower the farther you are out......but just still there.....which is a bummer;) You just want to be done with this cancer thing. However....the drugs are getting better and I am hopeful that there will always be something there for me when I need it. I refuse to dwell on it.


  • Waronbreastcancer
    Waronbreastcancer Member Posts: 11

    Thank you very much for all your replies. I still hope that pregnancy is an option in some years from now and my oncologist also thinks that it is. If that is to become a reality I will have to go of Letrozole, which is obviously a scary thought. Actually some studies indicate that I can be beneficial in terms of survival to become pregnant after breast cancer.. Well there are still some years until that and right now my focus is just on surviving :)

  • stephilosphy00
    stephilosphy00 Member Posts: 161

    I was diagnosed at young age too and I am also wondering if pregnancy in the future is possible. Since I am also highly PR possitive, I am afraid pregancy could actually trigger recurrence. I do have seen a few cases on this forum people have BC met to other organs soon after giving birth which really scare me to death.

  • Waronbreastcancer
    Waronbreastcancer Member Posts: 11

    Yes, that is super scary :( I am also not sure if I dare to take the chance. Only if my oncologist thinks it is a good idea. However they do have good cases of pregnancy after node positive breast cancer. But as he says maybe new knowledge and/or methods is available in some years. I will keep hoping for the possibility to get pregnant yet remain realistic! :)

  • wintersocks
    wintersocks Member Posts: 434


    'as we approach the 5-year mark at which time our recurrence rates equal those of lower stages'. - I am pleased to hear this, but I am a little incredulous as to how this can be so? I was told that I am at 'future risk' for recurrence so I take that to mean 'high risk'. that no matter how many years have gone by...I find It's so hard to know what to believe. Honestly I do.

    Kicks - whoo hoo! really pleased you are doing so well! It's great to hear,

    YATCOMW- It's really great to see you are doing so well too. 'which is why I am never giving up my Femara'.. I have been told now I need to come off this drug, I am asking for a second opinion, because I too believe it has kept me well.

  • Lily55
    Lily55 Member Posts: 1,748

    You cannot generalise according to Stage as it depends on type of cáncer it was as well as extent of hormone status.  The Royal Marsden told me that IDC tends to have a recurrence rate that reduces after 5 years, ILC has a later recurrence rate and can be higher after 10 years.........

  • traveltext
    traveltext Member Posts: 1,050

    Wintersocks, many here will remember this topic ran for 53 pages: Will 30% of Early Stage go on to metastasize? the posts can be found HERE.

    My knowledge was mainly gained by following this discussion and noting the consensus. So many posts are referenced and some of the top BCO posters joined the discussion (often argument).

    Lily is right about type of cancer being important. My breast surgeon was commenting on my IBC which showed no pathologic complete response after chemo and surgery.

    I understand our quest for a definite answer to this question, but at the end of the day I keep poppin' the tamox, eat healthily, stay fit and hope for the best. But then I'm 66 and not a woman in my thirties hoping to plan a family. My heart goes out to you Waronbreast and others here.

  • hopefour
    hopefour Member Posts: 104

    I am grade 1 and was told my recurrence would be between my 6-8 years post DX by MD Anderson. In one way I was thankful that I had a better chance to be there for my kids for awhile, but the concerning side is that grade1 will always be a possibility of recurrence!! My MO and functional MD both feel my recurrence is more 10-12 years…so I figure forever is a possibility!! I have a sweet friend who's mom had a recurrence at 21 years and now has been stage 4 for 8 years. When I went to see Dr. Block in Chicago he shared his grandmother had a recurrence 20 years out and that I will never stop being vigilant with my diet, supplements and exercise. I did change up some holistic things I do last fall. Tectonicshift was a huge source of info last fall for me as I struggled with doing a trail…in the end I didn't go through with it. There where those who didn't support me doing chemo due to grade 1…felt I took a risk changing the grade…same feel grade1 is workable and not to over treat it ( with out going into lots of detail hope that makes sense) however being 95% both ER and PR everyone says Als works best on grade1. My goal is to keep it dormant for 40 years!!!

  • ssinuk
    ssinuk Member Posts: 63

    My Onc said for HR+ IDC Stage 3 the highest risk was 2-4 years after surgery then the risk declined each year 'by a very small amount'. With a starting point of 40% relapse over 10 years, about half relapse in the first five years and the other 20% years 5-10 and after. Stage 2 recurrence i only 15-20% total.

  • LM070917
    LM070917 Member Posts: 68

    Waron and Steph, I too hope to one day have a child. I'm now 36 and have no kids. I have also heard mixed things- some recur after a baby, but it may be because they came off hormone pills and not related to pregnancy. My gyn told me that pregnancy doesn't cause bc, but if its already there, then it can escalate...

    There's the POSITIVE trial currently happening, which is looking at women under 40 taking a break off hormone pills after 18 months up to 3 years and then go back on it..however the results won't be out for another 10 or so years. Which is too late for me...I'm about another 2/3 years off before considering, but atleast it'll help ladies in the future

  • claireinaz
    claireinaz Member Posts: 662

    Dear all, the o.p. also had ILC, which is a bit of a diff animal than IDC. Waronbreastcancer, you could repost your original query in the ILC board and see what you get in response. We have a lot of knowledgeable people there (men and women) who could help you. I do know that ILC tends to recur later than IDC--IF it is going to recur at all.

    Claire in AZ

  • Waronbreastcancer
    Waronbreastcancer Member Posts: 11

    Thank you for all your replies :) Yes, maybe I should post in the ILC group. I never actually thought they were that different, but apparently they are... Thanks! :)

    Lottemarine - my oncologist is still optimistic with regards to kids. He is the best when it comes to breast cancer in Denmark, so I try to remain hopefull too. I would adopt if that was a possibility, but in Denmark that is very difficult post-breast cancer :(

  • wintersocks
    wintersocks Member Posts: 434

    I am sorry to have to raise this again. I went to see a onc Prof yesterday about prolonged endocrine therapy. I was told to come of Letrozole now I have been on it for 5 years and I asked for a second opinion as to whether I should continue into 10 years.

    The Prof (who I have never seen before) discussed the merits/risks of continuing with Letrozole. Then, once he had punched my stats into the computer. He told me: 'you have a significant risk of dying from your disease' - based on the stats and that I am 5 years out now. I thought the recurrence rate decreased. But he seems to be saying it's increasing as I go into the next 5 years. This is contrary to what I have read here.I don't know how to deal these stats am totally confused and on top note with anxiety and feeling very re -traumatised.

    Anyone? -

  • yatcomw
    yatcomw Member Posts: 57

    I will try to find the article......but I read that for ER+ the chance of your cancer coming back is about equal for 0-5, 5-10, 10-15 years.....not sure how old the article was or compared to other research.....but.......this is why I have stayed on Femara for the last 12. I recently had my oncology appt and was told I could get off of it....but I asked to be on it for two more years and he said okay.

  • wintersocks
    wintersocks Member Posts: 434

    That would be helpful YATCOMV

    I think there was no suggestion from him that being 5 years out - made any real difference to my continuing risk - I am 8/8 ER+. . From your brief explanation above that seems to concur with what he was saying (or not saying). So it seems my risk remains the same from the day I was dx'd? Wow! so using the 5 year mark? why do we mark and celebrate this then if it does not make any difference to our risk stats?

    Also if we are going to recur - we are moving towards the recurrence date not away from it- so therefore the risk goes up post 5 years?

    Am I missing something here?!!

    really rubbish with stats by the way!

  • traveltext
    traveltext Member Posts: 1,050

    As I was told by my breast surgeon, it is aggressive tumors that more likely come back early. As time goes on, my chances of recurrence would decline.

    But with low stage/grade tumors, it's the opposite, in that if they recur, it will be at a later date.

    In any case, I'm over statistics. I celebrate NED annually (three now), and I'm certainly looking forward to a five-year survival party!

  • wintersocks
    wintersocks Member Posts: 434


    I think your dx of IBC behaves differently from IDC er +. I think what SSintheuk states: My Onc said for HR+ IDC Stage 3 the highest risk was 2-4 years after surgery then the risk declined each year 'by a very small amount'. With a starting point of 40% relapse over 10 years, about half relapse in the first five years and the other 20% years 5-10 and YATCOMW's brief explanation seem the most accurate for IDC ER +

    So it seems we have to be really sure to differentiate between the different cancers when trying to work out what recurrence rates are likely for us each. I wish you well in hitting your 5 year mark, I am there now, but my enthusiasm is a little dimmed at this juncture.

  • TectonicShift
    TectonicShift Member Posts: 102


  • dtad
    dtad Member Posts: 771

    Sorry but I'm completely over stats! IMO it's a crapshoot. Try not to get too hung up on them. Unfortunately there are just no guarantees. We all have to learn not to obsess too much and enjoy life. Easier said than done I know. Good luck to all navigating this disease...

  • marijen
    marijen Member Posts: 2,181


    Understanding your test results

    T4 and TSH Results

    The T4 test and the TSH test are the two most common thyroid function tests. They're usually ordered together.

    The T4 test is known as the thyroxine test. A high level of T4 indicates an overactive thyroid (hyperthyroidism). Symptoms include anxiety, unplanned weight loss, tremors, and diarrhea.

    The TSH test measures the level of thyroid-stimulating hormone in your blood. The TSH has a normal test range between 0.4 and 4.0 milli-international units of hormone per liter of blood (mIU/L).

    If you show signs of hypothyroidism and have a TSH reading above 2.0 mIU/L, you're at risk for progressing to hypothyroidism. Symptoms include weight gain, fatigue, depression, and brittle hair and fingernails. Your doctor will likely want to perform thyroid function tests at least every other year going forward. Your doctor may also decide to begin treating you with medications, such as levothyroxine, to ease your symptoms.

    Both the T4 and TSH tests are routinely performed on newborn babies to identify a low-functioning thyroid gland. If left untreated, this condition, called congenital hypothyroidism, can lead to developmental disabilities.

    T3 Results

    The T3 test checks for levels of the hormone triiodothyronine. It's usually ordered if T4 tests and TSH tests suggest hyperthyroidism. The T3 test may also be ordered if you're showing signs of an overactive thyroid gland.

    The normal range for the T3 is 100-200 nanograms of hormone per deciliter of blood. Abnormally high levels most commonly indicate a condition called Grave's disease. This is an autoimmune disorder associated with hyperthyroidism.

    T3 Resin Uptake Results

    A T3 resin uptake, also known as a T3RU, is a blood test that measures a hormone called thyroxin-binding globulin (TBG). If your T3 level is elevated, your TBG level should be low.

    Abnormally high levels of TBG often indicate a problem with the kidneys or with the body not getting enough protein. Abnormally low levels of TBG suggest high levels of estrogen in the body. High estrogen levels may be caused by pregnancy, eating estrogen-rich foods, obesity, or hormone replacement therapy.

    Part 5 of 5: Follow-Up

  • ssinuk
    ssinuk Member Posts: 63

    jumping back on this thread late but to offer some comfort wintersocks - if we take 100 stage 3 patients and they are at 40% risk of recurrence at DX, and 20% recur in the first 5 years and 20% yearcs 5-10 , then st five years 80 (80%) of patients remain healthy and only 20 more of them will then recur. That's 25% of thiose still healthy. My point is that mathematically the risk IS going down. 60 of the 80 will be ok. 75% That looks a bit more like stage 2.. You can look at the numbers many ways. But as always you're either 100% recurring or 100% not. Remember even if stats showed something like a 10% risk of recurrence at 10 years the Onc might describe that as high - because it is compared to other groups. Celebrate that 5 years. It's 5 years.! Celebrate every year. Every day

  • berries
    berries Member Posts: 80

    I found this thread very interesting and helpful.

    Does anyone know or have read if there is a benefit to being very highly ER and PR or what the percentages do to your overall risk? I am 95%+ ER and 80% PR.