This is a study that I was unhappy to read and am more unhappy to report. However, since I believe that knowledge is power, and that we all do better if we are well informed, here it is. Published in the Journal of the National Cancer Institute, the data comes from a Danish study of more than 20,000 women who were diagnosed with early-stage breast cancer between 1987 and 2004. They were all disease-free 10 years after diagnosis.
There must be better ways to understand risk and how best to provide surveillance and care for women who need it.
However, between year 10 and year 20, 2,595 women had a breast cancer recurrence. Continuing to follow them, the researchers found that the cumulative incidence of recurrence was 8.5% at 15 years, 12.5% at 20 years, 15.2% at 25 years, and 16.6% at 32 years. The good news here is that the incidence slowed as time went on, but it is very distressing to recognize the duration of risk. Women who had primary tumors larger than two centimeters, positive lymph nodes, and ER-positive disease were at higher risk for late recurrence.
As you likely know, there is not a single standard for the duration of hormonal/endocrine/anti-estrogen treatments (tamoxifen and the aromatase inhibitors) for women with ER-positive breast cancers. Many women are treated for five years while others continue for another five years or indefinitely. Oncologists consider the specifics of each case, evaluate the risk, and recommend either continuing or discontinuing the medications.
Like everything else, there are pros and cons as every drug brings the possibility of risks or side effects. Sometimes women have other medical conditions that influence this decision. As a generalization (remembering I am not a physician) women who are considered higher risk for recurrence are likely to stay on these drugs longer than those who are considered low risk.
I only put this on because I was diagnosed at age 48 with oestrogen positive cancer left breast in 2003 and then again in left breast at 66 in 2022. If I were diagnosed again in 2031 I would be 86 but I now only have one breast - the right one. I havenāt had breast cancer in this breast so I may never get it again. The really negative thinker would remember that even a mastectomy doesnāt remove all breast tissue. 86 is normal life expectancy for a woman as of 2020 I think so whatever I do is not certain to make any difference.
The cancer oncologists have not worked out how to stop us getting breast cancer so we live happily ever after, forever.
They donāt factor in deaths from other causes on our life expectancy. As long as the death you have is not recorded as due to breast cancer, thatās a success. It might well be that the side effects of breast cancer treatment has reduced life expectancy. I now have high blood pressure which I attribute to cancer treatments. I may also have high cholestrol. I will soon be receiving the results of blood tests which I had on Tuesday last.
I am now taking amlopidine for high blood pressure. This was prescribed after I was sent home with a blood pressure cuff on my arm which took regular readings of my blood pressure over a 24 hour period. I think the GP has analysed the results and will look at this plus my blood tests to let me know how bad my blood pressure is and how high my cholestrol is. Itās quite scientific!
Well, now we all know, and now you have a whole bunch of supporters, dolly75 !
I admire your attitude and strength, and hope your courage and spirit serve you well.
Wishing you the best of luck. xx
Sadly, weāre never safe, but if we do get respite for many years between occurrences, without meds and without mets, thatās a lot of life to enjoy, whichever route we take.
I took AI Anastrozole for 10 months. The side effects seemed to ramp up around the 6 - 7 month mark. By 10 months, my dominant hand was rendered pretty useless by joint pain, as were hips, thighs, knees, ankles. Very poor sleep, short-tempered, hair thinned a lot, feeling pretty sorry for myself (with lymphoedema and Diabetes 2 to keep on top of too). Started to feel SEs waning after about 4 weeks of abstinence but honestly, I would say it took more like 12 weeks to feel fully re-energised, mentally sharper and mobile. Still waiting for hair to thicken up again, but hair changes can take about 6 months to manifest. Everyoneās different, I guess.
Thank you very much for contributing and for all the really useful information. I am especially appreciative of you explaining relative risk v absolute risk so clearly.
Good luck to you x
Thank you for taking the time to pass all this info on to us, and for the reminders of various stats. I had invasive mucinous (right) and invasive lobular (left) diagnosed within about a week of each other. Both ER+8 and PR+8 (HER2-). Being strongly oestrogen receptor expressive makes me an ideal candidate for AIs, which makes it even more nerve-wracking to choose to drop them. The lobular cancer tends to recur late if itās going to, so 10+ years, although 3-4 years, and 8-9 years are also āhotspotsā for recurrence.
Iāve never been able to determine my own personal risk %age clearly, because I had 2 different cancers, 1 node involvement (with extracapsular spread), radiotherapy was delayed re NHS backlog, for what little time I did use Anastrozole (10 months) I delayed the start of that through fear. Iāve tried to engage 2 consultants in more than the superficial, bog standard responses but alas, to no avail.
I expect you do know of the NHS Predict tool for predicting risk. This is a very broad guesstimate, but it does factor in deaths from unrelated causes. As very little (probably none) differentiation is made between lobular and ductal breast cancer data used in the model, it doesnāt take into account the different biology and paths each of those take. Nor can you enter 2 sets of data for the 2 concurrent cancers simultaneously for a combined risk. So, all things considered, I feel I may well have a higher risk of recurrence than this would suggest.
Also, the Predict tool (I believe!) is not a predictor of metastasis, which is the other possibility.
I now know (after the event, of course) that the axillary clearance revealed no further involved nodes. The axillary clearance is what caused the lymphoedema. I could have chosen radiotherapy alone instead, and not ended up with this chronic condition, but that would have been working blind and I wouldnāt have known the extent of the spread.
Perhaps before working out how to protect us all from cancer entirely, can the scientists please start researching lobular cancer (50 years behind ductal cancer research) to investigate its biological and behavioural uniqueness and come up with targeted treatments for this very different subtype. (On that matter, Iāll post this website link again for convenience) : https://www.lobularmoonshot.org/
Thanks again Seagulls x
Iām going to take a sabbatical from posting for a while as I seem incapable of keeping it short, and Iām seeing 5am far too often lately! I think pretty much the whole of my story is āupā now, anyway.
Iām so glad this thread has engaged so many of you. I will still be checking in regularly to follow the debate.
Sending universal love out to you all,
MistyK x
Thanks Mistyk for starting the thread, it has been very interesting to read everyoneās experiences and views. I read the same research as Seagulls post and it was also very interesting. Thereās no decisive clear route any of us should take on the big C pathway, we can only listen to the oncologist advice and choose. Itās going to be a bit of a lottery as weāre all different. I think itās clear that we individually have to decide whatās right for ourselves and along the way also decide if we need to change routes
As has been said before, other health and medical issues may influence decision making and there may be other external/personal influences too, in the end it may be something other than cancer that gets us anyway !
For my own life journey I had a lovely daughter early 20s but flat lined 3 times in my late 20s from an ectopic pregnancy but survived. During my life Iāve had knee and spinal surgery, ER+ PR+ HER2- LVI breast cancer twice involved chemo, radiotherapy and mastectomy and recently a few months ago a hemicolectomy (bowel surgery)for a pre cancerous SSL (serated sessile lesion). I now have painfully debilitating PMR (polymyalgia rheumatica) which is thankfully under control with prednisolone steroids, vitamin D 3, calcium and they wanted me to take bone strengthening infusions or tablets but these affect the jaw and disable future dental work. After chemo my teeth started to fracture and continue to have issues so the dentist warned against so I had to decide not to take it. Iām still unsure what to do for the best on this one. I have osteoarthritis but I have a good healthy diet and despite everything I am able to maintain an active lifestyle thanks no doubt now to the steroids and getting literally back on my bike, love swimming, walking daily and pilates. I love my garden and keeping socially busy but also having downtime chilling out peacefully for moments of contemplation and music.
Move it or lose it is our motto and carrying on regardless. Embracing every day!
Iām truly thankful for every day, for my wonderful husband, daughter, grandson, family and friends who keep me going. Every day is a blessing to be thankful for everyone. Make the most of it, not just for you, but for those around you who struggle with your diagnosis too. Sending you all so much love, peace and happiness apologies for rambling on
Thanks Misty I will follow your link. I met a few women who had lobular cancer diagnoses when I attended a support group in 2004. A very baffling thing to find a hard area rather than a lump, One person was diagnosed by her dog. Apparently they can tell from their excellent sense of smell.
Seagulls what you post is correct, but long recurrence risk does vary with tumour type. I was told by my onc that very aggressive tumours (mine was HER2+/G3) come back early if they are coming & that 7 years out from diagnosis was a āgood place to beā. Not a guarantee of course but still a welcome comment from someone that was so convinced mine was coming straight back after chemo that she refused to take my port out for 6 months! I knew that was the case for the HER/G3 element but I had thought that the ER+ recurrence risk element remained for life. She said not for very aggressive tumours.
Remember we all have the power to reduce our long term recurrence risk through regular exercise, stress reduction & healthy diet. I found this preferable to worrying, crossing my fingers & hoping for the best. Additionally because you feel that you are influencing your outcome you worry less about it.
Not as easy to research as drugs, but also effective.
As I hadnāt told anyone, I tried to full them at the hospital, that taxi was picking me up after surgery and I was going to a friends house. When they wheeled me into operating theatre, they asked me again who was picking me up, and when I said a taxi, they said well you will not be going home today, so I stayed in hospital over night, and I was so glad that I was there, as I would have felt sorry for myself had I went home on my own. Next day I got a taxi and that was that. My doctor tried to get me to tell my family, but to be honest that is the way I can deal with this. I thank you for your kind words Tigress. But I have always been stubborn. Love Dolly75
I am going to a hospital appointment on Thursday.
I told the nurse Iām not on AIs
As I have been in pain for nearly a year due to permanent nerve damage from removal of 12 of them 0 zeroT.
So I couldnāt cope with no right arm and poor mobility.
I didnāt know which side effect was which one
Finally paid private pain consultant itās permanent got some proper medication.
Can now think about that one
Thanks Bibi. I was going on my experience of having oestrogen positive cancer each time I have been diagnosed. Thatās the one that can come back a long time later. Having said that, I had a different kind of oestrogen positive cancer this time than last time. So it was not a straightforward recurrence but a new primary. Grade 2 this time grade 1 last time, of no special type this time, last time it was a rare cancer called glycogen rich clear cell breast cancer. This time I had lymph node involvement too, last time it was no evidence of lymph node involvementā¦
At 75, Dolly, I probably would have done the same thing. So no need to apologize! We all have to weigh risks versus rewards with any of this and I wish you many more wonderful years!
@Tigress, @JoanneN & @MistyK thanks for sharing your experience re: timeframe it took for your endocrine treatment side effects to reduce when you had a treatment break. That gives me a sense of what to expect (though I realise each of us may have varying experiences). 3 weeks into my break now my muscles and joints feel marginally better but I expect the changes will be subtle and slow, similar to how my side effects gradually started to build up when I started treatment. Interestingly my hot flushes appear to have increased after stopping, but not to unmanageable levels.
Good luck @TDG. Isnāt it odd how we differ in our reactions to this stuff? Iāve never had any menopause-like symptoms on Letrozole but then I was 67 (just) when I started taking it and thinking back, I donāt remember much in the way of hot flushes when I actually went through the menopause 13 years before. All I do remember is being in a thinly disguised murderous rage with everybody! Anyway, I hope you get some respite for however long youā re off it.
apologies for rambling on 
