I am drug-averse also, believing in the body’s amazing way of balancing itself. The introduction of toxic treatments upsets that finely-tuned balance and often leads to yet more and more corrective medication as a result. Your doctor’s an a*%e - not helpful or kind, that ‘told you so’ attitude. Statistics are largely guess work, can be manipulated any way you choose, but generally suggest only a small reduction in risk anyway. I completely identify with your dilemma.
I had invasive mucinous breast cancer in my right breast (21mm, no one seemed much concerned about that one) and invasive lobular cancer in the left (11mm) with one node involved which was extracapsular (broken out of the casing, but no medic has bothered to go on to discuss whether that means I automatically have vascular invasion, or if it was even checked for; they are all so damned evasive at best, secretive at worst).
Both were strongly hormone receptor expressive ER+8, PR+8, HER2- (ideal for hormone therapy).
Both were Grade 2, eventually. Oncotype DX scores low at 7 and 9 respectively. Given a 12% risk of recurrence (at the 9-year mark, I think) IF I took all the meds. NHS Predict doesn’t help me really because it can’t handle 2 concurrent sets of data for the 2 cancers, and stats are based mainly on ductal data (because the very differently behaved and biologically-different lobular is about 50 years behind in its research).
I opted for mastectomies (without reconstruction - didn’t want to mess with any other part of my bod) because I’ve a strong family history (but probably not BRCA 1/2, as my sister who was tested didn’t have those gene mutations) and I just wanted all that dangerous breast tissue gone. ‘Get it all out’ was my strong initial reaction, no question … for me. I’m as happy as you can be with ‘going flat’.
I have got my fingers tightly crossed for your results. Please do post back. We will all be here with support or celebration, whichever is the case. x
On your point about Dr. Google:
What the hell do the doctors expect you to do when they divulge SO very little information? It’s all very well that we are handed the decision to make for ourselves these days, but then we are left in the wilderness of ignorance about HOW to choose. So unfair and quite frankly, downright cruel. I have spent SO many hours on the internet searching for established organisations, but not just the kindly headline organisations, more the clinical papers, drug manufacturers’ leaflets, NICE and trials results (which were mostly beyond me). If only the medics would collaborate.
“Yes, one plays the odds but having had surgery, chemo and radiotherapy, I feel I gave it my best shot and I wasn’t prepared to give up the rest of my life so that I might enjoy a little longer of such an uncomfortable existence.” Absolutely.
“Yes, my oncologist is a little sniffy about my decision but his raison d’etre is to keep me alive.” Again, ditto, my point too.
“However, I do wish oncologists generally would be more upfront about how hideous the side effects of Letrozole can be for many people. They seem to me somewhat dismissive of the affect it can have on whats left of our lives.” I could not agree more strongly!
Thank you for balancing the debate with your positive experience of hormone therapy. Of course it can be a very tolerable and effective treatment for many. My intention was not to scare anyone, but to alert them to the side of the debate that consultants shy away from.
For me, the decision rested not on the actual day-to-day side effects I was experiencing, but rather the shock of realising that the very serious conditions and damage the AIs and Tamoxifen can cause are not as rare as I imagined.
My hope is that I no longer have any cancer cells left in my body after the surgery, the lymph node clearance and radiotherapy, AND that no other cells start to become cancerous before I die of something else !
Just to contradict you on one point, though, oestrogen does play an important role in many functions of the body. The lack of it is precisely what does cause many of the common side effects other than osteoporosis (such as hair thinning, low mood, irritability, disturbed sleep - all the usual menopausal symptoms, as you’d expect, yet more so because on hormone therapy you virtually have no oestrogen, whereas normally, the body manufactures oestrogen in a different way to compensate for the loss of it from the ovaries.)
I am very pleased for you that you are comfortable (physically and mentally) with the choice you have made. Thank you again for contributing.
Estrogen does play an important role most certainly but some people can do quite well without it for whatever reason. Thus far I appear to be one of those people. Hopefully that does continue for many more decades. I wish you well in the choice you made also.
I was told by the doctors that the only option of hormone blockers I could take was tamoxifen since I am premenopausal. I was diagnosed with stage 1 invasive lobular cancer, grade 2. I had lumpectomy with clear lymph nodes, brca negative and ER/PR + and HER2 negative. My oncotype dx score came back low with 3% of reoccurrence with tamoxifen. I am not saying my risk of reoccurrence is not there and I would probably be more at risk if I did not take the meds. I am just scared to take these meds due to the fact that I have no alternatives to tamoxifen if I was to experience some bad effects. I have witnessed 2 close relatives and my good friend that suffered the serious side effects that are listed for these drugs. Just going by what I seen it really makes me question the 1% chance of risks of the serious side effects. This is difficult decision and I have not made my choice yet but it is hard for me to say yes to taking them when I have seen the people I care about have been affected by these meds.
Hello MistyK and all, I just read the whole conversation here and it is really helpful to get different views. I started a thread a few months ago for the same reasons I think it was called ‘minimal benefit from Letrozole’.
I was and still am extremely puzzled by the hard sell from the medics on such ineffective medications. Predict scores are so insignificant and yet we are all told we risk the cancer returning if we don’t follow the treatment plan. If Predict figures are correct then the risk is there anyway and barely affected by the influence of the drugs. And yet, people have observed and commented on the huge improvements in survival rates since the introduction of these drugs. None of it adds up. I agree with the comments that some oncologists are ill-equipped to provide a plausible explanation for their recommendations. One chap (who was very good and listened to all of my questions and worries) told me to look at the difference between absolute and relative risk, I did that but I am none the wiser. He showed me the 100 dots and explained that 85% of people (my age with my diagnosis) will be alive and disease free in 10 years without any further intervention. He went on to explain that if I was one of the 7 or 8 people (the rest would die of something else) where the cancer would kill me then the drugs were improving my chances by 40% or thereabouts. I asked whether they ever thought about the harm they were causing to those 85 people and the response was ‘I have never killed anyone with treatments; cancer kills’.
I am taking the treatments (Letrozole and Bisphosphonates), I have horrible daily side effects and I am terrified of the long term ones. I don’t want the drugs but for some reason I still have this instinct to do what they tell me despite all my own research pointing in the other direction. I am currently (a year after diagnosis and about 6 months on Letrozole) too scared to defy them. We are all so different, (diagnosis, age, outlook) that it is difficult for us to take influence from other people with breast cancer but reading other’s thoughts is always helpful. x
I had the exact same cancer and treatment in 2022. Started Tamoxifen in Nov 2022 and yesterday I was diagnosed with thickened endometrium (14 mm instead of 4 mm) and a large cyst with two daughter cysts on my right ovary. Waiting for them to let me know what they think should happen next but I decided that I am stopping Tamoxifen. The Predict site gave me 1% extra for taking hormone therapy… I tried… but I am not putting up with these serious side effects. I am all wound up now and might think differently tomorrow so it’s reassuring to read that it’s ok to take a 6 week break. Maybe I do that while my treatment plan (if any) gets sorted out?
I do think it’s worth adding that the minimal benefits one experiences up front with the endocrine medicine turns into quite substantial benefits decades out. Doesn’t matter as much for older people but for those diagnosed younger it’s something to consider.
MistyK, I’m glad you posted this as an independent topic; we communicated briefly on a topic I posted to get experiences from others who had knowledge about taking Raloxifen & or Tamoxifen for both BC & bone health. It’s good to see everyone posting their experiences, with many variances & I see there is also a spectrum of age ranges. As my treatment journey continues to be an evolving one, I thought I’d add my tuppence to this topic.
I was diagnosed with G2, multi-focal IDC at 48 (1st anniversary last December), had a single MX, followed by an axillary dissection after 1 of 4 nodes in my SLNB came back positive, LVI & PI present. My original oncology treatment plan did not include Chemotherapy (due to lower ODX score) or Chest wall Radiotherapy (RT); I requested the rationale for the MDT decision on RT and was referred to speak with the clinical oncologist, who went through a myraid of statistics and short term/long term side effects it was explained to me that there was no strong indication for it, but that in some other NHS practices it was being offered to those with my category of tumour profile with an intermediate risk of local recurrence, so the decision was ultimately mine and they would support me whichever I chose. Given this I did my own reading and went for a second opinion which suggested it would be reasonable for me to have RT given said tumour profile recurrence risk factors. So, I ultimately had 5 fractions of 26Gy.
From that perspective I’d say I was certainly given a lot of data/information; & at the time felt somewhat overwhelmed with the amount of data but appreciated getting it in writing in the form of a clinic letter to refer to later & return with questions. I have found that the process of making decisions is never easy; sometimes due to lack of information (my tumour profile did not fall into the proven low risk or high risk categories & thereby insufficient data to support treatment decision making even with the most forthcoming of consultants), and sometimes due to too much information to digest and interpret as it is not conveyed in a manner that a non medical layperson can really understand, and then other instances where you have to fight your corner to get information that is available such as pathology reports.
Regarding endocrine treatment: I went through my menopause transition (1 year from last period), just after my second surgery, so the provisional drug of choice “Tamoxifen” (SERM) changed to “Letrazole” (AI). I went through a somewhat turbulent peri-menopause, and know that the lack of eostrogen is something that will likely affect my life in a tangible way, based on my positive experience of taking HRT for a short period of 4 months prior to my BC diagnosis. Anyhow I am now 8 months into starting Letrozole. The short term side effects have been menopause related and joint stiffness. And for me the joint stiffness effects have been cumulative increasing with time, during the first 3 months they were not significant enough for me to highlight, but 8 months on certainly are. I can’t quantify most of the menopause related side effects as they are varying in nature but would rate fatigue as the number one. My baseline DEXA scan done 3 months into starting letrozole, reflected osteopenia. This was a trigger for me to reconsider the choice of drug (AI based on RxPONDER trial data proven to have marginally better outcomes for women who have been through the menopause). Had it not been for the DEXA result I would have been discussing a change to another AI with my oncologist. However due to my concerns around bone health, I have spoken to my medical oncologist, GP and also most recently seen a rheumatologist to help me make as informed a choice as possible at this point in time. I realise now that for me it will be very much a trial and error process and I am currently on a 6 week medication break agreed with my oncologist, with the aim of switching to tamoxifen unless something else crops up in the interim. I do intend to ask if I should have a baseline gynaecology review (endometrial cancer risk) and also plan to have by eyes checked with imaging (cataract risk) prior to starting tamoxifen as a way of being able to measure what if anything has changed after changing medication. At present I have prioritised those as being the most significant silent long term risks that I can take monitoring action towards. The rheumatologist recommended a repeat DEXA scan 1 year from starting Tamoxifen if I decided so make that choice at which point I intend to make a further decision on treatment, whether that is no change, or something else. For me it really feels like it’s going to be an informed decision tree based process where I will include quality of life in the equation along with other factors such as recurrence risk tolerance, point of view on short term & long term side effects, new treatment options, family medical history etc…
Hello Kay, I don’t understand what you mean there. Why are the benefits greater in later years? My understanding is that the Predict figure means you are (let’s say) 3% more likely to be alive and disease free in 10 years if you take the drugs as prescribed. I don’t think this either increases or decreases during that period. I accept that recurrence is more likely in the earlier years but that is with or without the drugs and, I assume, factored into the Prediction. Have I misunderstood?
Cheers x
For the first five years I only have a 3% benefit from hormone therapy. At 10 years it goes up to 7% benefit and at 15 years it’s 11.1% benefit. Everyone will be different but with a hormone positive cancer the protection from endocrine therapy means more the longer you live. The reasoning as I understand it is because hormone positive breast cancer recurrence rate only goes down a little bit after five years. For the most part, it remains pretty steady up to 15 years after diagnosis and goes down a little and continues going down but can recur up to 30 years after diagnosis. Endocrine therapy is thought to work in two ways, one actually keeping any errant breast cancer cells from being able to get the fuel that makes them grow and then by also just flat out killing them. So if you’re on endocrine therapy for five years you may have actually killed those errant cells making your recurrence score be much less later on then it would have been without it.
We live in mercenary times. Why are oncologists so keen to push the meds? Incentives from drug companies is hardly a new phenomenon. Health trusts desperately need more money…
In spite of the “No one’s forcing you to have the treatment; the choice is yours, at the end of the day” phrase being trotted out, it seems to be the norm to be made to feel guilty or crazy for going against a doctor’s trite advice, and that whatever ill comes our way afterwards serves us right for doing that. A subtle form of emotional blackmail - the implication being that if you turn down recommended treatment, you’re obviously going to be putting yourself at greater risk. But that may not be the case. It’s not a given. We cannot know how our bodies might have fared if we’d taken the other road. You can’t test out the ‘with drugs/radio/chemo option’ and the ‘without option’ simultaneously (obviously), and arrive at the end your life to discover which would have produced the best outcome for us. So we can never know the answer to “What if I had / hadn’t …”
(At least all this discussion is keeping the little grey cells working !)
Crikey TDG - that’s a lot ! More than a tuppence worth.
Glad you’ve found this thread of interest.
Please would you mind clarifying for me the acronyms LVI and PI. When my one node came back positive, neither of these terms was mentioned. I’m wondering if I should be asking for a confirmed negative of these spreads for myself, as the node did have extracapsular spread.
I was offered chemo with Herceptin, radiotherapy and Letrozole. The difference between no treatment and having everything is 6%. I declined chemo and Herceptin, had radiotherapy and have started Letrozole but it’s so difficult to know whats best. I don’t think i had enough information to be honest.
My viewpoint developed over the 18 months I’ve been in this situation is that it’s a crapshoot. I’ve met people who had similar starting points (diagnosis/prognosis) with wildly different outcomes. Looking for incontrovertible information (which, as a retired City lawyer, I tried to do) is futile as there is none. On a personal, individual level it’s all a wet finger in the air. One can base a decision on “facts”, statistics, trends, examples, whatever but no-one, not you, not the medics, no-one knows what your outcome will be until you die of secondary cancer or die of something else. The only criterion worth considering is what will give you the best quality of life to that point. If trusting in the medical team and “throwing everything at it” gives an individual relative peace of mind, fine. If deciding that the impact of one or more treatments will have a deleterious impact on the body and mind and considers quality over quantity of life to be more important, then also fine. Whichever path is chosen some will get recurrence and some won’t. Some will get mets and some won’t. It’s a crapshoot. The important thing is to have no regrets so we must all consider carefully our course of action. For frame of reference, I should say that whilst I have had cancer, my partner had motor neuron disease and my mother had dementia. I consider myself to have got the better end of the deal as a significant majority of those with breast cancer go on to long, recurrence-free lives. The same cannot be said of the other two conditions.
Only after posting my reply did I realise how long it was. Apologies
LVI = Lymphovascular Invasion; PI = Perinural Invasion.
If these were present they would appear in your pathology report. I first became aware of LVI after seeing it mentioned as part of the clinic letter summary my GP received, after which I requested my pathology reports from the surgical team & did my own reading. Based on my experience these types of pathology characteristics won’t typically be shared by the surgical team (Surgeon or CNS) in the summary they give you at a results appointment.
And just so you are aware, while the chances LVI & or PI being present are higher when you have a positive lymph node, it’s not always necessarily the case and vice versa, you could have LVI & or PI present, even without a positive lymph node.
