Hi all…a quick background. My wife and I live in Spain. On January 25th my wife went for a routine mammogram. The story will unfortunately be well known by all on this forum. She was subsequently diagnosed with grade 2 multi focal DCIS and 4 weeks ago had a mastectomy. She also had the sentinel lymph node removed and all tests thankfully confirmed that there was no cancer present anywhere else. The pathology report showed 100% estrogen positive and this week we visited the oncologist. Not impressed and his advice amounted to “If it were me I would definitely take Letrozole”. He , unbelievably, could not lay his hands on figures to back up his advice. I have investigated best I can the pros and cons of this drug. Whilst I understand all drugs nowadays come with lengthy warnings I have read many horrendous reports of side effects relating to Letrozole and the fact that it is taken with a vitamin D supplement due to increased risk of osteoporosis hardly inspires confidence. It would seem that a women who has a mastectomy has between a 4 and 8% chance of the cancer returning to the other breast over a 20 year period. ( 0.2 to 0.4% increase each year). My understanding of Letrozole is that is claims to reduce this risk by up to halve which translates to between 2 and 4 % of women over the 20 years. A small ,but for many I’m sure, important difference. Significantly there is no claim that actual life expectancy/survival rate is improved at all. I would welcome the views of this forum re these figures and re the pros and cons of Letrozole being taken for a minimum of 5 years and probably considerably longer. The chance of chance of reoccurrence in other breast during the 5 year time frame would be very low ,between 1 and 2% , without any treatment. My wife is 56 and is slim and very fit and healthy. Our view leans towards not starting the drug at all as we have also read that coming off the drug after a couple of years can actually increase the chances of cancer returning. It seems that you are encouraged to fight through any possible side effects but even with no noticeable side effects the underlying worry relates to the risk of osteoporosis or cardiovascular disease (see review in British Medical Journal) and indeed brain function which could go unnoticed. Thank you for reading and any input would be very much appreciated.
I’m in a similar situation, although 10 years older than your wife and currently I’m leaning towards not starting an AI but I think I’m in a minority. In case you haven’t come across it, she might like to look at breast.predict.nhs.uk/index.html which gives different percentage benefits for different treatments.
I’m pleased that you’ve understood how the figures work in this situation, too many people hear the phrase “cut your risk by 50%” and never ask “50% of what?”. It doesn’t speak well for Maths education in the UK!
Good luck to you both from here in France, at a worrying time on all fronts.
I can certainly see where you’re both coming from on this & I would feel similarly, especially with DCIS if there was no invasive bc.
In my case, I had a small invasive bc & tamoxifen was recommended initially, then an AI -anastrozole after a couple of years. However, with the oncologist’s & surgeons agreement, I stayed on tamoxifen as side effects have not been an issue & it is protective of bones & the cardiovascular system, although it can increase the blood clotting risk. As I’m low risk, statistically it doesn’t make a lot of difference, although if my diagnosis was to change, then of course, I would go onto AIs if recommended.
Good luck with it & obviously your wife will do what she’s comfortable with.
I understand your concern as I initially refused both chemo and Letrozole much to my Oncologists dismay . My tumour was Oestrogen positive and had spread to lymph nodes. I was fortunate enough to have my tumour re anaylsed as part of a trial and was advised that I would not benefit from Chemo but would have my chances of recurrence reduced more by having hormone therapy ( Letrozole) . Having that 2nd opinion changed my mind and I have agreed to Letrozole and Radiotherapy, but on my terms !! Having done my research it seems that if you can maintain the same manufacturer of Letrozole , you can help keep the side effects down , so I have done the leg work , found a pharmacist who will order my brand continually . This is an independent pharmacy as the big chains are not able to order any brand , just those on their list ?. I have been taking it for 4 weeks and the side effects are limited to nausea and tiredness .
I am not a person who will just agree with the medication / treatment prescribed and will question the decisions made .
My Oncologist has re assessed my risk with the current medication and treatment which raised my survival rate from 55-76% over 15 years . Chemo only was 62%.
I just hope that this gives you a little bit of help with your research . Feel free to ask if you have any questions ?