Hi FlatNina & Shae
I am pleased to hear that you too asked about the benefit, if any, of taking Hormone Therapy for ER/PR+ I did also, and was told via a Predict test/survey that my Oncologist I saw for that appt did, taking in the details of my 2 early breast cancers ILC right breast & IDC left breast & advised from the data & research, the benefit would be 1% for the next 10 years! Why would I do it? I would not have been told this, nor you, I believe had we not asked about the perceived benefit, which is very concerning & disappointing. I can only imagine the number of women taking Hormone Blocking Therapy and suffering the many side effects some short term but others much longer and quite debilitating & long lasting for very small gains if any, and if they would have chosen to take it if they were told of possibly a very small % of benefit, for their particular circumstances for their cancer.
I have not read the book Estrogen Matters but have listened to many Oncologists including its author and Hormone specialists mostly in the US on all matters to do with Estrogen & Progesterone. There are different types of Estrogens & how they play out in the body are different, with 1 type actually being cancer preventing! I have not taken HRT, I am 55 and was diagnosed with early breast cancers at 54, about 13-14 months after my last period. Menopause has been challenging mostly with the insomnia and 10-12kg weight gain, I would trade to have more hot flushes, unpleasant as they are instead of the insomnia & weight gain. Lately however, I have been considering some form of hormone treatment for my insomnia because I know what damage not having enough restorative sleep has on the body long term & most likely linked to why I cant shift the weight. I will need to do a lot of research to find the right open minded and well researched specialist for this, because like most new & evolving information and research, it takes time to be recognised and implemented, when typically the "establishments" that want to do what they have always done or are told to do by those who control and benefit from the status quo.
Which brings me to my next point.....this new campaign "Know Yourself Feel Yourself " is or all very well & very important but pretty much rehashed info about self checking. My cancers could not be "felt" by 2 different surgeons after diagnosis even when they knew exactly where they were in my breasts. I was fortunate because they were small, also I was told that Lobular cancer does not form like a lump it spreads flat, much harder to feel. The cancer found in my right breast after my very 1st mammogram at the age of 54 which I had been putting off because of the concern of radiation exposure under compression. The left one was only found because of the contrast MRI I was having to stage the right breast cancer. So, after 2 biopsies, a number of Ultrasounds and 4 Mammograms within a very short time span of about 6 weeks (3 which were 3D, so more radiation) I ended up having lumpectomies in both breasts, followed by radiation treatment (15 sessions) and I passed up on the recommended Hormone therapy because of the lack of benefit it would give me, as previously mentioned. My journey now is to monitor, feeling my breasts now is a total waste of time, because after the lumpectomies & corrective surgery for an excessive lump I was left with after my initial surgery they feel like nothing they did before & with all the scar tissue and sensations I now get from nerves, nothing feels normal for me now. So I am left with the option of having annual contrast Mammograms because of my dense breasts, which I must say I don't feel too comfortable about & have very limited alternatives for effective monitoring with minimal risks.
Now, what if there was a new imaging technique that was all benefit & no harm. No squashing/compression of your breasts, no radiation, no contrast (heavy metal retention) from MRI's (which I was not told about when having one) and possibly more & concise accurate results especially for dense breasts and safe to have repeatably over & over again and possibly minimising the need for unnecessary biopsies. How amazing would that be! I have listened to breast surgeons & other specialists, predominately in the US talking about & already using this imaging in the US for a few years now. It is called QT Imaging (Ultrasound) and uses advanced forms of Ultrasound within water and is completely safe and far cheaper than a MRI & can even be used simultaneously with chemo to track if it is having any benefit in real time. Now I am no expert & have no training in these fields, but what I have read and seen by the extensive research already available, and what I am able to understand of it, I am surprised that no-one in Australia is shouting this from the roof tops yet, or at the very least looking into its potential or checking its credibility to see it "its too good to be true" as was a surgeons response at my last appointment when I was discussing my concerns over having regular/yearly 3D mammos with contrast because of my dense breasts, regular mammos isn't gonna cut it, since it failed to detect the cancer in my left breast. I was initially going to pay to have MRI's to monitor moving forward but with further research after having the one I had to have, Id rather not have a serve of heavy metal Gadolinium that is in the contrast and has been known to be retained in the body, predominately in brain tissue, than was originally thought.....hello dementia anyone? QT Imagery is not some crazy pseudo tech being pushed by some wellness influencer wanker but created & designed by a doctor (Dr John Klock) who was also partly responsible for the design and implementation of CT calcium score testing for heart disease risk, commonly used for some time now all over the world.
I have emailed Imaging clinics in Melbourne, Sydney & Brisbane to find if any one has heard or even looked into this, but unfortunately not. There is a clinic in Brisbane that has had a little media exposure about an imaging they do (Cone Beam Breast CT) but unfortunately, even though there's no compression of the breasts, somewhat beneficial, and is better for dense breasts with more clearer and more extensive imaging, it is still relying on CT scan which is still radiation exposure. I have emailed BCNA about QT Imagery asking if its on their radar, but......no response.
With so much talk & campaigning about the importance of early detection and ways of doing that, and helping to minimise the fear, anxiety, stress etc etc that comes with screening, diagnosing, treating & then monitoring, something that could be a complete game changer and a far better alternative is not even being considered, seems just crazy to me. What harm is there for the people responsible, capable and educated in this domain to just look into it and see if it really is "to good to be true" If the science stacks up, why not go for it?
My experience with early breast cancer has taught me, you can never ever ask enough questions & then some & if the responses you get are a bit dismissive or vague, do your own research, or just do more research generally. Understand that your breast/s are not separate to your body but a part of your body, so treatment should be for the whole body & not just your breast/s. Weighing up risk to benefit from screening to monitoring can only be done with accurate up to date information & a healthy dose of trust your gut. The only reason I finally had my 1st mammogram at the age of 54 was simply the 1 in 7 women statistic, no matter how healthy you are, there are no guarantees & I did not think of myself as special to fall on either side of that statistic. I am weighing up which option to go for until a better alternative is made available here, if ever. The Cone Beam CT scan no compression clearer imaging for dense breasts but radiation still, paid for out of my pocket (few hundred $$) with a trip to Brisbane from Melbourne, or the contrast Mammogram with more radiation than a standard one, free with breast screen Victoria? I have more research to do to find out which one exposes me to the least amount of radiation. Or pay for a MRI with contrast which I know is just as accurate if not more that a contrast Mammo but is the Gadolinium in the contrast more of a risk than the radiation, unfortunately I believe that comparison research has not been done. BUT if QT Imagery was here already my choice would be very easy & a no brainer. I would love to hear if anyone else has come across this information or knows of someone who has probably had it done in the US or Canada & what their experience was like.
Cheers.
