I’m so interested to hear of your experience - I too suspect that there’s some over prescribing going on! After being led to believe by my surgeon that hormone therapy wasn’t negotiable, I very fortunately I had an oncologist who really listened. He asked how I thought and felt about future treatment and asked what I wanted him to explain first - radiation therapy or hormone therapy. When I said I was dreading hormone therapy he first gave me the results of the predictive testing the computer spits out (he didn’t name what tests exactly!) My risk of recurrence was 20% with no further treatment, brought down to 4% with 5 days radiation and only another 2% with hormone therapy. So I thought it was a no-brainer…5 to 10 years of a drug with so many potential side-effects - some serious ones that are too late to put right by the time they’ve done their damage! At 68, I have experienced menopause symptoms - my body thermostat has never fully recovered and I was alarmed at how young nurses were assuring me that I might not get any symptoms or that they wouldn’t be so bad! The oncologist was great and made me feel so much better because I had been involved in my future treatment. He didn’t push anything on me and offered more time if I needed it. However, the nurses were not so approving - even the radiologist questioned my decision when she tried to press on me all the info about AIs at my last session! I didn’t actually get any argument from my BC nurse - but there was an evident surprise and expectation that I’d be taking the drug.
I know enough people who have had to give up hormone treatment to make me determined to be involved in the decision making. I’m shocked to hear how much suffering ladies are having when sometimes the percentage advantage is so low!!! At our time of life quality of life is paramount - I don’t want to suffer for 10years to be declared OK at nearly 80!!!
Dear Geeps,
Thank you for your contribution and sharing your experience. Here in Spain we only see the oncologist AFTER treatment- in my case after surgery ( bilateral partial mastectomy) and 4 weeks of radiotherapy. Then I was prescribed Tamoxifen which brought me to the brink of suicide so we switched to Anastrozol ( an AI). I’ve been taking these for two years and have had many unpleasant side effects, including sexual problems due to dryness ( oncologist would not prescribe topical estrogen), depression, anxiety, bone pain ( I already have osteo-arthritis which I manage quite well with supplements and magnesium and diet), brain fog, and now have been diagnosed with a pulmonary embolism in my lung. My prognosis after surgery and radiation was 95% survival rate and with 5 years of hormone therapy this goes up to 97%. So, as you say, a no -brainer. I’m 75 now, and have always have been a keen hiker and swimmer, up-beat and positive. This has transformed into a forgetful, miserable and asexual being. There is documented evidence that hormone therapy can sometimes cause blood clotting ( although I think that’s more likely to be Tamoxifen).My next oncologist appointment is the 4th of July - my freedom day !
Last year I walked 120kms o the Camino de Santiago to raise money for a local cancer charity here who helped me a lot with my trauma. My daughter is getting married in September in UK and we planned to do another pilgrimage walk together at the end of September. I’ve had to cancel my upcoming flight in July to UK for my Ex’s 80th birthday because of the blood clot on the lung. But I’m hoping I will be ok for the flight to the wedding and the Santiago pilgrimage in September. I’ve now been put on blood thinners for 6 months. I have always had a very healthy life-style, mediterranean diet, lots of exercise- walking, swimming, dancing , very moderate drinker, non smoker, etc. Now, I don’t know for certain the cause of this blood clot, but on July 4th I will stop this madness and try to resume normal life!
Good luck with your journey!
Best wishes, Jean
Geeps, you are soooo lucky to have an oncologist who listens!!
Mine is like an automated recording…it’s as if I am not there!
Sending hugs and wishing you luck!
Jean
Thank you Dolly, I’m going to look into that. I’ve had OncotypeDX test and had a low score of 6. I’ve had 19 days of radiation. I’d discovered that the American Oncologists society don’t recommend radiation treatment for women age 60 to 69 with an OncotypeDX score of 12. The Irish oncologist didn’t want to know that. I was told they weren’t familiar with that paper even though I produced it at the consultation. I was told they use European standards of treatment. I felt pushed into excepting there treatment or to walk away from them, they really don’t like been questioned in Ireland.
Lisa
My onco test was 29 so I was aduves to go for chemo. I did 2 sessions, collapsed in way to Sainburys ?x just b4 my 3rd session. Was taken to hospital where they couldn’t find a reading for my blood pressure for ages and my heart beat went down very low. After the 4th day in hospital I decided, and had been thinking about this fir a couple days, I wasn’t doing any more chemo. I think if I had dine there 4 chemos, I’d b dead now. I had 5 sessions of radiotherapy and was put in Anastrozole. And that pill is causing me untold problems. I stopped take ing it on 7 June but went back on
it 15 June. The problems I had taking that meds was worse when I came off it. My back pain is hindering any form
if a good life .
An oncotype test with a score of 6 is amazing. If mine had been like yours I wouldn’t even have considered chemo. Loosing my hair, and this happened between the first and second chemo, nearly broke any strength I had at the time. Now I have a lovely head of hair,?, and I’m feeling good except for the side affects of Anastrozole!! I’ve been trying to weigh up, I’m 71, the pros and cons of taking this medication. I’m frightened to stop taking it indefinitely. But I will have to make a decision cos I can’t go
On much longer with the side effects?♀️
DCIS stands for Ductal Carcinoma In Situ
This means there are cancerous cells but they are entirely contained inside the duct.
Once the cells break out into areas of tissue outside the duct it becomes IDC
Infiltrating Ductal Carcinoma
Technically DCIS is pre-cancer but a lot of cancer specialists have taken the view that it’s going to become cancer at some point.
I had focal DCIS first time so that was cut out with the cancer I had and I had breast conservation with radiotherapy to mop up any stray cells. This can’t have entirely worked as I had a new primary 19 years later.
In GB, The National NHS NICE guidelines on treatment of early breast cancer probably has guidance on treatment of DCIS to ensure consistent good practice.
As much as this is possible!
Seagulls
Brilliant!! You were very lucky it’s your oncologist. In my case I don’t ever want to see mine again -an arrogant man with no empathy. I make a lot of decisions myself now cos unless you are walking in my shoes no doctor, nurse, surgeon, oncologist knows how I’m feeling. I’ve been trying for weeks now to change my meds from Anastrozole to ex and I can’t remember the name of the bloody meds? but i will get listened to, and I will give these meds a go. I took myself off Anastrozole on 7 June but went back
on them 15 June cid the side effects I was experiencing were worse than what it was like on the meds. Being really truthful, I was afraid to stay off them!! And as a result will try the ex? Meds. But if I get the same side effects, or even different but bad, I will stop all medication. I’m 71?♀️I fined breadt care in York ladt Wednesday and nurse said she will review my meds. If I don’t hear back tomorrow, I’ll fone again. On Thursday night I emailed Macmillan and got a reply on Friday lunchtime. I was advised to go to b monitored that same day cos unexplained back pain has to b investigated and they more or less said I possibly could have secondary cancer in my spine and that I should phone 111. Didn’t do that till Saturday mornin but what I did do was phone my gp surgery, and read out the email from Macmillan to the receptionist who is there to triage me. Success, only in a small scale, was that my PHONE call on 4 july(Jesus wept) was changed to 27th June, with an actual doctor. Good news from 111 - after being triaged, and I was only looking for info, I had s call back saying it’s very unlikely that I had secondary cancer but it still has to b checked. I was also perscribed very strong co codomol we will see what happens. Rant over xx
I do so agree. Over prescribed - and it’s a potentially dangerous drug after all, which you’d think requires more considered, informed consent rather than…”now here are your pills!”
Good luck to you too Jean! Fancy only seeing an oncologist AFTER treatment! Was anything explained to you by anyone beforehand? My breast surgeon was very good but he led me to believe that HT was just one of the things I would be getting - full stop. That is, until I met the oncologist. It’s such a potentially dangerous drug that you’d really think women would be required to give more informed consent before it is prescribed! Even if people tolerate it on the surface - what long term or underlying damage is lack of oestrogen doing? (In younger people cancers can be more aggressive than in older people, so I would see it from a different viewpoint if I was younger). Also, are they saying that we will have no recurrence risk after 10 years (when something else will be likely be getting us)? Or do the studies finish at 10 years tops? It all sounds a bit arbitrary. I think most recurrences may happen within the first 5 years? But ‘most’ is an inexact science too!
Quality of life is important - Good luck on 4th July - take someone with you for moral support.
I do feel for you! All I can say is that after a long discussion with a listening oncologist about my results, risks and percentages, I decided only an extra 2% risk recurrence benefit was not worth the risks attendant with taking an AI (after radiotherapy which brought a 20% risk down to 4%). I’m 68, so that was a big factor in my decision too. I had joint pains from the anti depressant the GP had given me to help me sleep over the whole diagnosis time…the joint pain from that made me realise I don’t want my quality of life compromised unless the gain is very great and clear! I see it that it’s 96% chance I get away with it! If I don’t, then I’ll have to deal with it, but I’ll be sure to enjoy my health in the meantime!
Exactly why I stopped! Gain 2% for a hug price! From the Anastrozole I got kidney problems and heart problems, on top of wanting to die. I was saving 2% chance of cancer death and increasing my death of other diseases by about 20 to 25%, I realized by taking it I was losing more.
I started eating these sprouts over a year ago. I’m not going to put in here how good they are cos I don’t have enough energy?Google them and you should b able to see a video of how to make these. I was eating them every day but now it’s 4 times a week cos I’m on a blood thinner and the sprouts are full of vitamin k and vitamin k and blood thinners don’t work well together xx
Everyone on here Google these sprouts. Xx
I joined the generations study in around 2005 which i have updated at various times, recently with the new primary I had. I am hoping that will come up with some data as they are meant to be recruiting 400,000 women I think, and following them up over decades. Whether that works or not I don’t know. But they told me they have proved there’s not a link between night work and breast cancer which used to be believed.
Breast cancer is very common so it is difficult to be sure something runs in families or is just a coincidence. I have only found two women with breast cancer in my family history. One was in 1907 and the other in 1867 I think certainly not in recent times.
Seagulls
Hi there Ro1948,
I’ve just been put on blood thinners for a pulmonary embolism. I take a lot of supplements ( mostly for thyroid and immunity) AB ( all) CDE, Zinc, Copper, Magnesium, Selenium and Vit K2. My doctor told me to stop the Vit K2 while on the blood thinners. Yes, you’re right - maybe you shouldn’t take it at all until you stop the blood thinners?
Good luck with your journey!
Best wishes,
Jean
I was prescribed Anastrazole, and started that day, by my surgeon at my second surgery results appt. I didn’t see the oncologist until 4 weeks later! I queried the Anastrazole then but she was worse than useless and really just wanted to talk about the upcoming radiotherapy. Neither of these very qualified women with years of experience did the NHS predict test with me so I did it on my own and by the time I started radiotherapy three weeks later I was on a 6 week break they agreed to by phone which I knew would be permanent. 6 weeks later I had a review with a nurse who did the predict with me and agreed in my case it really was of absolutely no benefit to take anastrazole. If I hadn’t complained I’d be on it for 5 years. Mine was invasive ductal carcinoma.
I think all of the inhibitors are very good and totally necessary if you have high incidence of reoccurrence and it’s going to save you, but removing oestrogen from your body is downright dangerous and has the potential to cause sooooooo many other issues which could shorten life. It’s not the pills that cause the side effects. They remove oestrogen. It’s the lack of oestrogen that causes the issues. Therefore I believe they should stop their ‘one size fits all’ prescribe it to every single ER+ case and actually look at the benefits in each case individually. I was horrified when even medical professionals agreed it was of no benefit it me (it was less than 0.5%) yet it was still given out regardless.
Hi. I’ve never heard of the predict test. Where do I find it please? X
Thank you. X