Tamoxifen & Aromatase Inhibitors: Let's talk about the side effects of breast cancer treatment
HTML-код
- Опубликовано: 23 ноя 2023
- Dr. Claire Macaulay, a breast speciality oncologist from Glasgow is hear to answer all your questions.
Many women say that being on a long-term anti-hormone treatment such as tamoxifen and aromatase inhibitors is much harder than chemotherapy, radiotherapy, and surgery altogether. So just how can we mitigate these side effects?
For this special episode, we’re also joined by a group of our community so they can ask their questions live on show!
Both tamoxifen and aromatase inhibitors (AIs) are hormonal therapies used in the treatment of oestrogen-positive (ER-positive) breast cancers to stop tumour growth and recurrence and to treat cancer that has come back after initial treatment or that has spread to other parts of the body.
These treatments come with the benefits of reducing the risks of cancer recurrence and they also come with a host of unwanted side effects. Sometimes, these can very much reduce a woman's quality of life.
Dr. Claire Macaulay recognises the challenges these treatments come with and talks us through our options.
Dr. Macaulay is also a certified sex coach supporting people in the menopause to have improved sex lives. You can find her here www.pleasurepossibility.com
About Dani:
The Menopause and Cancer Podcast is hosted by Dani Binnington, menopause guide, patients advocate for people in menopause after a cancer diagnosis, and founder of the online platform Healthy Whole Me.
There is lots of information out there about the menopause but hardly any if you have had a cancer diagnosis as well. Many people say to me they have no idea what their options are, who to ask for help, and that they feel really isolated in their experiences.
I started this podcast because there was nothing out there when I was thrown into surgical menopause at the age of 39, which followed on from my cancer diagnosis aged 33.
Through the episodes, I want to create more awareness, share information from our fabulous guest experts, doctors and other specialists in the cancer and menopause field.
And of course, I will share stories from the people in our community.
So that together we can work towards a better menopause experience. For all of us.
More educated, better informed and less alone.
Connect with Dani:
Instagram @healthywholeme
Facebook: @healthywholeme
Website: menopauseandcancer.org
Join Dani’s private Facebook group: / menopauseandcancerchathub
For oodles of inspiration, healthy recipes, yoga classes, and all round positivity, go to her website: www.healthywholeme.com/
Excellent information. I am grateful my oncologist explained my ER+ issue to me and I am taking my Aromatase inhibitor. It’s no picnic but I take it one day at a time.
Great talk after one pill i thought i was dying and i have never taken another..i actually could not see and hallucinated for two hours..God help us women
I’ve been taking Letorzole for the last year. I have a number of these side effects. When I’ve asked my oncologist what the stats look like for my situation, I was never given any, just told I should take it. This is the most valuable information I have seen to date. Every woman with breast cancer should be watching this video. All the information given is exactly what I should have been told when I started this journey. Thank you so much Dani and Dr. Macaulay. I am now able to make an informed decision that works for me.
Friend got pancreatic cancer on letrozole. She passed away. Came on after 4 yrs, hard and fast. Predict is coming out with a new version soon which will include radiation in the algorithm, I’ve been in contact with them, received an email the other week keeping me in the loop.
I Saïd this the other day to a Breast Cancer Surgeon who had BC, on RUclips, she was saying take calcium, my oncologist said you have to be careful taking calcium as it affects arteries which in turn causes heart problems. My surgeon confirmed that. She said she hadn’t heard of that, she has now.
Same here. Thank u much.
My oncologist disregards all my concerns. It's like take this and shut up. All he tells me is to stay off the internet. Yet I've learned more on the Internet than I have from any of my doctors.
Me too
Same, she can't be bothered, I bet if I had someone to take with me her attitude would be much different
But there are serious side effects with eyesight and terrible headaches also extreme osteoporosis
So informative! Thank you for affirming my decision to NOT do conventional treatment. Holistic is the only way for me.
She said there was another way to see the chart to show not only those who are surviving after 10 years but you could also see how many had ruccurance out of the 100
This is a remarkable video. I’ve just been diagnosed with bc and am about to endure a bilateral mastectomy. HOWEVER in the second example please CORRECT to show that 8 people survive with five years of aromatase treatment - NOT 13. You can add a subtitle for correction. And thank you from the bottom of my heart for this information. 🙏❤️
Dani, Thank you so much for finding this wonderful oncologist, your questions, and Dr. invaluable information. Best wishes and prayers to all.
So helpful for me as a GP with a focus on menopause to listen to a breast oncologist discuss how assessment and treatment are individualised! Thank you for your time in creating such a great resource!
Had the pleasure of joining this workshop. Great to be able to share it far and wide . Thank you Dani X
Anastrozole nearly killed me with joint and muscle pain
Brilliant, useful and informative! Thank you sooooo very much for this podcast. It answered my many questions about available treatments and the side effects and how to deal with the side effects.
Thank you to your audience too for asking brilliant questions and sharing their experiences and thoughts too.
Sending you love and gratitude, and I will be looking forward to see Dr. Macaulay again in your podcast again.
I have had surgery and whole breast radiotherapy I have ER positive Her2 negative stage 1 Grade 2 diagnosed at 68years old after a routine mammogram. I am fit and normal weight, I walk 30 mins every day.
My predict score comes out as 2% benefit this means at 10 years there will be 15 deaths from other things and 7 deaths from Breast cancer they say MAY be reduced by 2 women staying alive ( 5 breast cancer deaths) if I take 5 years treatment. For me at my age and I because I am so allergic so many medicines I don’t think it’s worth it.
Also what benefit does whole breast radiotherapy give please?
Thank a very informative session which will help me make my decision next week with the GP.
Look up Dr Thomas Seyfried. X
Whole breast radiotherapy prevents reoccurrence in ER+ invasive breast cancer (30 pct reoccurrence without radiation vs around 6 pct with radiation). There is an alternative radiotherapy. Hypofractional radiotherapy is a shorter duration higher intensity radiotherapy that has half the intensity of the side effects. This is something you seemed ideal to benefit from so I don't know why it wasn't suggested to you.
@@campbeja001 I had 5 sessions intensity 26 fractions. The only option offered to me. I can’t understand why radiotherapy treatment if it helps so much is not included in NHS predict scoring?
I have suffered with all side effects. I have taken anastrozole for 4.5 years. I am done.
Ha! I am stage lll. Oh I will not live another day miserable! Affecting my urethra now! I stink. My breath stinks. I am an RN . I was a hospice nurse for 17 years and watched all oncologists lie to women to get that profit!! 26% improved chance ? Not worth it! One oncologist is on RUclips apologizing as she was shocked at her symptoms! She had to take it. 50% of us stop the anastrozole. I am done.
Look up Dr Thomas Seyfried
So sorry you're going through these side effects. I'm a ten year breast cancer survivor. I was on Tamoxifen for 4.5 years. Side effects are terrible. Unless you live it, these doctors will never understand it. For me, it's all about quality of life.
That was brilliant so clearly explained thanks
Really informative - thank you!
Thank you! Powerful information!
Thankyou for all this info and support what would we do without you.....x
So informative!! Thanks to you both.
Really enjoyed listening to Clare. Thank you
Can I take magnesium while I am on tamoxifen?
I’m
Listening to podcast number 82. I can’t find the video matching . My question is you mention a drug used for high blood pressure that helps with high blood pressure. Clonadine ? Thank you !!!
Random question. IF a woman stops taking her AI pills, how soon does cancer come back?
I'm on the predict website and I filled out the info. There are no fields for BRCA genes. I have the brca mutation. Does it not factor into the results?
What is. stradexa I'm on this treatment
I've had a bad response to Anastrozle. It raised my BP to 215 in 8 weeks. I hadn't a problem before that ,age 66 .I was then prescribed 2 BP meds, had to see a cardiologist as it wasn't reducing. He said I can uncontrollable BP, most likely from the Anastrozle. I've reduced taking the Anastrozle to every second day and BP has reduced. A oncology nurse said to me it would probably return to normal if I stopped taking Anastrozle. Will I get some benefits from taking it every second day, or just give it up all together. I had an oncotype DX score of 6. I don't want to risk a stroke with the uncomfortable BP..
Lisa
I did that, it has a long half life.
Good video. Why the predict tool does not include radiation?
Version 3 of the predict tool will include radiation, I have been in contact with them. Received an email not long ago saying they’re working on it and hopefully out soon.
That’s rubbish, I had no symptoms at 3, 6, months, it was at 16 months I crawled into my surgeons office and said I cannot do any longer on Anastrozole, he said stop. Anastrozole is Arimidex. That’s the real brand.
Hi hope you don’t mind me asking what type of breast cancer did you have as I just got diagnosed with er pr positive and hers negative and my doctor wants me on anti hormones therapy
@@ummtaimann6819 Er+ Pr+ Her2- anastrozole became way too debilitating at 16 months, it affects your bones, I lost 10% in bone density, my Surgeon said stop. Then he said he'd write to my Oncologist and plant the seed she put me on Tamoxifen. Had a month break, Tamoxifen was ok at 1st, at 15 months or before aches and pains came in, I had to take an anti inflamatory each day to do half hour exercise. at a review I had a whine about the aches and pains, she sent me for scans, It showed up something on the Lung, she said I don't think it's anything but we need to do a deeper check after the weekend. I had a more in depth scan, it WAS a Pulmonary Embolism. Off tamoxifen and on to a anticoagulant Xarelto, that was horrendous, blackouts, severe spinning, not one medical person said it was from the Xarelto. They said I had Vertigo. Never ever had that. Well I bumped into an Oncology Nurse at an unrelated appointment, she said she had numerous patients with Vertigo on Xarelto, I told her what was happening and she said it was from the drug, another Pharmacist also confirmed that, it also caused terrible back and side pain and face turned a yellowy colour with red spots/blotches. Because of the blackouts/spinning I was sent for a Brain Scan, A Meningioma was found, so off to a Neurosurgeon, it's very Calcified, incidental finding.
The oncologist wanted me to stay on Xarelto and go back on Tamoxifen with the "maybe" Xarelto might stop clots. I did not, the last tablets I took was the day I had a scan to see the PE had gone. I left the facility and blood was streaming down my arm, I felt and looked terrible, went back in, took 2 to sit me down, bandaged arm and gave me water, never again.
I let her know, she was suggesting another blood thinner but as my Cousin who is a very accomplished Nurse said a blood thinner is a blood thinner. Then the Oncologist suggested Exemestane. I'm not, as these drugs have left me with terrible Spine pain, as I said yes scans show arthritis, but before any of these treatments I had no symptoms of this, I could walk, get in/out of car and go to Gym for an hour. I'm just getting this under some sort of control with mild dose nerve pain meds and 50mg Voltaren. My GP isn't happy about the Voltaren but I've been in severe pain for 3 years to the point of can't function.
I've had full scans, bone scans and MRI of spine just recently.
I had a review with my Radiation Oncologist, she is happy I take the Voltaren as she said you have to weigh up the pros and cons. She as amazed as to how much my Spine etc had deteriorated in 3 yrs. She also said there s no guarantee with these drugs. And your body can become resistant to them. And as a specialist said they may block so much % of Estrogen however not all, and what not is blocked can get together and go there's a cell and accumulate and go after it (that's layman's terms).
I'm not worried about the hot flashes, those things, it's the damage physically they do, it's irreversible damage.
The Predict Breast tool is being updated to a version 3. I contacted them and asked why Radiation was not included in the Tool. They said it wasn't in the Algorithm. They are including it in version 3. I received an email from a Professor a couple of weeks ago keeping me in the loop. It'll be out soon. I have friends who one died being on Letrozole, she got Pancreatic cancer after being on it 4 years. another Carpel Tunnel and up to 2 ops. Her husband is in the Medical field and has her off these drugs. Other Organs in your body require Estrogen to function. I do not do Generic Drugs, they are inferior. And I have no idea why she would say try another brand as if all brands are suppose to have the same of main drug why is there a difference. My GP read a book by Katherine Eban an investigative Journalist, who uncovered a rort with a whistle blower that generic drugs being manufactured in India were being made as a different consistency for different markets/Countries. You can see her on RUclips.
As a side note, my Oncologist and confirmed by my Surgeon said Calcium can be dangerous as it gets into your Arteries and cause Heart problems. I said this on another Forum and a BC Surgeon (she has BC) who said to take Calcium, I told her what my Surgeon and Oncologist said, she was in the UK, she answered me and said she hadn't heard of that, she has now.
My story is identical to yours. I have been on Anastrozole for a year now and it is causing so much joint and muscle pain everyday. I haven't taken it for 4 days now and I already feel normal again. But, I'm fearful of cancer coming back. Ugh
@@hopemessick7460as my radiation oncologist said the other day there’s no guarantee with these drugs
@@hopemessick7460I have been miserable for 4.5 years on anastrozole. Stage lll with 19 bad lymph nodes. I just quit because I cannot handle the symptoms
If you say lose weight then how come thin people get BC. You are talking about DVT, I got a PE with no symptoms, no DVT, just lucky I had a whine about aches and pains generally.
I'm started taking Stradexa. Today l want to know what this does to my body its Mre David Vasie
I'm about to start tamoxifen but am very scared of side effects. I am post menopausal.
You should be taking anastrozole not tamoxifen! Good grief!!
Who are you. I took Anastrozole and I can't believe they have women taking this. It about killed me. Going to truTamoxifen. If I have horrible side effects, I'll say screw it
No lay person has a right to tell you what to take. I took Anastrozole and it nearly killed me. Will start on Tamoxifen on Monday when my docs office is open in case I have allergic reaction
@@kathysteiner9468 I am an RN. I took Anastrozole for 4.5 years and quit last week due to inability to live with these side effects.. tamoxifen is for those still menustrating. So many in stage l jump on board!! I have studied the percentages, the predict charts etc. I am done. I have stage lll with 19 bad lymph nodes and I will quit anastrozole to have maybe a year of extra life to years of feeling better? No thanks! Next five years will tell my story. I was a hospice nurse 16 years and could write a book on all the lying oncologists!$$$$$$$$
Anastrazole is contraindicated in patients having osteoporosis. That is why Tamoxifen is usually preferred on that scenario. Aromatase inhibitors will accelerate bone loss!!
Here we go … brain fog - we are aging beings. She just dismissed a valid concern and a side effect. 👎
I think she meant we might be experiencing brain fog as older women 50+ due to the high stress and mass information we are giving in the working environment. This is true for me, I think
Is estrogen really the enemy