When Tamoxifen and AI's Become Unbearable
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- Опубліковано 2 лип 2024
- Breast speciality oncologist Dr Claire Macaulay from Glasgow helps us understand how we can navigate difficult treatment decisions.
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.
On this podcast we are also joined by a group of our community to give them an opportunity to ask their questions whilst being on the live show!
We talk about patients not feeling they get adequate upfront discussions to make informed decisions. We talk about not being heard. Who holds the risk? What can you do to manage side effects?
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 menopause to have improved sex lives. You can find her here www.pleasurepossibility.com
And join her private Facebook group here
Episode Highlights:
00:00 Intro.
09:36 Understanding symptoms can help manage breast cancer.
13:07 Looking at Predict and how to use it.
21:53 Dealing with cancer treatment's psychological impact.
31:11 Managing menopausal symptoms with medications, side effects.
36:13 Importance of NHS and community care support.
42:54 Medical professionals support patient autonomy and choices.
51:17 Individual doctors must decide risk and comfort.
58:50 Concerns about future treatments and emotional support.
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 us:
For more information and resources visit our website: www.menopauseandcancer.org
Or follow us on Instagram @menopause_and_cancer
Join our Facebook group: groups/menopauseandcancerchathub
Absolutely excellent explanation of the risks vs benefits. As a Pharmacist I really appreciate the information from the predict tool for individual patients.
My Anastrozole is sucking the life out of me. I’ve been on this since March but my oncologist has given me breaks. The joint pain and insomnia is unbearable.
When they talk about side effects I think I can handle the menopause side effects brought on by these medications. I have been through menopause and know how to adapt to the mood swings, hot flashes, loss of sexual desire, and others. It is the elevated BONE LOSS, HIGH BLOOD PRESSURE, BLOOD CLOT RISK, HEART DISEASE risk that I am concerned about. It is the silent risks that concern me more than night sweats. The risks that can’t just be undone by quitting the medications. At 70 I am weighing heavily the risk=benefit for me personally. The only answer I get is, “We will give you stuff for bone loss & high blood pressure”. I am not interested in getting on the pharmaceutical hamster wheel to take this medication and that medication to deal with the side effect from that medication and the side effect from this side effect medication. Is the quality of my life right now worth the gamble of these hormone blockers? That is the question that I sit with personally. Anyone else relate out there to my situation?
Yes, I can relate to what you are saying. I feel the same.
I definitely can relate. I am 68 years old and was diagnosed with Stage 2 Breast Cancer last year. All the treatments, surgery, radiation, staph infections stressed out my body and I think my body is in over-drive with Anastrozole. My oncologist is giving me a 3 week break but seems like the menopause symptoms, joint pains, insomnia persist. I pray this settles down so I can take the AI pills for 5 years. I am terrified of a recurrence and pray I never hear the words "you have cancer" again. Just like you, I don't want extra meds to help with side effects.
I had Arimidex for 16 months, became too debilitating, my Surgeon said stop, then said he’d write to my oncologist to plant the seed to put me on Tamoxifen, 15 months in I had a review and had a whinge re aches/pains, no symptoms but scan showed a Pulmonary Embolism,off Tamoxifen on to anticoagulant Xarelto, horrendous, caused severe spinning/wanting to blackout, scan showed a Meningioma, off to Neurosurgeon. It’s calcified. Not one medical person told me Xarelto could cause spinning out, thank god I hadn’t been driving. Oncologist was wanting me to stay on Xarelto and go back on Tamoxifen, she then suggested Exemestane. I haven’t taken it, can cause carpel tunnel and she goes oh we can treat that, no ops are not always successful. I’ve stopped the drugs. The drugs also exasperated back pain which I didn’t have before (discs/arthritis) unbearable. Just getting some relief, did not care about ménopause symptoms but the other like bone loss , clots lethal etc. A friend I’d made took Letrozole, came on hard and fast blocked duodenum, they said they got it all, Dr got a shock 25 spots on liver, pancreatic cancer and passed, another 2 ops for carpel tunnel, she’s stopped these drugs as well.Just read on another podcast a hospice nurse of 17 yrs said these Drs get money for getting you to have all these treatments, she said she’s seen it all and they do it right up till they die, follow the money!
Yes, I can absolutely relate.i had to stop hormone replacement when I was diagnosed with breast cancer ( I unfortunately had a previously undiagnosed genetic vulnerability) . The withdrawal from hormones was brutal with not even moral support from docs/ nurses. I could not bring myself to take the aromatase inhibitors because I assumed any side effects would be met with the same indifference. Look me you im concerned about the damage to bones,brain and heart. The medications for osteoporosis have added to my problems causing bone and joint pain. The docs tend to be more responsive to complaintz that will kill you. Like you I don't want to take medications to 🎛️ l the side effects of another medicine.
@@lindajones4849These are such tough decisions. Wish I had a crystal ball to see how I’d manage without AI pills.
Thank you so much for explaining the emotions of doctors around taking the risks of prescribing medication. I get in so many conversations with patients about why certain medications have to be done by a consultant, or why a doctor won't take the risk, and you put it perfectly.
I'm a Pharmacist btw.
This is probably the best explanation from a medical professional about joint pain prior to cancer diagnosis and also removing myself from HRT.
Thank you so much for this information. It has helped me to make an informed decision about treatment post lumpectomy.❤
My oncologist told me that Predict is old science and that the ONCO score is what should be considered. I showed her my Predict results to discuss and she shot it down immediately as “old science”.
It’s not old science and there’s a version 3 coming out, I contacted them and have been in contact with a Professor keeping me updated
Please address ESR1 mutations. NIH has several clinical studies regarding ESR1 secondary resistant cancers...treatments are limited with poor outcomes and up to 50% associated after taking these meds. How can one justify taking these meds?
I am 83 yr old very active woman
I have been treated with stage one estrogen positive breast cancer
I have been advised to take Anastrozle
My treatment consisted of 5 days of increased dose of radiation
This is my 2nd time with breast cancer last time was 11 yrs ago
Afraid to take the drug would like the rest of my life to be active
What are your thoughts 13:03
Is testosterone comparable to tamoxifen in prevention of recurrence of breast cancer ?