You are probably correct that, unless a doctor has experienced the side effects themselves, they cannot really know. This is pretty much the case for everything (migraine headaches, depression, stroke, etc.). On the other hand, physicians listen to hundreds of patients with symptoms and can get a sense of how severe side effects might be. One of the most helpful things from the standpoint of the listener is to hear about the impact of the side effect on their patients' lives. What kinds of things are hard to do because of the side effects? What is the impact on the patient's daily life? On their sleep? On their family. Hope this is helpful.
I took anastrozole for three months. Developed conjunctivitis a few weeks in. Joint and muscle pain was so bad I could hardly get up and down stairs. I also had insomnia sleeping only about three hours a night. I also suffer from fibromyalgia. After stopping anastrazole I am still struggling with muscle aches and pains. Before starting the anastrozole my fibromyalgia was quite well controlled with adequate sleep and relaxation therapy techniques I have used for years. I believe the insomnia caused my fibromyalgia to flare. Am hoping with time I can get that back under control. I have had stage one cancer in both breasts within two years. Both tumors were less than 2 cm with centinal lymph nodes negative. I opted for mastectomies for both tumors. For me hormone therapy is not worth compromising my quality of life. I am 73 years old.
Hi I agree with you … I started anastrozole it was horrible the bone pain was so bad struggled to get down stairs on a morning but had terrible migraines massive mood change I then tried letrazole bad also and got vertigo and all above I was in tears with my oncologist saying the same as you … I have no quality of life my cancer was a secondary cancer had a aggressive xxx did chemo radiation I was 32 and now have hormonal had chemo radiation and on targeted therapy drug plus hormonal one I do know in my case it’s very important I’m trying estamestain and at the moment it’s not too bad cannot sleep but bone pain not as bad hot flushes just hoping the migraines don’t start if so I just cannot do it … I need to be able to work as I live a lone and do want some quality of life …. Have you tried the other drugs ? As there not all the same … sending love I’m 48 now 😢hate cancer … this time I had mastectomy too before I had reconstruction but cannot now as it had spread to surrounding skin and in most of my lymph nodes 😮x
I’m on Anastrozole and the effects were horrendous at 3 months. I had an oncologist friend who told me that, for some, it takes the body time to climatize. About 5 months in the effects started diminishing. I would not have waited that long if it didn’t take that long to get an appointment. It is not the best but tolerable. My hair is shiny again and the joint pain only for the first 5 minutes o after resting. I still struggle with sleep but I was to begin with. I do feel like I’m a bit hung over but at three months there was not 5. I minutes that I felt happy.
What I don't understand is when they say it will reduce you getting cancer back by 50%. 50% of what?? A 1,000 women 10,000 women?? What are those numbers?? I have done a lot of research, and I can't find numbers. I am a stage one triple positive, and so far, I have refused to start hormone blockers. My body has been through so much already.
Great question and what we hoped to address with this video. If, for example, someone has a risk of recurrence of 40%, treatment will reduce the risk of recurrence to about 20% (cuts the risk in half and gives someone a 20% absolute risk reduction). If someone has a 2% risk of recurrence, the exact same treatment will cut the risk to 1% (again, in half but an absolute risk reduction of 1%). The treatment is the same, but the benefit is different based on a person's risk of recurrence. Hope this is helpful.
I'm able to tolerate the day to day symptoms (hot flashes, mild nausea) but I now have a fatty liver (studies show they can cause this, and i am the opposite of the usual candidate) and I am concerned about osteoporosis. It's trying to balance the risk these more serious side effects present compared to the risk of recurrence. My NHS Predict score shows 2% chance of death in 10 years without AI and 1% chance with.
Thank you for this helpful video! I'm 13 months on endocrine therapy (AI and estrogen supressors), feel great and experience minimal side effects. Take one additional medication which helps with hot flashes, one to help with sleep and one on standby to help with diarrhoea (took three times during all this time). I agree with my medical team that there is nothing wrong with taking an additional medication to counteract side effects of a life saving medication. However, the main reason why I feel so good is that I exercise 4-5 times per week, follow the healthy ketogenic lifestyle with intermittent fasting 18:6, quit smoking and alcohol for good. I am using this time to bring my health in perfect order and build up a strong and sustainable immune system that would get rid of any unnecessary cells. 80% of immune system is in the GI, liver and pancreas and the way to care about them long term is with nutrition and lifestyle. One of liver's functions is destroying excess estrogen. If the liver is not working properly, we risk estrogen dominance and thereby BC recurrence. The main point here is what happens when the endocrine therapy is over, and it's important to understand that this therapy is not a guarantee that BC doesn't come back. Our health long term is in our hands and our responsibility only.
Thank you for sharing your journey and insights with the Yerbba community. It's impressive how you've taken charge of your health through lifestyle changes and proactive measures. Your commitment to self care is inspiring.
@@RachelDDixon abemaciclib (Verzenio), letrozole (Femara) and leuprorelin acetate (Enantone). Venkafaxin supports the treatment to improve thermo regulation (reduces hot flashes) and protects against breast cancer (thus is informal info).
I think its important to take something to assist with the aches and pains from the hormone blockers. I use turmeric pills b12, b6 and b1. It has helped. I should definitely exercise more.
I had stage 1, double mastectomy and on the predict tool, I go from 90% to 91% survival rate in 15 years. Why are Doctors so persistent in me taking the therapy. I feel like a crazy person for opting out. I am in Brazil by the way.
Great question. When doctors have a treatment that helps even one person, they may be inclined to offer it. When the benefit is small, the decision is called "preference sensitive," meaning that your preferences play a role in whether or not to receive a given treatment.
Hi Laura. I too had stage 1 cancer and did a mastectomy. I too have opted out of hormone therapy seeing the low percentage of benefits derived. You are not crazy just intelligent to weigh the pros and cons and quality of life
The difference between relative risk vs. absolute risk is key. 50% reduction in risk when the absolute risk is, say 10%, means reduction from 10% to 5% (this is about where I am). Nope, totally, completely, not worth it based on the miserable side effects. Also, all the reduction in bone density? Great, no cancer but a broken hip that cripples me. Again, that's a hard "no." Not to mention just feeling...meh all the time, zero quality of life. Rather take my chances with the cancer. Prefer 10 great years than 20 miserable years. I am almost 60, finished raising my one child who will not be haviing children (long story) so not letting any family members down or anything if, heaven forbid, it returns. I am finishing up radiation and, except for radiation burns, I feel back to normal now.
It's clear you understand absolute versus relative risk reduction. Understanding the extent of benefit is crucial in making a decision about whether to take a medication and how long to take it. Just for the sake of our other viewers, we do want to mention that when cancer recurs, it is generally harder to treat, and the goal of treatment is no longer cure.
Thanks Doc for your generous sharing. I couldn't tolerate the three different AIs. The symptoms were so wicked. I'm into my 4th or so month of Tamoxifen and seem to be tolerating it "okay." I think my regular exercise habit is helping. Do I notice side effects? Yeah. I try to take life one day at a time. My recurrence risk is 10% after BMX and chemo. I'll happily take the 50% reduction down to 5% with tamoxifen. Thanks again for your work and this channel. I just subscribed. There is another lovely doctor, Liz ORiordan, who is also a breast cancer patient as well.
Thank you. This was very helpful. Tried Arimidex first which caused joint pain (level 4 on 10 pt pain score) that would awaken me multiple times during the night. Tylenol helped somewhat. Switched to Aromasin. Reviewed list of possible side effects, noting which ones that I was experiencing & conferred with oncologist & then psychiatrist, changing dose of antidepressants, & starting therapy dealing with BC for the past year. Still dealing with sleep disturbances & swollen feet but tolerable side effects for benefits. (Triple positive HER 2/ stage 3b)
Thank you for making such great videos with clear information! They have really helped me. I am 40 years old and recently diagnosed with DCIS. There was some debate on whether or not it was actually invasive though, because there were isolated tumor cells in one lymph node. I’m about to start radiation, and then my doctor wants me to take tamoxifen after that. I have such mixed feelings because of everything I’ve heard about it. I asked my doctor if she could tell me my risk of reoccurrence with or without tamoxifen. She said she couldn’t tell me that. The only thing she would say is that it would reduce my risk by half. My mom had breast cancer 17 years ago, and when tamoxifen caused her to have side effects her doctor told her she could just quit taking it. He said it only helps 6% of women and no one knows which women that will be. Have you ever heard that statistic? Maybe things have changed in 17 years? Another question I have is if my risk is any higher because of my age and the fact that I am still around 10 years away from menopause? Thank you for any tips you can give me!
Thank you for your kind words. Tamoxifen can be a complex decision, and it's understandable to have mixed feelings. The statistic you mentioned may vary depending on individual factors. Tamoxifen is generally known to reduce the risk of recurrence significantly. Your age and pre-menopausal status can influence your treatment plan, but it's best to discuss these concerns in detail with your oncologist.
I do get, why we should take these drugs. Why the side effects. Dear Dr. Griggs has educated us thoroughly and passionately . IMO people could deal with it so much better if they could greatly reduce the length of time a person has to take something like this. That makes life so miserable quite a number of people just can't do it. Dr Griggs are we anywhere close to something of shorter sessions ?. 10 yrs is a bit much.
10 years is definitely a long time. For a disease that involves little cells getting away from the primary tumor, we do have evidence that longer is better for people at a substantial risk of recurrence. In the field of breast oncology, there is a tremendous effort to "de-escalate" (pull back on) treatments. Thank you for sharing your thoughts.
I’m on endocrine therapy with Letrozole tablets recently and my oncologist recommended for zometa for 3 years twice a year can you please advise what is the benefit of getting zometa . Thank you
Please - latest 2 studies finished in 2021 Sweden and 2023 UK were done bc women were quitting tamoxifen early due to the sude effects. They used lower dosages and found that 2.5 mg and 5 mg works equally as well if not bettee than 20 mg. 20 mg is the max amount before toxicity. This is why the side effects - it's 10x overdosing! Your bodies are reacting to being poisoned! Ask your dr for 2.5 mg or 5 mg pills and give that a try before stopping. There were no side effects at these effective dosages. Also, if you're on anastrazole, then ask for testosterone pellets compounded with anastrazole. Testosterone used to be used as a successful cancer treatment and prevention. Good luck!
Tamoxifen can definitely be used at a dose of 5 mg in people with DCIS or in people who want to take some treatment but cannot tolerate the standard dose of 20 mg. The standard dose is not an overdose. Testosterone is not recommended outside a clinical trial.
I had stage zero dcis - extremely slow growing. I am seriously thinking about stopping my hormone blocker. I have gained weight. I have always exercised and still do. I have type 2 diabetes and have had good control for nearly 35 years. I have never really been overweight. I am thinking the side of effects from diabetes are worse than the breast cancer and hormone blocker.
In people with DCIS, endocrine therapy reduces the risk of another cancer "event" in the side with DCIS. There is no survival benefit. It is not clear if your weight will decrease when you stop the medication, but trying a short period off the medication may be helpful.
Thank you for the information. Diagnosed with breast cancer Her2 positive in 2014, taken 5 months of chemotherapy, in conjuction with targeted therapy for 15 months, metastasized while on treatment to bone cancer. Went on Arimidex for 9 years, metastasized again to 5 new places in body, including spine. Chemotherapy is not an option. Hormonal treatment being given, Fluversant injections 2 x 250mg every 2 weeks over 3 sessions thereafter monthly for a period that it continues to help further metastases. Can you please enlighten me a little about this last treatment.
Thanks for writing with your story. Fulvestrant is an estrogen receptor disruptor. We have a video about these medications. There is a newly-approved oral estrogen receptor disruptor that may be available. ua-cam.com/video/Ie7ruLkyrpY/v-deo.html
When we talk about a medical team, we mean all the people in your doctors office as well as your doctor. It's helpful to know that everyone in that office is working to help you. From the person who answers the phone to the person who checks you out, everyone is part of the team. If you are not feeling that support, your primary care doctor, nurse practitioner, physician assistant may be helpful in navigating your care. There may also be community health resources, support groups, or patient advocacy organizations that can offer guidance on how to manage post-treatment symptoms and connect you with medical professionals.
In people with Stage IV disease, staying on treatment is generally advised. However, if the treatment is worse than the disease, things can be changed.
I had a severe allergic reaction to a very low dose of tamoxifen. And I have hypertension and high cholesterol that does not respond to treatment so they do not want to give me AI drugs. I wanted to be able to take these medications.
This sounds really hard. Bone problems and hypertension can both be well managed in people on aromatase inhibitors. The benefits of the AIs are likely to be greater than the potential harms based on what you've written.
Thank you for this video. I am on Tam 20mg and am post menopausal. I had a severe bout of GERD after Arimidex. I have had a lot of side effects including heart palpitations and hair loss. The most difficult one for me right now is abdominal bloating. How does Tam cause this, and is it fluid retention or inflammation/bacteria in the gut? TIA
Tamoxifen can indeed cause bloating in some patients. It's not entirely clear why, but some thoughts are the following: Tamoxifen has estrogen like activity on some receptors in the body; if this is case in you, estrogen is known to cause fluid retention, which can lead to bloating. Tamoxifen may affect the digestive system, potentially slowing down digestion and leading to bloating. Some patients report experiencing indigestion, nausea, and other gastrointestinal issues while taking tamoxifen. The hormonal changes induced by tamoxifen ub premenopausal people can affect the body's water balance and metabolism, potentially contributing to bloating and fluid retention. In premenopausal women, tamoxifen can stimulate the ovaries, which may lead to the development of ovarian cysts. This can cause bloating and abdominal discomfort.
I was stage 2 , 2 lymph nodes positive oestrogen positive. Since starting Anastrozole my BP rose dramatically up to 215 . I was told possibly coincidence, i don't think it is I'd reached 65 without a BP problem. My oncotype dx score was 6 . Ive now just started taking Anastrozole every second day in the hope of reducing my Bp . Its still high despite now taking 2 BP meds. Im taking milled flaxseed and DIM every day as there natural oestrogen suppressors . Am i doing any good taking it every second day or just stop it all together, as worry about heart health as thats a family problem rather than cancer .
I’m a farmer. Stage 2b surgery - 4 rounds of tc and 21 days of rt- ki6720% age 48 ++- 7 years of tamoxifen. The hormone therapy is hard.. my heart rate is out of control - blurred vision- family history of strokes. Am thinking of reducing the dose to 5mg. I live alone in the deep forest of the Himalayas… no 911 ambulance service out here… taking DIM 400 mg everyday and am very physically active. The 20 is too hard on my body and its effecting my work- plus I drive a motorcycle… have been spooked to ride since starting the HT
I took Tamoxifen for a few days and suddenly I started feeling fatigue abd body ache. Not sure if this is because of Tamoxifen or something else. So, I do not know what to do 😢
Fatigue and body ache can be side effects of tamoxifen, but it’s important to discuss these symptoms with your doctor. They can help determine if tamoxifen is the cause or if there might be another underlying issue. Medication adjustments may be necessary.
During my pet scan they found i have uterus enlargement, since tamoxifen may cause endometriosis, is it wise to use tamoxifen,? I would greatly appreciate if you answer my question. Because i will be soon starting tamoxifen
Thanks for the question. Tamoxifen can cause thickening of the uterine lining but does not cause endometriosis, which is a condition in which uterine tissue is in other parts of the body.
Hello i just have a question,i have a breast cancer stage 2,finish last 2 nd part of chemo last nov,28 why do i have more body pain and hot flush?iis ok normal?and now i do the operation,on dec 14 thank you
Some of the side effects can accumulate after treatment is over. It is also possible that it took this many cycles for the ovaries to be affected. Some of the side effects you describe sound like treatment-induced menopause, which can be temporary or permanent.
It's not clear if every other day anastrozole is as effective as daily. It is unlikely to cause harm and may be better than not taking the medication at all.
Does beer consumption cause breast cancer? I was diagnosed with ILC stage 3, I enjoy beer but I don’t get drunk or abuse it. I feel guilty that I may have caused this disease. I stopped drinking it since the treatment started. Is 0% alcohol beer okay? Also, can alcohol consumption cause BC recurrence?
Alcohol has been linked to a higher risk of developing breast cancer. There are not many studies indicating a higher risk of recurrence, so it is difficult to say. In general, limiting alcohol or eliminating alcohol altogether is probably prudent. It is not possible, however, to say that drinking alcohol is directly related to someone getting breast cancer. It is important not to add the burden of self-blame when going through a difficult medical experience.
For people who do not have functioning ovaries who are at sufficiently high risk, additional endocrine therapy with an aromatase inhibitor may be offered.
Thank you very much for your very, very helpful information. I am an emergency nurse and I love my job. I know I’ll have some problems but I will do everything to decrease my chance of recurrence and have the best quality of life I can have. I find your videos very helpful and clear. Even though I’m a nurse I don’t know everything but I want to learn. Thank you again!
You're very welcome! It's commendable that you're determined to take steps to decrease your chance of recurrence and prioritize your quality of life. Learning and seeking information are powerful tools in navigating this journey. Thank you for your dedication to your patients and for being a valuable part of the healthcare community.
Thank you for this video. I have been on monthly Lupron and daily exemestane for 3 years now. I’ve made an appointment with my onc to let her know I want to stop the medications. I’m only 40 and I feel like a 60 year old. Just the thought of having to go through all this again naturally after the meds is daunting. So for me it’s a quality of life thing. I want to feel my actual age again for a while before menopause happens again naturally.
Thanks for sharing your thoughts. It would be helpful for you to explain in detail the experiences you are having with your medical team in case there are alternatives, such as tamoxifen.
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The side effects are terrible I don’t think the doctors really get how awful some of the side effects are 😢
You are probably correct that, unless a doctor has experienced the side effects themselves, they cannot really know. This is pretty much the case for everything (migraine headaches, depression, stroke, etc.). On the other hand, physicians listen to hundreds of patients with symptoms and can get a sense of how severe side effects might be. One of the most helpful things from the standpoint of the listener is to hear about the impact of the side effect on their patients' lives. What kinds of things are hard to do because of the side effects? What is the impact on the patient's daily life? On their sleep? On their family. Hope this is helpful.
@@yerbbaI feel like “some physicians” would be a better description
I took anastrozole for three months. Developed conjunctivitis a few weeks in. Joint and muscle pain was so bad I could hardly get up and down stairs. I also had insomnia sleeping only about three hours a night. I also suffer from fibromyalgia. After stopping anastrazole I am still struggling with muscle aches and pains. Before starting the anastrozole my fibromyalgia was quite well controlled with adequate sleep and relaxation therapy techniques I have used for years. I believe the insomnia caused my fibromyalgia to flare. Am hoping with time I can get that back under control. I have had stage one cancer in both breasts within two years. Both tumors were less than 2 cm with centinal lymph nodes negative. I opted for mastectomies for both tumors. For me hormone therapy is not worth compromising my quality of life. I am 73 years old.
Hi I agree with you … I started anastrozole it was horrible the bone pain was so bad struggled to get down stairs on a morning but had terrible migraines massive mood change I then tried letrazole bad also and got vertigo and all above I was in tears with my oncologist saying the same as you … I have no quality of life my cancer was a secondary cancer had a aggressive xxx did chemo radiation I was 32 and now have hormonal had chemo radiation and on targeted therapy drug plus hormonal one I do know in my case it’s very important I’m trying estamestain and at the moment it’s not too bad cannot sleep but bone pain not as bad hot flushes just hoping the migraines don’t start if so I just cannot do it … I need to be able to work as I live a lone and do want some quality of life …. Have you tried the other drugs ? As there not all the same … sending love I’m 48 now 😢hate cancer … this time I had mastectomy too before I had reconstruction but cannot now as it had spread to surrounding skin and in most of my lymph nodes 😮x
Your symptoms sound quite challenging. Thanks for sharing your thoughts here with the Yerbba community.
I’m on Anastrozole and the effects were horrendous at 3 months. I had an oncologist friend who told me that, for some, it takes the body time to climatize. About 5 months in the effects started diminishing. I would not have waited that long if it didn’t take that long to get an appointment. It is not the best but tolerable. My hair is shiny again and the joint pain only for the first 5 minutes o after resting. I still struggle with sleep but I was to begin with. I do feel like I’m a bit hung over but at three months there was not 5. I minutes that I felt happy.
@@quasimodem5260 I was on Anastrozole for 8 months. My side effects kept getting worse, not better. Finally I had to stop.
This all sounds horrific. Dr. Since I am way beyond menopause, do you think the side effects wouldnt apply to a 78 year old.
What I don't understand is when they say it will reduce you getting cancer back by 50%. 50% of what?? A 1,000 women 10,000 women?? What are those numbers?? I have done a lot of research, and I can't find numbers. I am a stage one triple positive, and so far, I have refused to start hormone blockers. My body has been through so much already.
Great question and what we hoped to address with this video. If, for example, someone has a risk of recurrence of 40%, treatment will reduce the risk of recurrence to about 20% (cuts the risk in half and gives someone a 20% absolute risk reduction). If someone has a 2% risk of recurrence, the exact same treatment will cut the risk to 1% (again, in half but an absolute risk reduction of 1%). The treatment is the same, but the benefit is different based on a person's risk of recurrence. Hope this is helpful.
I'm able to tolerate the day to day symptoms (hot flashes, mild nausea) but I now have a fatty liver (studies show they can cause this, and i am the opposite of the usual candidate) and I am concerned about osteoporosis. It's trying to balance the risk these more serious side effects present compared to the risk of recurrence. My NHS Predict score shows 2% chance of death in 10 years without AI and 1% chance with.
Thank you, Dr. Griggs, for medical advice and continuous support for breast cancer (health) and awareness,
Thank you for your positive feedback. We appreciate you!
Thank you for this helpful video! I'm 13 months on endocrine therapy (AI and estrogen supressors), feel great and experience minimal side effects. Take one additional medication which helps with hot flashes, one to help with sleep and one on standby to help with diarrhoea (took three times during all this time). I agree with my medical team that there is nothing wrong with taking an additional medication to counteract side effects of a life saving medication. However, the main reason why I feel so good is that I exercise 4-5 times per week, follow the healthy ketogenic lifestyle with intermittent fasting 18:6, quit smoking and alcohol for good. I am using this time to bring my health in perfect order and build up a strong and sustainable immune system that would get rid of any unnecessary cells. 80% of immune system is in the GI, liver and pancreas and the way to care about them long term is with nutrition and lifestyle. One of liver's functions is destroying excess estrogen. If the liver is not working properly, we risk estrogen dominance and thereby BC recurrence. The main point here is what happens when the endocrine therapy is over, and it's important to understand that this therapy is not a guarantee that BC doesn't come back. Our health long term is in our hands and our responsibility only.
Thank you for sharing your journey and insights with the Yerbba community. It's impressive how you've taken charge of your health through lifestyle changes and proactive measures. Your commitment to self care is inspiring.
Which one are you on?
@@RachelDDixon abemaciclib (Verzenio), letrozole (Femara) and leuprorelin acetate (Enantone). Venkafaxin supports the treatment to improve thermo regulation (reduces hot flashes) and protects against breast cancer (thus is informal info).
I think its important to take something to assist with the aches and pains from the hormone blockers. I use turmeric pills b12, b6 and b1. It has helped. I should definitely exercise more.
You need to be very careful taking Tumeric and other supplements as these Reduce the effectiveness of the hormone treatments
Hi there can you tell me which turmeric pills b12,b6 and b1 you use ? maybe an amazon store link?
Thank you for sharing your experiences. Let us know how the exercise works to help with your symptoms.
I had stage 1, double mastectomy and on the predict tool, I go from 90% to 91% survival rate in 15 years. Why are Doctors so persistent in me taking the therapy. I feel like a crazy person for opting out. I am in Brazil by the way.
Great question. When doctors have a treatment that helps even one person, they may be inclined to offer it. When the benefit is small, the decision is called "preference sensitive," meaning that your preferences play a role in whether or not to receive a given treatment.
Hi Laura. I too had stage 1 cancer and did a mastectomy. I too have opted out of hormone therapy seeing the low percentage of benefits derived. You are not crazy just intelligent to weigh the pros and cons and quality of life
I did this therapy for 8 years. It was very difficult but I felt that it was necessary for me. I was stage 2B.
Thank you for sharing this undoubtedly difficult experience. Thanks for sharing your story.
The difference between relative risk vs. absolute risk is key. 50% reduction in risk when the absolute risk is, say 10%, means reduction from 10% to 5% (this is about where I am). Nope, totally, completely, not worth it based on the miserable side effects. Also, all the reduction in bone density? Great, no cancer but a broken hip that cripples me. Again, that's a hard "no." Not to mention just feeling...meh all the time, zero quality of life. Rather take my chances with the cancer. Prefer 10 great years than 20 miserable years. I am almost 60, finished raising my one child who will not be haviing children (long story) so not letting any family members down or anything if, heaven forbid, it returns. I am finishing up radiation and, except for radiation burns, I feel back to normal now.
It's clear you understand absolute versus relative risk reduction. Understanding the extent of benefit is crucial in making a decision about whether to take a medication and how long to take it. Just for the sake of our other viewers, we do want to mention that when cancer recurs, it is generally harder to treat, and the goal of treatment is no longer cure.
Thanks Doc for your generous sharing. I couldn't tolerate the three different AIs. The symptoms were so wicked. I'm into my 4th or so month of Tamoxifen and seem to be tolerating it "okay." I think my regular exercise habit is helping. Do I notice side effects? Yeah. I try to take life one day at a time. My recurrence risk is 10% after BMX and chemo. I'll happily take the 50% reduction down to 5% with tamoxifen. Thanks again for your work and this channel. I just subscribed. There is another lovely doctor, Liz ORiordan, who is also a breast cancer patient as well.
Thank you so much for watching. Let us know if there is a video you'd like to see.
I'm
Thank you. This was very helpful. Tried Arimidex first which caused joint pain (level 4 on 10 pt pain score) that would awaken me multiple times during the night. Tylenol helped somewhat. Switched to Aromasin. Reviewed list of possible side effects, noting which ones that I was experiencing & conferred with oncologist & then psychiatrist, changing dose of antidepressants, & starting therapy dealing with BC for the past year. Still dealing with sleep disturbances & swollen feet but tolerable side effects for benefits. (Triple positive HER 2/ stage 3b)
Thanks for sharing your experience. Pain at a 4/10 is substantial enough to make a change.
Thank you for making such great videos with clear information! They have really helped me. I am 40 years old and recently diagnosed with DCIS. There was some debate on whether or not it was actually invasive though, because there were isolated tumor cells in one lymph node. I’m about to start radiation, and then my doctor wants me to take tamoxifen after that. I have such mixed feelings because of everything I’ve heard about it. I asked my doctor if she could tell me my risk of reoccurrence with or without tamoxifen. She said she couldn’t tell me that. The only thing she would say is that it would reduce my risk by half. My mom had breast cancer 17 years ago, and when tamoxifen caused her to have side effects her doctor told her she could just quit taking it. He said it only helps 6% of women and no one knows which women that will be. Have you ever heard that statistic? Maybe things have changed in 17 years? Another question I have is if my risk is any higher because of my age and the fact that I am still around 10 years away from menopause? Thank you for any tips you can give me!
Thank you for your kind words. Tamoxifen can be a complex decision, and it's understandable to have mixed feelings. The statistic you mentioned may vary depending on individual factors. Tamoxifen is generally known to reduce the risk of recurrence significantly. Your age and pre-menopausal status can influence your treatment plan, but it's best to discuss these concerns in detail with your oncologist.
I do get, why we should take these drugs. Why the side effects. Dear Dr. Griggs has educated us thoroughly and passionately . IMO people could deal with it so much better if they could greatly reduce the length of time a person has to take something like this. That makes life so miserable quite a number of people just can't do it. Dr Griggs are we anywhere close to something of shorter sessions ?. 10 yrs is a bit much.
10 years is definitely a long time. For a disease that involves little cells getting away from the primary tumor, we do have evidence that longer is better for people at a substantial risk of recurrence. In the field of breast oncology, there is a tremendous effort to "de-escalate" (pull back on) treatments. Thank you for sharing your thoughts.
I’m on endocrine therapy with Letrozole tablets recently and my oncologist recommended for zometa for 3 years twice a year can you please advise what is the benefit of getting zometa . Thank you
Please - latest 2 studies finished in 2021 Sweden and 2023 UK were done bc women were quitting tamoxifen early due to the sude effects. They used lower dosages and found that 2.5 mg and 5 mg works equally as well if not bettee than 20 mg. 20 mg is the max amount before toxicity. This is why the side effects - it's 10x overdosing! Your bodies are reacting to being poisoned! Ask your dr for 2.5 mg or 5 mg pills and give that a try before stopping. There were no side effects at these effective dosages. Also, if you're on anastrazole, then ask for testosterone pellets compounded with anastrazole. Testosterone used to be used as a successful cancer treatment and prevention. Good luck!
Tamoxifen can definitely be used at a dose of 5 mg in people with DCIS or in people who want to take some treatment but cannot tolerate the standard dose of 20 mg. The standard dose is not an overdose. Testosterone is not recommended outside a clinical trial.
What do you think about high dose melatonin in place of AI?
There is no evidence that high doses of melatonin can replace an aromatase inhibitor.
I had stage zero dcis - extremely slow growing. I am seriously thinking about stopping my hormone blocker. I have gained weight. I have always exercised and still do. I have type 2 diabetes and have had good control for nearly 35 years. I have never really been overweight. I am thinking the side of effects from diabetes are worse than the breast cancer and hormone blocker.
In people with DCIS, endocrine therapy reduces the risk of another cancer "event" in the side with DCIS. There is no survival benefit. It is not clear if your weight will decrease when you stop the medication, but trying a short period off the medication may be helpful.
@@yerbba Thanks so much for answering.
Thank you for the information. Diagnosed with breast cancer Her2 positive in 2014, taken 5 months of chemotherapy, in conjuction with targeted therapy for 15 months, metastasized while on treatment to bone cancer. Went on Arimidex for 9 years, metastasized again to 5 new places in body, including spine. Chemotherapy is not an option. Hormonal treatment being given, Fluversant injections 2 x 250mg every 2 weeks over 3 sessions thereafter monthly for a period that it continues to help further metastases.
Can you please enlighten me a little about this last treatment.
Thanks for writing with your story. Fulvestrant is an estrogen receptor disruptor. We have a video about these medications. There is a newly-approved oral estrogen receptor disruptor that may be available. ua-cam.com/video/Ie7ruLkyrpY/v-deo.html
Medical team? I have no mediical team...
When we talk about a medical team, we mean all the people in your doctors office as well as your doctor. It's helpful to know that everyone in that office is working to help you. From the person who answers the phone to the person who checks you out, everyone is part of the team. If you are not feeling that support, your primary care doctor, nurse practitioner, physician assistant may be helpful in navigating your care. There may also be community health resources, support groups, or patient advocacy organizations that can offer guidance on how to manage post-treatment symptoms and connect you with medical professionals.
Stage 4. No other options
In people with Stage IV disease, staying on treatment is generally advised. However, if the treatment is worse than the disease, things can be changed.
I had a severe allergic reaction to a very low dose of tamoxifen. And I have hypertension and high cholesterol that does not respond to treatment so they do not want to give me AI drugs. I wanted to be able to take these medications.
This sounds really hard. Bone problems and hypertension can both be well managed in people on aromatase inhibitors. The benefits of the AIs are likely to be greater than the potential harms based on what you've written.
Thank you for this video. I am on Tam 20mg and am post menopausal. I had a severe bout of GERD after Arimidex. I have had a lot of side effects including heart palpitations and hair loss. The most difficult one for me right now is abdominal bloating. How does Tam cause this, and is it fluid retention or inflammation/bacteria in the gut? TIA
Tamoxifen can indeed cause bloating in some patients. It's not entirely clear why, but some thoughts are the following: Tamoxifen has estrogen like activity on some receptors in the body; if this is case in you, estrogen is known to cause fluid retention, which can lead to bloating. Tamoxifen may affect the digestive system, potentially slowing down digestion and leading to bloating. Some patients report experiencing indigestion, nausea, and other gastrointestinal issues while taking tamoxifen. The hormonal changes induced by tamoxifen ub premenopausal people can affect the body's water balance and metabolism, potentially contributing to bloating and fluid retention. In premenopausal women, tamoxifen can stimulate the ovaries, which may lead to the development of ovarian cysts. This can cause bloating and abdominal discomfort.
I was stage 2 , 2 lymph nodes positive oestrogen positive. Since starting Anastrozole my BP rose dramatically up to 215 . I was told possibly coincidence, i don't think it is I'd reached 65 without a BP problem. My oncotype dx score was 6 . Ive now just started taking Anastrozole every second day in the hope of reducing my Bp . Its still high despite now taking 2 BP meds. Im taking milled flaxseed and DIM every day as there natural oestrogen suppressors . Am i doing any good taking it every second day or just stop it all together, as worry about heart health as thats a family problem rather than cancer .
Great question. It is difficult to know, in the absence of data, whether the benefit of treatment will be reduced with taking it every other day.
Letrozole 100% raises BP. It should be listed as a significant side effect of letrozole.
I’m a farmer. Stage 2b surgery - 4 rounds of tc and 21 days of rt- ki6720% age 48 ++- 7 years of tamoxifen.
The hormone therapy is hard.. my heart rate is out of control - blurred vision- family history of strokes. Am thinking of reducing the dose to 5mg. I live alone in the deep forest of the Himalayas… no 911 ambulance service out here… taking DIM 400 mg everyday and am very physically active. The 20 is too hard on my body and its effecting my work- plus I drive a motorcycle… have been spooked to ride since starting
the HT
My fear is the treatment will kill me off quicker, through raised BP and cholesterol than the original diagnosis @@hsgrewal5689
I took Tamoxifen for a few days and suddenly I started feeling fatigue abd body ache. Not sure if this is because of Tamoxifen or something else. So, I do not know what to do 😢
Fatigue and body ache can be side effects of tamoxifen, but it’s important to discuss these symptoms with your doctor. They can help determine if tamoxifen is the cause or if there might be another underlying issue. Medication adjustments may be necessary.
During my pet scan they found i have uterus enlargement, since tamoxifen may cause endometriosis, is it wise to use tamoxifen,? I would greatly appreciate if you answer my question. Because i will be soon starting tamoxifen
Thanks for the question. Tamoxifen can cause thickening of the uterine lining but does not cause endometriosis, which is a condition in which uterine tissue is in other parts of the body.
Hello i just have a question,i have a breast cancer stage 2,finish last 2 nd part of chemo last nov,28 why do i have more body pain and hot flush?iis ok normal?and now i do the operation,on dec 14 thank you
Some of the side effects can accumulate after treatment is over. It is also possible that it took this many cycles for the ovaries to be affected. Some of the side effects you describe sound like treatment-induced menopause, which can be temporary or permanent.
@@yerbba thank you so much,♥️take care
Is it possible to take the anastrozole every other day in lieu of every day?
It's not clear if every other day anastrozole is as effective as daily. It is unlikely to cause harm and may be better than not taking the medication at all.
Does beer consumption cause breast cancer? I was diagnosed with ILC stage 3, I enjoy beer but I don’t get drunk or abuse it. I feel guilty that I may have caused this disease. I stopped drinking it since the treatment started. Is 0% alcohol beer okay? Also, can alcohol consumption cause BC recurrence?
In short, yes, alcohol consumption can cause BC recurrence. Research on how alcohol affects human body and what it causes.
Alcohol has been linked to a higher risk of developing breast cancer. There are not many studies indicating a higher risk of recurrence, so it is difficult to say. In general, limiting alcohol or eliminating alcohol altogether is probably prudent. It is not possible, however, to say that drinking alcohol is directly related to someone getting breast cancer. It is important not to add the burden of self-blame when going through a difficult medical experience.
I drank rarely until early 30s, and have not had a single drink since then. 64 now and got BC last year. It just happens.
How about after completing the plan 5 years or so? Tamoxofin only acts as a blocker.
For people who do not have functioning ovaries who are at sufficiently high risk, additional endocrine therapy with an aromatase inhibitor may be offered.
@@yerbba thanks...can you pls talk about endometrium and the different ranges and consequences
Thank you very much for your very, very helpful information. I am an emergency nurse and I love my job. I know I’ll have some problems but I will do everything to decrease my chance of recurrence and have the best quality of life I can have. I find your videos very helpful and clear. Even though I’m a nurse I don’t know everything but I want to learn. Thank you again!
You're very welcome! It's commendable that you're determined to take steps to decrease your chance of recurrence and prioritize your quality of life. Learning and seeking information are powerful tools in navigating this journey. Thank you for your dedication to your patients and for being a valuable part of the healthcare community.
Thank you for this video. I have been on monthly Lupron and daily exemestane for 3 years now. I’ve made an appointment with my onc to let her know I want to stop the medications. I’m only 40 and I feel like a 60 year old. Just the thought of having to go through all this again naturally after the meds is daunting. So for me it’s a quality of life thing. I want to feel my actual age again for a while before menopause happens again naturally.
Thanks for sharing your thoughts. It would be helpful for you to explain in detail the experiences you are having with your medical team in case there are alternatives, such as tamoxifen.