I was diagnosed with Breast Cancer almost 15 years ago and was prescribed Tamoxifen. I had the worst brain fog. Another side effect for me that you didn’t mention was that my bones hurt. I stood a lot at my job and wouldn’t sit down at the computer when I had to enter something because when I stood back up I just hurt for an hour and it wasn’t worth sitting for that short amount of time. When I took my lunch break for an hour then the discomfort of getting up was worth it. It was a very hard drug for me to endure. Thank you for your information!!!
Tamoxifen can indeed have really tough side effects like brain fog and muscle and bone pain. Thank you for sharing your experience; it helps others know they’re not alone.
Way off base here. I'm a physician and the brain fog and exhaustion were so bad that not only couldn't I work, I couldn't use the ATM, pay the bills, cook dinner, or buy groceries. We have to start being honest that the side effects are intolerable for at least some women. If I were to die in three months, and taking tamoxifen for two years would save my life, I wouldn't be able to do it. Why do oncologists ignore this and deny this? Also, has anyone actually studied spicy food and hot flashes? I can't find a single research article on this. How does relaxation work for nocturnal hot flashes, when hot flashes are worse at night? In all honesty this was depressing.
It sounds like you're having a really hard time with tamoxifen. It's not clear how relaxation works for hot flashes to be honest, but many people find that it does. Our nervous systems are fascinating. Thanks for sharing your experience with tamoxifen. Our videos do not intend to make people feel unheard. We generally talk about the more common experiences with the drug. For people with non-invasive breast cancer (DCIS), a lower dose of tamoxifen has been suggested as an alternative based on one study, but we do not have any data in invasive disease. The recommendation on spicy food is based on the experiences of approximately 1000 patients. Of course, a collection of anecdotes does not equal data?
I agree, totally with what you are saying. We as women know our body and know how it works. If something doesn’t seem right or up then we should always go and see what’s wrong and we expect a caring concerned. Doctor will listen. And help decide the Right thing for us to take. That’s why I have learned that I have to be my own advocate when it comes to something as serious as breast cancer! We cannot be shy of asking, any questions, where or when or why. so I just wanted to share when I saw your question that you had left just to let you know what I have gone through and just to say we seem to go through a lot of the same symptoms depending on different breast cancer. 💕 remember, you are not alone. Stay strong keep the faith! God‘s got this!💝🎀😇🙏🏼
This is off topic of this particular video, but was wondering Dr. Griggs If there is possibly of explaining what a Seroma is, what causes them, how they could be prevented and what is the treatment to resolve them.. I have had 3 surgeries..2 of the 3 a seroma developed, the last 1 took 5 months to resolve!!!..I just had an axillary lymph node biopsy and guess what??!! another one has developed..if you have already done a video, would you please direct me to it?? Thank you so much. Your informational videos have been so helpful especially the ones addressing the emotional impact of breast dx, sharing with family and friends, the waiting for results, etc.. Dr. Griggs, you share so much kindness, understanding, and compassion..Thank you..
Thanks for the question. We do have a video describing seromas (check it out here ua-cam.com/video/3TxPRY-CXjY/v-deo.html). We are happy to respond to your question as well. When tissue is removed, the body fills up the cavity with our own serum (the liquid part of blood). They say, "nature abhors a vacuum," meaning that when something is removed, something else fills in that space. The seroma will stay there until the body fills in the area with new, normal tissue and the fluid is reabsorbed into the body. For people in whom the seroma causes pain, a needle aspiration can be performed to remove the fluid and relieve some of the pressure. Because the fluid is likely to reaccumulate for the same reasons it developed, medical teams tend not to do this very often. There are some surgical techniques that surgeons use to decrease the likelihood of a seroma developing, but it is not entirely possible to prevent a seroma from forming. Keeping surgical drains in place until fluid has decreased in volume is another strategy.
@@yerbba thank you for your explanation regarding seromas. It's a long story, there was a drain and it was removed I think prematurely..after removed much more fluid built up and would not stop..my surgeon thought it was due to the surgery performed removed all tissue to the chest wall after having 6 1/2 weeks of radiation.. what ever the reason, my surgeon was truly upset, profusely apologetic, and did everything possible to address the situation..note. the 1st surgeon made a mistake of not removing tissue to chest wall(lobular ca) and 2nd surgeon attempted to correct the error, but she did not become my surgeon until radiation was completed..
I was diagnosed with invasive breast cancer stage IIa ER+ in my right breast. I will have bilateral mastectomy with aesthetic flat closure although it is not required. I want it to minimize chance of breast cancer recurrence. In that case, do I still need to take hormone therapy? I am willing to take chemo but I want to avoid hormone therapy especially tamoxifen because my maternal grandmother and mother have histories of ovarian and uterus cancers.
My oncologist has suggested I change from Letrozole to Tamoxifen but I am concerned that this may accelerate the growth of my large 8cm uterine fibroid. I have been on Letrozole for 7 months and have every side effect except hot flushes. I am 66 years old and have been told my risk of recurrence is high. Should I change or not?
Great question. It is possible that tamoxifen may increase the size of the uterine fibroid, but it won't necessarily happen. Another option would be to change to a different aromatase inhibitor. Many people find that switching helps a great deal with their side effects.
My oncologist he is not good ,you walk in he says nothing for about 10 minutes after keeping you waiting hour over appointment time,then he just gives brief no helpful answer
This sounds really hard. It sounds as if your oncologist does not have enough resources or enough colleagues to take the best care of patients as he probably wants to.
We're sorry to hear you're experiencing this. Cramping is reported as a side effect by some people when starting tamoxifen. To help manage the cramps, try using a heating pad on your abdomen, staying hydrated, and doing gentle stretching exercises. The hope is that your symptoms will decrease soon. If they don't, reach out to your medical team. Wishing you relief soon.
I have been taking 10 mg (1/2 dose) Tamoxifen per day for a month because of side effects. I am still having the same side effects as 20 mg. Doesn't that indicate that the 10 mg are also working?
That’s a great question. If you're still experiencing the same side effects at 10 mg, it’s possible that the lower dose is still effective for you. Tamoxifen works at different doses depending on individual factors, and for some people, even lower doses can still have the same impact on hormone receptors. A dose of 5 mg is frequently being used in people with non-invasive breast cancer, which does not recur throughout the body. A lower dose has not been tested in people with invasive cancer, however.
I was prescribed Anastrozole but i never took it. I had stage 0 and chose to have a mastectomy and an implant inserted because i had a 3 inch area of calcifications. The surgeon said i would lose half of my breast anyhow. The side effects are horrible and I'm not willing to deal with them. I'd rather take my chances. My surgery was in January of 23. I am now 69 years old.
Deciding not to take anastrozole is a personal choice, and it’s important to weigh the pros and cons. After your surgery, it sounds like you made the best decision for your situation especially because you had non-invasive breast cancer. In people who have invasive breast cancer, the benefits are more substantial than in non-invasive cancer.
I have 6 months left and have gained weight, hair loss, dryness and joint pain is making it tough to finish. If I told my oncologist she would just dismiss it
Tamoxifen can cause side effects in males, including hot flashes, fatigue, and mood swings. The dose of 10 mg a week is unlikely to cause these side effects, however.
Yes, tamoxifen can still be prescribed for a patient who is ER-negative and PR-positive. Tamoxifen works by blocking estrogen receptors, and it can be effective in treating PR-positive breast cancer even if the cancer is not ER-positive.
I find that my oncologist is not really helpful. I report things and she has no resolution or suggestions on how to manage any side effects... so I consider the interaction useless.
You should consider finding a new one then -- unfortunately, you need to be your own advocate and find someone who will listen to your concerns and work to find solutions. I hope you can find one.
You're absolutely right-while hair loss (and more often, hair thinning) is less common with tamoxifen, it can still happen and is definitely distressing for those who experience it. It’s an important side effect to acknowledge, and your concern is completely valid. It's important to make sure that there is not another cause for your hair loss. Thyroid conditions are one thing that are very common and can cause hair thinning and loss. There are other things that can as well. Talking about this with your primary doctor is important to rule out other causes of your symptoms.
Itchiness can be so uncomfortable. Many people find relief using gentle, fragrance-free moisturizers and antihistamines. Your medical team may be able to adjust your medication or suggest other topical treatments to help manage the itchiness. It would also make sense to see your primary doctor to rule out other causes of itching. Acupuncture has also been reported to help.
You’ll need a double hip replacement for crumbling bones and suffer arthritis or extremely sore muscles taking this drug, to the point of being unbearable. Two breast cancer clients I know had the exact same experiences taking this drug … it’s horrible. Cancer treatment isn’t treatment
Thank you for sharing your experience. We're sorry to hear about the struggles you've witnessed with these side effects. Some cancer treatments can indeed come with harsh side effects like bone and muscle pain, and it can be incredibly tough on the body. If the side effects of a treatment are becoming unbearable, it's worth discussing other options with your care team-they may have suggestions for managing symptoms or adjusting treatment plans. Tamoxifen actually strengthens bones and decreases the risk of hip fractures. It is likely that your experience and that of the people you know is related to something else, including other treatments for breast cancer. Wishing you the best.
When I stopped Tamoxifen (anastrozole was too debilitating) stopped because a pulmonary embolism 0:06 0:06 was found, no symptoms, so be careful, 2years so far of debilitating back, side pain. Yes there’s some arthritis but these drugs have exacerbated it. Never had this pain before. I stopped the drugs. And yes my med/onc is a cold blunt not personable female who does not want to answer questions.
Thanks for the suggestion! We are working on a video about bisphosphonates. Additionally, we’ll work on creating a video about Evista. Make sure to subscribe to stay tuned!
Thanks for the question. Tamoxifen can cause thickening of the uterine lining. Cancer of the uterus is extremely rare. Some people stop having periods, some people have irregular periods.
Yes, tamoxifen can cause hair thinning. This side effect is reversible. In people with hair loss, there are other conditions that should be ruled out, such as thyroid disease. The hair thinning from the aromatase inhibitors is more common and more pronounced.
Thank you for bringing up the mood swings caused by tamoxifen. It can be incredibly challenging to deal with these emotional ups and downs. Many people find that incorporating regular exercise, mindfulness practices like meditation, and maintaining a healthy diet can help manage mood swings. Additionally, joining a support group or talking to others who are going through similar experiences can provide comfort and practical advice.
Fatigue is a common side effect of Letrozole. Finding ways to manage it, such as light exercise, proper hydration, and adequate rest, can sometimes help.
Tamoxifen is sometimes used alone without ovarian suppression, particularly in premenopausal women who retain their ovarian function and who had a high enough risk of recurrence that chemotherapy was recommended. Tamoxifen blocks estrogen receptors, while aromatase inhibitors (AIs) lower overall estrogen levels in the body. Taking both isn't typically recommended because each has its specific role, and combining them can increase side effects without providing additional benefit.
Can you post a video about the side effects of Arimidex along with Zoladex? These side effects seem to be real problematic for quality of life. Even with diet and exercise, the hot flashes and bone pain are no joke. You are the best! ❤️
I was diagnosed with Breast Cancer almost 15 years ago and was prescribed Tamoxifen. I had the worst brain fog. Another side effect for me that you didn’t mention was that my bones hurt. I stood a lot at my job and wouldn’t sit down at the computer when I had to enter something because when I stood back up I just hurt for an hour and it wasn’t worth sitting for that short amount of time. When I took my lunch break for an hour then the discomfort of getting up was worth it. It was a very hard drug for me to endure.
Thank you for your information!!!
Tamoxifen can indeed have really tough side effects like brain fog and muscle and bone pain. Thank you for sharing your experience; it helps others know they’re not alone.
Way off base here. I'm a physician and the brain fog and exhaustion were so bad that not only couldn't I work, I couldn't use the ATM, pay the bills, cook dinner, or buy groceries. We have to start being honest that the side effects are intolerable for at least some women. If I were to die in three months, and taking tamoxifen for two years would save my life, I wouldn't be able to do it. Why do oncologists ignore this and deny this?
Also, has anyone actually studied spicy food and hot flashes? I can't find a single research article on this.
How does relaxation work for nocturnal hot flashes, when hot flashes are worse at night?
In all honesty this was depressing.
It sounds like you're having a really hard time with tamoxifen. It's not clear how relaxation works for hot flashes to be honest, but many people find that it does. Our nervous systems are fascinating. Thanks for sharing your experience with tamoxifen. Our videos do not intend to make people feel unheard. We generally talk about the more common experiences with the drug. For people with non-invasive breast cancer (DCIS), a lower dose of tamoxifen has been suggested as an alternative based on one study, but we do not have any data in invasive disease. The recommendation on spicy food is based on the experiences of approximately 1000 patients. Of course, a collection of anecdotes does not equal data?
I agree, totally with what you are saying. We as women know our body and know how it works. If something doesn’t seem right or up then we should always go and see what’s wrong and we expect a caring concerned. Doctor will listen. And help decide the Right thing for us to take. That’s why I have learned that I have to be my own advocate when it comes to something as serious as breast cancer! We cannot be shy of asking, any questions, where or when or why. so I just wanted to share when I saw your question that you had left just to let you know what I have gone through and just to say we seem to go through a lot of the same symptoms depending on different breast cancer. 💕 remember, you are not alone. Stay strong keep the faith! God‘s got this!💝🎀😇🙏🏼
This is off topic of this particular video, but was wondering Dr. Griggs If there is possibly of explaining what a Seroma is, what causes them, how they could be prevented and what is the treatment to resolve them.. I have had 3 surgeries..2 of the 3 a seroma developed, the last 1 took 5 months to resolve!!!..I just had an axillary lymph node biopsy and guess what??!! another one has developed..if you have already done a video, would you please direct me to it?? Thank you so much. Your informational videos have been so helpful especially the ones addressing the emotional impact of breast dx, sharing with family and friends, the waiting for results, etc.. Dr. Griggs, you share so much kindness, understanding, and compassion..Thank you..
Thanks for the question. We do have a video describing seromas (check it out here ua-cam.com/video/3TxPRY-CXjY/v-deo.html). We are happy to respond to your question as well. When tissue is removed, the body fills up the cavity with our own serum (the liquid part of blood). They say, "nature abhors a vacuum," meaning that when something is removed, something else fills in that space. The seroma will stay there until the body fills in the area with new, normal tissue and the fluid is reabsorbed into the body. For people in whom the seroma causes pain, a needle aspiration can be performed to remove the fluid and relieve some of the pressure. Because the fluid is likely to reaccumulate for the same reasons it developed, medical teams tend not to do this very often. There are some surgical techniques that surgeons use to decrease the likelihood of a seroma developing, but it is not entirely possible to prevent a seroma from forming. Keeping surgical drains in place until fluid has decreased in volume is another strategy.
@@yerbba thank you for your explanation regarding seromas. It's a long story, there was a drain and it was removed I think prematurely..after removed much more fluid built up and would not stop..my surgeon thought it was due to the surgery performed removed all tissue to the chest wall after having 6 1/2 weeks of radiation.. what ever the reason, my surgeon was truly upset, profusely apologetic, and did everything possible to address the situation..note. the 1st surgeon made a mistake of not removing tissue to chest wall(lobular ca) and 2nd surgeon attempted to correct the error, but she did not become my surgeon until radiation was completed..
I was diagnosed with invasive breast cancer stage IIa ER+ in my right breast. I will have bilateral mastectomy with aesthetic flat closure although it is not required. I want it to minimize chance of breast cancer recurrence. In that case, do I still need to take hormone therapy? I am willing to take chemo but I want to avoid hormone therapy especially tamoxifen because my maternal grandmother and mother have histories of ovarian and uterus cancers.
Thank you, Dr.Griggs, for your pharmaceutical advice.
Thank you for watching! We're glad you found this video helpful.
My oncologist has suggested I change from Letrozole to Tamoxifen but I am concerned that this may accelerate the growth of my large 8cm uterine fibroid. I have been on Letrozole for 7 months and have every side effect except hot flushes. I am 66 years old and have been told my risk of recurrence is high. Should I change or not?
Great question. It is possible that tamoxifen may increase the size of the uterine fibroid, but it won't necessarily happen. Another option would be to change to a different aromatase inhibitor. Many people find that switching helps a great deal with their side effects.
Vitamin E (tocotrienol not tocopherol)
My oncologist he is not good ,you walk in he says nothing for about 10 minutes after keeping you waiting hour over appointment time,then he just gives brief no helpful answer
In my experience, there are not a lot of good oncologists out there.
This sounds really hard. It sounds as if your oncologist does not have enough resources or enough colleagues to take the best care of patients as he probably wants to.
I felt iam forgettable .of taking TAMOXIFEN..I am thinking to stop.BUT THER ARE SMALL LUMP IN MY UNDERARM
This is my third week on tamoxifen and I have started to have bad cramps like I'm having my period. I have been miserable for 2 daya
We're sorry to hear you're experiencing this. Cramping is reported as a side effect by some people when starting tamoxifen. To help manage the cramps, try using a heating pad on your abdomen, staying hydrated, and doing gentle stretching exercises. The hope is that your symptoms will decrease soon. If they don't, reach out to your medical team. Wishing you relief soon.
Does tamoxifen have any impact on the results of oestrodiol testing?
Yes, tamoxifen can impact the results of estradiol testing in premenopausal women but not in postmenopausal women.
I have been taking 10 mg (1/2 dose) Tamoxifen per day for a month because of side effects. I am still having the same side effects as 20 mg. Doesn't that indicate that the 10 mg are also working?
That’s a great question. If you're still experiencing the same side effects at 10 mg, it’s possible that the lower dose is still effective for you. Tamoxifen works at different doses depending on individual factors, and for some people, even lower doses can still have the same impact on hormone receptors. A dose of 5 mg is frequently being used in people with non-invasive breast cancer, which does not recur throughout the body. A lower dose has not been tested in people with invasive cancer, however.
I was prescribed Anastrozole but i never took it. I had stage 0 and chose to have a mastectomy and an implant inserted because i had a 3 inch area of calcifications. The surgeon said i would lose half of my breast anyhow. The side effects are horrible and I'm not willing to deal with them. I'd rather take my chances. My surgery was in January of 23. I am now 69 years old.
Diagnosed when u r 23 years old?
and now 69 years old?
Please reply
@sabrinarahman7409 no, my surgery was January 20 2023. I'm 69 now.
Deciding not to take anastrozole is a personal choice, and it’s important to weigh the pros and cons. After your surgery, it sounds like you made the best decision for your situation especially because you had non-invasive breast cancer. In people who have invasive breast cancer, the benefits are more substantial than in non-invasive cancer.
I have 6 months left and have gained weight, hair loss, dryness and joint pain is making it tough to finish. If I told my oncologist she would just dismiss it
Possible side effects of tamoxifen in males? Can 10mg weekly cause serious side effects?
Tamoxifen can cause side effects in males, including hot flashes, fatigue, and mood swings. The dose of 10 mg a week is unlikely to cause these side effects, however.
If the patient is ER negative ,PR positve and HER2 negative. Is tamoxifen still prescribed to the patient?
Yes, tamoxifen can still be prescribed for a patient who is ER-negative and PR-positive. Tamoxifen works by blocking estrogen receptors, and it can be effective in treating PR-positive breast cancer even if the cancer is not ER-positive.
@@yerbba ...how much will be the effectiveness of this drug? I mean if a patient avoids this hormonal therapy, would it be ok or dangerous?
I find that my oncologist is not really helpful. I report things and she has no resolution or suggestions on how to manage any side effects... so I consider the interaction useless.
You should consider finding a new one then -- unfortunately, you need to be your own advocate and find someone who will listen to your concerns and work to find solutions. I hope you can find one.
We hope the information we've provided in our videos might help you discuss options with your oncologist.
How about hair loss?????
You're absolutely right-while hair loss (and more often, hair thinning) is less common with tamoxifen, it can still happen and is definitely distressing for those who experience it. It’s an important side effect to acknowledge, and your concern is completely valid. It's important to make sure that there is not another cause for your hair loss. Thyroid conditions are one thing that are very common and can cause hair thinning and loss. There are other things that can as well. Talking about this with your primary doctor is important to rule out other causes of your symptoms.
What can help against itchiness?
Itchiness can be so uncomfortable. Many people find relief using gentle, fragrance-free moisturizers and antihistamines. Your medical team may be able to adjust your medication or suggest other topical treatments to help manage the itchiness. It would also make sense to see your primary doctor to rule out other causes of itching. Acupuncture has also been reported to help.
@@yerbba Thank you!
You’ll need a double hip replacement for crumbling bones and suffer arthritis or extremely sore muscles taking this drug, to the point of being unbearable. Two breast cancer clients I know had the exact same experiences taking this drug … it’s horrible. Cancer treatment isn’t treatment
Thank you for sharing your experience. We're sorry to hear about the struggles you've witnessed with these side effects. Some cancer treatments can indeed come with harsh side effects like bone and muscle pain, and it can be incredibly tough on the body. If the side effects of a treatment are becoming unbearable, it's worth discussing other options with your care team-they may have suggestions for managing symptoms or adjusting treatment plans. Tamoxifen actually strengthens bones and decreases the risk of hip fractures. It is likely that your experience and that of the people you know is related to something else, including other treatments for breast cancer. Wishing you the best.
When I stopped Tamoxifen (anastrozole was too debilitating) stopped because a pulmonary embolism 0:06 0:06 was found, no symptoms, so be careful, 2years so far of debilitating back, side pain. Yes there’s some arthritis but these drugs have exacerbated it. Never had this pain before. I stopped the drugs. And yes my med/onc is a cold blunt not personable female who does not want to answer questions.
Dr. I’m on Evista, video please
Thanks for the suggestion! We are working on a video about bisphosphonates. Additionally, we’ll work on creating a video about Evista. Make sure to subscribe to stay tuned!
I didn’t see anything about endometrial problems.
Thanks for the question. Tamoxifen can cause thickening of the uterine lining. Cancer of the uterus is extremely rare. Some people stop having periods, some people have irregular periods.
Can Tamoxifen cause hair loss?
Yes, tamoxifen can cause hair thinning. This side effect is reversible. In people with hair loss, there are other conditions that should be ruled out, such as thyroid disease. The hair thinning from the aromatase inhibitors is more common and more pronounced.
That’s
My question cause I’m on 2 months taking it and my hair is falling like crazy!! I’m considering to stop.
You have mentioned nothing about the mood swings that tamoxifen can cause. These have been very problematic for me.
Thank you for bringing up the mood swings caused by tamoxifen. It can be incredibly challenging to deal with these emotional ups and downs. Many people find that incorporating regular exercise, mindfulness practices like meditation, and maintaining a healthy diet can help manage mood swings. Additionally, joining a support group or talking to others who are going through similar experiences can provide comfort and practical advice.
I take letrozole,my side effects is fatigue
Fatigue is a common side effect of Letrozole. Finding ways to manage it, such as light exercise, proper hydration, and adequate rest, can sometimes help.
Why are some people treated with only tamoxifen without ovarian suppression? If tamoxifen blocks estrogen and AI lowers estrogen, why not take both?
Tamoxifen is sometimes used alone without ovarian suppression, particularly in premenopausal women who retain their ovarian function and who had a high enough risk of recurrence that chemotherapy was recommended.
Tamoxifen blocks estrogen receptors, while aromatase inhibitors (AIs) lower overall estrogen levels in the body. Taking both isn't typically recommended because each has its specific role, and combining them can increase side effects without providing additional benefit.
Can you post a video about the side effects of Arimidex along with Zoladex? These side effects seem to be real problematic for quality of life. Even with diet and exercise, the hot flashes and bone pain are no joke. You are the best! ❤️
Thanks for the suggestion! Managing those side effects can be tough, and we want to provide as much helpful information as possible.
Can you please talk about uterine polyps seen after taking tamoxifen