Painting by American Artist Richard E Miller (1875-1943), and titled Reflections at the Dressing Table.
Okay I’m going to say something here which will undoubtedly ruffle feathers. It has to do with tamoxifen and other breast cancer drugs, oncotype scores, and taking yourself off your meds….without discussing it with your care team.
Do I like what tamoxifen has done to my body? Hell no. But I don’t want to die from a breast cancer recurrence either. So I will stay on this as long as my doctors say.
Radiation gave me osteopenia, so after a couple years on tamoxifen and a full hysterectomy I was not a candidate for aromatase inhibitors….because they contribute to bone density loss among other things.
One of my friend’s mothers was a test patient for tamoxifen when it was first being introduced over 30 years ago. She is living proof that the drug works. I don’t believe I’m part of some pharmaceutical conspiracy other then I think the cost of drugs a ridiculous even when you have health insurance that supposed to be good.
I am sure about one thing: there are no easy answers when it comes to breast cancer. But I would rather be alive. So when I see threads of conversation in breast cancer support groups where women essentially musing to take themselves off of their meds, it upsets me greatly. I also have to bite my tongue and resist the urge to say anything most of the time.
Adverse reactions breast cancer meds like tamoxifen, even those ones our friends and family can’t see are very real. Which is why I also get upset when you have ignorant people who have not been through breast cancer, let alone ever taken a breast cancer drug like tamoxifen and they say things like the side effects are psychosomatic, or in layman’s terms made up in our heads. Anyone who says that to you is a truly ignorant person and you should feel free and no uncertain terms to tell them that.
They are as bad as the ones who come to you with the names of several plastic surgeons when you’re barely out of surgery. I had that happen to me and it was very upsetting. I didn’t even know at that point if they had gotten all the cancer out and if I was going to be having radiation treatment or radiation and chemotherapy. I felt crappy and I know these people were trying to help but all they did was make me cry when no one was around.
Trust me, I suffer with the whole self body image worse after breast cancer. I look in the mirror and I have breasts going into different directions because one is only part of a breast at this point. But , I still think I made the right decision when I decided to not have breast reconstruction. I know in my heart of hearts that I am just not a woman destined to have reimagined boobs.
I also wish to remind those who talk about their oncotype scores, especially when they are low. Mine is low – it’s a 10 – but my score and everyone else’s is predicated on the presumption that I am going to have treatment and take breast cancer meds as a preventative.
I know taking these drugs is hard – I’m doing it and I am looking at a potential of 10 years – they will reevaluate me at 5 years which is in a year. But we shouldn’t be playing doctors on ourselves.
So if you need a change of meds or you really can’t tolerate the meds you are on, for the love of God don’t just take yourself off something. Go to your doctor. For example, the different generics of the breast cancer meds affect women differently and it’s not necessarily because of the actual drug it’s things like the binders and inert additives that cause the reactions. I discovered that the when I went from having annoying side effects of tamoxifen to I really felt sick – they had changed my generic, and the formulation is not 100% the same from generic to generic. So needless to say at my local pharmacy there is now a note from my oncologist and my hospital system that I only be given specific generics. I actually wrote about this when it happened someplace on this blog.
My final comment, is that we all have to remember that each cancer is different in each person. Sometimes we see people talking about their reactions to meds, and there is a very good chance it won’t necessarily affect you or affect you in the same way.
I discovered my inner courage fighting this disease, and I urge all of you to remember that you have that steely core within you. Breast-cancer hits the core of our very femininity, no doubt about it. Not trying to downplay it. I just believe that every woman needs to make smart decisions, not necessarily ones based on vanity.
ihavebreastcancerblog 
You aren’t ruffling my feathers, I am completely in agreement. I worry so much about women who decide to stop taking tamoxifen, or decide they won’t complete their chemotherapy regimens due to side effects. While this is not the best solution (treatment) and I wish there were a cure or a vaccine, for now, this is what we have and the side effects far outweigh the potential risks. My Oncotype DX score was high and my recurrence rate was 1 in 4, and w/Tamoxifen cutting that by 50% to 1 in 2, I’m willing to be on it for 10 years, even with the side effects.This is important information that needs to be shared, thank you for posting.
Couldn’t agree more! When I read the side effects of hormone blocking cancer fighting drugs are “annoying” and the person is musing they will just stop taking them I want to give them a good shake. Annoying? Breast cancer is more than annoying honey, it’s life-threatening! Take the pills, deal with the side effects and be happy that you have a tool to keep you alive. Guess I’m not good at biting my tongue LOL.
I agree. It is best for each person to talk with their doctor who knows what is best for them.
I have never considered just going off Tamoxifen. Like you, I might not like taking Tamoxifen, but if I need it then I am going to take it. I did not know that some generics were different. I will have to look up that blog post.
I didn’t have reconstruction either. Seems like everyone around me has and they appear to think I’m crazy because I never did. I figure it is my body and my life. So sorry they were insensitive to you after your surgery. One thing I learned from the journey is that often you have to take it one step at a time to keep from feeling overwhelmed. Being pushed to make decisions about plastic surgery was too much, even though they meant well.
Thank for sharing. Great post.
Greetings,
My name is Dr. Dana Hansen, Assistant Professor of Nursing at Kent State University. You can learn more about me by visiting my faculty web page at http://www.kent.edu/nursing/facstaff/bio/~dhansen1/
We are contacting you because you are listed as the contact person of the blog. My research team and I are interested in learning about the family caregiver’s experience with reading their loved one’s illness blog.
I was inspired to conduct this research during my sister-in-law’s journey through breast cancer. After interacting on her blog, I began to wonder what it was like for her husband (family caregiver) to read her blog. The family caregiver of the person who is writing the illness blog can find out more about our study by going to our study website: https://nursing.kent.edu/caretaker. There is a screen for you to share your contact information if you are interested in participating. You can also email us at caregiver.kent.edu
After we receive your information, we will contact you to discuss the study further and establish a time to conduct a 1 hour phone or Skype (your choice) interview. During the interview, we will ask questions about your experience as a caregiver interacting with your loved one on an illness blog. A nominal onetime payment of $50.00 will be mailed to you once the interview is complete.
Participation is voluntary. Refusal to take part in the study involves no penalty or loss of benefits to which participants are otherwise entitled. Participants may withdraw from or stop the study at any time without penalty or loss of benefits to which they are otherwise entitled.
If you are not the family caregiver of the person with a serious illness, please forward this information to someone who is.
Thank you for your time and consideration,
Dr. Dana Hansen
Dana Hansen RN, PhD
Assistant Professor
Kent State University, College of Nursing
113 Henderson Hall, P. O. Box 5190, Kent, OH 44242
Hello,
I appreciate it if you take the time to consider the following research study opportunity. Thanks much
Greetings,
My name is Dr. Dana Hansen, Assistant Professor of Nursing at Kent State University. You can learn more about me by visiting my faculty web page at http://www.kent.edu/nursing/facstaff/bio/~dhansen1/
We are contacting you because you are listed as the contact person of the blog. My research team and I are interested in learning about the family caregiver’s experience with reading their loved one’s illness blog.
I was inspired to conduct this research during my sister-in-law’s journey through breast cancer. After interacting on her blog, I began to wonder what it was like for her husband (family caregiver) to read her blog. The family caregiver of the person who is writing the illness blog can find out more about our study by going to our study website: https://nursing.kent.edu/caretaker. There is a screen for you to share your contact information if you are interested in participating. You can also email us at caregiver@kent.edu
After we receive your information, we will contact you to discuss the study further and establish a time to conduct a 1 hour phone or Skype (your choice) interview. During the interview, we will ask questions about your experience as a caregiver interacting with your loved one on an illness blog. A nominal onetime payment of $50.00 will be mailed to you once the interview is complete.
Participation is voluntary. Refusal to take part in the study involves no penalty or loss of benefits to which participants are otherwise entitled. Participants may withdraw from or stop the study at any time without penalty or loss of benefits to which they are otherwise entitled.
If you are not the family caregiver of the person with a serious illness, please forward this information to someone who is.
Thank you for your time and consideration,
Dr. Dana Hansen
Dana Hansen RN, PhD
Assistant Professor
Kent State University, College of Nursing
113 Henderson Hall, P. O. Box 5190, Kent, OH 44242