Tomoxifen or not. Pros vs cons.
Posted , 9 users are following.
I'm 46, have had a double mastectomy, had ER+ Stage1 (10.5 mm) cancer in left breast. No family history and BRCA/32 genes tested-no mutations at all. I was advised by my oncologist that because I had multiple aspirations in years past on both breast for fibroid cysts, that it put me at a higher risk for future cancer in the other breast, so that's why I decided on the bilateral. All nodes are clear and I'm otherwise a very healthy person. My question is, I've been told that by taking tamoxifen it will lower my chance of recurrence somewhere else in my body by only a slight amount. I had the I Oncotype DX test done and it came back at 17. Per those results, with Tamoxifen it lowers it to 11%. I consulted with 3 medical oncologists and they all 3 have different numbers. I probably fall somewhere in between. The lowest was approx 12% recurrence after 5 years if I do nothing but lowering it by 4% with Tomoxifen. I've read about all the horrible side effects and I'm truly torn between what I should do. My blood work came back that I am already borderline menopause. I really need guidance!
1 like, 15 replies
sandra54321 Gatorgirl
Posted
Hi
Knowing ladies who have had breast cancer with a low risk of it coming back l would say, take Tamoxifen!! two of the ladies breast cancer came back and spread. both were 'low' chancef it coming back. I am sorry to say, they don't know enough about the different breast cancer, or they would be somewhere near finding a cure. It all seems very hit and miss, there are some amazing treatments out there, but they still are not 100% So l think you should take a chance.
I know ladies that have no problem with Tamoxifen, it is like any drug, and we all different with how with cope with the side effects.
If you are borderline, then l guess in a year or two they will suggest you change to Aromatase inhibitors,hich are for post menopausal ladies. There is a study that suggest it is better to stay on AI's for more than 5 years. I have been on them for 6 years and will continue for at least another 4 years and who knows could be forever! I am more than happy to stay on the AI's anything that will give me a chance. l don't want any 'if only l had taken the drugs' if it returns/spreads.
I wish you well in whatever your decide.
Are you in the UK?
Gatorgirl sandra54321
Posted
Thanks for your response, Sandra! I live in the USA. I think part of my confusion and concern has not only been the side effects, but the fact that I no longer have breast tissue which is where the Tamoxifen blocks the estrogen from going. I guess it's blocking any microscopic remnants left behind as well for any part of my body. You're right, I don't know how it will affect me personally, but just the thought of everything it could do, scares me. I will it's likely take it and just hope for the best. Continued good luck to you, as well. ??
sandra54321 Gatorgirl
Posted
And as you microscopic cancer which can take years to show.
If you try tamoxifen and after 6 months you are having problems ask to try aromatase inhibitors. You will hopefully be far enough through the menopause to have them.
To my mind I will take anything that gives me that extra %
Take care x
Gatorgirl sandra54321
Posted
sandra54321 Gatorgirl
Posted
Do you belong to a breast cancer group in the USA? we have one on facebook, very good for throwing the odd questions out and getting a response from other ladies going through the same x
Gatorgirl sandra54321
Posted
I don't belong, per say, but I follow conversations.... I can always join in! So far, I've kept this very private and the only people who know I've even had cancer are my family and very close friends. I will reach out some more and hopefully get positive feedback.
Gatorgirl
Posted
sandra54321 Gatorgirl
Posted
We all cope differently with regards to speaking to others, l found speaking to others very helpful and supportive. Especially going through chemotherapy. Good to know the pains you are suffering are 'normal'
I hope you stay well x
Razouski Gatorgirl
Posted
I can empathise with how you're feeling. I had a mastectomy earlier this year. I'm 52 but (surprisingly to my oncologist) am still having periods, so was told I would need to take Tamoxifen. I was really reluctant as one of the possible side effects was changes to the voice (and I do a lot of singing, and had only just got my confidence back to sing more after loosing my hearing 12 months before). I looked at the stats and had various conversations about it. In the end it was my daughters who convinced me (aged 19 and 21), who asked me what I would tell them to do if they were in the same position.
I then started taking the Tamoxifen, and found my periods stopped, I had hot flushes, and worst of all it exacerbated my vertigo (linked to my hearing loss) and made me very dizzy and unstable. The oncologist was really surprised but took me off the Tamoxifen for about 6 weeks to see if my dizziness would improve. It did and my periods returned with a vengeance. Went back and he has put me back on it, and if the dizziness repeats he is going to investigate other solutions either to remove my ovaries or to have monthly injections to stop them producing oestrogen, so that I can be given one of the post menopausal drugs. It all seems frightfully involved to me, but I know if I don't take something and the cancer recurrs I will really regret it.
It's hard all these decisions we have to make.
Good luck.
greg73500 Gatorgirl
Posted
If you don't feel comfortable taking a particular drug, perhaps both your instinct and intelligence are sending you a message.
If you are only trying to prevent a recurrence of breast cancer, there are potentially safer and side-effect free alternatives out there. One of them is called Indole-3-Carbinol. Just type "Indole-3-Carbinol Vs. Tamoxifen" in your search engine and enjoy many articles.
Just don't ask for a prescription of I3C because your doctor cannot prescribe a natural product that is available freely. I3C comes from Broccoli and other cruciferous vegetables known to have anti-cancer properties. It just hasn't been tested enough on humans so that it can have an official drug status.
I personally took I3C for 2 years after breast surgery for male breast cancer over 11 years ago. No side effects then. Cancer-free today. I just can't prove that I3C or any of the other supplements I took had anything to do with my remission. But I did refuse all treatments after surgery: No chemo, no radio and no hormone-therapy.
Best of luck to all!
Gatorgirl greg73500
Posted
Thank you, Greg! My original response back to you is being moderated for some reason so for now, I'll just say I appreciate you responding and I like the way you think! I'll check into your suggestion.
Gatorgirl
Posted
greg73500 Gatorgirl
Posted
Certainly GatorGirl. I was taking I3C, Inositol Hexaphosphate with Inositol, EGCG, Turmeric with Bromelain, Selenium, Maitake Mushroom Extract and countless multivitamins.
If I were going through this ordeal over again, I would probably do without the Maitake Mushroom Extract which is likely better indicated to provide immune support after conventional chemotherapy. I would also add St. John's Wort Extract whose anti-cancer reputation is gaining extraordinary ground on a daily basis in scientific journals.
Enjoy reading!
clevno Gatorgirl
Posted
Hi,
I'm going to be 50 next month and have just had a lumpectomy and will be starting radiation therapy and tamoxifen in the next few weeks. My stats are almost exactly the same as yours regarding size, family history and ER+ results. I've read all about the side effects of tamoxifen and am really nervous, but don't see myself deviating from this plan until I know more about how it will affect me. Would be interested to hear how things go for you.
Gatorgirl clevno
Posted
Hi, Clevno! You have to do what your gut tells you! I hope all turns out well with your decision and I respect you for not deviating from what traditional therapy tells you is the thing to do. Please keep me posted on how you're doing as time goes by and I will do the same.