Does anyone say no to Tamoxifen

Hi Eliz, sorry, I just saw your post now.  How are you feeling? I hadn't thought about tam for a while.  Did you make a decision about the tam?  My onc said that the tam helps with the herceptin or vice versa.  I told him I wanted to do the DIM and he said I could do both.  Ok, thanks for granting me the wish.  I just got a letter in the mail stating that tam is covered 100% by my company too.  Uggggh.  I know, on one hand you have to think - this makes us feel like crap so how could it be good and on another, its not like chemo was a walk in the park either.  So messed up.  Im so sick of searching for clinical trials on natural ingredients and coming up empty.  It really gets me pist. I get as far as invitro studies except the DIM I did see a clinical study posted about.  Also, interestingly enough, I just today found an article about pomegrante seed oil which is a natural aromatase inhibitor.  Not a clinical trial but a medical paper.  Here they are..

http://www.ncbi.nlm.nih.gov/pubmed/12002340 

 http://ict.sagepub.com/cgi/content/abstract/8/3/242 

http://www.liebertonline.com/doi/abs/10.1089/109662004322984644?cookieSet=1&journalCode=jmf

I went on linked in to look for the lead research scientist and couldn't find him but...I found out more support info when I typed in answers for tamoxifen.  His company profile came up (just not his name). http://rimonest.com/about_punisyn.html  so far nothing done in human clinical studies but they have quite the backing from lots of universities and research institutions (which makes me feel like these studies are less biased).  Anyway, thought I would share some info on. 

Kawee-have you looked into the connection between iodine deficiency and lupus?

http://www.iodine4health.com/disease/lupus.htm

Michele-I had the same fears about taking arimidex. In fact, it freaked me out more than being told I had bc. I struggled with the decision for months, but kept reading all I could find, and finally came to the conclusion that blocking all my estrogens was not the answer when it was the inbalance of one kind of estrogen that was linked to bc. I found a hormone doctor who is helping me balance my hormones as well as taking iodine which  I believe is the most preventative thing I can do because I have noticed a huge difference in my breast tissue from it. As Patty says, check our our natural girls thread. We do not tell people what to do over there, but we offer alternative information for those who are interested.

Sandra you might want to also post your question in the DCIS section.  I assume a lot of the women there have faced the same decision.

Sandra, I had DCIS with 1mm invasive.  Even before the second surgery, before they discovered the invasive (at stage 0) they said I needed to take tamoxifen.  

Sandra, I know 2 people with DCIS, 1 was offered tamoxifen and declined it, the other was never even offered it as an option.  5 years later, they are both fine. 

I would ask the Onc, what is the risk percentage of reocurrence with, as well as without taking the tamoxifen.  And don't accept the answer that it reduces risk by 50%.  You need to know what your risk is to start out with.  That is the risk that gets reduced down to 50%.  For example, if your risk is 10% that DCIS comes back, and tamox reduces that by 50%. your risk becomes 5% of having a reoccurrence.  There is a whole school of thought that DCIS may in many cases never have become invasive and may be getting way overtreated. 

I declined to take Tamoxifen 4 years ago. My understanding is: Tamoxifen would have given me a 1% chance of avoiding a recurrence over a period of 5 years (I understand that this 1%  "risk reduction" in absolute statistics, versus relative statistics, is what most women can expect). I  personally decided it was not worth risking the different side effects (one of which would be uterine cancer).

DG

Those are not your only options. Please do check out the Natural Girls thread

So you are saying that as stage 0 grade 2 your onogoligist did not put you on Tax. or AI? I'm at the same levels and don't think I should go on these drugs either. How about radiation, have you gone through that?

Marie Kelly, Thanks for sharing.

Yes, I have had my lumpectomy last week. Through research have pretty much decided to say no to to the Tamixifen or Arimidex. Still deciding on the Radiation however. Just doesn't seem necessary for stage 0 Grade 2.

Anyone else who skipped the radiation with these "specs"? 

I had radiation so I don't have strong feelings against it. But I thought it fair to say that my radiation oncologist, who is very well regarded in the rads community, said that the studies that found the recurrence were done without regard to the margins and that in some cases there may not have been clean margins. He felt the studies were flawed.  I have not read the studies so I cannot comment further just to repeat what he said.

Mandy

Sandra - My two cents, if you're interested: In the scheme of things, IF you find the right radiologist,  radiation has a very tiny downside and a big upside, so I'd say go for it. Now, when I say "right radiologist", i do  mean shop around. 3 factors will help in minimimizing the downside (1) ink vs. permanent tattoos - although tiny, I did not want a permanent reminders and my rads team agreed to use sharpies instead, (2) I found a rad onc who doesn't feel that burning the skin is necessary - some do, some dont. My position was "Hey, I didn't have skin cancer" and she agreed so I used Apple Cider Vinegar soaks which actually rid the skin of radiation as well as reduced burning  (while still permitting it to do it's thing internally) and lots of moisturizers (I'll IM you the research on Apple Cider Vinegar if you'd like. And (3) uses blocks to minimize radiation to internal organs. You need to ask exactly how much lung/ heart/ throat/ whatever will be hit and if there are ways to prevent. Whatever you decide, I'm sure it will be the right decision for you. Good luck and please keep us posted. 

Well, local recurrences can show up as skin mets which is why they radiate the skin as well.  Just something you should consider.

Good point. My rads nurse raised that as well and didn't want me to use Apple Cider Vinegar during the boosts for just that reason. In my case the radonc over ruled and said it was fine which is why asking our docs is always the best way to go.

Hi everyone,

I just had surgery to remove DCIS (right breast) which was noninvasive - wide clear margins - 2 nodes removed that were negative. Left breast Papilloma (benign) removed. It has been 2 weeks since my surgery and I have an appt with the radiologist on Dec 2nd. I have chosen not to take Tamoxifen. THANK YOU SO MUCH FOR THIS THREAD. THANK YOU SOOOOO MUCH! I wanted to know if there were women out there that had not taken the drug and what was their success rate. I started reading from page 16 and I am up to page 12 now on this thread and I will read every last one to the end. I want to know what is the NATURAL GIRLS thread and where to find it. I really want to read that as well. Thank you ladies so much, I am basically in tears because I DO NOT WANT to take this drug and doctors make you think you have to. Please excuse me if I am not using the right lingo. I am trying to become more educated with this. I was always one of the women that did not want to hear, see anything about Breast Cancer because I was afraid. Now I am forced to deal with it and I want to make sure that I am making the correct decisions for my body. I really need to hear from women that opted not to take it and are doing just fine without it. Thanks again so much - I hope you great ladies can help me.  

c3353

 I was on Tamoxifen for about 1 year (was supposed to be on it 5). I hated all the side effects from it and think the Tamoxifen along with the long term effects of chemo really screwed up my body and I am still trying to heal from it all.

 To make a long story short, my oncologist kept pressuring me to go back on it and one time I left his office in tears as he had me in the grave if I did not get back on it. Well, this last visit he did not even attempt to go there and  basically told me this time that I could pretty much consider myself cured. He said this because most recurrences happen within the first 2 years after surgery, chemo etc, and I had no signs of cancer and was doing great.

 I find being off Tamoxifen though is a lot more work and I am happy to be doing the extra right work to keep the BC or C from coming back. I am on a lot of supplements and am very cautious about consuming sugar and alcohol, the two cancer fuels.

 Good Luck! Our bodies were designed to heal themselves and they can!

Hey Lisa, I am in the same boat I cannot take Tamox.My onco gave me the choice of doing the "Chemo." He had greater fear of "overtreating." He is steadfast in his opinion that the "Chemo" (vs. my not being able to takeTamox) will be "minimal" to my recovery (like 1% legup in the early years.) Still it is what it is and my fear of having a rogue breast cancer cell showing up in my lungs or bones is tremendous. He tells me the breast cancer that I have (even at Stage I with lymph nodes clear) will return in the lungs or bone and treatment outcome will be very poor for me. I am going for the Chemo, the radiation and lotsof prayers.