I have enjoyed reading all the questions and asnwers regarding Tamoxifen. I was diagonised in Jan 2012 with DCIS and undergone surgery and just completed 25 Radiotherapy treatments. Now I am to see the Oncologist in a months time to decide about the next phase of treatment.
Like most of the other ladies who have posted Q&A's I have my doubts about Tamoxifen. I am pleased that there is this site for all of us who are going through this journey and need answers to questions about these therapies. I do not like the idea of adding more toxic chemicals to my body.
I will keep researching and asking questions until I am convinced that I am getting the treatment that is correct for me. Like most of you I believe that a healthy diet, exercise plan and a positive attitude will get me through it.
I have the added problem of having a mother who had ovarian cancer so I am very wary of these hormone treatments and their side effects.
Keep postivie and enjoy your life to the very best of your ability
Comments
I had DCIS and declined tamoxifen and had a reoccurance within 12 mths. However theres no proof if I took it I wouldnt have had a reoccurance.
If you are worried about side effects (as I was) you could always take it and see if you get them (some ppl do some ppl dont) you can always go off it.
Im going to take it this yr now...Im gonna do everything I can to try to stop this coming back again.
Every story is different and everyones body is different. I think its a very personal choice and your the one who has to live with it. Good luck with your decision.
Here if you have any questions
Thanks for the info
Hi Sillysam83,
Thank you for your thoughts and info on taking Tamoxifen. It is so scary and I feel a bit overwhelmed with all the literature I have been given in the last few months. I guess I can only ask the questions and then if it sounds as if it is the way to go I can try it and see what happens. Yes, like you I really don't wanrt to go back for more Radiotherapy and that was easier than what I have seen and read about he chemo treatments.
As you say I can always stop it if it makes me feel bad. I worry about my family and how they will be if I do nothing and it comes back again. I worry a lot because I have daughters and don't want them to suffer this either.
Guess it makes you realise how much you have to lose if you don't take the drugs. I just hate the thought of putting another drug into my body. Guess at present I just feel a little bit fragile.
Thanks again for your thoughts and good luck with the future.
Keep Dancing Maria
you cant have radiation twice in the same location of your body. if that makes u happier lol...
my friend always says that you should be happy that u have a drug to take. she is hormone negetive and she cant take anything. so she thinks were lucky we get the Option!
Thanks
Hi Sillysam83,
Yes I guess we are lucky when you hear of people who are not able to take these drugs. It doesn't make me any happier about taking it but then the thought of going through all this again isnota happy thought either.
I head back to see the Oncologist in three weeks so I have plenty of time to research and read all the info on this treatment. I am sorry that ou got a second dose of it. Once is more than enough isn't it but twice must have been so upsetting.
Hope all is going well for you.
Keep Dancing Maria
yes I am fighting strong. It sucks once, sucks just as bad the 2nd time. but I also think that this yr Im handling it better and even though i have a different treatment plan I feel the emotions are the same. I know all the treatment plans inside out coz this is my 2nd time around. its quiet good my specialists love me coz they dont have to explain everything... its like pulling off a bandaid give it to me quick doc lol...
I don't think any of us like the poison we have to use to get through this awful disease, but for me I will do whatever it takes to keep it away.
I think the key is to eat well and exercise in addition to the crap they throw at us to keep your body in tip top condition so it can cope with the crap.
What a road! *sigh*
Tamoxifen
Hello Maria,
I have been having Tamoxifen since January-was very scared to start it, but I have found it to be not too bad at all.
I do get hot flushes, but dont know if this is the drug or just that chemo sent me into menopause.
So I would suggest that if the oncologist thinks it will improve your chances of no more cancer it is worth it.
Good Luck,
Julia
Hi Maria
I took tamoxifen for 5 years the first time I had breast cancer when I was 34. I didn't get any bad side effects and had regular periods the whole time. I did however get uterine polyps in 2009 and 2011 which had to be removed. I've been told it was probably from the tamoxifen. Four years after finishing the tamoxifen, I got diagnosed again (brand new tumour with different pathology). I'm now taking femara which is not causing me any problems. I found that I was getting confused reading about everyone else's experiences, so I decided to trust my oncologist and do what she believed would be best for me. At the end of the day, you need to do what you're comfortable with. All the best, xx Jane
tamoxifem/radiation
Hi, I have just had breast surgery and two nodes removed. 30.4.12. Im waiting on radiation teatment,they tell me this may take another few weeks to organise.How long after surgey is safe to wait, im worried it will come back.I also had a another opperation the day i was sent home, they missed a bleeder and it was the worst pain i have felt. I ended up in emergency surgery ,they removed 400ml of blood from my breast.(did anyone else have that happen).
Im also confused over Tamoxifen when to start taking it, im getting mixed directions. Im willing to try it but Radiologist says start after radiation treatment. What do most of you do??
Did you alll have a breast nurse (i have not)?
Thanks (this is all so new and im frightened)
they usually wait for any radiation treatment until approx a month after any surgery.
I would not be worried about it returning within this time frame, this is a normal waiting period. I also suspect it is not an aggressive fast growing cancer (i apologise if im wrong) as you are not having Chemo.
Im sorry about the pain you felt and that u had to go back to emergancy that sucks.
Usually they start tamoxifen after radiation. or towards the end of radiation, depending on how many radiation sessions your having and once again how fast growing your cancer was.
Everyone is suppose to have a breast care nurse. What state are you from ?
I know its a frightening time and everything is new for you, if you have any questions feel free to message me... I may not have all the answers but I may know someone who does, I speak alot to people and am pretty knowlegdable about most things to do with breast cancer. The Doctors dont always tell you everything, or if they do its not all sinking in coz its a little bit of an overload. no question is stupid & I hope you get the answers and support you need from this site.
Merylee
tamoxifem/radiation
Hi,
Thank You for reply.I have stage 1. The oncologist said i dont need chemo. He said radiation and tamoxifen. Im in NSW i went to a private hospital no breast nurse ,she was on holidays. Then another nurse contacted me by the time i got back to her she is on holiday, so not much luck with them. It been a busy time my head is spinning, im also trying to keep working,it keeps my mind of things.
Thanks again
Julie
Hi Blake,
Your treatment post surgery will depend on the pathology of your breast tumour. The things that they look at are size, location, grade, hormone receptors, presence of cancer cells in lymph nodes and so on. Your surgeon should go through the results with you and don't be afraid to ask questions about anything you don't understand. This is your body and you have every right to question everything. Have you seen a medical oncologist? They are the ones who decide if the you need chemotherapy or not. Your radiation oncologist decides on the radiotherapy treatment. John Boyages book "breast cancer, taking control" might be a great resource for you as it explains every step of the journey. It can be bought through this site. Not everyone needs chemo or hormone therapy or radiation after surgery. It is all tailored to suit the individual according to their pathology. We're all here for you, and I hope this little bit of info helps
xxx Dan
Keep Dancing Maria. My mast. was June 21 (11) & had 6xTAC chemo then 28 rads & I saw my onc in March to start Tamoxifen but she was a bit rushed & didn't have time to answer all my questions ! I was a bit miffed to say the least so waited six weeks till I saw my GP & she answered all the questions I had. So I finally started on it 3 weeks ago & so far so good. My hot flushes seem to be under control.....dare I say they may even be slightly less ! I am pinning my hopes on the SE's not building up !!!
Carmel
Tamoxifen article
Hi Maria
This is Kathy from BCNA's Policy Team. I thought I would let you know that in the last issue of The Beacon magazine we included a full page article on tamoxifen and aromatase inhibitors, which are another form of hormone therapy. The article explains the benefits of using these medications and discusses the possible side effects and ways you can manage them. As Sillysam said in her post though, not all women experience side effects.
If you haven't already seen the article, I'd really recommend it. You'll find it on page 2 of Issue 58 - The new you - on the Beacon archive page.
All the best with your decision making.
Kathy
Hey Keep Dancing Maria (love your user name by the way!!)
I have been on Tamoxifen for just over a year now. It is certainly a personal choice and one that only you can make. I have the occasional hot flush but the main side effect for me is stiffness in my hip joints. If I don't walk everyday I really seize up. The eternal optimist in me sees this as a gentle reminder that the Tamoxifen is actually working and that if there are any nastly lil hormone positive cells there it will be attacking them!! Also when my alarm goes off in the morning to get out of bed and go for a walk, my hips remind me that I need to go!! I doubt I would have consistently exercised (especially now the weather is cold) as much as I do (ie; 6 days a week) without my hips demanding that I go!!....I feel great and are much fitter than I have been in years.....so perhaps it's not all bad???
Good luck with your decision
X Liz
Hi Liz
Same as me!! I walked regularly when I took Tamoxifen between 2002 & 2007. Thanks to a new tumour last year, I'm now taking Femara for five years. OMG! If I don't keep active, I seize up like a 90 year old. Not good for a 44 year old. But as you said, it's an awesome reminder to keep exercising. x Jane