Tamoxifen confusion

Janet A

Hi,

I really need some advise on whether to take tamoxifen.  I have been advised by my surgeon and oncologist to take this to assist in the possibility of reoccurrence.  My receptor to this drug is 10 % initially they weren't concerned about me taking it. Now they are insisting, any resistance brings reminders from them of it may come back, I am wondering why the sudden turnaround.  When i finished treatment my team said after doing chemo and radiotherapy that gave me 96% success, now they say taking tamoxifen will give me 20% success to ensure it not returning, do the math it doesn't add up. Are they just pushing drugs or do they just want to confuse me, does this ever finish? 

The side effects i have read scare me. What to do. Janet

rivergum

Hi Janet

Perfectly understandable to be concerned but if you have your health professionals encouraging you to start Tamoxifen I would do so. Their job is to look at your pathology results and go with the treatment guidelines that are recommended to them based on research. Right now, your pathology results suggest to your surgeon and oncologist that tamoxifen will be a good choice for you.

When you look at that 10% number, it is not telling you the whole story. When you try and weigh up the advantages and disadvantages we overweight short term advantages (not taking meds) over fuzzy but important long term advantages (better health/life outcomes). This is why I go with professional advice over trying to "game" the system.

I have a friend who was diagnosed with cancer which was low hormone sensitive but she is on Tamoxifen, caring for a family, setting up a business and running a cancer support group while getting back into running. 

So many people are on Tamoxifen and find that the side effects are not noticeable especially if they keep active. I'm one.

Keep talking to your breast care nurse and hang out with breast cancer support groups where you can share with fellow survivors IRL. You'll be surprised at the range of stories, good and bad, but on the whole, pretty good.

Love and hugs

Janet A

Thank you for your advice. I guess I'm still feeling the effects of treatment and don't want to feel worse than now! Am active in yoga, swimming walking and with dragons abreast.

Maybe give it time before starting it. I don't want to lose anymore sexuality than is necessary either nor quality if it makes me feel bad! Also its scary that they are so serious about this makes me wonder if they know something i dont!

Sarah 51

Hi 

I have been taking Tamoxifen for 4 years now. Yes I have suffered with side effects but all very manageable.  Mainly hot flushes and sweating . Vaginal dryness has been solved with oestrogen cream which is quite safe as it is topical my Oncologist prescribed it  I think my percentage was 40% so no option but take it and I am 5 years post surgery chemo radiation and do have to take Tamoxifen for 10 years from recent research. Small price fir staying alive! I also do  Dragon boating love it are you coming to Florence in 2018? Good luck with yoyr decision.

Sarah x

TonyaM

Hi Janet,I personally hate statistics. I never seem to fit the bill.I was told I'd only have an 8% chance of recurrence- bingo! lucky me.Doctors are always going to conferences and updating their info so sometimes they make changes to what they have said previously. It's hard when the goal posts get moved on you -happens a lot with the bc ride. Maybe you need to talk to your onco again to get clarification and get him to write the stats down for you.What you are saying doesn't add up- you are right.I took Tamoxifen for 4 years and yes,I had some side effects.But the worry is more of what it can do that you DON'T know about.You could get changes to your endometrium,blood changes and a fatty liver.Yes,it's an effective drug against bc but we need to be carefully monitored whilst on it.Ask more questions from your team until you feel confident to take this drug.Tonya xx

Janet A

Hi Sarah

So you can use oestrogen cream good! I'm going to see a new breast care nurse who seems more switched on and very knowledgeable. 

Janet xx

Robyn W

Hello Janet:) I think that we should always be guided by our doctors.They look at our pathology,but they also have access to the very latest facts and figures from research etc.that we don't have knowledge of.I have been taking Tamoxifen for 18 months now.In the beginning I had terrible hot flushes,but they are a distant memory now.As Tonya said,there are different side effects ,many of them very uncommon,and I feel that when you take Tamoxifen it is VERY important to keep up with regular exercise and good nutrition.Also maintain your weight at a healthy level if possible.For me it is like taking a Panadol every morning!! I have never felt so healthy,and there is no way that I would stop taking it,unless advised by my doctor.All the best with your decision.Cheers Robynxox

Janet A

Thanks Robyn, wise advice on exercise and good nutrition.  I have managed to keep my weight steady throughout treatment with yoga, walking and swimming.  Radiation has really knocked me about, I sleep well but wake tired, if I do too much I need to rest, now 7wks out from treatment when does it start feeling better! I eat very well too. That is why I am reluctant to take more pills that could possibly make me feel worse I think! I'm achy all over and every injury from the past is coming back to haunt me! I am seeing my new breast care nurse this next week to discuss further she is so informative and thorough.  I just want to feel like i can get through my day without a tiredness that is overwhelming even for me who is fit, healthy happy! 

After reading these posts I will give it a try I guess, worried about hot flushes that are severe now! I was dragon boating during and after chemo, after radio I just don't feel the same as its decimated my energy levels! 

This site is so good by the way, Janet xx

Janet A

Hi Sarah

I would love to go to Florence 2018, imagine paddling down the river there hey! I love Florence. Let's see how I go, not sure if the Mackay group would do that or do you join another for that?

mcoplick@bigpond.net.au

Hi,

I was diagnosed in Feb, had lumpectomy, radiation, and now on my 2nd week of tamoxifen, every one is different, but I feel very tired every afternoon, and end up sleeping for a good hour, plus the headaches, I do wonder what else it is doing to my body. The radiation also made me tired, I have always been fit, and eat healthy, but that hasn't made any difference, only now I am just starting to get my strength back, 3 weeks ago I couldnt open a can of beans?  it has really knocked me about. Michele

Janet A

I'm with you on that one Michele, I sleep every afternoon now and I haven't even started taking tamoxifen!

Radiation has knocked me around as well and I have always been fit and healthy. I started swimming and walking on my treadmill now I have done something to my back! I just hate it when I start feeling unfit. My doctor is suggesting I slowdown but I don't want to. Going for a massage tomorrow.

I'm seeing my breast care nurse today to discuss. Janet

Janet A

I have been reading up on tamoxifen is it true you have to have protected sex? Geez, imagine the thinning of the vaginal wall and a condom, wouldn't that be a treat not!