Anyone have a recurrence?

vampeyes

Hello all,

I am looking for women who have opted out of HR to see if anyone has had a recurrence. I am currently taking Tamoxifen, but I am not liking the SE's or the scares that come from the SE's. Blood clots in my lungs that could kill me??? YIKES!!! Is Tamoxifen worth that??? I am scared right now and contemplating a trip to the ER to make sure all is good.

Cheryl

P.S. Some girls and I worked on a Breast Cancer Questionnaire, we have been currious about side effects and reccurence. If you are interested in filling it out, no emails, no names are collected. You can see the results yourself after you take it as well.

dtad

Hi there. I opted out of anti hormone therapy from the start. I'm 3 years NED. I do take supplements, exercise and lost 30 pounds since diagnosis. Good luck to all...

AnaMaria34

Hi. I did have a recurrence. It showed up 8 months after the original diagnosis, so I don't know that Tamoxifen would have stopped it to begin with. Being that I wouldn't have been able to be on Tamoxifen for all that long while I waited for my surgeries.

edwards750

It’s a tough call. I took Arimidex initially until I was DX with borderline osteoporosis and Arimidex attacks the bones so my MO switched me to Tamoxifen. I took it for 4 years. I had joint pain and difficulty concentrating sometimes but other than that nothing unmanageable. I know other women were not as fortunate. When it affects your QOL though maybe it’s time to rethink taking it.

I have a friend whose daughter decided not to take it. She is a few years out from her DX. So far, so good.

Frankly I was afraid not to. To me it was a kind of extra insurance policy to ward off a recurrence. No guarantees of course but after my surgery and radiation I felt like I needed some kind of preventive type tablet.

To each her own though. There are women who opted out and are NED years after their DX and doing fine. It’s a roll of the dice. Your call -just don’t second guess yourself or look back and wonder what if...

Diane

dtad

Edwards...completely agree! We all have to make our own informed decisions and not look back!

bluepearl

If you are afraid of blood clots with tamoxifen (after 5 years is the risker time) then take a NOAC....new oral anticoagulant..ie...blood thinner. I am for irregular heartbeat but at the same time, it protects against tamoxifen clots....lung emboli and deep vein thrombosis.

dlb823

I refused an A/I after trying one for a very short time and having a very severe SE, and went the natural route instead. 6 years out I had a metastatic recurrence. I don't blame my recurrence on not doing an A/I, but the ironic thing was, after I was dx'd w/bone mets, my first line of tx as a different A/I, which turned out to be a very easy drug for me. These are decisions we each have to make for ourselves based on our dx's, personal risk factors, etc., and there's still somewhat of a crapshoot element to it all because no one can tell us with absolute certainty what causes bc, when metastasis begins (could be different for each of us), or which meds will absolutely prevent it or work for us after it happens. I would also say, don't compare yourself to or follow what others do. Their bodies, disease and future risk might be entirely different than yours.

vampeyes

Thanks ladies for your response. Currently I am trying a different brand of Tamoxifen in hopes the SE's will be better. only day 3 so time will tell.

Momine

Vampeyes, statistically, hormone blockers cut your residual recurrence risk (after standard treatment) in half. How great your benefit will be depends on how great your risk is.

Blinkie

vampeyes - After treatment for DCIS I was offered tamoxifen and did not take it. Nine years later another diagnosis. I went through surgery and radiation on the other side (for invasive ductal carcinoma) and was offered anastrozole. I've taken it for two years. I plan on continuing unless it starts causing problems that make my daily life too miserable. So far, it's okay.

I don't regret not taking the tamoxifen. In a previous post Diane (edwards750) said it well: "Your call -just don't second guess yourself or look back and wonder what if..."

GreenEyes81

I refused the first time, 6 months later I had a new lump. One doctor feels that Tomixfan would have stoped it...another doctor feels no one will ever know. With the 2nd dx...I will start taking it in a few months. I told my doctor if it turns me in to a crazy lady, I WILL stop. lol

vampeyes

I appreciate you ladies for chiming in. I went to see a natualpath and he told me if it was his mother he would tell her to take it and he would throw everything at it to help with the SE's. So far the SE's are not bad with this new Tamoxifen, fingers crossed it contiunes this way.

Crosbyfan1987

I am also thinking of saying no to letrozole.

nonomimi5

I agree with the naturalpath - I would do the hormonal therapy and try different brands/meds out there until you find the better med, and throw in whatever you can to help with the SE. I will be starting hormone therapy early July

vampeyes

I am staying on the Tamoxifen, so far the new prescription seems to be ok. I am also on Tumeric, a few other supplements and looking into starting the Keto diet. This scares me, it's a BIG, no HUGE change!

Fiddler

Vampeyes, I would do some research about the keto diet. Someone recommended it to me and I told a friend who said it is dangerous and affects your metabolism. I also have kidney problems so I tend to stay away from supplements and crazy diets...but if I were you, would want to research it anyway.

vampeyes

Thanks Fiddler, been reading about it so much my head hurts. lol

Meow13

When I said no to chemo, my oncologist pushed AI drugs. No permanent sides effects, you probably won't have any side effects. BS, I do have permanent side effects those drugs took a toll on my body. When you are 1st diagnosed you know very little snd tend to do what doctor says because hey you have cancer. I just hope it was helping me, but guess what no way to know.

mittmott

I had a lump, it was lcis, pre cancer they put me on tamaxofin.. I had some runs from it. Came off it. Next year new lump.. Turned out to be nothing, but I got scared .. Took the tamaxofin for a year. Third year third lump, this time stage 1 cancer. Lumpectomy and rads... Onc took me off everything. She said if such a small cancer could still break through even on tamaxofin, then it wasn't working for me. She said the tam... should have stopped it. I went 6 years had a recurrence same breast. Decided on a double mast, couldn't do lump/radiation on same brease again anyway. They still never put me back on anything.stage 1 again... It's been 10.5 years now. I'm ok.

dlb823

Re. a keto diet... what’s actually recommended is a therapeutic keto diet -/ not the high proteinhigh fat version of keto. I suggest reading The Metabolic Approach To Cancer by Dr. Nasha Winters If you’re thinking about incorporating keto.

vampeyes

Thanks Deanna, I will be looking that book up to read as well. Currently I am reading Keto for Cancer, but it's high fat, low protein and low carb. It's such a change from what we were raised to believe! All the eggs they say to eat, holy hannah!

Onejeno

I was initially diagnosed in 2006, had surgery and chemo, was all clear in 2007 and put on Tamoxofin. I found the side effects crazy, bone pain, fatigue, I was a single mom with three young active sons, couldn't do it. Went off meds about 6 months post chemo. Lived just fine, got better, no fatigue, no pain, all good. fast forward to 2016, got my "cure" of 10 years cancer free, felt wonderful. Feb 2017 it returned. 10 years later. Had to redo all the chemo, radiation, surgeries, etc. Refused Tamoxofin this time, wasn't going to deal with it. Went on Aromasin, have had zero side effects and so far so good, no signs of cancer returning (again) I have been on aromasin for almost a year now, will most likely be on it for the next 5 anyway. I found the effects of tam were not worth the "possible" benefits of it.

JoE777

2012Took one year of femara one year of aromasin then stopped because of side effects. This time last year began occasion pain in left hip and back. February this year diagnosed with metastatic breast cancer in sacrum and iliac joint. Back on femara in combo with kisqali and monthly infusion of zometo. Out of the wheelchair and back walking.