Tamoxifin

sloyd66

Hello Ladies,

So October will be my 5 yr Anniversary for my surgery. Praise God! It will be 5 yrs in April of 2019 for Tamoxifin, which I have done well on. Little to no major side effects. But my last oncologist appt she mention five more yrs on tamoxifin is what study is showing. I told her no!!! So I go back for my 6 month f/up and I'm sure she will bring it up again. Has anyone remained on Tamoxifin after your 5 yrs? Now it's suppose to be 4% reoccurring for 5 yrs, what another 1% for 10 yrs?!! I don't know if it's worth it. They preventing breast cancer, but what about cervical or uterine cancer which is one of the possible affects. What do you ladies think about this 10 yr plan?

pupmom

I'm on the 10 year plan ( 2 1/2 more to go). My MO says current research indicates it really cuts recurrence rates, and I completely trust him. However, a friend refused to go beyond 5 years. It's an individual decision. Best wishes.

farmerlucy

I stopped at five years. My oncologist suggested ten, but I decided against it. She was ok with that. Some oncologists are using the BCI test to determine recurrence risk. My onc was not too keen on it and felt like the results might not be reliable.

gb2115

I have been told I will take it for 10. I am happy about this because I have an immediate family member with a stage 4 hormone positive recurrence after 17 years. I will take meds as long as they let me to hopefully prevent that.

TWills

I’ll most likely be on the 10 year plan as well, for me it will reduce my chances of reoccurance more than chemo did, given my age and stats. I’ll keep taking it as long as the thought of getting a reoccurance is worse than the SE’s. I totally understand stopping if the SE’s are too bad or %’s of it helping are on the low end.

sloyd66

Ok thanks. My MO mention it to me and I told her flat out no. She laughed and said ok we will revisit again when you come back which is next month. I did the oncotype and my first oncologist before I moved to this state was please with everything. I feel like it's just more ways to keep getting money from pt. I now work in a cancer institute and what I see I'm not please with. so I'm considering not doing another 5 yrs. I have a friend that was just dx and she has to do 10yrs. I think they are pushing it now on new dx pts.

sloyd66

I'm more concern of other cancer occurring from this drug. We all looking at the Breast but that will be ok and then you have cervical or ovarian from this same drug. I'm so up in the air with it. But as of now I'm not interested in doing 5 more yrs. The brain fog make me feel stupid ,which is one of the side affects.

Lula73

what about switching over to an AI at the 5 year mark? Some pretty significant reductions in recurrence/increase in survival rates making the switch vs staying the course.

sloyd66

Nope not interested. I did good on Tamoxifin, Not switching to get jacked up with side effects with something else. I'm going to trust God and keep it moving. I waited since 2013-2014 to be set free from this ordeal. Will not let Drs keep me feeling paranoid and scared about this disease. I was just wondering where there other women who reached their 5 mark continuing or stopping.

pupmom

Some continue, some stop. It's a crap shoot, but I like to play the odds in my favor.

sloyd66

Pupmom did you stop taking it or continue? But I agree with you.

pupmom

Sloyd66, I'm still on it. Have less than 3 years to go. Only SE I've had, to my knowledge, is hot flashes. I'm now on Effexor and that helps a lot.

sloyd66

@pupmom so you doing the 10 yrs? Yes my side affects was mainly hot flashes nothing major. and after 3 yrs some brain fog.

Artista964

I can't toletate AIs unfortunately so I'm on T for min 10 years. With my profile, some % and #s not listed and being obese, I have no choice. Ses are warm flushes, some joint aches, lots of fatigue, some insomnia, prickly sensations here and there at times. Those come to mind. Weight gain too. I won't take a break. I know if I do I won't go back on. I've been told that if I do 0 hormonal then great chance I'll go stage IV. sucks when you don't really have a choice since the ses suck!

NotVeryBrave

I just recently saw a new MO for a second opinion on continued care. His recommendation - 5 years on some type of endocrine therapy. If doing well at the 5 year mark then another 5 years would be advised. My current MO made a comment when I started this crazy train that by the time I reach 10 years - they'll probably be recommending it for life.

I couldn't tolerate the SE's from the Tamoxifen - mostly due to repetitive, horrible muscle spasms every night. I also felt like I couldn't concentrate or think clearly and was becoming depressed. I can't do AI's because my hormone levels still point towards a perimenopausal state.

I understand that this therapy can potentially reduce my small remaining risk by 50%, but I need to have a life to live. I will probably give it another try since the first time was fairly close to chemo and surgery and I was still in Herceptin. Maybe things will go better. But I'm also due for a repeat sono on a thickened uterine lining and ovarian cyst ...

sloyd66

NotVeryBrave, I totally understand. And I agree after you finish 10 yrs they will be either saying stay on for life or they found out that these drugs caused a medical problem after being on it so long. You damn if you do and damn if you don't.

graceeallen

I am 21 years old and this year was diagnosed with ADH after a needle biopsy and eventually excisional biopsy of 3 lumps. My oncologist recomended Tamoxifen to me but I am worried to take it because of my young age. Should I be worried? Or is it something I could definitely take over getting a Bilateral mastectomy? I have a family history and am currently waiting for genetic test results.

OneYearDown

The post-cancer meds are worse than the actual surgery and/or radiation.  First, I was on Letrozole.  Made me extremely fatigued and couldn't get out of bed in the morning.  For one week I took nothing and felt like my old self.  Then started on Aromasin.  Felt really good.  Energetic and ambitious.  Painted the interior of my 3 bedroom house, shampood carpets, exercised an hour a day, and even lost 30 pounds.  Then got Prolia shot and that seemed to suck the life out of me.  So my oncologist switched me to Tamoxifen.  Prior to cancer meds, I wasn't taking any medications of any kind at my age -- 69 -- and could do everything I used to do at age 35.  On each of the cancer meds, I noticed lots of hair loss and very stiff hands.  Couldn't make a fist with either hand.  When I started the Tamoxifen, my hands got worse, but then both of my wrists became inflamed, around the point where a cufflink would be on a long sleeved blouse.  My primary care physician thought I had Rheumatoid Arthritis because it was in the same place on both wrists.  I also read online that RA can be caused by Tamoxifen.  My oncologist took me off Tamoxifen and the pain subsided a bit.  I had told her from the beginning that I was concerned about all of these side effects, but she assured me that they would go away when I stopped taking it.  Well, here it is three months later, and I am still having weakness and severe pain in both wrists.  I was tested for RA, but the results showed that I didn't have that.  I am concerned that the wrist pain is permanent.  My hair has finally stopped falling out, but hasn't grown back yet.  I have very limited motion in my wrists.  Has anyone else experienced the wrist pain?  I've also tried physical therapy, but that only made it worse.  The pain then traveled up my arm to my elbow.  I would appreciate anyone who has had a similar experience with Tamoxifen to share what they have done to overcome this.  Also, I no longer get the Prolia shot since I am not taking any hormone therapy cancer med now.  My oncologist said I shouldn't be concerned about not taking anything at all.  I had Stage II breast cancer surgery (invasive ductal carcinoma) in February 2017.  I have always been very healthy with no aches, pains, or illnesses so I am having trouble accepting these physical deficiencies at this point in time.  I figured I'd probably get arthritis later in life, but not due to a medication, but old age.  Not quite there yet.  Thanks for any input you can give me.