To continue or not to continue, that is the question!

weety · January 2016

I just finished my 5 years of femara, and onc seemed to be okay about stopping it since my DEXA scan showed my bones were being affected (anywhere from a 2-5% decrease) even though I had taken zometa back in 2010. Boy, did I do a happy dance the day I got to quit that crap! I'm feeling so much better!

Now yesterday, just 3 months after stopping the femara, he has decided that it might be smarter for me to stay on it for another couple of years! What????????? He said I was in the gray area, but he definitely implied that if it was him or someone he knew, he would continue it, mostly because of my age (45). He has left the ultimate decision up to me.

Here is my situation: Only weakly ER positive (10 percent); Hysterectomy/Ooph in 2010

Femara affected me almost immediately, although I don't know how much was the femara and how much was the instant menopause from the hyster/ooph. Within 2-3 months, my cholesterol shot up 50 points; liver numbers ALT went up from 20-30; weight gain of 10 pounds (I know not much, but I was only 105 pounds before so that's a 10 percent increase. Plus I have been consistently 105 since my 20's, never fluctuating more than a pound or two.) Thryoid TSH shot up from under one to over two points (still within normal range). All of these numbers stayed pretty consistent to these through out the 5 years of femara, never going back down to my original numbers. I put up with the Joint stiffness and pain, as well as the terrible hot flashes and painful, dry sex, because I knew I had to!

Now I don't know what to do! I don't want to go back on Femara, but I'm trying to figure out what I SHOULD do! I know the studies show 10 years of tamoxifen is better than 5, but what about femara, especially since my cancer was only weakly ER positive???

Help!!!!

MsPharoah · January 2016

hi . If I were you, I would get a second opinion. I am 3 years out and I hope by the time I get to 5 years, there will more guidance for us. But if not, regardless of my current onc's recommendation, I will get a second opinion.

Good luck, MsP

ruthbru · January 2016

You are only weakly positive, stage I, are having lots of trouble with it......and studies have not yet proven it to be valuable after 5 years for anyone. I certainly am not going to tell anyone what to do, but I will tell you that I was 2A, weakly ER positive (25%), PR negative (so how much it was helping me in the first place is debatable) & stopped Arimidex after 5 years with my oncologists approval. If I had been highly estrogen & progesterone positive and/or been Stage III, then it might have been worth the other risks to stay on but in my case I didn't think the risk/benefit ratio was worth it. By all means though, get a second opinion if it will give you more clarity. Drives a person crazy,doesn't it!!!!!

SpecialK · January 2016

I am coming up on 5 years of AIs and am having this discussion with my MO. He did the Biotheranostics Breast Cancer Index test to determine what my future recurrence risk is before deciding whether to recommend continuing on Femara. I had thought that he was ordering this test in about six months but was surprised to learn it was ordered along with some other routine blood work at my December regularly scheduled appointment. I panicked because my insurance requires that all diagnostic testing have a preauthorization and referral. I called the MO first, they said to contact Biotheranostics. I spoke with a very helpful person in billing who indicated that they will handle all of the appeals, if there are any, with my insurance if they do deny the test. Medicare does cover this test, so many other types of insurance usually follow suit. If Biotheranostics can't recover payment from my insurance company, they will not bill me, but rather write off the testing costs, but will still provide the results to my MO. Here is a link to the company and their test. It was originally designed for node negative patients, like Oncotype Dx, but is now being used for those with few positive nodes as well. I have not yet spoken to my MO to find out the results, but I am pretty curious - Biotheranostics said they have sent him the results.

http://www.biotheranostics.com/patients/bci/

ruthbru · January 2016

Gosh, that is interesting SpecialK. Let us know what you find out!

Something that struck me from reading your link is that they stated that only 3-5% of patients are likely to benefit from staying on it longer than 5 years. That is not a very high number & if it holds up, that means 95% of ladies who stay on it are not getting any benefit (plus dealing with what may be serious side effects).

coraleliz · January 2016

special K- Good to hear that some doctors are using the BCI for node positives. I doubt my MO will agree to it for me. I had to ask 3 times for the oncotype test. My plan is to go off Tamoxifen at the 5year mark. If I find myself riddled with worry & unable to sleep, then I'll pursue it. Just want to put breast cancer in the backseat or maybe kick it out of the car. 3-5% is an acceptable risk for me.

It looks like the way things are going, BC patients will be left on these drugs as long as they can tolerate them. In 5 more years, they will tell us that some women will benefit for being on them for 15yrs. The good thing(which is actually a bad thing) is that we will have a better picture of the "toxicities" associated long(er) term use.

lisa-e · January 2016

I took tamoxifen for two years, then was on AIs for three. I was the queen of side effects (trigger thumb, my pre-existing arthritis got much worse while I was taking them, I developed cataracts shortly after starting arimidex, when I had no signs of them before hand, mild depression, some loss of bone density. I wanted to stop while before I developed osteopenia and I was tired of dealing with sore joints. My oncologist had no problem with my stopping AIs, saying that quality of life is important. I feel much better since I stopped taking AIs.

aussieched · January 2016

I am very interested in this post also. I have taken Femara for almost 8.5 years but have had 3 breaks in the last 3 or so years due to side affects of the drug, so have probably taken it now for a total of 8 years. I have been under the care of 2 specialists during my 8.5 years of treatment. One oncologist is saying he doesn't think my bone density is to the critical stage yet, so thought it would be OK for me to continue with Femara longer, but left it up to me to make the final decision.

My other oncologist panicked 15 months ago with my bone density tests came back with substantial loss, and thought it was best for me to get off Femara and to commence Tamoxifen. At this stage I decided to continue on with Femara for a bit longer as I am worried about recurrence, and due to positive node and not having chemo, I am trying to take Femara a bit longer before I start Tamoxifen.

I have read that Femara is slightly better than Tamoxifen to ward of recurrence, so I am hanging on just a little bit longer. I am finding the pain in my hips when I walk really difficult but am pressing on. I am only hoping that once I finish Femara the hip pain will go away, but I haven't found anyone who can confirm that will happen.

I was 80% ER and 80% PR and had a micromet so that would be the reason my doctors want me to be on drugs for at least 10 years.

Ched

Janetanned · January 2016

I recently saw my BS who is very involved in BC research. We discussed my progress (4yrs out) and my SEs from AIs. He believes that it will be recommended for me to stay on AIs for 10 years. In the fall, my MO said she wasn't certain there was enough research yet to back up the 10 year recommendation. However, she is not as involved in the research world as my BS, so I tend to think my BS knows a little bit more about ongoing research than my MO.

I was so hoping to be done with this! I don't have severe SEs, but the minor ones are enough to look forward to NOT having them.

marijen · January 2016

If I have to stay on Femara for ten years I will be bald at some point. I'm hoping they will come up with something better soon. Going off it for six weeks is good, it improves it's efficacy

Tresjoli2 · January 2016

My MO has already told ten years, and at least two years of ovarian supression. But I am 100% ER and 100% PR positive. I have a very very hormonal sensitive cancer.

whitedove · January 2016

Hi all: Just wondering if someone can explain what is involved in getting a bone density test. I am also wondering if there is any proof that continuing Tamoxifen has negative effects.

I am reading about all the side effects of Tamoxifen and am worrying about bone density loss. I am on year SIX on Tamoxifen and am in my late 40s. My onc. wants me to take it for 10 years + maybe longer???

HAD DCIS, double mastecomy with nipple sparing/immediate reconstruction. No chemo No rad.

Thanks.

GG27 · January 2016

whitedove, A bone density test is a very quick, non invasive test on your hip. Tamoxifen actually helps your bone density, it's the AI's that MO's worry about bone loss. Good luck, GG

ChiSandy · January 2016

Tamoxifen’s risks are for uterine cancer (retroperitoneal if you no longer have a uterus), cataracts (repairable via surgery), and blood clots which can cause heart attacks & strokes. It’s also contraindicated if you must remain on an antidepressant other than Effexor, Celexa, Desyrel or a tricyclic. The cardiovascular risk is the most serious one in older women.

rozem · January 2016

hi Weety

good to see you...I remember your posts since we are both her2

I think our young age is a big factor - although you have had an ooph so you have removed the source of the biggest source of estrogen, but I know that it is produced in other areas such as adrenal glands. I don't think you can be a little er+, you are or you aren't you just had less of those cells in your tumor biology. Unfortunately there aren't any studies that I know of that compare % of positivity to effectiveness of hormone therapy.

you could switch to Tamox , - Femara has a few more efficacy points but at least your bone density wont suffer and you may have less joint pain etc (I did)

its a tough decision that I will be making in about a year, I already am giving up a few points by staying on tam (couldn't tolerate the AI).

this is not black and white, lots of interpretation by MOs on this one!

BrooksideVT · January 2016

Sandy, could you post a bit more about the retroperitoneal risk from tamoxifen? I had a hysterectomy a year or so before diagnosis, just switched from arimidex to tamoxifen a few months ago. Do I now have an increased risk in the seemingly large and nonspecific area outside the missing organ?

To continue or not to continue, that is the question!

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