Tag Archives: tamoxifen

Confessions of a non-compliant patient

4 Sep

Ever notice that “compliant” and “complaint” are almost the same. Interesting. I am no longer compliant because I had too many complaints.

I stopped taking Tamoxifen a month and a half ago. Done. At least for now.

Tamoxifen Mylan 20mg 100 tbl

Tamoxifen Mylan 20mg 100 tbl (Photo credit: Haukeland universitetssjukehus)

And for the record, the lesion on my left breast that is currently being re-tested, appeared at the end of May while I was still diligently taking Tamoxifen. It was biopsied then and I was told that the results were benign. What I didn’t know until I saw my oncologist two weeks ago, is that unless the pathologist ran breast cancer markers on the biopsy, then we don’t really know if it is benign. In other words, the doc only ran it for skin cancer – apparently skin cancer and breast cancer have different signs/markers etc. I did not know this.

Back in the day – in the active treatment, chemo, radiation, Herceptin and surgery days – I reviewed every piece of paperwork, especially pathology reports and MRI and CT reports. I questioned every word and made sure I knew what it all meant. But, back in June when my doc told me that the biopsy came back benign, I didn’t even ask for a copy of the pathology report. I just went along my merry way, relieved and did not question a thing.

Fast forward to August19th and I am in my oncologist’s office for my six month check up (I graduated from every three month check ups, to every six month check ups this past year) and she is very concerned about this small “lesion” on my left breast. incidentally, it really is small and the word “lesion” makes it sound all serious – let’s hope it isn’t.

“I don’t like how that looks” . . . “let’s get the pathology report and then we’ll go from there” . . . blah, blah and

BLAH.

So the next day, my oncologist received the pathology report and the “go from there” was: “we need to order the block and run it for breast cancer markers” blah, blah, blah and

BLAH.

I now have seen the pathology report from June. It is not skin cancer. But, according to my oncologist, it could be breast cancer. WTF?!!!

So, the wait began. And, because I have always taken charge of my health care, I have an oncologist who is out of my regular network because that is who I wanted and I fought to have her. What that means right now is that the in network biopsy (the “block” which is simply the little bit of tissue they took for the biopsy back in June) has to be ordered and delivered to my out of network oncologist up at UCLA. UCLA’s pathologist then will run the ER, PR testing and a fish stain for HER2. That all takes time.

Today it has been two weeks of waiting. This is the post-cancer landscape that those of us lucky enough to reach N.E.D. (No Evidence of Disease) often experience. If it isn’t an actual biopsy or scan, then it is an ache or pain that now is interpreted as potentially a recurrence.

Hopefully it will be nothing, just a little red bump. Just a little red bump – that, because I still have some vanity left after all of the the cutting and scars – I will have removed by my dermatologist. That would be awesome!

In the meantime, I am living my life. And, quite frankly, having some of the best days of my life. Truly special days. Days that I have had completely and utterly on purpose. I don’t ever want to lose that aspect of things. This will be the subject of a separate post – with photos to prove it.

So back to my confession and being a non-compliant patient . . .

Like I said, I stopped Tamoxifen. I know, I have heard it all – I am throwing away this “50% reduction” in my risk of having a recurrence. Well, first of all, it isn’t actually a 50% reduction . . . not unless you are post menopausal, which I am not. It is more like a 40% reduction. And, I know that sounds great and all, but then there are the other risks  . . . like blood clots, aneurysms . . . oh, and let’s not forget: CANCER (uterine cancer that is). Tamoxifen increases the risk of uterine cancer. I have already had to have surgery to remove pre-cancerous growth there, which I am told that since I have had these growths that I am now at an even higher risk of uterine cancer. When I raised this with my primary care doctor (about my being concerned about the increased risk of uterine cancer) he said that it would be far better to have uterine cancer than to have breast cancer recur. So, I stayed on the Tamoxifen and for some time I coped with the side effects. Oh yes, let’s talk about the side effects:

*Disclaimer: these are the side effects that I have experienced. I know some women who do not experience these side effects. And, I did not experience all of these side effects right away, some began a year into Tamoxifen.

PAIN. I woke up every day in pain, so much so that it took a couple of hours to work my way up to my day. Those around me didn’t necessarily know that I was in pain. But, the pain manifested itself in many more ways than just my feeling like shit. For example, I was habitually late (if it was a morning thing). Hate that.  But, surely, being late and seemingly unreliable, is better than risking being a non-compliant, Tamoxifen-taking patient.

FEAR. The pain also made me fearful that I was in fact having a recurrence. But, surely that constant fear is better than risking being a non-compliant, Tamoxifen-taking patient.

Often I could not exercise because of the pain. But clearly not being able to exercise regularly (and missing out on the health benefits – including reducing the risk of a cancer recurrence by exercise) is better than risking being a non-compliant, Tamoxifen-taking patient.

I gained weight. But clearly gaining weight (and thereby increasing my risk of a cancer recurrence) is better than risking being a non-compliant, Tamoxifen-taking patient.

I have lost bone density. But, clearly weakened bones is better than risking being a non-compliant, Tamoxifen-taking patient.

I woke in the middle of the night (on multiple occasions) with such excruciating pain that I could do nothing but scream, I could not stand up, I could not walk. But surely, occasional, pain disrupting my sleep is better than risking being a non-compliant, Tamoxifen-taking patient.

After two years of Tamoxifen I developed uterine cysts (which caused daily pain in my lower abdomen) and “the largest polyp” my gynecologist “has ever seen” and as a result, had to undergo surgery to remove the cysts and polyps. And of course there was the pathology to be done on those cysts (which fortunately all came back fine). So surely having surgery and losing over a week to recovery is better than risking being a non-compliant, Tamoxifen-taking patient.

There is a longer list that I won’t bore you or myself with . . . suffice to say that I have made this decision informed both from a research standpoint and a quality of life standpoint.

If the biopsy results come back and are not good. I will know that Tamoxifen did not prevent a recurrence for me. And, if the biopsy results are good news then I will be grateful (incredibly so) and I will still stay off of Tamoxifen, at least for now.

I have friends that are triple negative and wish that they were ER+ and thus candidates for Tamoxifen. And I feel tremendously for them. I would feel the same way if I were triple negative. But, for me, right now quality of life is weighing in favor of the side effects of Tamoxifen. Incidentally, I did not experience all of these side effects the first year being on Tamoxifen. The most offensive and debilitating side effects came after being on it a year. I did always have pain though, it just only got worse.

A note to oncologists: Here’s a heads up for oncologists out there. I am not alone in this choice to abandon Tamoxifen. Some of your patients are lying to you. Not just a few are lying to you, but many. They are lying to you because you tell us that Tamoxifen (or lupron and aromatase inhibitors, or removing our ovaries and aromatase inhibitors) are the ONLY way. Don’t get me wrong, I get it. I am not stupid. The research you have in front of you tells you that we must take it. And you care about us. But, there is a disconnect with many breast cancer patients and their doctors on this front. I know many women who have taken it religiously as told. But, I also know many who have refused to take it but won’t tell their oncologists the truth. This is a problem. There’s a whole lot of non-compliance going on and your patients are not always telling you the truth when it comes to Tamoxifen or AIs.

I want to add one more thing and that is about my Mom, my incredible Mom, who always knows exactly what to say. One of the reasons I took Tamoxifen in the first place and struggled through those first several months of constant dizziness and nausea was because I felt I owed it to my family to do the right thing. Suffer through it and be safer, reduce your risk. Still, it felt completely physically wrong for me to be taking it. But how could I risk being a non-compliant patient when I have people depending upon me. My Mom has seen my struggles first hand. I asked her how she felt about my stopping the Tamoxifen (honestly if she wanted me to go back on it, I probably would do it for her). This was her response: “I want you to make whatever decision you feel is best for you. That is the most important thing. I do not want to influence your decision because it must be yours and yours alone to make”

That’s my Mom. She is awesome.

Hoping for good results.

I appreciate your continued prayers, positive vibes and good juju.

Much love and peace,

Lisa

 

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Santa Monica . . .

19 Dec

Hello all,

I want to thank everyone for their support, kind words, messages, prayers, positive vibes and love.

I saw my oncologist today. It was a quick appointment. I had hoped that I could see the nurse so that I would get more of a physical exam done (the nurse does a more extensive physical exam and I was hoping she would do that and give me some reason to allay my fears a bit, as in, well, I don’t feel anything suspicious). But, I knew that my oncologist would order a breast MRI. It is the only way to tell if there is something going on there. So, my appointment pretty much went as expected.

Menopause Three

Seriously? "Menopause, the Musical"??? (Image by David Jackmanson via Flickr)

I was also chastised for not petitioning my insurance company’s denial of the genetic testing (to determine if I have the Braca gene or not). I will get on that tomorrow. It is so stupid that my insurance company denied it when both my oncologist and the genetic counselor requested it. There is no basis really for my insurance company to deny it. But, they did. Anyway, it is nothing new, battling with insurance companies. But, it is something I decided to take a break from doing (since at one time it was pretty much a full time job – back during chemo – it was a constant battle to get meds approved – the same meds each chemo round would get denied . . . as if I was no longer in need of the medication . . . very odd). I would love to some day make a change in that, I don’t know how someone who is elderly or sicker than I was copes with all of that during treatment. But, I digress.

I need to get off my butt and file the petition and make my insurance company do what they are getting paid handsomely to do.

The other concern my oncologist has is that I am still ovulating (or at least that is what she thinks given I still have pretty regular menstrual cycles despite all the chemo, despite taking Tamoxifen) . . . I know, aren’t you all thrilled to hear that?!! TMI, right?!!

The point is that I am still pre-menopausal, still producing estrogen (the hormone that the cancer I had loves) so that is a concern. Tamoxifen often causes menstrual cycles to stop (as does chemotherapy). When a woman goes into menopause from chemotherapy it is called “chemical menopause”. Some women never come out of that chemical menopause. I had that during chemo. But, as soon as I finished chemo, my ovaries kicked right back in. At the time I thought that was a good thing, thought it was a sign of my body being resilient. And now that I have been on Tamoxifen, but, am still having menstrual cycles well, it is not something my oncologist is very happy about I guess.

I am not really certain about that actually. Except that she keeps asking me “are your ovaries still kicking?” (which kind of bothers me a little bit, sort of, okay, maybe I am being ultra sensitive . . . I LOVE my oncologist, she is so great and I owe her so much, I really believe that I owe her my life. BUT, this whole, why-aren’t-I-in-menopause-yet thing is really getting kind of annoying.

Her concern is well placed . . . the more estrogen the worse my chances of a recurrence since the cancer I had was fueled by estrogen (and by HER2 gene expression – if I am even saying that right, don’t know that I am, so don’t hold me to it, I am too tired to look it up). Premenopausal women with estrogen responsive breast cancers do not get as much of a benefit from Tamoxifen (Tamoxifen is more successful in post-menopausal women as are the alternatives – aromatase inhibitors). Still, Tamoxifen is shown to help reduce the risk of recurrence in pre-menopausal women too, it just isn’t quite as effective.

Anyway, I am rambling. I’m thinking I should wrap this up.

Okay, so the upshot of my appointment was exactly what I expected: get an MRI. Hopefully it will show that everything is fine. The pain I am having can be due to surgeries and the redness can be from the radiation I had to that area (skin changes can occur for many years to the areas that have been radiated). Anyway, that is the latest.

It is unlikely that I will be able to get the MRI before the end of the year . . . which is just fine with me.

So, now it is back to planning Christmas dinner . . . going to repeat the Tapas Christmas dinner I did last year (although different dishes).

No turkey here . . . unless I decide to go for turkey empanadas . . .

I am so over cooking Turkeys, Hams or Crown Roasts . . . don’t think I will ever do that again. We had so much fun last year doing the Tapas dinner that we decided it should be a new Christmas family tradition. So there we are. I plan on thoroughly enjoying the holiday and putting all of this cancer crap out of my mind.

This morning I visited a friend of mine who had breast cancer surgery today. This is her second time through breast cancer and it will hopefully be her last. She is strong and beautiful and courageous and I am grateful to know her.

I don't know anyone who can rock a surgical hat like this woman 🙂

I will go see her tomorrow (her surgery was today). I am hoping and praying that the pathology report is good. Some women have what is called a “complete response” to Herceptin and chemo treatments prior to their surgery (meaning that when they get to surgery there is no more active cancer left). I am hoping and praying that she gets good news.

Please keep me and my friends (who are still waiting on results) and my friend who is currently having surgery for breast cancer in your prayers. This cancer stuff seems like an epidemic some times.

Well, all is well for now. I am sitting in a cafe in Santa Monica waiting for the traffic to improve before I make my way back home. I have to say the people watching here is great!

Third Street Promenade . . . one of the things I enjoy about my oncology appointments . . .

Thank you for your continued prayers and support.

I wish you all a wonderful holiday, peace and health!

Love,

Lisa

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Tamoxifen-smoxifen . . .

1 Aug

Well, I just upped my 1/2 dose of Tamoxifen to the “full” dose (I did this on Saturday). It was not so great . . . I was nauseous pretty much all day and evening and even felt a bit that way this morning (Sunday). I am supposed to now be taking 20 milligrams per day (I started by taking 10 milligrams per day . . . after having a bad experience taking the full dose of 20). My oncologist recommended that I re-start the Tamoxifen by taking 20 milligrams every other day. I opted for taking 10 milligrams every day.

I haven’t taken it every single day . . . there have been some breaks due to taking an antibiotic, for example . . . I didn’t want to combine the antibiotic with Tamoxifen. Also, had a few week break of the Tamoxifen after I was in a car accident . . . was prescribed a muscle relaxant . . . didn’t want to combine that with Tamoxifen either . . . so, I haven’t been taking the 10 milligrams every day, but, getting there.

So far, I have had very few side effects with the 10 milligram dose. No hot flashes really, maybe an occasional one, but, not very intense. And, the nausea is only for a brief period of time, about an hour or hour and a half into taking the medication (this was the 10 milligram dose). AND, what I found was that if I took the 10 milligram dose before bed, I would not experience any noticeable side effects.

However, as soon as I upped the dose to 20 milligrams, I really felt unwell. I am splitting the dose up over the day (one before bed and one in the am). But, it doesn’t seem to make a difference, I just feel sick with that dose.

I have done some research and there really isn’t a lot of certainty about what the appropriate dose should be . . . . while most all sources state that the appropriate dose is 20 milligrams, there really has not been research on what the proper dose should be . . . there is, however, currently a clinical trial on this very aspect – the proper dose.

There have been some small studies that seem to indicate that taking 10 milligrams is just as effective as taking 20 milligrams. But, these studies were small and do not seem to be conclusive. Studies were done on the effectiveness of 20 and 40 milligram doses of Tamoxifen and the results indicated that there was no difference in the effectiveness of Tamoxifen whether it was taken in a 20 or 40 milligram dose each day. However, with the 40 milligram dose there were some toxicity issues. Hence, the recommended dose of 20 milligrams.

Unfortunately, as of yet, there have not been extensive studies on the effectiveness of 10 versus 20 milligram doses. This is currently underway, which is good. But, it doesn’t really help me with my dosage right now.

I am somewhat inclined to think that the 10 milligrams is enough for me . . . but, I am not sure that I want to diverge from what my oncologist wants me to do.

Well, I am rambling on here . . .

I guess what i am going to try to do is to do the 20 milligrams dose for a bit and see how it goes. So far, I experienced nausea and some pretty intense hot flashes. I didn’t take any Tamoxifen yet today (it is now Sunday evening) and I have felt much better since about mid day. We shall see how it goes. I just wonder though, if it makes more sense to stick with taking 10 milligrams . . . maybe the fact that I am not having significant side effects with the 10 milligram dose means that it is the right dose? Or, maybe it means that it is the wrong dose . . . that I need to have those side effects . . . as that is what evidences that the drug is working?

You see how crazy making this all is? That is, if you allow it to be . . . 🙂

Well, enough of Tamoxifen talk.

I had a busy weekend. I am tired, but, in a good way. Tired from playing music and spending time with wonderful friends . . . new and old.

I will post pictures up here soon from our gigs this weekend (two, count ’em, TWO gigs this weekend . . . PHEW, so tired)!

Well, wish me luck with the Tamoxifen. I was going to take another 10 milligram pill tonight, but, I think not. I am already in bed. I think I will take 10 in the morning tomorrow and then another 10 before bed, like I did yesterday. Hopefully it will not be as bad as Saturday’s 20 milligram attempt. 🙂

Love and peace,

Lisa

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