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 (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
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
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,