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

 

16 Responses to “Confessions of a non-compliant patient”

  1. The Savvy Sister September 4, 2013 at 4:45 AM #

    You have to be comfortable with what you are doing to reduce your risk. no one can tell you what will make you comfortable. i will say, in being non-compliant you are empowering yourself, which has been shown to reduce your risk of illness. (hey! you’re on your way without the Tamoxifen!)
    If you’re not taking the tamoxifen, you may want to look into lifestyle ways to reduce your risk. There are many and they are are all FREE.

    I wish you well!

    • cancerfree2b September 4, 2013 at 9:12 AM #

      Thank you for your comment. And I completely agree. Once I had made the decision to stay off of Tamoxifen, I felt like I was back in charge of my own life again. Tamoxifen was not always debilitating for me. But, it did turn into that for me. Not waking up in pain every single day has been so liberating and has completely changed my life. I AM healthier right now (I am waiting on biopsy results, and don’t know what that will tell me) but, I still feel healthier. And should I have to face cancer again, I feel stronger right now than I did a month ago – exercise and long walks and freedom from pain have made me stronger.

      I am doing many things (diet and exercise and stress reduction) to reduce my risk of a recurrence. Who knows what will happen, I can not say. But, I can say that this is the right decision for me.

      Thank you for your comment. I know there will be people who think I am crazy. Maybe I am, but I will call it “crazy happy” for now 🙂

      XOXOXOX
      Lisa

    • Judith Harvey February 22, 2014 at 4:38 PM #

      I was on Tamoxifen for 6 years. Oncologist took me off because of cerebral atrophy and protruding forehead. I now have so much pain in my legs. They ache and ache and I feel as though they are going to give way. if I had known the legacy of Tamoxifen I would not have continued. My hands and joints are so sore. I’m still nauseous. Can’t sleep. Headaches, dizzy etc. etc. This drug is pure POISON!!!!!!!!!!!!!! Six years on it and 2 on Aridimex, which caused TMJ, osteopenia of the hip, spine and neck of the femur. I know it’s been around for years. The Oncologists should give us the real story and let us decide. Instead, they say you have to stay on medication for 10 years, or 8 when you’re told about the cerebral atrophy. Neuropathy, and so on. I want my life back the way it was before. Fat chance.!!!!!!!!!!!!!!! I forgot to mention depression.

  2. The Presents of Presence September 4, 2013 at 4:54 AM #

    Lisa, I endured Tamoxifen for less than a year with side effects which I deemed intolerable considering the benefits of the drug so I went off of it, with my breast surgeon’s consent. However, I had my ovaries removed as a precaution and as part of the oncologist’s ‘giving in’ to my decision. I was 35 and more than 10 years later, I am still happy with my decision, but as Sis above stated, you have to be comfortable with what you are doing. This is your life. xo

    • cancerfree2b September 4, 2013 at 9:22 AM #

      Thank you for your comment. I took it for over two years. After being on it for a little over a year I had to have surgery to remove ovarian cysts (lots of them) and to have a polyp removed (very large) and have my endometrial thinned out (sorry, don’t know how else to explain it, but the Tamoxifen caused endometrial hyperplasia – I think I am recollecting that correctly – and that is something that if it happens can ultimately turn into cancer. So I had this procedure and was told I would probably need it every year or so – that “we’ll keep an eye on it” (ultrasounds to check for new cysts etc.) and then just keep doing the procedure again until I am off the Tamoxifen. Ugh.

      I do have the option of removing my ovaries, but I am not brca positive and I really don’t feel like having yet another body part removed. But, I am still thinking on it. Not sure. I am still pre-menopausal and so my ovaries are still kicking out a good amount of estrogen. But, my hope is that with exercise, weight loss, stress reduction and diet, that I can reduce my risk of recurrence that way.

      I truly believe that stress and chemical exposures were a root cause to my getting cancer in the first place. So my goal is to limit stress and exposures as much as possible.

      I know that I couldn’t exercise or enjoy my life or reduce my stress to the degree that I can now when I was on Tamoxifen.

      I like waking up feeling well. We shall see how things go 🙂

      Thank you for your insight and input. I truly appreciate it.
      XOXOXOX
      Lisa

      • The Presents of Presence September 5, 2013 at 7:46 AM #

        Lisa, Big hugs to you! Keep waking up feeling well, limit the stress and enjoy your life! xoxo

  3. furiouscuriouscancersurvivor September 4, 2013 at 10:08 AM #

    Forgive me for interfering but the 50% statistic is a statistical construct. The survival benefit is a humble 6@. Subtract the women who get a stroke and you see it saves 17 lives in 1000 women, a very low 1.7%. I would substitute it with DGlucarate. I was on it and it causes bone pain. It means it lowers estrogen. Also DIM detoxes estrogen. Her 2 benefits from Omega 3 supplementation.Like all cancers

    • cancerfree2b September 4, 2013 at 10:16 AM #

      No forgiveness needed 🙂 You are NOT interfering! 🙂

      And believe me, I know about that “50% BS. Sorry for my language (or for my acronym for my language 🙂

      A study of 30,000 women – and the results were that those who did not take Tamoxifen had a 2.8 percent recurrence rate. Those that took Tamoxifen had a 1.4% recurrence rate – that is the “50 percent” reduction in recurrence – from a 2.8 percent recurrence rate to a 1.4 percent recurrence rate.

      I realize that I am probably in a higher risk category due to my youth, the aggressiveness of the cancer I had and the fact that it was already in my lymph nodes.

      But, my quality of life at some point, simply had to play a role, I wanted my life back and I got it. For however long that is, I am glad.

      Thank you for your comment!

      All the best to you and much continued health!

      XOXOXO
      Lisa

  4. Bonnie September 5, 2013 at 8:08 PM #

    I didn’t even read through all the comments because I was getting so mad. I am one year out and they wanted me to take Arimidex. I did and it was hell. So next they threw in Tamoxifen. Forty minutes after taking projectile vomiting. weight gain…and on. Hot flashes.

    I would rather be dead. I am not going back on this crap. I had a mastectomy because they said I had DCIS in situ and that wasn’t even cancer yet. The invasive tumor was so tiny it was graded a 1.

    This is all a crap shoot and we are all still dying. LIve for today. My Mom told me basically the same thing a year ago. She died yesterday. I am getting on with living. You go girl and enjoy what you have.
    By the way, my aunt got uterine cancer from tamoxifen, my best friend has had reoccurrence three times, and Breast Cancer? But Dr I hate Pink…was stage 2 and took Tamoxifen and now she is Stage 4.

    I think there is a lot for just trust God and going with it; after your initial treatment and getting rid of it. I am not talking about the rest of you in treatment; or those that were diagnosed in later stages. I am sorry for all of us. It is all horrible.

    • cancerfree2b September 5, 2013 at 8:20 PM #

      Oh Bonnie, I am so very sorry you lost your Mom. My heart goes out to you. I am so sorry for you. It is truly a crap shoot. I have so many stories form friends that echo what you have relayed here. It is so awful, this dreadful disease is bad enough to have to deal with so many side effects and for what? I am so sorry for what you have had to endure. I agree, live for today, absolutely live for today.
      I am so sorry about al of it. It is horrible. My thoughts and prayers go out to you today and always.
      Thank you for sharing here. The story of your aunt getting uterine cancer from tamoxifen – this is real and it is horrible. I know that is where I was headed if I continued it. And even if I weren’t the pain took over so much of my life, I could not bear it.
      I am so sorry for your loss, so, so very sorry.
      I am thinking of you and sending hugs, prayers, love and light your way.
      XOXOXOXOXOX
      Lisa

  5. Brandie September 6, 2013 at 7:04 PM #

    Lisa, I stopped tamoxifen too. After only a few months. Thankfully, my doctors fully supported this decision and worked with me to find alternative treatment.
    I agree with what others have said, it’s your body and you know it best. You need ot make a decision that is right for you, and you alone, not for others.
    I hope you get good results on the lesion they are checking.
    xoxo,

  6. pinkunderbelly September 23, 2013 at 6:56 PM #

    I hate Tamoxifen, too, and applaud you for doing what’s best for you. And I love your mom, BTW!

    • cancerfree2b October 1, 2013 at 8:12 AM #

      Awe! Thank you so much! I love my Mom too!
      XOXOXOXOXOXOXOX
      Lisa

  7. Bonnie December 27, 2013 at 6:56 PM #

    I am curious about this lesion thing. I am going to my oncologist next month, I missed my three month appointment this month because I lost my health care coverage. I had a left mastectomy before. That breast had some ‘things’ underneath that I had complained about over two years ago. The doctors said it was nothing. Two years later…cancer in that breast. They said it was not related. Skip ahead one year, and those same things are growing on the right side. Hmmmm…off to the oncologist Jan 7th and will check it out. There it is folks…Fear…,has returned to my street.

    • Bonnie December 27, 2013 at 6:58 PM #

      oh by the way; I quit tamoxifen also. My oncologist said it was another 8 percent towards my 74 percent of not getting it back again. At the time, I didn’t think that was very high. I am not sorry I quit it, or the Arimidex – the drug from hell for me.
      I miss my Mom. I was thinking I would have liked to have shared this with her but then I think, no….she didn’t need this either. RIP Mom.

  8. monicajhurley July 2, 2015 at 11:30 AM #

    Reblogged this on breastcancerbarbie and commented:
    Thank you for telling the truth. I can’t live like this and I want to live. 60% chance of it not recurring sounds good enough to me.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: