Monday, February 24, 2014

Radiation & Incurability

To radiate or not to radiate
On the 13th of February, I met with a radiation oncologist.  My expectations of this appointment were that the doctor would have reviewed my recent scans and my past radiation treatment file from 2010 before I met with him.  This did not happen.  Instead, I discovered this doctor was acquainting himself with my health history for the first time as he sat before me.  My husband commented later that it was most likely done this way in order to avoid his not being compensated for his time if I did not show up for the appointment.  I see this as a possibility though it did not soften my annoyance. 

He began by starting from the beginning, my 2005 diagnosis.  I was perturbed a bit that we had to start from the beginning.  All of that doesn’t matter now.  Not only was he unfamiliar with my case, he further annoyed me when he said “Tell me about your first diagnosis in 2005 when you were in high school”.  Really, I look that young?  Oh yeah, and I look like a model too.  This type of talk may have at one time flattered me, but no longer.  I know better.  Cancer and its treatment does not make someone look young and vivacious, just the opposite. I have seen myself in the mirror.

With my health history covered, he next wanted to see my scans.  I thought how could he give me a valid opinion today about possible radiation when he is so clearly unprepared to do so?  He did do something no other doctor has done.  He invited me to look at my CAT scans.  I have been curious as to what those scans looked like.  My oncologist in Chapel Hill has never looked at them so I have never asked her to show them to me.  The scans looked exactly like those I have seen on TV or on the internet with one exception.  The radiation oncologist pointed out a black area on my right lung. 

“That is showing where your lung has scarring from your past radiation”, he said. 

The lungs looked great otherwise.  Soon the image of the area where the 1.2 cm tumor is located was reached.  The tumor was not easily revealed, at least in that image.  He did not look any further for a better image.  I guess he decided he had seen enough.  He turned to me and said he wanted to speak to Dr. Z, radiation oncologist in Chapel Hill, before he would give his opinion.  He said that I had had a great deal of radiation in that area.  The tumor would need a lot more than what I have had already to produce the result we would want.   The appointment ended without his opinion on treatment with radiation which was good because he did need some time to think things over, obviously.  I left with the understanding that he would call me on Wednesday. 

I went home with doubt that he would recommend radiation treatment.  There was something about his demeanor and the way he said, “This is a difficult area to treat”.  I also thought about what I would do if he said, “Yes”.  Would I want to take the risk of losing the function of my right arm?  (My tumor is close to the right clavicle bone deep within my chest.  The radiation would pass through motor neurons responsible for muscle movement to my right arm and might damage them permanently.)  Ever since the radiation oncologist in Chapel Hill let me know of the possibility of this particular side-effect I had been thinking about what I would do.  I was leaning toward taking that risk if it was possible to completely eradicate the cancer.

Wednesday came and Wednesday went.  I know I am not the only patient that this doctor sees, but when he said, “I will call you Wednesday”, I expected a phone call.    Late Thursday morning, I called his office.  A nurse said she would contact him and then call me back.  Not too many minutes later the doctor called.

Somehow I imagined that I would be given a choice about my being treated with radiation.  I thought the doctor would call me and tell me about side-effects and what the likely hood the treatment would work with his opinion included. Then I would go home and discuss it with my family and make a decision about this treatment.  This didn’t happen.  I won’t have to make a decision.  The radiation oncologist I saw on the 13th made that decision for me.  He will not treat me.  The possible side-effects, due to my having had radiation in 2010 to the same area, could be so severe that the doctor felt the risk of damage to me was greater than the benefit.  D---! But, I am grateful that my treatment is about what benefits me and not how much money a doctor can make by treating me.

This life I lead with metastatic breast cancer can be so discouraging.  I am constantly reminded on the internet and in my oncologist’s office of the incurability of stage IV breast cancer.  In talking to the radiation oncologist on the phone, the words that my oncologist has said more than once raced through my brain yet again, “Your cancer is probably in other places, but can’t be seen yet”.  Another way to put what he said is . . . even if we get rid of that tumor in your chest, you are still going to die of breast cancer.  This reaffirms how impossible my situation is.  It explains why once breast cancer metastasizes doctors don’t go after it aggressively.  The goal is stability or shrinkage, nothing more.  According to my oncologist, studies have shown that getting rid of the tumor(s) that can be seen doesn’t save lives-- sneaky horrible breast cancer cells.

I did not truly understand how deadly metastatic breast cancer was until my cells found their way to this point of no return.  I thought that if it ever metastasized to an organ, if it was caught early, there would still be a chance to save me or anyone else.  Apparently, almost 100% of the time, this is wrong.  Nor did I know that 30% of early breast cancer patients will eventually be diagnosed with stage IV.  No wonder so many bloggers with stage IV breast cancer are sick of Pinktober because it creates beautiful images and stories of early-stage breast cancer patients all smiling because they beat the disease.  There is nothing happy in the pink party for people like me.   

OK, so radiation is out for now.  There may be a need to use it in the future if the cancer grows in such a way that it is necessary for my comfort to reduce it.  At least I have Perjeta and Herceptin.  I hope these targeted therapies continue to do their magic. 

Life without Taxotere
Life without Taxotere for this three week cycle of treatment has been wonderful.  I have felt tremendously better. 
·        The neuopathy caused by this drug was starting to make my feet hurt when I stood for any length of time. My feet did swell and pain was felt, but there was a definite improvement. 
·       The scalp sores I have enjoyed (ha ha) at the end of week two after treatment did not appear.   
·        I did not feel anxious by the end of the first week from the steroids taken because I did not have to take those pills.  Those steroids were responsible for lessening any nausea symptoms and reducing inflammation.  My body did not like it.  I could not concentrate on any one thing for very long.  The drug made me feel like I needed to jump out of my skin to find relief from the anxiousness. 
·        Mentally I was and am so much happier.  I didn’t go through the horrible sadness I have felt after Taxotere.
·       My mouth feels so much better. No more destruction to the cells of my mouth. Yipee! I couldn’t taste food very well for the whole week after my infusion.  Salsa would set my mouth on fire.  No amount of milk could alleviate the pain.  Now eating is fun again.  My teeth had even begun to hurt. 
·        I still feel tired at times, physically weak, and sometimes I can’t figure out why I don’t feel right, but overall this cycle has been the best since I started treatment.  There are moments when I feel almost normal – well, almost.
·        Diarrhea still plagues me.

Tomorrow is infusion day.  That will be the time for herceptin and Perjeta to attach to the receptors on the outside of my cancer cells and stop them from growing and dividing. 

Thanks for reading.      


  1. I was thinking I'd not read anything from you in awhile and I was going to send you a message. Happy to hear that you're feeling better. Sounds like your radiologist is a bit of a dweeb but I run into idiot doctors all the time up here.
    I think my taste buds have bit it as food isn't tasting as good as it once did to me. Only had one day this past week where I cried all day and a huge lump has popped up on my neck but my oncologist doesn't seemed too concerned about it.
    Hang in there Lisa!

  2. Hi Susan, Boy, don't I know how it feels to cry all day. We both are in quite a mess. But, I think we both are doing well right now. I sure hope it continues.
    Sorry to hear about the lump on your neck. Maybe it is just a normal lymph node doing its job.
    It is such a shame that chemo takes one of the small pleasures of life from us, the taste of food. I hope the further you get away from your last treatment, the better food will taste, so you can enjoy at least a few of the meals you cook.

  3. I can't pretend to know how frustrated you must be... it seems like everywhere you turn any good news is laced with bad...
    I can only say that I'm so sorry.. how lame is that? I am though.
    ~hugs from across the miles~

  4. Hi Sweet Pea! Thank you for sharing!!! How did the latest appointment go? I was SO ANGRY at the doctor as you described his non-bedside-manner! Argghhh! I keep praying they are ALL making the best decisions for you, the person...and that God gives you the BEST doctors ever!!!