“There’s radiation on my windshield
Paranoia in my mind
and my heart is weighted down
with the mistakes of my own kind.”
Back a few weeks ago when I was declared to be at stage 0, I decided to forgo radiation treatments. On Friday morning I received an upsetting call from the Radiation Oncologist. Suffice it to say he used the word coffin in our discussion. The statistics that he used were the same as he gave me prior to surgery and the pCR. For me something doesn’t add up. I’ve had the Joanne Rand song Radiation on my Windshield going through my head nonstop.
Up until now I have been able to get behind each facet of my treatment. I have very consciously used my mind to enhance in every way possible the treatments. I have wanted to have the placebo effect on my side every step of the way. So when the nurse brought over each bag of chemo drug, or targeted therapy I acknowledged that it was my name on the bag, and using a sharpie marker I wrote little blessing/gratitude spells on each one. During infusions I visualized good things happening, and I drew pictures in my journal to create images of positive outcome. Before drinking my TCM swamp tea each morning and afternoon, I take a few minutes for a period of prayer and meditation.
Preparing for my mastectomy I did much soul searching and meditation to accept the loss of my breast. During the week before surgery I listened to guided imagery twice a day, and also listened on headphones during surgery. As a consequence even when I found out about the pCR, and needed to do more processing to accept that my breast was gone, and it contained no cancer, It wasn’t as difficult as it could have been. I had done the work to get behind the surgery.
When Radiation Guy called I was not filled with enthusiasm for his proposal. Since Friday I have engaged in a frenzy of information gathering. I have made appointments for a second opinion, and a chat with my Oncologist for when I go to Portland this Friday and Monday for Herceptin and heart scans. What I have found out so far in the medical literature is that there have been no published comprehensive studies about radiation therapy done since the onset of targeted therapies for HER2+ cancers. There are not comprehensive studies on what a pCR means to outcome in regards to radiation- in part because there is disagreement on how to define a pCR.
Radiation Therapy is designed to prevent local recurrence of cancer-ing activity. It is a tool that can only be used once on your chest. Metastasis, which is the formation of secondary tumors in other parts of the body, is generally what cancer-ing people die from. Recent data collected from retrospective studies indicates a slight improvement of overall survival rates after radiation. (i.e. less metastatic disease.) The reality of my situation, that includes being diagnosed with not early stage breast cancer, but locally advanced breast cancer, is that the horses were already out of the barn in December. The likelihood that there were already little micrometastases floating around my body is great. My overwhelming positive response to treatment, plus the ongoing Herceptin treatments hopefully all works towards disabling any of those possible cancer-ing cells from setting up camp in bone, liver, lung or brain. Radiation is not a systemic tool- it is a local regional tool.
Most of the studies I have read do not differentiate between different forms of breast cancer – and if I have learned anything on this journey it is that there is a big difference in how the various forms of cancer-ing cells progress. I want to see studies comparing hundreds of women with Her2+ cancer, with a pCR after neoadjuvant chemo and targeted therapies. Plus tamoxifen. (My treatment regiment.) Studies commingling the progress of triple negative breast cancer with triple positive cancer using the same treatment are not so useful – they are two different diseases, and need different treatments.
I have seen several places that if your original diagnosis was stage 3 you are recommended for radiation, even with a mastectomy. This recommendation is based on studies done with data collected in the late 1960’s -1980’s. The treatment of breast cancer has changed drastically since that time, especially for HER2+ cancers. There is speculation in the literature that early stage HER2+ Cancers may soon be treated with targeted therapies alone- no chemo. Which means that studies showing the risk of dying from HER2+ disease without radiation done prior to targeted therapies has no way of setting accurate risk assessment for someone with access to todays therapies.
I still have questions. I still do not feel easy about utilizing Radiation. I deeply resent the use of the word coffin in a discussion about my treatment direction. Fear is never a good state to evoke to make decisions. Ironically one of the blogs I follow by Dr. Lissa Rankin MD posted today about the damage doctors may do inadvertently with their words. (See post here.) I have received several different prognosis numbers from my various western medicine doctors. After looking at the research I am realizing that they are really operating off road right now. They don’t have the “gold standard” double blind studies to inform their opinion on my situation. I don’t hold that against them, I do however begrudge being pressured to follow the party line when they are guessing. Guessing while at the same time placing little to no value on the various complimentary therapies I have received. Most complementary therapies are seen to have no “value” because there are no double blind “gold standard” studies to back up the efficacy of say TCM or energy medicine, and therefor they must have made little to no contribution to the success of my treatment so far.
There have been studies about the mind/body connection and its powerful effect on healing. Things change in our bodies when they change in our minds. I need to get my questions lined up for my appointments, perhaps I will learn something that will persuade me. If after all the dust settles, I do choose to have radiation, it will only be because I can get behind it 100%. Without the placebo effect on my side I am not buying the party line. The work before me now is to reach into my self to connect back to the light that has carried me through on this journey so far. Right now I am needing to make thought adjustments every few minutes to keep myself out of the dark angry hell of doubt kicked up by the words of the radiation guy.
9 Comments Add yours
I’m sorry you’re being asked to make such a tough decision, with no real solid facts to back you up. As you said, it really does seem like you’re traveling “off road” right now. Hang in there, and know we continue to keep you in our thoughts & prayers!
Dear Iris–I am starting Radiation on July 7. I met w/ Dr. Kim at St John’s in Longview for the 1st time on 6-2. He comes highly referred & regarded by my surgeon at Good Sam & my oncologist at Columbia Memorial. I really liked him and I myself am 100% “behind it” (radiation for 6 weeks). He’s been there 21 years and has lots of Very Positive Views & encouraging thoughts on radiation therapy. He would be great to get your 2nd or 3rd opinion from. I pray God’s Continued Blessings for you. Love those eggs!
I am so angry when I read about “medical hexing” which is what this doctor tried to do. You are smarter than that, of course, but why must they show such disrespect for your choices?
YOU are your own healer, not them. I have certainly had to “fire” several doctors over such unhelpful language and ideas.
You don’t “have” to do radiation. These are your choices. And it’s really so appalling the way they frame things without facts to support them.
I wish I could share with you some of the amazing inspiring people I met last week at the Whidbey Institute Retreat. Here’s one: http://somethingmorethanhope.com/
I also have a friend who’s a doctor and survivor, Gwen Stritter, who might be good to talk to.
Lots of love,
Saying this sucks is an understatement! I continue to be so impressed by your continued investigation of the healing path. It is so disheartening that the western medical community is using scare tactics! We continue to send loving thoughts and energy.
Let me start with f*#! radiation guy. I remember Dad saying once he never would tell a patient they had so many months to live for the reasons stated by Dr. Rankin. I believe the mind is amazing. Doctors are not always right(except Dad). I think radiation guy had a problem with the fact you had the nerve to question his judgment. From what you have plenty of valid reasons not to do radiation. It is a very good thing to take charge of your treatment and your life. I just read an article yesterday about a woman who searched for answers for her daughter. She saved her daughter from have her leg amputated. If the doctors had valid reasons for you to do radiation, in your case, and could back it up with current research, that would be one thing. I believe you are healed. This is a miracle, rejoice. Don’t let fear take away your joy. Love you.
Good Morning Iris
When I read your blog last night the first thing that came to mind was “Halt” I learned that slogan a long time ago. If you are to Hungry,Angry,Lonely,Tired . “Halt”!!
You are doing the right thing in your research,with second or third opinions, you don’t need to let this person pressure you, remember this is a business and it’s big business. Does he have a quota to fill?
I remember the hospital wanting your Dad to discharge patients if he wasn’t ordering tests. And now you can see its almost drive thru medical care. He had a few things to say about that too!!
For starters when you get the diagnoss of the Big C and they are talking about you I’m sure it is paralyzing, for a Dr. to take advantage by injecting fear and not facts. His degree does not give him permission to pressure patients. He just doesn’t know who he is dealing with! He needs to learn tact and kindness, it might have been one subject he missed.
I know you will do what is right in your time! There is no rush! I know you will cover all bases, with your wonderful team of caregivers and
with your research it will work out.
We are all praying for you here in Michigan where it is now Spring and no more snow!
Love to all
You are so right, Iris, I have experienced that kind of verbal damage myself, and it leaves you empty and wondering how smart this doctor really is……, but you are smart enough to rise above him and continue your journey as you have done until now. By your own education of yourself, you are the best person to make the decisions , because only you know all of the facts that fit you. Love from Joan, xo