Sunday, May 24, 2009

I'm ready to be new again...

but there may be a small problem.

I went to visit the radiation oncologist on Thursday afternoon, before heading up to my cottage for a much needed mini-vacation.
In keeping with tradition, our 2:45 appointment (which we had to be there 30min prior to) was pushed back to 3:20-ish.

The meeting was worth the wait, however, as both Dr Read & her nurse were very pleasant and professional. The nurse took my medical history (which I think I could recount in my sleep at this point), and assured me that Dr. Read was very honest with her recommendations. If she thought I didn't need radiation, she would come right out and tell me.

I changed into a gown and Dr. Read came in to perform the standard physical exam. Upon completion, I was left alone to change and ponder the outcome of the meeting. The pondering was short lived, however, as Dr. Read returned moments later and explained to me that my case was borderline. She referred to cases like mine as "controversial", due to the inability of the professionals to agree on the proper resolution. The pros and cons of the treatment were laid out before me (below) and the final decision was put to me.

One would think that if radiation reduced the likelihood of my cancer returning, it would be a no brainer. My mentality going into the meeting was something like "cancer bad, radiation kills cancer, no more cancer, no problem. Let's do this".
However, as I have indicated in the title and first line of this blog... it's not that cut and dry. You will see why shortly.

I would like to briefly relay to you the reasons for/against treatment,
and then the pros and cons of treatment before discussing how I feel about it.

Why I don't necessarily need radiation-
*Only one node involved
*Cancer in the one node was completely encapsulated (it hadn't progressed beyond that node)
*my margins were clear (meaning that the cancer hadn't progressed/into toward the chest wall)

Reason why I should have radiation-
*I'm young, therefore I have a longer time for the cancer to return
*My cancer is very aggressive, therefore more likely to return

Pros of treatment-
*Radiation would effectively shrink/kill any cancer cells that are
still present in the chest area (* see note below)
*Local recurrence without radiation is 15-20%, and with radiation it is only about 10%
*A little more piece of mind, knowing that I have done everything I can to get rid of this horrible disease.

Cons of treatment-
The side effects, which I will list below.
Please note that these are not guaranteed side effects. Depending on how my body reacts to treatment, I may experience none of them at all.

*Darkening of the skin on the breast (or lack thereof)
*Development of superficial blood vessels on the skin
*1% chance of a rib breaking easily
*1-2% chance of lung scarring and development of a cough 6-8 weeks after treatment
*The chance of lymphadema jumps from about 5% to 10% with radiation
*remote chance that it could injure the nerves that work the arm
*slight increase (2-4%)in the likelihood of developing an additional form of cancer
*radiation can only be done once to that region of the body, so if the cancer comes back, radiation is no longer an option
And the big kick in the face-
*radiation could lead to scarring of the tissue in affected area, making implants impossible. If I were larger, this wouldn't be a big deal, as I could
utilize other methods of reconstruction (TRAM flap etc). However, because I have little fat on my body, the only option open to me would be implants.

I'm at a loss as to what to do.
I imagine that most people are thinking "If it's going to save your life, who cares about reconstruction".
Well, being that I'm only 27 years old, I guess I care about reconstruction.
Let me lay out the best/worst case scenarios for you, so you have a better idea of what I could be facing.

Best case scenario- I have radiation and everything goes well. I get the report back from the geneticist and he tells me they have not found a hereditary component to my cancer. I don't have to take the precautions otherwise necessary. I have my other breast removed and have implants put in. I am essentially physically whole again.

Worst case scenario- I have the radiation and it doesn't go well. There is a build up of scar tissue making it impossible to proceed with implants. I
receive word back from the geneticist that they found a hereditary component. To reduce the likelihood of having cancer again, I have my other breast and
my ovaries removed (remember, this genetic component puts me at higher risk for develop ovarian cancer). This essentially leaves me an asexual human being. Pretty much all the parts that make me "female" are gone.

I honestly am at a loss as to what to do.
I don't want the cancer to return. I don't want to die. I don't want to spend the rest of my life fighting and undergoing chemotherapy.
On the other hand, I don't want to live my life without breasts. I don't want to deal with the expense of breast prostheses and the accompanying mastectomy bras. I don't want to be stuck buying clothing/bathing suits that hides the fact that I don't have breasts. I certainly don't want to have to deal with the looks that people give if I don't wear the prostheses. I don't want to spend the rest of my life wanting to cry every time I look in the mirror.

When this started, I was convinced that the hardest decision I would have to make was whether or not to have the mastectomy. I took some solace in the fact that they could be reconstructed, that I could be made new again.

So what now? What decision should I make?
Have the radiation and live with the consequences if I can't have reconstruction... on the off chance that I'll be in the 5-10% that radiation actually helps.
Not have the radiation, get my boobs back and pray that the ghost of cancer past doesn't decide to make a surprise return visit. On the off chance the cancer does returns, spend the rest of my life wondering if it could have been prevented.

Why do I have to make decisions like this?
Why can't I be like most people my age, who's biggest decision is what colour car to buy, or whether to look for a higher paying job.

(*Note* The radiation oncologist informed me that chemotherapy, although effective in killing cancer cells throughout the rest of my body, is not effective in the region where surgery occurred. This is due to the severing of the capillaries (tiny blood vessels) leading into the area. The chemo, which travels by way of the blood, generally can not successfully make its way into the area where surgery has occurred.)


Anonymous said...

Hey love,

This is a toughie and I'm sure has given you some sleepless nights. This decision is extremely hard and no one can make it but you however, I would say that no matter what path you choose (as in all complex life decisions) you shouldn't beat yourself up about what could or would have happened if the other road was instead chosen. This may sound flippant coming from someone who is not experiencing what you have gone through but every decision you take is shaping you and your journey. Yes there are worst case scenarios and sometimes they happen, but you need to do what is right for you and how you feel in your heart. I know a few people who have gone through radiation therapy then had implants and are completely fine but on the other side of it if you wanted to opt out and have reconstruction then that's what you should do. It's your body, your mind and your treatment. Whatever you choose I know that you will kick this cancer hard in the face and move onto an amazing, long and extraordinary life. We all love you and support you xxxx


Lallen said...

Meg, no surgery in the world can take away the fact that you have become the lady that you are.

Jessie X. said...

hey, Meg..have you ever done some research about Chinese herbal medicine fighting for cancer? i don't have a clue right now, but I have heard so many thing about patients recovering from cancer as they are taking herbal medcines.... it prevents cancer and has better treatment to your body..less damage to your body and build up stronger side of your body...i am so sorry as i am not knowing enough to help you out's some thoughts you may consider in the long run as your treatment...less side effect and less pain...when i was in china, i have heard many good things about it...

if you want, i can try to search some chinese websites for you to get some idea...

remember, radiation is not the only way....Don't be frustrated as we are with you as well as your family~!

love, Jessie Zheng.

thexoxo said...

dang megs, you've got a lot of thinking to do. all i can say is that you know your body best and with some heavy thought you will know in your heart/mind what is feels right for you. thinking of you kiddo. xoxochad.

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