Wednesday, September 21, 2011

Your radiation will be complicated!

Those were the words my Dana Farber oncologist used back in May, referring to my future radiation treatment. So today we met with a Radiation Oncologist (RO) associated with a local hospital and there is much to consider.

Here are the "for sure" things...I will have a "restaging" PET/CT scan some time the week of 10/3 to see if there is any active cancer remaining.  I was happy to hear that he wanted this test performed.  He wants to know where I stand, and so do I.  And he wants me to get a second opinion from an RO at Dana Farber (DF).  That was also good news and I had already sent Rick across the hall to the local DF office to request they set up an appointment.  So between these two medical teams, I am sure it will happen, sooner rather than later.

He is recommending irradiating everything - my chest wall, intramammary nodal area, axilla area, and supra-clavical area.  Oh my!  I asked what my risk of recurrence would be if I don't have any radiation and he said 40%.  I asked a ton of other questions, but I didn't ask him what my risk of recurrence would be if I had all the radiation he'd like to administer.  So I need that answer.  It's not 0%, and I suspect it might not be a whole lot better than 30%.  So this is a very important question, because all of this radiation carries significant risks of side effects, some of them quite life-threatening. 

And then there is the dilemma of reirradiation in the area where I had Mammosite rads last year.  He says he thinks it's not a problem because the breast tissue has been removed, leaving the chest wall.  In theory, the chest wall has not been radiated yet.  Really?  Do you really think that little balloon contained all the radiation being emitted from those radioactive pellets they inserted in there 10 times for 10 minutes?  If so, then why did the physicist enter the room with a geiger counter to be sure I wasn't contaminating the room???  Why did my esophagus get irritated for two weeks?  Why did my external breast skin have an area of peeling for a couple of weeks?  I am finding it hard to imagine that there wasn't some "bleeding out" of radiation in there somewhere.  And oh, when I asked Johns Hopkins if reirradiation was possible after Mammosite, their answer was "no."   OK, this is why we need a second opinion.  I guess in this case, it's a tiebreaker third opinion!

Anyone heard about Kara Kennedy (daughter of Ted Kennedy) who just died at the age of 51?  Well it turns out that she had lung cancer 9 years ago.  She got chemo and radiation.  And her death is being attributed to cardiac failure caused by her cancer treatment.  There was a news story on the Boston ABC affiliate this evening about a new oncology specialty - cardioncology and how cancer treatment can kill the cancer but then kill the patient years later.  My RO told me that my risk of cardiac damage is up to 10%  Being a diabetic probably increases that risk; but at least I am not a smoker because then it would be even worse!

Then there is the risk of thyroid damage - one in three!   Oh but there is a pill for that.  You just take Synthroid and all will be OK.

Radiation Pneunomitis is another fun SE.  I don't remember the risk percentage, but it can happen anytime up to a year after finishing rads.  I could develop a permanent dry cough,  shortness of breath, fever, and if it persists long enough, permanent radiation fibrosis, which is not reversible.  Oh, but pneumonitis can be treated with steroids. 

Rib fractures can occur anytime after radiation, for years to come.  There is just a small risk, about 1%.  Of course, that can be helped with pain management.  But it comes as a result of loss of bone density in that area, and there's not much that can be done about that.

The risk of  permanent lymphedema is significantly increased with radiation of the axilla area.  And the RO suggested a boost, which would increase the risk even more than the 20% risk I already have.  There is some research that the boost is not worth the risk. Need to do a bit more homework on this one.

There is also a risk of Radiation-Induced Brachial Plexopathy, which is caused by radiation damage to the brachial plexus, a network bundle of nerves located near the neck and shoulder. The nerves forming the brachial plexus originate at the spinal cord in the neck and are responsible for the sensory and muscular innervation of the entire upper extremity.   Damage occurs 2 - 5% of the time and, whoa, for a change it's good to be an older chick.  Younger women seem to be more vulnerable.  The bad news is there is linkage between this and the lymphatic system. 

OK, that's enough.  You wouldn't take an aspirin if you ever actually read the little package insert that, in very fine print, gives you all the potential damage it could cause.  Suffice it to say, radiating 25% of my body mass comes with some pretty significant risk potential. 

The next issue is the timing of events.  My preference is to have DIEP reconstruction, spend six weeks healing, then start radiation (however it is going to happen).  Afterwards, there will be at least one more surgery for DIEP and maybe two, depending on how things go, how much I want to have done, and when they create nipples.  (Hope this is not TMI for anyone.)  With any luck, I'd be done by mid 2012.  Of course, the RO wants me to do rads first and he now off on a mission to find any clinical evidence that the order of things matters.  I don't think he will find anything as I have read in several medical publications that it doesn't matter, that there is no "Level 1" evidence that it makes a difference.  If I do rads first, I will have to wait 4-6 months before DIEP can begin.  And there is risk of vascular damage which could then make DIEP a non-option.  And I would not finish all the reconstruction until the end of 2012.  Remember I started this trip in June 2010...I'm ready to see an endpoint!

But what does matter, a life or death matter, is the accuracy of the radiation treatment.  If it's not done exactly right, in the exactly right places, everywhere that it is needed, then there is no benefit at all to doing rads.  Mess up one thing and you just messed up someone's survival rate.  And guess what can interfere with the accuracy of the radiation measurements...the very tissue expanders that I currently have as part of the initial reconstruction after my mastectomies.  Yup, those little devils can throw off the geometry.  They're plastic, they're full of water, and they jiggle.  That means they can and do change position.  And they change the curviture of the chest wall.  So I really want those SOBs out of there!  And the only way that happens is if I have DIEP first.  And DIEP can be first only if my PET/CT scan comes back clear. 

So you see, it isn't just complicated, it's DAMN complicated! 


  1. It does sound very complicated. And it sounds like you have a lot to think about.

    Michelle, I hope this isn't a bad question with all this going on but how would it be if you didn't have the reconstruction? Would the radiation and chances go and be better?


  2. Michelle....Michelle...Oh my goodness! Damn girl, I want you to SLAP ME DOWN, when I even just moan a little about any little thing going on with me.

    This is SO OVERWHELMINGLY full of STUFF that is damaging to your body. I cannot even comprehend how you must be feeling right now! I had no idea all you have to face and deal with...and you will, but right now...damn it! I want to swear! I guess you have a lot more reading and decisions to do.

    I wish I had a magic wand, and could make this all go away...but it won't, not right away. All you can do is research, make decisions, do the treatments, and take it a day at a time. The main goal is keeping alive. Then the other possible "damage" can be evaluated and worked from there. You know how to do it, Michelle. You are a survivor! This must be so hard right now, reading all the things that "could" happen. Do you ever watch the commercials with the new drugs out there, and how they sugarcoat all the side effects, while showing fairyland pictures of the family doing things? This is no fairytale. This is real life. I pray that these bad things won't happen to you, and you'll be in the percentage that make it easily.

    You have your family, people who love you, a positive attitude, and all the right things to make it. I'm sure none of that feels great right will again...maybe it still does feel good...but damn...this is really hard. All we can do is be here as you go through the process and explain things to us. I hope in some way this helps you get where you want to be, cancer free and having a healthy body again.


  3. Michelle, through it all you are presenting yourself with dignity, grace, and humor. You are in my prayers and have my utmost admiration.


  4. Michelle - Lots of decisions to be made for sure. I think your consult with Dana Farber will help a lot. They are the best and since your's is such a complicated case, I am sure there is someone over there chomping at the bit to get their hands on your case. Side effects can be scary. You just hope and pray you're not one in the 5 percent group that experience these side effects.

    My prayers continue daily for you and you remain on my prayer chain.


  5. Your description of what you're facing leaves me breathless. So much to consider. I know you're on top of it and I send you love and courage as you consider your options. I second what Cora said.

    Take care friend,


  6. My head is spinning with all that information. I don't know how you are managing to absorb and understand all of this. Get all the opinions you can until you feel comfortable with a treatment plan.

    Cora has expressed my thoughts perfectly. Yesterday at Tai Chi I sent positive energy to you and I will continue to do that at every class.

  7. Goodness you have a lot to consider Michelle. I feel very confused just thinking about it all. What it all boils down to tho, is just doing what will you give you the greatest chance of survival.

    I wish you well and I am daily sending healing thoughts and prayers. And again Cora said it perfectly.

  8. Lord have Mercy! That is a lot to consider. I agree with Shirl - the most crucial factor is what will give you the greatest chance for the longest survival. Everything else is just bra filler.