Point and Click

 Well…. let’s start with the good news, I guess?

I survived my final round of chemo. I switched from Claritin to Zyrtec for the pain, and it was much more tolerable this last round. My energy levels haven’t been that bad, and I’ve even been able to do a couple of mini-workouts for the first time in at least 8 weeks!

My hair is starting to grow back (though my eyelashes and eyebrows are falling out). Some of my swelling has gone down. My fingernails and toenails did not fall out. I never had any mouth sores. So far, I have no signs of peripheral neuropathy!! (This is a big one because most people do and it can have long term consequences.) Overall, I did very well and am having a smooth recovery.

I finally met with the radiation oncologist today. This is where the good news stops and the shitty news begins…

First of all, there is absolutely no reason that he couldn’t have given me my plan when my oncologist set up the referral several weeks ago. In fact, there’s no reason his nurse couldn’t have given me the plan when I called to ask about it in the first place. Nothing has changed, and no imaging was done (or anything else) prior to meeting with him today. He had the information all along and has always known what his basic plan would be. I was completely blindsided today when I could have easily gotten the news long before now.

Prior to chemo, I was told by my oncologist that my risk of distal recurrence (metastatic/terminal breast cancer) was around 30 percent, and that if I did chemo plus hormone suppression that risk would drop to around 11%. I then asked her what my risk of local recurrence would be chest wall, skin, etc.), and she said it would be “negligible- next to nothing”. I asked if she thought I would have to have radiation to my chest, and she said “oh no, I don’t think so”. I also spoke to my GP about this, because radiation higher in the chest (for lymph nodes by the clavicle) can exacerbate preexisting thyroid issues (which i have) or even create them. Granted, she’s not an oncologist, but she said she was not concerned at all that I would be having any radiation that could be problematic for my thyroid. So, this is the assumption I’ve been under the whole time, and was just waiting to find out how long my treatment plan would be. The radiation oncologist initially estimated 3-6 weeks.

Today, he said that I have a FORTY (!!!!!) percent risk of localized recurrence (!!!!)- in spite of the mastectomy, in spite of the clear margins, in spite of the chemo, in spite of the hormone suppression… He said I have to have radiation to my chest wall, supracvavicular lymph nodes, and axilla (armpit- which was the only one I was really expecting). To make matters worse, he said I will need a full 6.5 weeks of radiation at 5 days per week! He says all of this will reduce my risk of local recurrence to 15%. He also said that the tissue expanders will make it harder for him to get to the chest wall, and I may have to have the left one deflated.

OMFG…

Luckily, scans determined that the left one will not be in the way or affected. However, radiation around the implant on the right side will likely cause the skin to contract and affect how great the reconstruction looks, which, of course, sucks.

I am fortunate that the cancer was on my right side, so my heart will not be damaged. A small portion of my lung will be hit, so I could end up with damage there. The skin and muscle around the areas receiving radiation will most likely toughen and tighten, which could be bad not only cosmetically, but for the range of motion in my right shoulder and pecs (which were already compromised before all of this, and which had already worsened after surgery). 

I’ve been reading a lot lately that they have been doing less radiation in an attempt to avoid over treatment and long term side effects, but Dr. Lee made a big point to show us the “official guidelines” that are “by the book”, which he printed out. He commented that he was sure we could go out and we find someone who would tell us what we want to hear, who has “paid for an affiliation” but has not received an “accreditation”. I didn’t really care for that, because I don’t think that’s it’s always the case that younger doctors who are applying new studies/information to their care are just telling people what they want to hear or who are just unconcerned about doing a good job, but I guess that’s his take.

Regardless, I’m stuck with this guy because he’s just up the street and it’s not practical to drive to Indy 5 days/week. I have, however, inquired with the surgeon who did my mastectomy to see if the tumor board also assumed I’d be doing the whole shebang or if they thought I’d just be doing the axilla.

I start on Thursday, May 26th. I have to go for 33 days, but there are a couple of holidays so I think I’ll finish up on or around 7/14.

Yippee.