Summer 2015 Rads

MizMimi - I'd be surprised if there were ANY of us who weren't nervous! The best advice I can give is to use that nervousness to develop a list of questions for your RO and to think through your priorities.

I was VERY concerned about left sided radiation. Fortunately, my simulation scan showed that my heart would be completely out of all of the fields. Two ROs were very straight with me that I would be losing some lung capacity, which is very sobering to hear. I really struggled with the whole issue of RT, even though it's seen as a given with a lumpectomy.

In your case I think you would be wise to get at least 2 opinions and as very hard questions. Don't accept, for example, that it reduces the risk of recurrence by X percent. Instead, ask about YOUR risk of recurrence (percentage-wise) and how RT would change it. (If your risk is 4%, reducing it by 50% to 2% may not be enough of a benefit for you - or maybe it is.) Ask WHY - why are your making this recommendation? What is your reasoning? What are the risks?

I don't think anyone ever gets to the point where they are TOTALLY comfortable with the idea of doing RT but you can reach a point of acceptance of whatever course of action you choose. That is what you're trying to achieve. Good luck!

Ksusan - I've never thought about waiting for a dexa, nor have I read anything about it. Frankly, I can't see that there would be any issue but I'm not a professional! Now I'll be curious to see what you learn.

Hopeful: losing lung capacity? eek! That's something I'll have to ask my RO on Monday; one of the reasons I wanted to have an intake consultation as far as possible in advance of starting the rads. (See, Mizmimi, I'm still learning too.) And one of the reasons I'd been reluctant to get a mastectomy--I wouldn't call myself an athlete, but swimming is important to me, and i wasn't sure how the various reconstruction surgeries would affect my long-term range of motion or spine stability.

But do we ever fully accept the treatments?

My RO said it shouldn't be significant. She has marathon runners who were able to continue with no issues.

Each woman's body varies so what's true for one woman (heart, lung issues) is not necessarily true for another. Some of us, too, have a greater number of treatments to more fields than others. That affects the amount and location of damage.

And, no, Queenmomcat, I think we ever do fully accept the treatments. Or at least I don't. I do them, but it doesn't mean I like it.

ksusan - interesting point about the amount of radiation. I'm due for all sorts of imaging in the 6 weeks following end of radiation, so will have to check up on that. Thanks for raising the issue. The dexa (as you probably know) targets usually just 2 points on the lower body very briefly so I wouldn't have thought twice about it. And my MO is not terribly forthcoming with info like that at this point - just one of the reasons I plan to change MO's if/when I can.

@Hopeful8201 Thank you for your reply! I have had 3 doctors (2 Breast Surgeons, 1 RO) tell me that lumpectomy with rads is my best option.

The RO is going to be calling me tomorrow and I will ask him again to explain why he isn't recommending the Canadian Protocol, why he isn't concerned with my benign appearing thymic cyst, and what my percentages or recurrence are again.

Although, I think he said that the best time to gauge recurrence % will be after the pathology is complete from my surgery.

@JenH...thank you for your story. I appreciate it. I understand why you feel that way. I don't have kids but I sure as heck don't want this to come back in any way shape or form.. or have heart/lung issues, either. Although I don't have invasive cancer, if my Grade 3 DCIS returns, it is most likely going to be invasive, according to my doctors. :

@hopeful...no I will not be put on a hormone therapy. Even though I am positive on hormones they said it was only 5%. She doesn't see that I will get any benefit from tamoxifen or any similar therapy.

Nuts sweethope! They warned me that could happen...hope u heal quick!

Diana: lesser of two evils pretty much sums up a lot of this, doesn't it?

Hey friends! I have ONE more boost on next Monday and then I'm done with radiation (32 total . . . we decreased boosts by 1 and increased dose of each one). My cording has almost resolved and my skin is looking/feeling so much better since I started the boosts (my armpit was the problem area and once we stopped radiation there it is healing up nicely).

Someone asked about bone density testing. I'm having mine done next Tuesday just after the end of radiation. It just worked out that way with my schedule and theirs. They said I could do it during radiation and that it didn't matter. I will have my oophorectomy on Aug 5 and then will be on an aromatase inhibitor (I forgot name of the drug . . . will see MO again in a couple of weeks). My period "restarted" a couple of weeks ago after being in "chemopause" since last November. They gave me a shot of zoladex to tide me over until I have my surgery. After seeing (and feeling) the size of that needle, I was even more certain that surgery was the right option for me! I am feeling so much better now and am happy to have a short break before surgery. We will have a little vacation with family in Maine and then surgery and then back to work! What a ride!

Thanks, knittingPT, and congratulations!

Good stuff, Hopeful. Me, I'm like a giant walking bag of water and protein.

You should ask about how many treatments, including boosts you will need. I also asked about physical activity, and whether I could keep spinning and enjoying my physical routine. Also, ask if they can give you an overview of SE's and when to expect them. My consultwas 90 minutes, but it took just under an hour. My RO have me the overview, but it wasn't until I was set up for the simulation that my detailed questions arose.

That's when I asked my rad techs about the details of the treatment, how the machine worked, etc. I felt really prepared because of what I learned here!

Best of luck!

~midgie