Summer 2015 Rads

Hopeful82014

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.

ksusan

There may be no reason to wait, but I know I was told to postpone other imaging due to the cumulative amount of radiation, so I want an opinion from a doc or elsewhere!

I'm in radiation and still ambivalent about it. The chance of developing LE from it is far higher than the benefits to me in terms of recurrence and mortality. On the other hand, as my wife says, "Lymphedema is a lot less likely to kill you than cancer is," which is blunt but true.

queenmomcat

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?

ksusan

I was told by both MO and RO that the amount of lung capacity lost wouldn't make a noticeable difference, even though I have asthma. I'm not a hard-core athlete, though, and don't know what effect it might have in that situation.

molly1976

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

queenmomcat

Phew! though to paraphrase ksusan's wife, "which is less likely to kill you?". Still goiing to ask the RO on Monday, though.

Hopeful82014

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.

Darumama

Anyone else using Prutect? Doc gave me script for this today but my pharmacy had to order it so I haven't tried it. He wanted to give me silvadene but I am allergic to sulfa. Hope my insurance covers this one.

Skin starting to appear angry red.

Hopeful82014

I'm sorry your skin's giving you grief. How many treatments in are you, Darumama?

Prutect is a new one to me and I hope it works well for you.

Sending cooling thoughts...

JenH2015

My RO said that I would have some scarring in the lungs, but that it would not impact my breathing and that the scarring would heal. She also told me that the ribs that were in the field would be weakened - but once again, not something that would likely produce any noticeable effect. On the question of risk/benefit - that is definitely an individual choice - your age, your diagnosis, etc. At 49 with two teenage children, my priority is to minimize the risk of recurrence - and am willing to accept that the treatment could cause side effects or even cancer down the road. (I had a grade-3 HER2+ tumor so, even though I had clean margins and no lymph involvement, I want to give myself as good a chance as possible of making sure I have it all before I stop treatment.) I am definitely not crazy about any of the treatments - it seems crazy to pay someone to poison me (chemo) and the radiate me, but I am glad I am able to get the treatments and hope that they will work and I will not see the cancer come back.

MizMimi

@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. :

Hopeful82014

MizMimi - Are you going to be using tamoxifen or an A/I? That will enter into your recurrence risk, too.

While intellectually I HATE doing RT I realize I would probably be stupid not to, and that's what some of this comes down to - avoiding a stupid mistake, choosing the best alternative from an unpleasant list of choices.

You are asking some good questions and I hope younget the info you need to make the best possible decision for yourself. Avoiding recurrence as IDC is HUGE. Good luck sorting through all of it.

MizMimi

@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.

april25

I just had 23 of 35... Starting to get pink/red... I just saw the RO yesterday, but wasn't as pink... When do you start asking for something stronger than otc creams and lotions? I guess I should ask the nurse tomorrow... It's not a bother, yet, but I'm definitely starting to get that "sunburnt" feeling (no pain, but it's more tender and irritated than normal).

---

Yeah... with Grade 3, HER2+ (even if it's only slightly more positive than equivocal), and with a LX, and not getting a complete result with my path (although clear margins and nodes were good!), I figured rads wasn't really something I could skip. I'm getting the full treatment already-- chemo, rads, targeted, hormonal... and I already had the chemo, which was the worst... so I'm just gritting my teeth and getting through it... and hopefully things will pan out. Or not. But what can you do?

I also have my rads on the right, so worrying about the heart is one thing that is out of the picture. The rads can still affect lungs on the right, though, couldn't it? I wasn't told about that, if so. My doctors tend to just say "you're doing this" and aren't great at answering questions, but I'm rather bad about asking them, so it's not all their fault.

Hopeful82014

April, that happens to me, too; I see my RO one day and she says I look great and the next day there's a noticeable change! Not that mine is anywhere near bad yet (knock on wood) but it's still early days.

You're so close to being done! It must feel great to see the end approaching. Do ask for something TOMORROW - don't suffer over the weekend!

MizMimi, that's too bad about the hormonal therapy; you might want to get a 2nd opinion on that...

SweetHope

I loudly complained that the radiation field included my left lung and some ribs. RO said that was the only way to avoid the heart. Begged him to move the field off the lung. He said no, he needed to be sure the chest wall was fully radiated.

Rads ended two weeks ago yesterday. Cough started last week of rads. Having tests run for suspected Radiation Pneumonitis. I'm on seven Rxs. I won't die from this, but I sure feel bad.

Hopeful82014

Oh crumb,SweetHope! I am SO sorry to hear that. Rest up and get better soon.
Hugs - Julia

DianaNM

I actually went to see my surgeon again, to ask if I could have another mastectomy instead of going to rads. She said it was really not a good idea, but I could get a second opinion. Said there was no way to avoid the mess I have on the right side, because of the way my lymph nodes are arranged. Guess I'm weird.

Felt like a decision between the lesser of two evils. But off to Scottsdale I go, on Monday.

Sweethope, they kind of had you with that one errant node. Hope you feel better soon. What meds for radiation pneumonitis?

I think there's been some discussion of this, but during treatment, continue taking probiotics! No research says that RT harms the good bacteria, but keeping it healthy sure can't hurt.

littleblueflowers

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

ksusan

SweetHope, so sorry!

queenmomcat

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

Hopeful82014

Queen mom - It sure does! I feel like that should be over the entrance to the entire Center/Hospital.

knittingPT

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!

Hopeful82014

Way to go, Knitting PT - and I'm also very happy to hear that the cording is resolving well along with your skin healing. How's the boost area holding up? Do you see/feel a difference there?

Enjoy your weekend and your little break. You've certainly earned it the hard way!

ksusan

Thanks, knittingPT, and congratulations!

Hopeful82014

As of today - almost 1/2 way through (17 out of 35).

Wishing everyone a great weekend. Stay hydrated!

ksusan

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

queenmomcat

I can't remember what I've asked where at this point but I'm scheduled for an intake appointment with my RO on Monday, and just for starters wondering about the 120-minute slot allotted. What do they do that takes two hours? (my husband teased me that I've been flagged in the system as "patient who asks too many questions")

But more specifically, what do you all wish you'd asked? A lot of this depends on my own case, to be sure.

Midgiemoon

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

MizMimi

queenmomcat-- Take someone with you to take notes or record your session with them. I should have done that but Hubs is out of town and didn't ask to record and now I have to have a phone consult to review again.