Summer 2015 Rads

QueenMomCat - Ask about how many fields, how many boosts, short term SE and late effects, level of activity, whether you can continue what supplements, nutritional advice, support services, skin care protocols (including SPECIFIC product recommendations. Ask about where and when you can expect to see greatest effects. Ask about YOUR SPECIFIC SITUATION; how does she expect YOUR skin to do.

You can also ask about female techs and markers vs. tattoos if those issues are important to you.

Probe as to why s/he is recommending the treatment plan in question and make sure you are o.k. with it to the extent possible.

Make sure you get phone numbers for any urgent after-hours needs and ask about the protocol.

Ask about parking; my center has a dedicated area for RT patients - it saves a LOT of time!

Take a recording device if at all possible so you can review the session later.

Later, after your simulation is done (and they may be planning it for Monday, since you have a 2 hour appt.) ask specifically about your heart and lungs. Ask to see your CAT-scans, etc. It will help you envision your treatment fields, which I found helpful.

Once you are marked up, go home and take photos of the markings!! You will then know where to apply aloe, lotion, etc., in the couple of weeks before the skin starts coloring.

Start moisturizing your skin NOW if you haven't already! It won't hurt and may help a great deal.

I'm sure others will chime in with better suggestions. Don't stress too much - just get your mind organized to make the most of the appt.

Yes - I meant to suggest the tour, although they may already have that planned (I got the tour at my sim.)

Re: bras - I was fine at first with a couple of my nice bras but as time goes by and the tissue swells, they don't fit anymore. I am now limited to my zip front post-biopsy bras. I've tried wearing camis but need a little more support along the scar, so went back to the zip ups. Your experience may differ wildly. Having some feedback from your RO and/or the nurses can't hurt!

It sounds as though you've got things well in hand - go enjoy your weekend!

"What side effects should I call about rather than waiting for my next appointment?"

To know: The ROs mostly don't seem to say this, but your body needs water and protein to get rid of dead cells, and radiation is about making dead cells. Keep up your hydration and protein!

Queenmomcat - yes, just enough that my properly fitted, good bras feel tight. I think some of that is a remnant of post-surgical swelling but I was warned that my breast might very likely swell and indeed it has. My nipple is also much larger and, frankly, uglier than the unaffected side. She assures me it WILL return to normal and I hope she's right!

I will point out that (knock on wood) my skin's done very well so far so perhaps the swelling is simply my body's primary response to the onslaught. If so, it's a trade off I can live with, although I MY very darned tired of these stupid, ugly bras.

As ksusan pointed out, water and protein are CRITICAL. I aim for a minimum of 2 qts per day (not a hardship given our heat waves this summer). Getting enough protein without excess calories is harder. Pea protein is my best friend (after aloe).

Hopeful: Ruefully, changes in nipple appearance on the irradiated breast is no longer an issue for me, but I'm definitely asking about the possibility of needing new bras--softer? a size larger? But this is something I hadn't realized about breast cancer treatment: asking (male) physicians about appropriate lingerie choices. (If this bothers them, they're in the wrong profession.) And for all I know, I may have had enough removed from my breast to counteract the inevitable swelling in reaction to radiation.

I'd thought to ask this in a PM, but I'll ask in an open entry, since others may wish to bow out: may I send what you've told me, with identifying information stripped out, to my husband?

Klanders: 'We seem to have missed something." Oh, joy.

LiveDeliciously: "Puff, the Magic Dragon"? I'd have been annoyed too, and I like Peter, Paul and Mary.

Klanders,
You mentioned you are doing your rads 2 hours away - I have about the same drive to my center (nearest center is 40 minutes away, but I have MUCH more confidence in the facility I am going to.) Are you planning to drive yourself each day, do you have someone to drive you or are you planning to stay over. I am driving over Monday morning and then coming back on Friday (I am fortunate to have friends/family in Seattle who will put me up.) I have to say that I don't think I could do the round trip drive by myself everyday. I started Rads on the 8th - had 3 sessions that first week and have had 5 this week (I am doing the "Canadian" hypo... something protocol, so will have 16 regular and 4 boosts, all with higher radiation rather than the normal US protocol of 30). Already by the middle of last week, I was feeling really tired coming out of the treatments (which are mid-afternoon.) Both Wed and Thursday, I needed to lay down and rest after I got back to my friend's house (both days, drained so I couldn't do anything but couldn't rest). I was sufficiently worried on Thursday, that I contacted a friend part way back to see if I could crash at their house for a few hours if I hit the road and did not think I could make it safely home. In the end, Friday was better than Thursday and I did get all the way home (but was hurting the last half hour.) I had thought to drive an hour to a cabin we have a few nights a week - but, after doing that Monday night, I realized that was not feasible as I just don't have the energy for the extra driving. I know that some people don't get fatigue at all, and part of my fatigue may be caused by the driving and being out of my element, but I also have a friend who did radiation at our regional center 40 minutes away - and she said that she really struggled to drive home safely (took her daughter as it was easier to stay awake with someone to talk to, and sometimes had to take a nap in the car before they started.)

Also - someone was mentioning the issue of hitting lung vs heart - my RO explained that the lung scarring heals well, but that radiation to the heart is much more serious. So it would make sense that they would try to adjust the field to get more lung and less heart.

Metta- that trip to the beach sounds wonderful and is making me smile.

Here's a question for anyone experiencing fatigue: Is it worse on treatment days, or does the fatigue extend into the weekends as well? Is it worse as each weeks progresses, and then worse the next week? Also, are you on the shorter, higher dose protocol or the regular? I just finished tx 9 of 21, with the last 5 being boosts. It didn't seem to take long before I experienced fatigue, but I also have a sinus infection and a separate illness with fatigue as one of the symptoms, so I just can't tell where one starts or another begins. Anyway, it's the weekend, so are you tired? (I adjust meds for that other illness when things get too bad, but I still don't know what to expect re: tx and exhaustion). When people ask me how I'm doing, I tell them I'm fine, but that the whole thing is tiring and tiresome. That they understand. I've gotten some weird questions, too, but that's a different thing altogether.

I admire everyone who can do those long drives, exercise, etc. I figure once I finish treatment, I can start the path back to being more active. Definitely something to look forward to.

oh re fatigue-- most days I'm okay. Some days, after treatment, I feel so tired and out of it it's like I've been drugged. Couldn't even order a Starbucks right. Almost forgot to pay, didn't understand them at first when they asked me for my name. Those days I take a cab home and a nap. One weekend (4th of July) I was so beat I stayed in bed all weekend. That was about halfway through. It's a strange thing, this radiation.listen to your body as much as you can. If you plan things w friends, make sure your proviso is "if I feel up to it" I may cancel suddenly. I really don't know how I will feel day to day...

Dragonists17,

So today is Saturday, and yesterday was 8 of 33 for me. I have been working full time with an 80 mile round trip drive, and receiving my treatments in the afternoon at a center 5 minutes from home. And, yes, I am tired today!

I was good most of this week, but Thursday and Friday were really tough. I almost fell asleep at a traffic light on my way to treatment yesterday. I have been driving myself because of my commute. I am also experiencing a lot of heat in the radiated breast and today I bought a cooling towel. It seems to be helping a lot!

I am off this coming week and staying out on short term disability until early September. I can work half days if I want to. I am trying to walk every day, but I just don't have the energy to do my usual spin classes. My techs have been encouraging me to dial back my work schedule, and now I see why,

I am honoring my body and resting and reading...

Wishing you the best, from my deck!

~Midgie

Dragonista: thank you for asking! My intake appointment for rads is Monday, and fatigue's what I've been most worried about just because I figured that if the doctors themselves mentioned it as an inconvenience then I'd probably feel as I've been poleaxed.

And to answer one of the 'questions I'd wished i'd asked' issues that arose: I got the confirmation letter of that first appointment today...and most of it was taken up by instructions on where to park! So that settles that. (It's not a huge hospital/parking lot, so I wasn't too worried.)

I'm hoping I can schedule my appointments in the afternoon, so I can do the rads and go home and collapse, should fatigue be a problem!

MizMimi: no, I was not given the choice. Frankly, I"m not entirely sure why! Not that anyone's holding a gun to my head, but very clear implication from the MO on Thursday that his pre-lumpectomy recommendation had not changed: lumpectomy/radiation/tamoxifen or mastectomy/tamoxifen.

In fairness, there may be something I don't understand about my own personal diagnosis; as you've found out, cancer treatment's a morass of uncertainty.. Although it's common for patients' diagnosis to change after the pathology reports get back, radiation was always strongly recommended for me.

I'm happy to have found this group. I have had 3 radiation treatments so far out of 20. I was surprised it was only 20 as I've generally assumed from reading about it that 5 weeks is the minimum. They said 16 treatments and 4 boosters. The radiation treatments haven't been hard physically yet nor do they take very long, as you all know, but they have put me in a very bad mood. Trying to get over that, or it will be a VERY long month for me and those around me :-).

I haven't found myself in a grouchy mood during treatment. I think that I have made myself see all of the good things, like the Directv guy who came to my house today'.

He came to do an upgrade, and had to climb the ladder in the pouring rain to make an adjustment to the dish, while he was up there he unclogged my gutter. We had a nice chat snd he wished me a speedy recovery And gave me a hug On the way out.

Not to say that everything is great, and in the past few hours my radiated nipple feels like an infant with teeth has latched on tight, but I just can't help but be grateful for the small things...

I think I'll settle in and overcome the blues and I hope you will too. It's just a surreal world we're living in now so it takes adjustment. I, too, took a trip to see family and relax before starting, which was good . I know these treatments are necessary and that the side effects, when they hit, will be relatively short term. I'm just still reeling from the diagnosis, the surgery, and all the new information and medical professionals that are now a part of my life. My husband is a patient and helpful person but this is very hard on him already so I'm trying to buck up as much as I can!

Ksusan,

No, I am in Carroll Count in Westminster. The picture of the bird is from a trip to Assateague I took before rads started. Love my wading birds!

We get herons here on these hot days, but I haven't seen any yet this summer.

Are you a Marylander?

~Midgie