MARCH 2018 starting RADIATION

danderRN - I am having a lumpectomy tomorrow which will reduce the volume by who knows how much. I saw a plastic surgeon this past week and she was not encouraging re: reconstruction. What kind of reconstruction did you have prior to radiation? That was the big thing for her - she said that the radiation changed the structure of the breast that it wasn't good for implants but might be able to do some small amount of fat grafting to fill in any small dents. And would do a reduction and lift on the other side. To be honest, I don't have a lot to spare! I see so many that have reconstruction at the time of initial surgery that I wonder how it goes for women who have radiation afterward. Thanks for any input.

Gussy

Tomorrow is #8 of 33. I have yet to have a full week of treatment. I am having such a hardback time with radiation, fatigue was almost instant, I was also placed on keflex due to a possible breast infection. I feel like my treatment Days are just that. My appt time is 945 but after making the 100 mile round trip i am to exhausted to be productive the rest of the day.

Gussy, I'm in the same situation. I couldn't have implants placed immediately after mx because the radiation will shrink and tighten the skin around the implant causing the radiated side to look different from the other side. I'll be waiting 3 to 6 months to let my skin heal and then exchange the tissue expanders for implants. My RO friend told me that during those 3 to 6 months I should moisturize my skin as much as possible so that it can be pliable to hold a reasonably sized implant of your choice. I like Palmers Cocoa Butter Oil and apply it right after my shower. The women who have implants placed immediately are probably not receiving radiation.

Tkane, Sorry to hear about the infection and fatigue. The fatigue is a huge side effect. Thank goodness it will eventually go away. Are you being too hard on yourself to be productive?

I sat with the RO and the same SO resident whose been there during my two lumpectomies, and said, again, please explain how DCIS can only live in ducts but you've taken all the tissue you can from the anterior margin, where a duct no longer lives, and yet somehow DCIS still exists. <crickets> No one can answer this question.

OH MAN, KAYWRITE!

This is exactly what I want to know. And honestly, if it's a tiny section, why can't they just nip off that section of skin and sew me back up again? How much could it possibly be? A centimeter? My breast is so banged up at this point, between the core needle biopsy, radioactive seed insertion, lumpectomy.... another tiny scar is hardly going to make much of a difference.

I'll ask the same question of my RO tomorrow and report back!

DoubleBloom: Thanks for the kind words. I hope your first treatment went well. I had a BMX and have tissue expanders too. My PS waits 9 months after the completion of rads to swap in implants. He says that both studies and his personal experience show that to be the optimal healing time. That rads affect the body in so many ways, it takes a long time to heal completely. While knowing it'll likely be nearly a year before I have implants can be frustrating, I'd rather it be done right. And just once. My PS recommends arm and shoulder stretches, especially when lymph nodes have been removed.

My RO is recommending 25 treatments with a bolus. But no boosts. TG. I want to have some skin left. I've already practiced the deep breath hold (aka inspiratory breath hold). I'm still nervous about rads near my heart, but glad there's a technique that aims to minimize negative effects.

Start date unknown. I need one expander completely deflated before scheduling mapping. Bye-bye 65 CCs of volume. I'll be refilled after rads. The way it's been explained to me is that the rads beams come in at an angle across my chest and the non-cancer side expander would get hit. The expander itself should be fine, but skin damage and reconstruction complications could occur. It also could make it harder to be precise if beams refract off the expander. I can't argue with the logic.

Something that occurred to me late in the game: If you're not getting answers to your questions, find someone who will answer them. I had one rads treatment in late November but still could NOT get the questions I needed answered or sometimes even acknowledged. When I was called time-consuming for having soooooo many questions, I went for a second opinion. And got my answers along with the unsolicited recommendation that I change oncologists. I am so glad I listened to myself and my gut. Please listen to yourself. And honor what you hear.

Today I had my planning appointment. I was a little worried that I would not be able to hold my arm above my head -- I've had terrible tightness in my arm since the surgery. I continue to stretch it every day, but it is slow going.

I am so happy with my radiation oncology team and was able to get the time slot I wanted! I start on 3/19 and end on 5/4.

At the end of the appointment, they gifted me a Radiant Wrap (www.theradiantwrap.com) that I can wear for my treatments instead of the standard hospital johnny. It was such a nice way to end an appointment that I was fairly nervous going into. I'm sure my first treatment will be more nerve wracking. I'm trying to keep my mind busy for the next couple of weeks so I don't think about it too much.

hey Veeder,

Not an age limit to the short course, but rather I'm too young by 2 years. At 50 or above, they are more willing to shorten it by two weeks. Basically, they look at age, grade and size of the tumor. I had two of the three.

Reading about what you are all experiencing and doing is super helpful!

After a conversation with a family friend that is an oncology nurse (and knows many of my doctors personally), I called my MO and asked her thoughts on superclavical radiation. My friend's point was that even if my MO didn't have an opinion, she could run it by her partners or the breast conference team that meets weekly in this area. She said that based on my situation, she wouldn't do the superclavical radiation...which is what my eccentric RO said too. So I'm good with that. I, of course, can get a second opinion if I want, but I don't think it's necessary.

Meg - Thank you for the details. It does sound like we are very similar and it's good to know what's ahead!!

I'm all set then for my set up on the 15th and first treatment on the 19th. I need to get some aloe and aquaphor. I figured I'd wait to buy anything else (except some cotton bras maybe) until I need it.

Thanks for blazing the way ladies.

Hi Veeder14, I posted the wrong link. It's actually www.theradiantwrap.com I corrected it in my original post too.

I plan to call my surgeon tomorrow to see if she can recommend a physical therapist. I've never used one before, so I have no idea if they are all capable of helping me with this post-surgery issue.

The radiant wrap looks nice! But with a price tag of $52.99, I'll be sticking to an idea I saw elsewhere, possibly on a different thread on this website.

Take a large (on you) T-shirt. Cut it open in the back - a straight line from the bottom hem to the collar. Sew ribbons on at the collar and a few inches below to use as ties. Or use Velcro. Voila! An inexpensive alternative to a hospital gown.

Tip: Turn the shirt inside out and use a measuring tape and pen to mark the center and where to cut to have a straight line.

I have my materials - all from a thrift store. I found much nicer T-shirts in the men's section. I have a blue Cookie Monster face, a touristy one and one with tattoo style flowers and skulls. Washed in hot water, they're now waiting for me to measure, cut and hand sew on some ribbons.

A general tip for regular hospital gowns and this type: If it ties in the back, tie the ties before you put it on. For many, putting it on like a shirt is easier than trying to tie that's something behind you. YMMV

Thanks for the link -I had not seen these before either. While I wouldn't probably indulge myself at this point in time I think it would make a great gift if I end up with a friend or family member in the same position.

My RO consult is tomorrow and MO consult Monday- looking forward (and maybe dreading a little bit) knowing the next round schedule.