Winter rads 2014-2015

Hi all;

I'm 30 days post surgery, have my SIM on 1/9/15.  

Saw comments on tee shirts.  Is that for clothing preservation or to protect/ sooth skin?  

Lotion information?

I'm doing 35 rads.

A little nervous but ready to get this finished and behind me!

Your BC sister 

Thanks Coyote NV!  

The various forums have been a life saver.  I'm grateful to be able to share and for the help and support!

Thanks for the updates on plant aloe! Didn't even think of bacteria. . .The winter warriors list is a wonderful idea also. Love to see all the Warriors done with this part of their battle.

Nap time!

I didn't know anyone had replied to my post a few weeks ago - sorry about not catching that. Anyway, here is an update.

I finish my last treatment Monday, Jan 5th 2015.

I have had atypical skin reaction that normally is not seen in a 16 treatment patient, from the very first treatment. Last Monday, RO suggested OTC hydrocortisone with aloe. I'd already been using Aquaphor. The steroid cream does seem to help the skin inflammation aspect, but I had to delay using it until after an ACTH stim test.

I see RO again on Monday after treatment, so we'll see what she says about the reaction then, which has not alleviated and is actually much worse than it was last Monday..

The skin reaction has spread down below my breast onto abdomen (I was going to write trunk - but I'm not an elephant )...now it looks like someone tatooed red dots all over the treatment area and beyond. Half my armpit is tanned now (that is so funny actually - having half a tanned armpit)

Now, those recommended tube tops - I had to ditch those. Affected breast with all the inflammation is um now larger than the other and the tube top was very irritating to me. I switched over instead to camisoles.

RO has handled me as though I have scleroderma, even tho I have the cousin AI Sjogrens, so my treatments were spaced (thanks to the holidays) 3 treatments one week, 5 the next, three the next, 4 last week and of course the last this Monday.

Initially, a lot of fatigue after treatments. But not after the last few treatments. I actually have gone hyPOthyroid since starting treatment which is weird.

And really other than discomfort from the skin reaction, hasn't been that bad really.

But I did not do well using the tube tops. Grossly uncomfortable. Maybe I got the wrong kind. But camisoles I found much more comfortable.

I'll update after RO and treatment on Monday. The early and persistent skin reaction is disturbing. Other patients I spoke with at cancer center with many more treatments than me had minimal to no skin reactions even with 30+ treatments

All you ladies that have rads to your left side, I need some reassurance! My RO said that if anybody told me they wouldn't get any rads to their heart they were lying. She said everybody gets refractory rays. I'm so scared they will hit my heart or descending artery! She said if the cancer returns it is automatic mastectomy. I told her I can lose my breast but I cannot lose my heart function.

They created a mold so my arm rests up by my ear (I had an accident in August and my left shoulder was replaced). I only have the deltoid and the pectoral muscle left so I told her I was also concerned about the pectoral muscle. She said they would be hitting it so to take a percosset and be prepared for going back to physical therapy!

I know these doctors have to be matter-of-fact but I'm scared to death and she's acting like it's no big deal. I know since I go to Sloan Kettering I could ask for another RO but how do I know the next one will be any different? Do they show you the scans so you can see they aren't hitting your heart?

Am I being ridiculous not trusting my RO

@Nancy

I understand your concerns.

My RO told me up front and on the table there was a risk of scaring to upper left lung and possibly heart. No mention was made of any impact on pectorals, but then I didn't think to ask about that part. I was given to understand that they were going to direct the beam as best as possible to minimize or avoid getting lung and heart. I know they have made three adjustments during treatment.

I decided to risk it since I was getting preventative Rad rather than treatment rad - and I won't be getting a boost. But it's still scary when my treatments were half done and the tech said the total dose spread out over 16 treatments was 5,000 centigrays. I have no idea if that is considered low dose or high dose. Just sounds like a lot.

I do think it's problematic when you feel you can't trust your RO.

Can you speak with one of the others about your concerns?

There's nothing wrong with doing that. I'd encourage you to do that actually.

Hi Nancy6540,

From what you wrote it does not seem to me you have an insensitive RO.

In fact, it seems she is concerned.

She is not painting an untrue, rosy picture just to calm you.

She is answering with what she believes to be the truth.

She is preparing you for what may lay ahead.

Better to know your pectoral muscle may be affected than be told, oh, don't worry about that because it won't happen (when it will).

By the way - I was also concerned about my heart.

As far as I know, it seems to still be beating!

So, to me, it seems your RO seems trustworthy. And, she is answering your questions and listening to you.

CoyoteNV... I was supposed to start on Dec 29th but now it is Jan 5th.... Nervous, but am armed with Aquafor, calendula, aloe Vera gel, camisoles, cornstarch , makeup brush... Am I missing anything

davida58, I believe the tube tops are for post surgery but too tight for rads. It was maybe tank tops and camis and t-shirts that are recommended - loose, no friction is what you want.

While I have asked many questions, I have not asked about rads and my heart and lungs. I need the rads and just trust that it is a good center with careful staff and they are doing the best to avoid other damage. I figure it is a risk I have to take. I did ask about holding my breath and they said I didn't have to, so I try for nice steady shallow breathing.

Sorry Cath, I think you said that. I noticed that I moved you to January, but didn't change the date. .  

Lefties - I know that I repeat myself here.  As an aside, my MO believes in chemo brain.  I did not have to deal with the left side issue, but asked my RO about it because of the concern of so many of my friends here.  He said that the equipment used at his clinic has the ability to avoid hitting nearby tissues.  This was also the answer to my question regarding thyroid damage because my treatment went over my collarbone and up the outside of my neck.  The beams are sent in high numbers as tiny points in whatever coverage shape they set based on need and the CT scan taken at simulation.  There is a long way from the scientific explanation and what I have written here.  This is based on by interpretation of what he said.  We did not discuss refractory rays. 

Oh yeah, I forgot to tell you about the conversation I had with the local PT.  They've never heard of cording and breast cancer issues.  They said that they could research it and get back with me. Hmmm.  I'm not sure that I want to be the experimental model - and pay for it.  They only bright spot in that one is that it is nice to know that I'm not the only person out there that's ignorant on the subject.

Hello! Looks like I'm going to be joining this group. I finished chemo in sept, had a double mastectomy in October and thought I was done besides my continuing Herceptin treatments until my MO wanted me to just talk to an RO to be safe. Apparently I am in the gray area so to be safe I'm going forward with the RADS. I'm not happy and definitely scared. Mostly of the late SE. I have mapping Thursday and have my first treatment (of 28) on jan 12th.

Hi, looks like I am beginning the Winter Warrior battle as well!

I started radiation treatment on Dec 30th.  Had a short first week with just 3 treatments due to the holiday, so thankfully no skin issues yet.  I am using a GlaxalBase moisturizing cream, based on the hospital's recommendation.

I have found it very helpful to read all the information/advice posted on this forum.

thanks!

Pita119 I was thinking the same thing. I have 11 tattoos. Where did you go for treatment

Welcome to all our new rads friends. I'm sorry you are needing to join us, but it is a good place to be. So many questions my RO couldn't help with have been answered here and the support is wonderful!

Question for those who have finished - how long did it take for SEs to get better? I will have my last treatment tomorrow and plan to return to work a week later. I work in a special needs preschool room that is high energy and I'm wondering if one week will be enough. I need to plan ahead to get a sub set up if I need more than just one week. I don't like just sitting around and would prefer to return to work, but don't want to be unreasonable either.

Thoughts?

Sigh.. it seems such a little thing in the big picture.. but my poor old right boob looks like its 105 years old after a weekend break.. when the swelling goes down a little ..rads make it swollen..doesnt look so bad THEN.... its very lumpy of course and puckered and just weird looking... Im having a bit of a pity party for myself..i know! but its like tough to see sometimes.

Meanwhile..not doing too bad.. some stabbing pains in the seroma area on boob.. the under arm seroma which oncologist said may get worse. has actually been stable.. aloe and lavender soothe it somewhat.. and a cloud of cornstarch put underneath with a makeup brush.. well i've been doing that from the start. Went swimming last week (i do triathlons)..and had a moment in the changing room..it was like fear...because its been so long..along with a healthy does of 'chlorine fear'..wondering if to risk it or not... however slahtered with vaseleine to give myself a barrier..did the trick.. but then i was worried about leaving an oil slick lol. the 'fatigue' HIT ME last week.. hard. but headed my body going 'for the love of god women...please stop'..so i did. I must admit i get up every morning feeling not so good emotionally.. i think the weathers not helping that either... anyway getting on with it... still one foot in front of the other.. i think im depressed.... and still very much dreading tamoxifen.