June 2012 Radiation Rads

Neeners - don't be embarassed!  If they didn't tell you it was a 'dry run', how would you know?  Some places are very good at explaining what is going on, and others don't give you a clue.  I sometimes feel well informed, and sometimes feel clueless.  Thank goodness for the women on this site to help, otherwise I would be pretty lost (and my DH is a physician).

Nel,

My RO said no swimming until at least 1 month after Rads are done and skin is healed.  He doesn't want me in a chlorinated pool, he doesn't want me in unchlorinated water and he doesn't want me in the sun. 

Neeners815, they didn't tell me until I asked.  I used to "water walk" most days.  The radiologist didn't want me in the pool after the biopsy, the surgeon didn't want me in the pool after the lx, the ro is just continuing a theme.  I sometimes think I shouldn't have asked, but I don't want to impede my recovery so...

I am going to verify with both my RO and MO to make sure about doing both the HT and Rads together. I feel the same way that 5 years is a long time and just want to get it started. But am now a bit concerned about the heat, hot flashes, etc together with the rads and we are having super hot weather already here....it's going to be a hot summer and from the sounds of it a potentially stinky one...Oh boy!



My RO said the same about swimming, he said the chlorine will damage the skin more and possibly make it peel. I did read that you might be able to use Vaseline on your skin to repel the water, but not sure if that would work. I think I am going to put a kiddie pool on the patio to get some coolness and pretend I am swimming..haha! I live on the water and own a boat tour business so this has so disrupted my summer enjoyment plans! It just means I am going to do double duty next summer!



Hope everyone has a happy and positive day!

It's normal to feel overwhelmed, I was. I just finished rads last Thursday and it was all doable. Take care of your skin and try to get as much rest as possible. The worst part is the few minutes needed to take measurements and adjust you, if need. The actual radiation is over in a minute.

Just finished the planning session. Was supposed to start rads on the 18th but because the machines are booked out am now starting until Tuesday 26th June!!!! Since I finished chemo a week early that will be 4.5 weeks after chemo finished. I'm really not happy about this since that takes me outside the usual window for starting. Has anyone else had this big a gap?



The RO didn't seem too phased by me already having pneumonitis but has organised for me to have a lung function test the week before I start rads and then every week during. It was all so busy with marking etc that I couldn't ask any questions about that but I now have several and will email her in a few days. The main ones are "why on earth I am doing these if she is concerned enough about lung function to test it?" and "what is now the likelihood of me being left with serious lung damage at the age of 47yrs???".



The tatoos weren't too bad and I insisted on them using a new marker pen on me that they then gave me to bring back each day. I was surprised to be told that despite the tatoos they still mark you everyday. What was the point of the tatoos then huh?



Jenn

Scottiee1:  I'm using a breathing machine (resembles a respirator or even a scuba breathing apparatus) for each of my treatments, to give me space between my heart and lungs and the tumor site.  I have to breath is deep, then as I start to breath out the machine "stops" me and holds my breath (for 25 seconds) at a certain point.  They wanted it at the same exact point every time, and didn't want "leakage", so I'm using this machine.  It's a little weird at first (I've only had my planning session, I start next week) but not too uncomfortable.  I'm sure, by the time I'm done, I'll be used to it.

Hoping I will be in June...  Everything is delayed now because the hematoma I had opened my incision.  Now have to wait for that to heal.   Still hoping for June so I can get this party started!

Neeners815 I do beleive the tatoos save time they line those up and measure during positioning without them I am not sure how they would do this. With you on being proactive with oils,my nurse at first meeting wouldn't give me anything she  wanted to wait till I needed it.So I went and got Aloe ,Emu oil,and Aquaphor and started on my own ahead of rads and when I told her 6 days in she was all "Oh No we don't want you using anything we don't give you" well I said "you wouldn't give me anything so I got my own" Then she says Oh that was an over site on my part I am sorry" Say what? I specifically asked for it.I am not sure if I even like what she did give me after that,Its called Aloe Vesta.I have looked at the ingredients and I don't even see Aloe on the list only in inactive ingredients as last listed as Aloe Barbadensis leaf juice .The main ingredient is  Dimethicone which I have to as yet look up.I haven't been using it as I like the pure aloe and Aquaphor better. Heck I have an Aloe plant and may also just use this.Maybe I will look it up today.I am down 8 treatments and so far doing ok with this,though I know it is early

Hi everyone,

Jumping into your June Rads group. Finished up chemo 6 days ago and still feeling kinda punky from that... but I realized that I hadn't even begun to think about/reseach/contemplate radiation therapy yet b/c it all seemed soooo far away. Now, here I am! I've gone in for my CT sim and tattoos, I still have to go back for the "dry run" I guess.

I'm entering a study they are doing at the University of Pennsylvania for radiation therapy. You can be placed in either the shorter 'arm' that does the Canadian course or the longer, more traditional US approach 'long' arm. I am really hoping to do less rads but I haven't found out yet what I'm doing.

Looks like my start date is: 6/25. I could be finished in July or I may go into August... looks like a long summer

Good news from my MO this morning, the mass was benign - just like a lot of you experienced as well!! So happy that I can start rads this month and should be finished in time for my vacation in August. But from the looks of it, NO swimming!! Bummer.

So my simulation is Thursday, then from what I gathered from Neeners, there is yet another appointment before rads begin, correct? And I already purchased Aquaphor, but the docs office will be giving me some?? Darn it, I already opened my big tub so I can't return it.



Hi Janiemom! Welcome and sorry about the chemo. My doc said I could go with the Canadian course but he didn't recommend it. Good luck!

I'm left-sided but at the mapping they told me I wouldn't need the breathing thing and they didn't make me hold my breath either.  They told me my heart was 'beautiful' and not in the way, and indicated lungs were fine too.  I haven't had the dry run yet, so don't really know what they'll do.  I have to say that I wasn't prepared for 5 tattoos, though.  Seems like everyone else got 3 at the most.  Luckily they made the one in view when wearing V-neck shirts the smallest.  I know most people wouldn't know it was a tattoo for rads, but still I see it and think everyone knows that's what is there for.  Can anyone tell me if there is anything we need to do/not do before the first dry run?  I figured no deoderant, no lotions, no anti-oxidant vitamins, but is there anything else?  They failed to inform me and I was so anxious to get out of there that I forgot to ask.

I have my simulation Monday, June 11.

I have read this entire thread to help bring me up to speed.  I have grave concerns about lung/heart because this in on my left side.

First, I was supposed to have the Mammosite balloon.  It was a no go because it was too close to the skin.  I hope this means that the focus of the rads will be more toward the surface and not deep near those other organs.

Bali has a line of cotton, no wire bras that I have worn for years.

BC.org has good articles on radiation.  They strongly suggest the corn starch baby powder.  Skin on skin causes erosion of the skin.  This means your arm, your other breast and under your breast.  I checked there as it is a place I never look.  The powder I got has aloe and Vit E. and I have found it very useful already.

Supposedly, I have 5 weeks of rads coming up.  There is also a choice of 3 weeks.  I don't know the difference though I suspect the dose is stronger with the 3 weeks.

Since I have DCIS Stage 0, Grade 1, hormone + and am 76 years old, I would like to forgo radiation alltogether.  I really want the Oncotype test but no one will order it for me.  This test became available last Dec. for DCIS. I have a 80% of dying in the next 15 years with or without further treatment.  I don't want the cure to be worse than the disease.

I will report back when I have any news or informaiton to add. 

I am not a happy camper but I appreciate you ladies sharing your experience on the awful journey. 

In regards to the tattoos, my RO told me not only are they there to mark for thechnicians, but in case there is ever the need to go through radiation again they inform other doctors where we have been radiated in the past. He said he knows when he sees them he knows where the line is drawn. Hope that gives some more comfort as to the purpose.



I am so glad it was mentioned about holding breath for the left side, since that is my side also.



I still don't have a start date yet, waiting on insurance approvals. This has been my biggest struggle thus far. It's so frustrating to me because I feel like I am in limbo and it's out of my control. I am trying very hard to practice patience, not one of my strengths.

I wanted to ask, is the position you take always lying down on your back?  I would think that a table with the boob drop, like getting a core biopsy, would be better.