GIANT STICKERS/X marks for radiation to chest wall & supraclav nodes...

[jml]

For all the treatment & surgeries that have come my way on this journey, I've never had Radiation before...
Well, that's all about to change.
PET scans are showing increased activity in a couple of supraclav nodes (1st recurrence to supraclav nodes was last October, chemo'd thru Feb, & 2 NED f/u scans, but now this...)
So instead of chemo, we feel like Rads are a good option.

I had my 1st consult w/the RadOnc (&his dreadful new Resident) last week, then went for my 1st CT/Sim visit.
What a disaster!
I asked repeatedly, "So, what exactly are we doing today?" I asked for more explanation about how radiation reaches the entire chest wall (I thought it was very point specific), would it create problems for my reconstructed tissue/implant?what about radiation spray damaging my teeth?
These are all pertinent, reasonable questions, right?
Unfortunately, I don't feel like I got sufficient information/explanations.
The most annoying part of the whole experience is that in addition to the lack of info, I felt like I was being man-handled - lying on a CT table, arms over my head, strangers opening my gown (including a young male tech-i know, it his job, he sees tons of boobs every day...I, however, don't show mine to strangers, every day) then putting stickers & marking my body.
Mind you, I couldn't feel what they were doing since I don't have FEELING on the L side of my chest!
Imagine my surprise when I stood up, saw the 7 stickers (the size of round bandaids) with big sharpie X's that extend beyond the sticker on my body!
Imagine how pissed I was when I put my sundress back on & discovered that my dress didn't cover the giant stickers w/Giant sharpie X's.
And to add insult to injury, the young, arrogant 2 week old Resident had the audacity to chastise me & say "Jessica, it's not unreasonable for us to mark you for your treatment."
WHAT??
All the other radiation "tatoos" I've seen are these tiny little marks, practically little specks that look like little moles...
What's up with these stickers w/GIANT Sharpie X's?

Help!
Someone please explain & enlighten me!

I feel so naive!

[ElaineM]

I would take the stickers off and then go look for another radiation team as soon as possible. I am rather independent !! Smile !! I would not want to work with such nasty people. You may feel better working with people who want to make the patient as comfortable as possible during the radiation experience. There must be more radiologists near where you live.

[Gerri]

Hi Jessica,

I'm sorry to hear that you are going to have to go through more treatment. I hope that you find someplace where you feel more comfortable.

When I had my radiation mapping done, I too was surprised when the techs brought out the bright blue Sharpie and starting drawing huge squares and rectangles all over my breast (didn't have the stickers). It was explained to me that they needed to map out the various fields with the markers and the measurements were very precise. As I left the appointment, she handed me my own Sharpie and told me to make sure I traced over the lines every day until my next appointment to keep them from fading. The next time I went in for the final measurements (the day before my first radiation treatment), the tech drew on me with blue and red Sharpies. It just so happened that I was attending a semi-formal dinner that evening and was pretty sure that my dress would not cover everything. I told the techs about my concerns and they very kindly wiped most of the markings off with alcohol after they were through. Fortunately, the actual tattoos were (are) tiny dots that are hardly even noticeable now.

Hang in there, I know that is sometimes easier said than done. I hope the rads do the trick for you.

[Sheila]

jml
I find it odd that they want to treat the supraclavicular nodes with radiation...I think I would get a second opinion....I have been dealing with neck nodes for 5 years, and they will not do radiation on mine...thaey told me too dangerous and not successful (and this is more than 1 opinion)
Just wondering as there are many treatments that could be used.

[Brenda_D]

I had a giant road map drawn on my chest during rads, and they changed with the treatment, as it went along. I didn't mind the markings so much.
But, I would have definitely expected answers to my questions, when I asked them.
Yes, it burns my behind when they treat you like a hunk of meat. Hey, I'm a person here!

Hang in there, it will be over soon.

[Kathy S in Tokyo]

Hi Sheila,

I had radiation and zapped the cancer in my supraclavicle nodes and have had no problems with that area since then. That was where my recurrance showed up. It looked like I had half a necklace of huge pearls around the left side of my neck. The nodes under my collar bone all the way to my armpit were affected so this area was radiated but they were very careful to avoid my left lung. I was glad to see the before and after images of the nodes. I had chemo after that to catch traveling cancer cells but was disappointed when spots of cancer resistant to that chemo started showing up in my right lung. I'm happy to see from regular scans that the nodes are all still clear at any rate.

In Japan they are phobic about tattoos; only gangsters have them and tatoos are grounds for non-admittance to spas, pools and a few other places. The radiologists were shocked when the heard that I'd been expecting tatoo marks as they "don't do that" here. They had a dish of scarlett ink and tickly brushes to semi-permanently mark me. This meant that I was a walking Picasso for 6 weeks. Lucky for me it was cool and I could wear turtlenecks.

How are you doing these days?

[jml]

Hi Sheila & Kathy& All~
Thanks for your responses.
I knew I could turn to all of you here for guidance & ofcourse kindness, compassion & support for my griping!
As a salty, 6+yr StageIV survivor, with 92 weeks of chemo, ???weeks of Herceptin under my belt, multiple surgeries, I was quite surpirsed by how much that visit with the RadOnc RATTLED me!
However, I called the RadOnc 1st thing this morning, cancelled my treatments, spoke w/the deptartment Administrator & explained my experience & the reason why I will not be having treatment there.
I was sure to explain that I wasn't calling just to complain, but because I believe it's important for patients to educate & advocate for themselves & must have a care team that contributes to that. And the attitude by the RadOnc team was that my questions were interrupting their job (one response to my question was "I'll draw you a picture later.")
As for how to treat these nodes...
I did have Taxol/Gemzar last Oct'07-Feb'08 & the supraclav nodes did resolve, but in July the same 2 started to look a little active again. Then the f/u PET last week showed slightly increased FDG uptake, so that's why we've decided to pursue Rads instead of returning to TG. At this point I am willing to roll the dice & give rads a try & honestly, I'm happy to extend the chemo break!
The 1st RadOnc was extremely adamant about radiating the chestwall too, but I was never comfortable with that plan, or w/his explanation why we should do that.
Now, after talking to my SurgOnc-who does have the whole of picture of my diagnosis/diease in mind, I'm pursuing a second opinion from a RadOnc.
I feel like I can move forward with more confidence & information & I thank all of you for that.
So, thanks again to all of you for your input & advice.

Keep the Faith~

jessica

[Becky]

Dear Jessica

I just wanted to lend my support too. One thing I really wish I did was I got second opinions on everything EXCEPT rads and I really wish I did get another opinion but just went with the practice that was at the cancer center I was going to.

Hats off to you as at the time I had rads, I figured it is what it is versus medical oncology where they have some drug choices so there is some rationale involved. I was wrong about rads as there are choices and differences there too.

[ElaineM]

Hi,
You go girl !! I love your style. More of us have to speak up. I believe speaking up contributed to my 9 /2 year survival so far.